Member Since:
20 August 2008
Posts: 12

Hello, this forum is for women living with Vulval Cancer, and we hope you find sharing on here of value to you.

Member Since:
4 August 2008
Posts: 4

Hi, my name is Louise Brewer. You can read my story in the "woman of the month" section. I would love to get some forum replies from any other women who are living with this disease. I'm pretty sure that this must be the hardest cancer to mentally deal with and to live with, and a big part of continuing with strength and good health, is the support and networking from others going through the same thing!

I also know that this is the most embarrassing of diseases to be able to talk about (especially in public), but the more we start talking about it, the less embarrassing stigma will be attached to it, and more awarness will be raised to help others in our situation and help some avoid this disease through the knowledge of early symptoms!

I hope to see some replies soon...Louise.

Member Since:
20 August 2008
Posts: 5

Hi , my name is Nicky Popham and I too, had been diagnosed with vulval cancer in Feb this year. Reading louises story was like reading my life since being diagnosed. I am now free of cancer after having a radical vulvectomy in April 08. I am still trying to deal with the after effects of my surgery & also trying to resume some sort of 'sex-life'. At age 36, it was almost unthinkable to have my womanly bits taken from me (which included my clitoris), but it came down to a decision of either having a fab sex life or picking my plot at the cemetary!!!

I underwent surgery at Chch Womans (im from invercargill) in April. I had the wonderful support crew of my partner Wayne & my mum Marie, who kept me 'sort of' sane throughout this terrible ordeal. I also had the priviledge of being the patient of Bryony Simcock & Glennis Cummings, who i would call the current day 'Florence Nightingale'. Glennis is the most positive, amazing person that walked the floors of the hospital. Even at my lowest point, somehow Glennis made me think of the positives in my life. A big thankyou to both of them!!

I would like to thank the founders of the silver ribbon foundation, as we now have people to share our stories with & not feel like we are the only 'ones' suffering from this terrible disease. And a big thanks to louise also, because i really did think i was the only 'young person' suffering from vulval cancer!!

Take care all.......Nicky

Member Since:
4 November 2008
Posts: 14

Hi Louise & Nicky

Well now there are three of us.  I was diagnosed with vulval cancer in October, have had my surgery and three and a half weeks later am pleased to say I can now sit again!!  It's been a difficult time but I am eternally optimistic and have had incredible support from family, friends and the medical professionals treating me.  I was alerted to this website by Dr Ai Ling Tan who has been my specialist and surgeon and about whom I can't say enough positive things.  Thank you Ai Ling for your care, concern and humour.

One of the things I've struggled with the most is explaining to others what is wrong with me.  It's such an intensely private thing and men especially don't want to know the details.  From a work point of view I grossly underestimated the amount of sickleave I would need and am only now considering returning but am worried I might be going back too soon and for the wrong reasons.  I spend a lot of time sitting and driving in my work which is probably not the best for continued healing.

Thank you Silver Ribbon Foundation for providing a discussion forum for people like us who would otherwise feel quite alone.

Wendy Wood

Member Since:
12 November 2008
Posts: 1

Hello ladies...well yesterday I read an article in one of the womens mags about a lady with cancer of the vulva..and it gave me one hell of a wake up call...to be more aware and proactive re doctors visits....you see Ive had whats called lichen sclerosis for more than twenty years now..my clitoris is completley hidden now by a layer of skin which grew over it ..my surrounding vulva, etc is white ,,even my perinium and anal area are now becoming affected..this means itchy itcy itcy...drives me up the wall. I have two types of cream which I take constantly..one for the itchiness and one to aid the healing of the raw areas!!!!. I had my smear at the beginning of the year with my doc of 15 years and he thought all ok  but after reading all your comments I just may go back to the gynacologist who diagnosed me 20 years ago..I had a biopsy with him...ouch ...maybe time for another!! Love to hear from someone ...cheers Robyn

Member Since:
4 August 2008
Posts: 4

Hi Robyn, I am so glad my story in the Woman's Day has alerted you to get checked further! The doctor I had who had the sense to send me for the first biopsies was also suspicious of lichen sclerosis. I hope your diagnosis is a positive, treatable one! Keep us updated, as I am sure your input will also be encouraging to other women!

It has been good to see other posts by Nicky & Wendy- thank-you! I have made a connection through facebook with Nicky, where we can communicate privately about our experiences and progress, and keep updated through the Silver Ribbon Foundation page. Anyone else who would like to connect through facebook, feel free to add me on:

http://www.facebook.com/profile.php?id=1135554446&ref=name 

or come and join the SRF page there!

Louise Brewer.

Member Since:
1 September 2008
Posts: 12

Hi Louise

Well done for being brave enough to go "public' in the Woman's Day - that takes alot of courage!!

How do we join the SRF facebook page?

Good luck to you & all ladies on here.

Best wishes

Lynne

Member Since:
20 August 2008
Posts: 12

Hi Ladies,

facebook - well if you go and join up - just google facebook and you'll find it! then once you have your own profile, you can then join various groups on there. if you search on facebook for silverribbon, or even under gynae cancer, you will find us. you can then search for louise, or use the link above, and invite her to be a friend, then you are free to chat! i am on there too... the modern world!

A very sincere thanks for chatting on here to show other women they are not alone, its very brave, and of course, helps you not be alone too.

Take good care!

Member Since:
1 September 2008
Posts: 12

i think that the thanks goes to you Rachel for giving us this place. :-)

You know i'm still surprised & shocked at how many women i know that haven't gone to see their Dr, even after knowing what i've gone thru. Perhaps i played it down too much & they're not scared by it, then again perhaps they're too scared!

Anyway thank you! sorry for probly posting this in the wrong place!

all good things

Lynne

Member Since:
17 November 2008
Posts: 9

Hi all,

I happened to be reading the Nov 17th issue of Womans day to find the article on Louise -and my heart went "thank god - there are others out there just like me". I have been trying to find a support group in NZ but only came up with UK based ones on the internet.

My name is Moana Uerata-Jennings and I am 32 years old. I have been living with Lichen Sclerosis since I was 12 although at the time they had no idea what I had. I am married and I have two sons and whilst pregnant with my second son at 4 and a half months last April 07 they found a lump and wanted to remove it there and then to which I said you will have to knock me out first. It hurts pretty much all the time so the added pain of an injection of LA would send me into a blubbering mess not to mention a health and safety risk for the specialist administering the injection as my feet tend to aim for the person causing me the pain. I settled for an day procedure to semi knock me out and also to keep an eye on the baby.Once the results came back positive I went in for a 2 hour operation to cut the cancer out. I did this under a spinal block in an attempt to keep the baby safe. Two hours of starring at the ceiling while the male anaesthetist was giving me a runing commentary about what was happening "down below" was definately not how I pictured things going. Thankfully my last

I am under the care of two fantastic specialists in the Wellington area and go and see one of them every 6 months and my GP has regular contact with my specialist in case I run into any problems if she is unavailable.

I have had approximately 6 operations to remove the white fused skin that the lichen sclerosis causes in an attempt to resume a normal sex life and reduce the itching and inflammed skin. I have also tried the steroid injections and even injecting my own fat from another part of my body, liquified and injected into the vulva in an attempt to plump it up again. I am told my next and only option left is a full vulvectomy but am hesitant to do this as I am not recovering as fast from my operations as I used to. My husband has been very patient and accommodating on my good days but things have slowed down since my last biopsy in April of this year.

Thank you again Louise - it's a very brave but fantastic thing to share your story with us.

Member Since:
20 August 2008
Posts: 12

Hi Ladies,

Glynis at CHC Hospital has emailed me a  new UK website that i think you will like - www.vhac.org. They have a vulva health telephone helpline! A video for self-examination, etc. I have added it to our links page too.

Rachel

Member Since:
21 March 2009
Posts: 29

Hi there - Im another young one who has it - or at least has pre-cancer.

I'm 34 and for the last 8 years I've had that nasty, at times unbearable itch.  I had seen various doctors over the years - and when I had smear tests I always asked them to have a look at it just in case they could enlighten me as to what it was.  I was given anti-fungal cream twice, and also told it could be eczema and psoriasis.  Not until last year was I refered to the hospital.  My appointment came up after 8 months of waiting and I went into the appointment thinking I'd be given some cream.

