Member Since:
17 October 2007
Posts: 16

Hi - I am a Fallopian cancer survivor (this is treated in the same way as Ovarian cancer).  I finished my treatment 3-1/2 years ago and up until now my CA-125 levels have been in the normal range but have now found at my latest checkup that they have risen slightly above this range which now necessitates my having more frequent checks.

Has this happened to anyone else and if so, have these levels gone back down to normal on their own?  Guess I just want some reassurance that this doesn't necessarily mean that I am having a recurrence of the cancer.

Member Since:
17 October 2007
Posts: 1

Hi Janzy

This may or may not be useful for you but I had a mild stage ovarian cancer diagnosed almost 3 years ago.  Having the CA125 and CA19 levels checked every few months myself I have asked the same question of the doctors...what does it mean if they come back elevated?  The response I got was that these tests are just indicators and often not very good indicators at that! ie. they are not very sensitive tests.  Apparently there are many variables that can affect the accuracy of these cancer tracer tests.  I think that they look to use the results in conjunction with a whole raft of other indicators to determine whether or not further testing and/or treatment is recommended.

To give you a rounded perspective, I had the two cancer tracers mentioned above taken pre-surgery and they came back normal (!), only to find malignant tissue revealed later in the histology report.  Then last year one of my results came back slightly elevated and they decided to just keep monitoring me because there were no other positive indications - i guess the course of action is specific to each individual case but I don't believe that these tests are considered to be reliable or accurate on their own.  Do you have professional advice on this result?

I hope that has helped Janzy :)

Member Since:
5 October 2007
Posts: 32

Member Since:
17 October 2007
Posts: 16

Thanks to RLD and Jools for their replies.  I was dx as Stage 2C.  I originally had high levels but after the operations (2) and chemo these levels came down from 700 to 17 and have been around that level for over 2-1/2 years so this has come as a bit of a shock.  Guess I had got a bit complacent.

They want me to go back in 2 months instead of my normal 6 monthly check and if it has not come back down then they will do scans.  Problem is that is right on Christmas so it could be January before I get an appointment which would then make it 3 months and I'm not happy waiting that long to find out. I am thinking I will speak with my GP who is great and see if she can get me more regular CA125 checks in between, perhaps 2 or 3 weekly, then if it rises more fairly quickly she can alert Oncology outpatients and request a