3 biopsys later (and man do those injections in the vulvar hurt!)  and a week of unspeakable worry (mostly for the future of my 9 year old daughter) and rollercoastered emotions I was told that it was just pre-cancerous stuff.  Im still waiting for my appointment in 2 weeks to hear what exactly my treament will be but they have told me that they will excise the area (it's quite large - maybe an a couple of inches in circumference.)

I had never heard of vulvar cancer - and thank you all for your posts - it's great to hear about local stories and experiences. 

Is there anyone out there who has had a wide area local excision of the vulvar?  How long will recovery be like?  At the moment I am pretty clueless but just grateful that I have been lucky enough to hopefully have caught it in time.

cheers

Krista

Member Since:
4 November 2008
Posts: 14

Hi Krista

I had a large area of vulval exicision in October last year.  For me it was an area about 6cm long and 6cm wide.  The excision included a rotational flap reconstruction which sounds worse than it is.  It was done under GA and took about an hour and a half.  It's all healed well and although I have a scar, it's not visible to anyone. Recovery took longer than I thought.  I was in hospital for about a week and although it was recommended I take 6 weeks off work I took 3 and a half. I'm also a lot older than you (54) so you will probably heal faster. The hardest part for me was being able to sit comfortably again.  I tried all sorts of things like rubber rings etc but nothing was really effective.  Lying on my side was the most comfortable position.  It's also good to let air get to the wound to allow it to heal so if you can lie somewhere in the sun like a courtyard or garden that's ideal (obviously only for short periods).  Driving again also took a while as I couldn't get comfortable in the driver's seat and you're always conscious of not putting too much pressure on the stitches in case they tear.  In hindsight I was just impatient. My pain was well managed with panadol and voltaren and I soon learned not to feel guilty about taking them.  After a few weeks you'll be as right as rain. You will have huge relief from the itching which I can honestly say has completely vanished and it's well worth going through the procedure for the ongoing peace of mind.  It may be that your treatment is quite different to mine so I hope I haven't painted the wrong picture. Good luck and let us all know how it goes.

All the best

Wendy

Member Since:
21 March 2009
Posts: 29

Thanks heaps for your reply Wendy.  I imagine that my surgery will be similar to yours so that's all really interesting -  though will find out exactly what Ill have next week.  Did you have to wait a long time to get surgery?

Getting rid of the itch will be wonderful...

Thanks

Krista

Member Since:
4 November 2008
Posts: 14

Hi Krista

I was really lucky and my medical insurance covered most of the cost and also meant I didn't have to wait for a bed in a public hospital.  I suppose a lot of this depends on your own personal circumstances and where you live as some areas have a much longer hospital waiting list.  It probably also depends on your doctors and surgeons and where they have available theatre space.

I was also extremely fortunate to have the most amazing surgeon who fitted me in almost immediately so the waiting for me was days instead of weeks or months. 

What area do you live in? 

Wendy

Member Since:
17 November 2008
Posts: 9

Hi Krista,

I am 32 and I have just had my second Wide Vulval local excision two weeks ago and they did a biopsy as I was in severe pain trying to walk and do everyday tasks. I was told on Friday that the biopsy is cancerous and now I need to have all my parts removed as the biopsy only took a small portion of it. The recovery from that only took me a week but I have no idea what happens now or how long the recovery will take or how "major" this next op will be. I await the results of the CT scan and instructions from the specialist. I have the option of going private as there is virtually no wait or going on the waiting list at Public depending on the costs involved. I do have medical insurance but it only covers 80% as I have had this condition since I was 12ish.I have not been told about any reconstruction options although am keen to look into this so if anyone has any further advice please let me know.

Please let me know if I can help you in anyway as I am just at the other end of the phone.

Moana

Member Since:
21 March 2009
Posts: 29

Thanks Wendy and Moana for your posts.

I'm in Wellington and don't have health insurance ... so Ill probably just have to hope that the waiting list isn't too long. 

Moana - that must be so hard to hear that you'll be having so much removed - I really feel for you, though it sounds like you're pretty resiliant if you were able to recover from your surgery in a week! 

The waiting to hear whats next isn't fun is it?

Wendy where / who is your amazing surgeon?

Krista

Member Since:
4 November 2008
Posts: 14

Hi Krista

My surgeon was Ai Ling Tan and as well as being a very talented medical professional, she's an incredibly positive and empathetic woman.  I also credit her with informing me about the silver ribbon foundation which as you're finding is a wonderful place to find support and advice.  We're in Aucklamd but I'm sure there are equally excellent surgeons in Wellington.

Member Since:
17 November 2008
Posts: 9

Hi Wendy,

I am also based in Wellington and I have two amazing specialists, one of which is performing my procedure very soon. I know he does one day a week at Wellington Hospital although I can imagine that he could be in demand. I have one for the monitoring and regular management of the Lichen Sclerosis and one for when it turns cancerous.

Member Since:
21 March 2009
Posts: 29

Hi Ladies - well I had my follow-up appointment and have been told that I'll need to have a very large area removed which will probably include my clitorus.  Will find out more next Monday.  Moana - have you heard any more about your op?  I'm having a glass of bubbly to lament my bad news even though I know I probably shouldn't...

Member Since:
4 November 2008
Posts: 14

Hi Krista - haven't logged in for a few days and just read your message.  Hope you had that glass of bubbly and didn't feel guilty!!   Regardless of whether you're in Wellington or Auckland we have some great specialists/surgeons in NZ .  I have been incredibly impressed by some of the stories I've heard from other ladies and the treatment they've had here compared to overseas. Good luck with your follow up on Monday. 

Member Since:
21 March 2009
Posts: 29

Hi Wendy - thanks for your message.  I saw a great gyny onc today and he is going to try and save my clitorus - will do an excision of other areas and then after pathology test (hopefully clear) do laser around my sensitive bits.  He really sounded like he knows what he's talking about and put me at ease. Also looks like I can have my first operation this month which is good. Its all looking much more positive today!  Have you had an recurrances since your surgery?

Member Since:
4 November 2008
Posts: 14

Hi Krista - really glad to hear you've had some good news.  It helped me immensely to hear positive comments from the doctors and specialists.  We put so much trust in them don't we?  So far, so good as far as recurrances are concerned, but it's early days.  I had a follow up MRI in Feb which was all clear.  I'm having 3monthly check ups from now on, with the next one due in May, so fingers crossed. It's hard to know if there will be any recurrances because we don't know what causes it in the first place.  One thing is for sure, I will be knocking on the doctor's door the minute I notice anything unusual.  If nothing else this whole experience has taught me about awareness and not being afraid to get things checked out. Let me know when you have a date for your surgery and I'll send all my positive vibes your way.

Member Since:
17 November 2008
Posts: 9

Hi Krista,

Haven't been online for a couple of days. I too had a glass of bubbles when I found out I was having a radical operation. I went back for a pre op appt last Monday and I have to have my clitoris removed unfortunately as the cancer is right through there but only the top half needs to be removed and he will also take the lichen sclerosis skin so it hopefully minimises or eliminates any recurrances.  I am wondering if you have the same specialist as I do as mine has always tried to preserve before removing and opted to use lazer surgery if possible? After the biopsy it just wasnt an option for me any longer. Please let me know how you go. I will also send good vibes your way. I am having my radical operation on the 1st May so the waiting is hard but necessary to have eveything for my family organised.

Have a great Easter

Member Since:
21 March 2009
Posts: 29

Hi Ladies - my surgery is next tuesday 14th in wgtn hospital (very fast!) so all positive vibes very welcome! Had a lovely day out walking today in the sun and not thinking too much about what's to come.

Glad to hear all is looking clear for you Wendy - and you're right it really does help to hear something positive.

Moana - it does sound like we have the same surgeon.  It's a bit comforting to know that they're taking a conservative approach to surgery  -  if they say they need to remove bits - they really must have no choice.  Are you having your op in wgtn hospital?  A lovely nurse took me on a tour of the new gyny area - its looks pretty nice. 

Happy easter to you both -  the weathers looking good for the next few days...

Krista

Member Since:
4 November 2008
Posts: 14

Hi Krista - good to hear you're able to have your surgery quickly.  Somehow waiting around makes it worse.  Always good to get it over with and get on with the healing.  Hope everything goes well for you.  Be kind to yourself afterwards and don't expect to be able to sit properly for a little while.  I had complete bed rest for the first few days too so had to have bed baths as couldn't get up. The nurses were just lovely. I also had a catheter for a couple of days so didn't need to worry about toileting.  Was really worried that part was going to be painful the first time but it was all fine.Good luck for tomorrow.  I'll be thinking of you. :)

Member Since:
4 November 2008
Posts: 14

Hi Moana - just read your message.  Sorry only replied to Krista earlier as hadn't read yours.  It must be hard having to wait even those few weeks but as you say sometimes you have no choice.  All the best for your surgery on May 1st.  I'll have my fingers and toes crossed for you that it goes well. :)  I feel extremely fortunate to have had my surgery a few months earlier than both of you, so if I can be of any help at all or you want to ask any questions please do ask!!

Member Since:
13 February 2009
Posts: 24

Member Since:
4 November 2008
Posts: 14

Hi Raewyn - firstly I know what you mean when you say it felt like the whole area was missing.  I also had a cancerous area removed as well as the excision and it felt quite weird once the numbness had worn off.  It took me  a good three weeks before I could sit properly again so depending on the size of the area it might be a while before you can sit comfortably.  I sort of perched on one side.  Haven't had lymph nodes removed so can't comment on that.  Good luck with your recovery.

Member Since:
21 March 2009
Posts: 29

Hi ladies - hope you're doing well.

Here I am on the other side of the surgery.  All went pretty well - only stayed in one night.  Ive basically been on the couch the last few days - taking my drugs and lots of sleeping.  Im surprised at the lack of pain - I was expecting it to be really sore but I actually only notice a deep ache in the area once in a while and then I take my pain meds and it goes away.  The area is swollen and bruised so its hard to tell what they've done yet but Im surprised to see that it looks like I still have much of my labia.  Had a catheter in for the first night, which was a blessing! So glad to be out of the hospital - I get very anxious in there...  I await results of pathology but tryig not to think about that too much.  I see my appointmnet is not until the 21st May - so long to wait.

Wendy - Haven't tried sitting yet - might stay on my back for a while yet!

Member Since:
13 February 2009
Posts: 24

KristaI am pleased for you. I had 4 days in hosp with catheter in for 3 days. I was meant to go back for my appt  this week but its been cancelled to next week as they dont have the report yet. Fingers crossed for you all is well. I have been advised very little sitting I have had 2 weeks laying on the couch. I tried to set for couple mintues but its sore. You must be careful not to sit as you put your weight on it and it can tear apart slightly sodo be careful. Area does get swollen and bruised and will be for awhile,  take care look after no1 you

Member Since:
4 November 2008
Posts: 14

Hi ladies

Krista - so pleased you've got the surgery out of the way.  Yes, I was suprised at the lack of pain too, but I did notice that if I eased off the meds I got the ache you're talking about. Just keep taking the pills!! The swelling takes quite a while to settle down.  When you think about it the area has gone through a lot of trauma so its no wonder there is a lot of swelling. It took me a while to get up the courage to have a look at the area in the mirror but it wasn't as bad as I expected (even if it does look a bit lopsided and odd). The main thing is that the nasty cancerous bit has gone so I'm thankful for that.  Hope your pathology results are positive and good luck with the sitting and walking.  I had to walk like a Japanese lady for the first few weeks (ie shuffling with my feet close together so I didn't tear the stitches).

Raewyn - good luck with your next appt.  It's hard to get on with doing normal things when you're all the time wondering what is going to be in the report.  I can really empathise with that and hope that you too get some good news.

Best of luck to you both xx

Member Since:
20 August 2008
Posts: 5

Hi Raewyn

I had my lymph nodes taken out of both sides of my groin at the same time as my radical vulvectomy!! My Dr took them as a precaution but the results showed negative for cancer which was a relief. It hasnt really been a problem so far however i do need to avoid getting lymph oedema. Which means no hot waxing legs, no mozzie bites, no cutting legs shaving etc. Can be a bit difficult at times however ive just learnt to live with it really (its been a year!). Good luck with your appt & i hope all goes well..........Nicky

Member Since:
21 March 2009
Posts: 29

Dancing with your 9 year old 6 days after wide local excision is a bad idea....

Thought I was on feeling better today so got up and about doing stuff - then the bleeding started again , must have torn a stitch or something.  Im so bored lying down all day now, but obviously just need to be patient.  Also feel guilty not being able to take my girl out places as its the school holidays.

Wendy I know what you mean about the geisha shuffle - wonder how long before I can start excercising again. 

Made a juice today which was pretty tasty and felt like it would do my body some good - put in the juicer pineapple, apple, carrot, beetroot , ginger and then added some flax seed oil.  Sounds disgusting I know but if you have enough fruit its actually alright.

Member Since:
13 February 2009
Posts: 24

Member Since:
21 March 2009
Posts: 29

Hi Raewyn

Sorry to hear you have to have more surgery.  How are you holding up?  You must be feeling very stressed.  Have you fully recovered from your last surgery?  When did your bleeding stop completely? 

Member Since:
13 February 2009
Posts: 24

Not fully recovered from last surg which was on the 1st April. Still have trouble walking and unable to sit for long at all. Its going to be interesting as my job requires me to sit for basically a 12 hrs shift woth small breaks, I will be in hosp for a week and off again for another 6 weeks if all heals well. A the moment the best exercise is that I walk to end of driveway and back. Havent managed to walk non stop with out it being sore. But just take my time.

My bleeding stopped within couple days. I have still got a few retaining stitches in and have the oncology district nurse visit couple times a week, just to check on things.  Which is nice.

How are you healing?

Member Since:
21 March 2009
Posts: 29

Hi Raewyn - thats long a recovery from your surgery.  How frustrating for you. 

Is your work being good about taking time off work.?  I hope so.  I've been lucky in that I haven experienced much pain at all although I am still bleeding  a bit and its been 10 days now.  Talked to the nurse today and she saidthat as long as its not infected or bleeding heavily then it should be ok.  That good that you have a nurse visiting you - good for peace of mind and to talk through any issues i'd imagine.

Member Since:
13 February 2009
Posts: 24

Member Since:
21 March 2009
Posts: 29

Hi Raewyn - thats a long time off - its great that your work is so supportive.  Is that 6 weeks of recovery?  What exactly are they going to do?  I got my results last week - they didnt get clear margins for my in-situ stuff which isannoying and they found some invasive cancer but luckily at this stage it was only 0.7mm deep so they are just going to wait and see how I go rather than going straight into more treatment.  How are you holding up?

Member Since:
13 February 2009
Posts: 24

I going to have another operation. They need to take another 3cm plus lymph nodes in left leg. I have my pre-op check this thursday ao might know more then. Last time I went to get results alot of it flew over my head after they said needed second op/ It came back 6mm deep so thats why taking lymph nodes. So will keep you posted.

Hope your healing well thou Krista.

Member Since:
4 November 2008
Posts: 14

Hi ladies, haven't checked in for a while so have just read your latest chat.  Do either of you take support people along to your appointments?  (I know this isn't always possible).  I just found it quite helpful to have someone else there to absorb the stuff I missed and interpret things I sometimes misunderstood.  Hope you both have someone that can be there for you in this capacity.  Best of luck for your surgery and follow ups.  Not sure when my next check up will be but hoping all is good.

Member Since:
13 February 2009
Posts: 24

Usually I do. I have pre-op chck this thursday for second op and I have couple quesions written. I have had my best friend and daughter come with me. It is a great idea to tskr dupport person.

I am in Auckland is there anyone else up here? I only lived here for  28months.

Member Since:
19 May 2009
Posts: 41

Hi there

New here after my diagnosis last week.  Long story short - told had bartholin's cyst after large lump - pain, discomfort etc.  CWH Acute Gyn assessment a year ago treated me SO badly I left in tears to be told to go and get 2 MORE antibiotics - was already on two strong ones.  WAS so scared of ever going back as I felt as if I was just an idiot for thinking this might be cancer.  Apparently I was right and they were wrong.  GP put me to our WONDERFUL Chartiy hospital and 12 days ago a local GYN Surgeon who was volunteering his time probably got a shock as expecting to do a small surgery ended up removing a LARGE tumour.  Sadly no scans or pictures had been done so now waiting to find out whether all gone or what else is to be done.  Also it is a lieomyosarcoma so while vulva cancers are rare mine are only 1% of these!!!!!!!  GREAT!  SO  having waited 6 days to hear from anyone apart from the surgeon and my gp giving me this news over the phone  I rattled enough cages to get an appointment next Thursday.  SO my battle that should have begun a year ago starts now.  I am scared as hell that this has been given a year to take over other parts of my body and NEED an MRI NOW..... Have asked that they book this now - in the nicest possible way - rather than waiting 10 more days for an appointment and THEN 2-3 weeks for this scan .  SURELY if they know I am going to need it this makes sense to ME......

Am a 45 year old divorced mother of two AMAZING kids who are 9 and 12 - and have sadly already trod this path with me with my mother who died of Bladder cancer 3.5 years ago. 

Anyone that knows anything or can recommend anything I am happy for all the support that exists here amongst all your brave women.

Sad to be here but happy to have found you.

Sally

Member Since:
13 February 2009
Posts: 24

Member Since:
19 May 2009
Posts: 41

Raewyn - thanks and best of luck for you too. I am in Christchurch. 

Sally

Member Since:
17 November 2008
Posts: 9

Hi Ladies,

Haven't been online for a while as I have just had my radical vulvectomy. A lot has happened in terms of your surgeries. 

Man this is really difficult on the odd emotions and extremely disconcerting when using one of those removable showerheads and the water now goes straight up as there is nothing there to protect the space. Even more disconcerting that when you go to the bathroom and you go to wipe and you just keep going because there is nothing. I have had EVERYTHING removed now so I hope this is the end of it for me but I have a pile of questions for my specialist next week for check up.

Krista - does your surgeon have an odd sense of humour but a heart of gold?

My tests have come back negative so they have got all the cancer with a good margin around it and also it hasn't got to my nodes yet so no radiotheraphy - YAY. Am in enough pain as it is and have had infections due to the lymph node drains in both sides.

Keep fighting ladies - Kia Kaha

Moana

Member Since:
21 May 2009
Posts: 2

Hi my name is Mashell Grace and I am new here I was diagnosis last year in October and started my treatment at the beginning of April and finished on the 10 of May. I had cemo and Radiation in Hamilton and stayed at the Lions cancer lodge Monday to Friday.

I go for my check up on Tuesday next week and see where we go from there.

I suffered alot of pain before the treatment started and was pretty freak out but I just knew that i was going to get through this.

I finihed my treatment on the tuesday and returned back to work on the Thrusday. For me it is good to hear from other women who are going through the same thing as me.

Mashell

Member Since:
21 May 2009
Posts: 2

Hi Ladies

Just me a gain I"ve been reading the stories and Moana I was sad to read about your marriage, It's enough that you are going through without having this on your plate as well, I pray all things are going well and your recovery from your lastest operation is okay.

Louise I read your story in the womens gallery and I could'nt believe it, how long it has been developing, when I was first diagnosis I throught what a fool, I had missed a year without a smear and it may have developed there.

I had the icthness and it did feel like thrush, the only thing that drove me to the doctors was the fact that this lump was growing and I was getting a lot of pain. My doctor said it was around 5 years it has been developing.

I was not told what cancer I had I read it on my treatment papers and really I did'nt get much info about , I have gotten more info from this site than any doctor has given.

What I would like to see happen is they give you more info on after care, they full you with the treatment info, but not how you can look after yourself, like the creams, I always have to have a pad on and have tried so many brands now its sicking.

Walking like you have a bar between your legs or shuffling because of the pain.

Kia kaha wahine ma, he awhi he arohanui

Be strong, feel my support and my love

Member Since:
21 March 2009
Posts: 29

Hi ladies - is so helpful to hear stories from NZ women going through this even though its awful that we all have it.

Moana - you must be going through so many emotions at the moment getting used to your new body (along with all the physical stuff)  - hope you're coping ok.  I think we definately must have the same surgeon - that sense of humour!!!

Raewyn - let us know how your surgery went - Ive been thinking of you.

Mash - I was undiagnosed for 8 years so dont feel bad about leaving it a year.

Sally - how are you doing now?  Ive got a nine year old too - thinking of her has been the scariest thing in all of this for me.

I've just bought a book called life, happiness and cancer by a Wellington cancer survivor.  Im about a third of the way though it and am really enjoying it and getting lots of useful tips on attitude and diet and treatment options etc...

This week I got good news in that I dont have any more treatment for the moment and we'll just wait and see - but I got bad news on another front.  My daughter has a lump on her gum which they are going to biopsy on Tuesday.  I know its not necessarily cancer - but Im very paranoid!!!!

Take care

Krista

Member Since:
19 May 2009
Posts: 41

hi Krista

Well it is totally my children and their needs that has me a bit of a mess.  FINALLY Getting to SEE someone post diagnosis later this week.......so MIGHT get some answers - or more questions.  With it being such a  rare form I am not sure what this holds and it is very scary.  Did wander around Borders and might have a look at the library for some books that might help.  Finding internet reading about the type of cancer rather scary.  Keep going and hiding in my current read of Dawn French Autobiography and hte Comedy Channel.  LAughing seems preferable to crying.

the issue with heredity concerns me as lost my mother, Uncle, Grandma on mothers side and Aunt on fathers.....all to odd cancers.  They have already mentioned on the phone that later they want to do some genetic testing. 

Having done all the smear tests, breask screening and urine checks due to mothers being bladder cancer think I could have caught this.......is frustrating as hell to have been told I was being stupid and silly........No comfort in being Right!

Will let you all know what they say on Thursday.  Will just be nice to be treated like a human not left on the sidelines while they buzz around.

Sally

Member Since:
4 August 2008
Posts: 4

Hi ladies,

A few months with no pc at home and I see I have so much catching up to do!!

It saddens me to see so many women going through the ordeals of this horrible disease, but the positive attitudes that show in this forum is an encouraging sign of how strong us women can be when faced with what would seem impossible to deal with, emotionally & physically!

I am so pleased to hear you got through your surgery ok Moana. It can't be easy having to go through a full vulvectomy, and it is a possibility that all of us here may have to face that fact oneday.

I am curious though, if any of you ladies have had any of your specialists mention a reconstructive operation called the "lotus petal flap". I have been doing a bit of research on it and it does not appear to be offered in our country, but is extensively used internationally on women going through our sort of operations.

Please post any info you have on this, as I would like to research this further and try to have it become an option for us in the future, if it is not already!!

And Raewyn, I do wish I could've been online for while you were in Auckland. I would have been more than happy to offer some support to you. If you are still here when you go back online we must try to get in touch!

Positive thoughts, love & light to you all....

Member Since:
4 November 2008
Posts: 14

Hi Louise

The lotus petal flap was mentioned to me when I had my surgery and at the time there was a surgeon visiting from the UK who had experience with this form of reconstructive surgery.  In the end I had tthe more conservative version as I think they decided it would be appropriate in my case. My surgeon was AiLing Tan in Auckland and I'm sure she could give you more information on this option if you contacted her.  She has rooms at the Women's Cancer Centre at Ascot Hospital.  Good luck with your research.  :)

Member Since:
19 May 2009
Posts: 41

Hi all

Finally had my appointment this week and now have CT scan and another appointment.  Bad news was there were "positive margins" when they took out the tumour - expecting it to be a cyst and having had no investigation in the year of agony has not helped there.......  SO positive is now a negative and I face more surgery. 

My sense of humour gets me in trouble and jokingly asked if they could make it look like a flower.....  the Lotus Petal Flap was discussed there - so they are obviously aware of it here.

Only BIG shock - having prepared myself mentally as well as I could - was that I might end up with a colostomy as it was so close to THAT area....... So at 45 could face the rest of my life with that......but feel it is better than the alternative.

Sure they are going to do whatever it takes to try and avoid this. 

Now waiting to check it has not gone elsewhere in the year it has been left.

Sally

Member Since:
19 May 2009
Posts: 41

A question for all of you - does this process seem INCREDIBLY Slow????  I have now got into my fourth week of knowing that it was likely I had cancer and seem nothing has happened - apart from a hell of a lot of stress and fear.  It seems such a SLOW process.  I have not had any tests to check for mets, no scans, no blood tests - just the one appointment at the hosptial and now told I may wait 3 WEEKS for a CT scan - GOOD GRIEF....  This seems to add to EVERYONES stress so much - mine and my two children.  Told I have positive margins so guess that means I still have tumour now doing what it likes and going where it likes.  This seems so unfair and makes me feel SO helpless.  EVERYONE keeps asking me what is happening.  A friend had an appointment for breast cancer and was seen for scans and tests the next day!!!!!!!!!!!!!  WHY am I waiting so long for this to start happening.  I have another appointment in 10 days but what is the point if there is nothing else done in the meantime?

growing in frustration

Sally

Member Since:
17 November 2008
Posts: 9

Hi Ladies,

Sally - in regards to the process being slow - ABSOLUTELY- personally that caused me more stress. I am a person who needs to know my kids and husband are ok before I focus on myself so my husband and I discussed this at length and chose the expensive option and went private. I had the CT scan booked in 3 days after I was told and I was given two operation dates - one 3 days later or a month later. After checking if the delay would impact on the prgress of the cancer I went with the later date so that I could sort out both family and work. We are not rich by any means so have been taking one day at a time to fund the various tests etc. However from diagnosis to op was 3 weeks so my family is far more settled knowing I am clear at this stage.

Please keep us posted on how you are doing.

Louise - Long time no hear. I asked about reconstruction options at the time of my pre op appt and was told that the specialist will reconstruct what he can during surgery. Unfortunately I am far to chicken to see what has been reconstructed and what is not there and my specialist has advised against it until it has healed anyway.

Nothing about the Lotus Petal Flap. My biggest fear was how close it has got to the bladder tubes and if it was going to affect my waterworks given that my clitoris had to be removed. I am wondering whether this wasn't suggested to me as it may have been better to cover this area completely to reduce the risk of infections like Urinary tract in the future? I am going to ask the question at my next check up so I have a better understanding.

I approached the cancer society as suggested by my counsellor and nurse but there are no specific workshops for this cancer in my area and they are still trying to find me a cancer buddy. There appears to be a bit of a gap there for what seems to be a unique form of cancer so it is fantasic that silver ribbon allow us to chat on these forums.

Thinking of you all

Moana

Member Since:
19 May 2009
Posts: 41

Hi Moana

thanks - yes can be frustrating  not having a buddy.  Luckily I joined the ACOR L-M-Sarcoma group and am on the list so got a message yesterday with the only person I have heard of who has anywhere near my type and place.  She has reassured me lots about surgery and recovery and in her case now 8 years on NED.

I am divorced, single mother of two kids - making decisions alone and dealing with my childrens needs and costs WAY Above my own is tough.   

As for timing.  I was told almost 4 weeks ago that I clearly had cancer but I KNEW and argued with them that this was what it was over a year ago. 

I have my next appointment in just over a week.  I have offered to find the money to pay for a CT scan but again that does not seem to be an option but have finally got it coordinated so the CT scan happens the day before my next appointment witht he Surgeon/Consultant.  Seemed silly to be going into that appointment without it.

Got things all sorted for the children while I am in hospital - which am told will be 7-10 days.  Given that the intial tumour removal I walked out an hour or two later and went home I guess this means it might be a bit more ick.

Thining of you all and hope you are well.  Found a book called "cancer is a word, not a sentence"

I am remaining very positive and having to be very very proactive to ensure things do not slip through the cracks.  What I do not need is further stress and then financial stress trying to get this underway.  SO want to get some control back over my life and know when things are happening and regain some confidence in the medical profession - which is at an all time low.

What annoys me the most is every woman I have known with Breast cancer has been seen immediately, scans done almost immediately and surgery completed very quickly.  Seems gyn cancers are in a different class......Sally

Member Since:
13 February 2009
Posts: 24

Hi everyone my heart goes out to you all. I have been in and had nodes from left leg done. Things have not gone well with healing and 2 of the 12 nodes returned positive. I am having CT scan on Thursday next week. And cant start radiation treatment until leg has healed and even possibility of having right nodes down.

I got infection in hospital so drain had to come out early now at home its been 2 1/2 weeks and lymph fluid is still flowing out of leg. I have incontinent pads soaking the fluid up. Cant walk far and limited in what I can do. Hospital staff etc have been wonderful. Its frustrating as well.There is a whole lot of life we been missing out on. And at times it hard to stay positive.

I was seen at clinic on Thursday and they requested ct scan  and appt arrived in mail Friday so it was very quick.

Louise I live in Auckland in Mt Wellington.

Sally I know its hard the waiting not knowing etc is very stressful.

We are all strong and its great to have a place like here to talk to others. Its hard to talk about. I admit when I alone in bed at night I cry as I try to show my friends and family I strong and can get through it. But it's hard.

I have got at least another 2 months off work.

Member Since:
4 November 2008
Posts: 14

Hi ladies

Moana, I agree totally with your sentiments re the publicity and support breast cancer patients get. 

I suppose the only positive thing is that foundations like silver ribbon help publicise the fact that there are other types of cancers that invade and affect people's lives and for which we need support both financially and spiritually. 

I do everything I can on a daily basis to try and increase people's awareness of gynae cancers - even if it's to encourage a friend to get a smear test or ask a colleague to buy the silver ribbon book.  Hopefully in time as awareness grows there will be more support from our health system for women diagnosed with these types of cancers. 

In the meantime we have each other's strengths and experiences to draw on. 

I'm back at work now and have my 6 monthly check up later this month.  Fingers crossed.

Member Since:
20 August 2008
Posts: 12

Hi Ladies,

Wendy you are absolutely right. Part of our role will be to assess the adequacy of treatment quality, compared to the gold standard (term used in medicine to define optimal). We have already identified a number of things, some of which the medical profession already agrees on. However as you know, these things are a political beast, and we need to be more robust as a foundation before we can tackle this. First we need awareness, that will get the community in behind us somewhat. Awareness creates funds, which we sorely need. Next year we hope to start to address some of the things we have identified. Its early days! But we hear you.

Rachel

Member Since:
19 May 2009
Posts: 41

Hi all

Well finally got my CT Scan (another muck up as no one had checked if blood tests had been done so was in the machine and then had to be hauled out and sent away for a few hours.....!!!!!)  BUT it is all clear......no mets at this stage so this is making me feel HEAPS better about my future and my childrens.  I have another appointment in a week...and  then decisions about how radical my surgery will be - and if it goes wiht the radical colostomy or not but just feel a bit better with this other news so will cope with that next week.

Thanks all of you for being here and listening.  I know I am not out of it yet and have a big hill to climb but feels like the weight on my back is a bit lighter.

Hope all is well with all of you.

Sally

Member Since:
19 May 2009
Posts: 41

Back again - seems it is very quiet here.... Anyway just in case there are people reading.  Now had an MRI but still waiting for that.  I am pleased to say that the outsome of this weeks meeting was that the surgery is going to stop short of doing the Colostomy.....  Kept wondering about getting matching shoes and hat for that particularl bag - -so what a relief.  Who would ever have thought the ability to poo would be so precious!!!

SO now waiting for a date for surgery. 

Sally

Member Since:
13 February 2009
Posts: 24

Member Since:
19 May 2009
Posts: 41

Hi Raewyn

Funny that it does not seem to matter how pinhole size that light at the end of this particular tunnel can seem at times that we are still delighted to see it.........and keep travelling towards it. 

From what I have been told so far I will not have to undergo any radiation or chemo so this next operation and the recovery then checking every three months from then on.  Must put it in my diary from CT exam so I remind them I am due to have the next one- even if I am still recovering from this operation I still want to ensure this is done. 

Was reading some research online about vulva cancer the othetr day and they said one of the pointers was havinga  mother with cervical cancer. My Mum did have it and had a full hysterectomy in her mid 50s.  She then later got Bladder cancer and now I am wondering if this was not just Mets from the cervical.  Given her mother had a huge number and range of cancers it seems it is good they said I woud be seeing a geneticist.

Hope you are doing well Raewyn. 

I am now trying to work out how things will be "down there" after this next operation - all they have said is that it will be different and appear "flat"......Also they are talking about doing the lotus petal flap - so taking skin and tissue from arse......Told them I have been growing this just for such an occasion!!!!!!!

Have a nice day - sun is out here so off to put more washing out.

Sally

Member Since:
19 May 2009
Posts: 41

Hi all - well anyone reading this....sometimes feel guilty I am the only one writing in here - but anyway the news is I have my surgery date.  8 July is D Day.  Got 10 days to sort out things around here and organise the children for their time at friends.  Got a long appointment on Thursday next week and will get some questions answered I guess.....and meet my surgeon as the one I have dealt with since diagnosis has gone overseas!!!!

Raewyn - how are you recovering?

Has anyone got tips of things I should do to get ready......???? what did you find helpful in the few weeks post surgery?

thanks

SAlly

Member Since:
21 March 2009
Posts: 29

Hi Sally - couldnt stop laughing when you wrote you'd been growing your arse for such an occasion!

Thats great youve got your surgery and kids all organised now and even better that there's no poo bag involved anymore. Bummer your surgeon's gone overseas.

After my surgery I found a squirt bottle with lots of salt and water in it really good for cleaning after going toilet, also lots of big comfy cotton granny undies and pads.  Ive heard some people have found ice packs or condoms filled with water and frozen - to be relieving though I didnt have the need . Also buy some big pads.

I had a comfy couch all set up in the living room for when I arrived home with all my bits and pieces like remote control, laptop, books, water, drugs all within arms reach. I also bought a juicerso I could make nice vege juices which made me feel like I was being healthy. Be careful not to move too much at first - I got carried away and split some stiches.  Nota big deal but takes a lot longer to heal. Also - ive been getting massages lately which have been really great.  If you're able, I reckon go and get a nice long massage the day before your surgery.

It was school holidays when I was recovering, so I felt guilty that I couldnt take my daughter out anywhere, so I arranged for friends and family to take her on outings.

Let us know how its all going for you - even if we're not writing Im sure there are many who are reading your posts and thinking about you.

Krista

Member Since:
13 February 2009
Posts: 24

Member Since:
19 May 2009
Posts: 41

Krista

thanks for that.  Yes remembered needing the pads after surgery 8 weeks ago - not things I normally use so must put it on my to do list - which is growing by the second!!!!

I am lucky that I have raised my children to be the sort of children that people love having around - WHEW!!!!!!  My friends are taking them and even though this is now happening through a large part of the school holidays she is committed to bringing the children up to see me every day - amazing ah!!!?  I know the children will be worried so this will reassure them that I am ok.

Another friend has come to most of my appointments with me and he is good at asking the questions I might forget to ask and retaining information as my brain often becomes full!!

The funny part was after the tumour removal I was up and walking around really quickly and sent home - as they were not expecting a tumour.......so actually walked out fo the place it was done only a couple of hours later.  That seems to have heeled well in almost 7 weeks so hope this will happen this time too,

Thanks for the ideas - will make sure I put the icepacks in - not good time of yr to be sitting on icepacks - but never mind!!!

Sally

Member Since:
4 November 2008
Posts: 14

Hi Sally

I found salt baths to be the most comforting thing after my surgery and they might be a bit warmer than ice packs at this time of the year!!.  I bought a huge bag of salt and just sat in the bath up to my waist in water and relaxed twice a day.  It was bliss and relieved the soreness caused by the trauma of surgery.  Also be gentle with yourself after surgery.  Water under pressure can be quite powerful so be careful with the squirty bottle :)

Just had my first checkup since Feb and have to go back in for another small op just to excise some granulation post op and to biopsy another small area the size of a ten cent piece.  Not what I was hoping for but am having the surgery on a Friday so can recover over the weekend and be back at work on Monday.  Fingers crossed the biopsy doesn't turn up anything nasty.  17th July is my op date.  In the meantime am waiting for the next issue of the East and Bays Courier as was interviewed by them last week and there should be a story promoting the Silver Ribbon Foundation which is all good and more much needed publicity for gynae cancers.  Good luck for the 8th Sally.  Will be thinking of you.

Member Since:
13 April 2009
Posts: 1

Greetings Everyone

I would like to tell you the story of my mother.

My mother, died in the year 2000 at the age of 90 years.  She was of the generation who did not speak of private parts or “down there” but she died of vulva cancer.

She had been a widow for nearly 10 years, and managed very well on her own, with the assistance of a woman who came in for a few hours weekly to assist with housework.  This woman mentioned to my sister that we should have our mother checked at the doctor, as she had known there was blood in her pants.   Now my sister or I had been taking my mother to the doctor whenever necessary for several years but this problem had not been known about.  The family received a shock when she was immediately put into hospital and we were called in for a family conference.  It seemed she had vulva cancer, this has been caused by years of lichen sclerosis.  This was a shock to us as she had appeared to be healthy, the doctors recommended an operation to remove the cancer.  We asked if it was wise to put an 88 year old woman through this, but were told a very definite yes, it had to be.  Otherwise her death would be extremely painful and smelly.

Our mother seemed to take this in her stride and eventually had the operation in the Christchurch Hospital.   Recuperation went well, although it knocked her back.  A few weeks later we took her back to the hospital to start the radiation treatments.   This happened every day for several weeks, and the family organized a roster to drive her to Christchurch, about an hours drive away.

She told us she looked forward to these trips, it gave her a chance to catch up with the family members.  Nearer the end of the treatment I saw the treatment site, it looked red and sore, but she did not complain.    She recovered from this quite well, and her quality of life was reasonable, able to go back to her favourite occupation of playing cards with her friends.   The family helped her to celebrate her 90^th birthday with a lunch party where she arrived in a stretch limo, accompanied by several of her grandchildren.

However after another year it all caught up with her, she had some time in the local hospital, then a few weeks in a resthome.   She had a problem with a swollen leg, which apparently may happen after the glands in the groin are removed.   My oldest daughter was due to give birth to her second child when my mother was very ill, and we believe she hung on to life, waiting for this event to happen.   The baby boy was born on 1 September and she died in the early hours on 3 September.   She had much to teach us by not complaining, just getting on with life and enjoying it the best way that she could.

A few months after her death I realized I should do something about my own problems in the vulva area, having had itching and inflamed skin there, off and on for many years.   Then a phone call came from my only sister, to tell me she had the same problem.   We both made an appointment with a Dermatologist, and were told we have the Lichen Sclerosis.   When we told of our mother’s problems we were informed we should have regular check-ups, and this now happens.  The specialist often remarks when I walk into the consulting room “oh yes, you are from that family, aren’t you?”  We have also informed our next generation to make sure they are aware of the potential problems.

From RaeM

Member Since:
19 May 2009
Posts: 41

Thanks all....... Was thrilled that when I nominated my "wonder woman" friend she got the bunch of flowers from Wild Poppies yesterday and was trully thrilled with them - and told me I should not have!!!!!!  She is aware my outgoings have increased dramatically and incomings dropped also ......so  it was lovely to reassure her that it was not a rush of blood to the head but a lovely company that is supporting those of us that find ourselves "here".  Thanks Silverribbon and Wild Poppies.

Got my pre op appointment tomorrow...so get to meet Peter Sykes for the first time - before he goes down there......and then I have got the Anaesthetists appointment on Monday - BOTH Appointments sent to me were for the ONLY two times Ihad anything in my diary for the next few days - BOTHER....so have had to call on friends to back me up again........  Also my wonder woman friend now has three sick kids so I have had to regroup again and get two other friends to take the kids - so they do not have to "watch" tomorrow.....or listen to some man talk about parts of my body they would rather not think I had!!!!!!!  SO life is as usual rather flexible and seem to regroup and rejig it all the time.

Whew - still not got the house in any sense of order.....ah well sure it will be here to sort out when I am bored and recovering at home.

Sally

Member Since:
19 May 2009
Posts: 41

Hi there

Am out a few days earlier than anticipated.  All went well.....will be nice to sit properly soon. 

Waiting for histology which will be another 10 days due to Doctors being away. 

Thought the world was playing a joke on me the other night with the programme "the Perfect Vagina:" being on television.  VERY irritating as cannot understand why any woman would do this willingly for "cosmetic" reasons.  Makes me wonder about people at times.

Anyway back in the land of the living and surviving.

Sally

Member Since:
21 March 2009
Posts: 29

Hi Sally - thats fantastic news that it all went well and that they sent you home early - fingers crossed for the histology results.  Hope you're resting and being lookedafter well.

Yeah - I saw that show advertised too - is insane....

Keep us updated with how you're doing...

Krista

Member Since:
13 February 2009
Posts: 24

Member Since:
19 May 2009
Posts: 41

hi all.......

Well pain and bleeding has increased a bit today which is day 8 post surgery.  Think it is just me trying to be tough, do too much and do without pain relief.  Will admit defeat and take some tonight before bed. 

I can relate to your issues Raewyn...am used to being SO independent and doing too much so it is driving me crazy being home....and also trying not to mix too much as do not want to catch anything post operatively.  On antibiotics so should be fine.

My friend came over from Sydney and then got a tummy bug so has been back at her parents since Tuesday.... Ah well has shown I CAN cope.

Still waiting for home help.......a week out......Good grief..... 

Raewyn  re the legs swelling - I had this in one leg after my first operation and it was driving my nuts - it has gone down a bit after the second.  I am  wondering if it due to the fact that I have favoured this one leg - and sat on that side for most of the  last year.....or more due to "Reg" the lump...

After this last operation I cannot believe anyone would have surgery on this part of the body for "cosmetic" reasons unless they were seriously deformed....or had an accident.  IT is just SO painful.

Only 5 more days until I get the results.  Looking forward to that..I think

Sally

Member Since:
19 May 2009
Posts: 41

update - some of Reg was still there so now waiting for find out where he was hiding and therefore what has to happen - choices seem to be more surgery, - including possible colostomy - and/or radiation....

Bugger!

Sally

Member Since:
13 February 2009
Posts: 24

Member Since:
19 May 2009
Posts: 41

hi Raewyn - well congrats on the clear result for the polyp...  I find out tomorrow morning what they are planning next - it is going to depend if the lab boffins have all sorted out where they think the tiddly bit of "Reg" was hiding.... am hoping it was in the middle and there was still clear margins.....They have said it might mean radiation - or the colostomy thing..... (which is like a big ogre hiding in the cupboard - know it is there but really do not want to think about it...!!)

Am healing and proudly went 36 hours without pain relief.... (pathetic what can make us happy!!)  Took some this morning as was at a school sports tournament all morning - gorgeous day here.

Hope your radiation goes well.  Will think of you - it is my daughters 10th birthday that day so will be doing the birthday thing.  Am taking high antioxidants and zinc and finding it is helping me recover again...  My Pharmacist/saint,/previous partner has got me on a concotion that is helping me cope day to day - and is coming with me to tomorrows appointment. 

Weird thing is my best friend came from Sydney to help me post operatively..has found a lump in her vagina - so is off to the doctor in Australia today to get it looked at.  SO hope it is nothing... She seems to be hitting the change a bit younger than normal and was having problems with that too..... SO now hoping she will be ok but am pleased that talking to me has meant she is more aware and will not just leave it.

Sally

Member Since:
19 May 2009
Posts: 41

Hi there

TWo bits of news - my friends "lump" resolved...... but am still wanting her to check out that and her periods going a bit "weird". 

The other news was that they want to do more surgery - this time it means the colostomy.    I really need to get my head around it - and also get some second opinions from people that specialise in the sort of cancer I have.  Being so rare it is stated everywhere that I need to be talking to Doctors that deal wtih Leiomyosarcoma all the time.  But due to it being SO rare it is hard to find anyone in this part of the world with this sort of experience.

So got a few more weeks of healing and then make my next decision.

Sally

Member Since:
21 March 2009
Posts: 29

Hi Sally - thats so not the news you wanted to hear.   Im glad you are researching your options.  Ill make sure I keep an ear out and have look around on the internet for you. (although Im sure you have already done that endlessly...)  How is your healing going? 

If you do have to go through with the colostomy - I'm sure you'll adjust to it over time and from your attitude that you show on this chat room - I'm sure you'll manage to cope, and even have a few laughs along the way.

Take care and let us know how you're doing.

Krista

Member Since:
13 February 2009
Posts: 24

Member Since:
21 March 2009
Posts: 29

Member Since:
19 May 2009
Posts: 41

hi Krista and Raewyn

Happy Birthday Krista =- strange but it is my birthday today too - although am 46.  Had smoked fish chowder and no champagne....strangely still not had a single drink since my diagnosis 3 months ago........... not sure why.....Have had a nice day with my children and even went to the beach. 

Still not getting any answers - a month since surgery.  Waiting to hear from Sarcoma team and the Stoma team.  Did get a copy of my histology in the mail but that is it.  10 more days to my next appointment and no further ahead as need to know the options and get loads of information.

Raewyn - good luck with the Radiation - they appeared to be telling me this was not the best option for me.   Just got to figure out what IS.

Sally

Member Since:
19 May 2009
Posts: 41

hi all

Had appointments with the stoma people  earlier this week and my Gyn.oncologists today.  The Sarcoma specialist came and saw me there which saved some time but did not have time to think through my questions  =- he is going to write to me wtih his thoughts and recommendations so will get my head around it all then.  Sadly also did not have a friend there with me to be my ears and brain for when either of mine go on filter.  The main bit was he is not recommending the colostomy so this means I have to make sure I am happy with his thoughts and weigh everthing up wtih all the other information. 

Working quite hard to gather information and keep my head clear and stress levels down.

Hope you are all beating this and living well......it is  what all of us deserve.

Sally

Member Since:
13 February 2009
Posts: 24

Member Since:
19 May 2009
Posts: 41

thanks Raewyn

Hope all goes well with you next week.  I had to cancel the appointment with the Radiology Oncologist to discuss what they might be able to do for me... as got flu I think - Feel like I have been hit by a bus. 

I am lucky that I have healed after the last surgery which was 6 weeks ago.  once my brain clears after the flu will get back to making all the important decisions.

Thinking of you

Sally

Member Since:
21 March 2009
Posts: 29

Hi ladies - hope you're all doing well.  Sally - are you over your flu?  Raewyn have you begun the radiotherapy?  Im off to hospital tomorrow for my 4 month check-up.   Fingers crossed!

Member Since:
19 May 2009
Posts: 41

Hi Krista - yes am mostly over the flu......and went to the Radiology oncologist yesterday.  Will ask more questions of those of you who have been there and done that later.  Still taking it all in at the moment. 

Good luck with your check up.  A support group I am on for the type of cancer I have - Leiomyosarcoma - referred to it as "Scanxiety" and guess it is going to come with the territory.  Hope you can get rid of that and celebrate some good news soon Krista.  We all deserve it and it is nice to share good news too.

One thing I have found - and wonder if you guys have too - but while my wide margin was close to the anal sphincter and have been expecting some impact there (and not noticed too much difference so far.......) but when I had flu and sneezing badly I would sometimes have SOME issue with holding urine.....I have never had an issue with this in the past and wonder if the "supporting structures" have been altered a bit with the excision.  Am going to ask at clinic  next week as it is becoming a bit of a problem! 

Hope are enjoying the "awareness month".  Think I have made most of my female friends and some males WAY more aware than they want to be......if I get a nickname like Vulva lady then might have to change the subject.  HOWEVER harping on at people has seen two of my friends go and get abnormalities checked out so this is a good thing!

Let us know how you are Raewyn and will keep my fingers crossed for you too Krista.

Just so you can have a laugh - at my expense!!! I was bravely stupid and agreed to do a radio interview with a friend - small radio station that only hits a small area around all the bays in Lyttelton....and so on Monday I went in to talk about Gynae cancers, My vulva and silver ribbon foundation.  (hope we got more hits!)  Then my friend who was the DJ/Announcer said as going to a break - when we come back we will look at Sally;'s .................pause...(thank god this was on RADIO as sounded like we were all going to look at MY vulva!!!)  Then the next break - after I had said vulva and vagina a few times he said and now for a musical break - now playing a song by a group called "The Flaming lips"........who KNEW there was a group called this?  Anyway I managed to compose myself with tears running down my face and keep on talking hopefully not jibberish!!!  The great part is he had NO idea what he had just done!

Enjoy the sun and spring and lambs jumping

Sally

Member Since:
13 February 2009
Posts: 24

Member Since:
21 March 2009
Posts: 29

Hi all

I had my follow up appointment last week and got great news - no need to biopsy anything at this stage.  And next appointment in 6 months as long as I dont notice any symptoms. 

I sure did experience that 'scanxiety' sally.  I thought I was doing fine emotionally and that I had my head around all the likely outcomes of my checkup... but as soon as I arrived at the hospital I felt like vomitting.  And when I got back into the car after my appointment I was a blubbering mess - one would have thought I had been given terrible news not great news!  Anyway - just goes to show that there are obviously some things buried that Im still dealing with.

Raewyn - so glad your radiation is going well - thats fanatastic you've managed to meet so many lovely people through it all!

Anyway - its a sunny day and Im off to do a BBQ.  Take care.

Member Since:
19 May 2009
Posts: 41

Hi Raewyn and Krista = and all the others here and reading.......

Krista that is great news..... I am so thrilled that you got good news and I do understand that reaction.   Sometimes the relief is almost worse that that feeling that you have to fortify yourself to be tough and make more decisions and look at the next thing.  Do not necessarily think it is a bad thing.  Releasing "scanxiety" is something we should have as a lesson in life!!!!

Raewyn - thrilled it is going well for you .... My issue is possible benefit vs possible side effects - and the months of issues trying to raise and care for two young people  alone while having such a treatment.  SO far it does not compute....

Got a follow up this week so decision time...........

Sally

Member Since:
21 March 2009
Posts: 29

Member Since:
19 May 2009
Posts: 41

hi Krista

I have checked back in and it has been quiet.  My follow up went find and now have plan to wait and watch and see........  3 monthly checks etc.   Radiology did not seem like a good plan with pros and cons.......  Scarey as it seems to be "doing nothing" it felt like it was the best thing.

Hope you are all well and coping with whatever treatment you are doing.  How are things for you Krista?

Sally

Member Since:
20 August 2008
Posts: 5

Hi All...its been ages since i posted last!!

Well i had my usual 3 monthly check-up last Thursday, expecting the ususal   'youre all clear'  but it was not to be!!  My oncologist has found a suspicious area so had to have a biopsy with the results due in 2 weeks. So, now the waiting begins along with the horrible feeling of doom.

Hope everyone else on this site is doing well!

Take care All

Nicky

Member Since:
21 March 2009
Posts: 29

Hi

Nicky thats such crappy news.  Lets hope results come back ok - Im with you on that feeling of doom.  Know it well! Even if its back - Im sure you'll just deal to it then be back to your 3-monthlies.

Sally, really glad your follow up was ok - challenge I found when  I was told to just wait and see, is to try and get back to a normal kind of life and not think about it too much.  I've started lifting lots of weights lately which has really helped me relax - Arnold Swarznenegger(sp?) here I come!!

Member Since:
19 May 2009
Posts: 41

hi everyone =

Krista it is great you are back lifting weights - I have lost over 20 kgs before this lump came and sadly put on 30 now = so want to get all of that off.....  Wish I could afford to join a gym but it is not really something I can do.  SO now I can walk again am doing that.....  Hope to get life back to normal after the school holidays.

Nicky  = all around BUGGER for your news....  and will think of you

My nephews grandmother who has raised him since a baby is having her large Bowel removed next week and this is tough news ... 

Just want to say I really do not like Cancer!

Sally

Member Since:
13 February 2009
Posts: 24

Member Since:
19 May 2009
Posts: 41

Raewyn

Sorry you went through this.  Sounds horrible but glad you are back home.  I think trying to work out how all that would work with two chidlren full time and not much help just phased me totally.

Hope you are recovering and it did all it was expected to to prevent any other issues for you now.

I have my check up this week.  Was doing well until I went to HAnmer for a break = including massage - that has done something to my back that has me in more pain than cancer and operations EVER gave me.  On a tonne of painkillers and still in agony.

Sally

Member Since:
19 May 2009
Posts: 41

Hi all - will post this here and in the other part as not sure who reads which list.  I have had considerable swelling/fluid retention post surgery and it is driving me mental.  My feet have gone up at  size and I only have a couple of pairs of shoes I can wear.   I cannot get my rings back on still = almost 3 months post surgery  now.  My legs feel like they are about to explode when I kneel down - so I tend to avoid this...

Decision not to have radiation was made and am up for my 3 month check up next week.  Got a back injury from going for my "relaxing" back massage!!!!!!!!  Now on about 4 times the amount of pain killers than I needed post surgery so that tends to put it into perspective.  SO had emergency chest xrays the other day as they were worried that I might have clots on the lungs......thankfully that was clear so I am also sure if there was anything worrying they would have seen it so guess that means I had an all clear a bit earlier.  Will know next week if they want to do more tests.

Expecting snow tonight - half way though having my roof replaced!!!!!!!!!!! Told it is water tight over night........what fun

Anyway off to make the most of the last few days of the holidays.  Hope you are all coping with everything.

Sally

Member Since:
19 May 2009
Posts: 41

wow - weeks since any updates here.  Hope that means you are all well and no recurrence or spread for anyone ........  Almost November......seems like the year is going very fast........

Sally

Member Since:
13 February 2009
Posts: 24

Member Since:
19 May 2009
Posts: 41

Raewyn

Good luck for the wedding.... We have show day here and hte A&P show yesterday - which is a big thing.  I have been getting leg swelling but really wanted to go to the show and take the children on an outting - SO got a compression bandage for the leg (they have ruled out blood clot by ultrasound) and I managed to walk around the show from 9.30am to 5.30pm.  think I must have done about 10ks!!!! So am feeling really pleased with myself.  Almost smug!  SO hope to get back out and moving with the three day weekend.  Weather supposed to be awful tomorrow.  Might even bribe the children to come for a walk this evening - but stopping at the dairy so they can get an icecream. 

Sally

hope everyone else that reads my ramblings are doing well.....  please say hi and give us updates if you feel like it.

Member Since:
13 February 2009
Posts: 24

Member Since:
13 February 2009
Posts: 24

Member Since:
13 February 2009
Posts: 24

Member Since:
19 May 2009
Posts: 41

Hi Raewyn - good luck for weather and just a great day for the wedding. 

I am on facebook but do not go there much........but happy to chat there or elsewhere if you ever want to chat....

I am still getting the swelling in the legs which is quite annoying but did not have any lymph nodes removed just "checked".  I have MRI And Chest X rays the week before Christmas so all I want for Christmas is a clear result.

as my daughter said the other day - we do not want cancer for Christmas!

Sally

Thanks for reading my Woman of the month thing.  Have now had to let the childrens father know about the cancer as realised once it was on here I could be googled.......  (world famous now!!!! ) While the children do not see him very often at all since his move to Wellington - been over 3 months now and in fact only seen him twice at most since I was diagnosed in May I do not like them keeping secrets even if it was their choice.  As long as there are no negative impacts for them I will be happy and it seems to have gone ok.   Will post before but hope all of you here have a peaceful and healthy Christmas. 

Member Since:
21 March 2009
Posts: 29

Member Since:
13 February 2009
Posts: 24

Member Since:
19 May 2009
Posts: 41

gosh we have been quiet.........

Hi Krista and all........ = things went well and the children enjoyed their time with the other children in his wifes extended family. 

My last results were clear - no spread and no local recurrence now - so 6 months out from second surgery......but is a couple of years now since the first presentation of the lump.

Raewyn

Glad the wedding went well........and nice to be back at work........am hoping to find something part time as my Doc said 20 hours a week but no stress would be good.......

Wondering how people will react to someone who has recently had cacner surgery though!

Ah well only one way to find out.

Still doing some more research regarding Hormone receptors as it appears mine are strongly positive for ER and PR and there seems to be mixed opinions as to what this should mean.

SAlly

Member Since:
20 August 2008
Posts: 5

Hi all, glad to say that my results came back clear & I am now on 4 monthly checks, so thats a huge step forward!! Im getting married on the 27th March so am feeling a tad stressed at the mo! I dont see my Dr again untill after the honeymoon so thats something I suppose.

Hope this email finds every one well & I hope you all had a wonderful Xmas & New Year.

Raewyn, im so pleased the wedding went well & the rain cleared just in time!! One of those dreaded things on your wedding day!!

Take care everyone....Nicky

Member Since:
19 May 2009
Posts: 41

Nicky - congratulations on your upcoming wedding  - please try and enjoy your wedding and do not get too stressed.....this is one amazing day but that is all and your health is really important.    I am thrilled you have moved to four month appointments.  I look forward to living in slightly longer chunks..... 

I am back to see them next week after getting a copy of my hormone receptor report - that said that it was strongly positive for both....and am now arguing regarding the sense in still having a Mirena that releases hormones......(their website states that I should not have it but Doctors do not seem to be worried - but I AM!!!!!)  However the worst news was the bottom of the report said that they had reviewed my excision tissue from July 2009 and it appears that the small margin that I had felt a bit reassured by was no in fact there and that they cannot be sure that they really got it all....... SO another battle and more questions to ask - And GET answers.

Anyone else have issues with hormone receptors and what was done - anyone on hormone inhibitors?

SAlly

Member Since:
19 May 2009
Posts: 41

wow it is quiet in here.......just had a clear MRI and Xray so all good this end (no pun intended)  Hope you are all well - in case anyone out there is reading this despite no new posts for the last 6 months almost.....

Sally

Member Since:
13 February 2009
Posts: 24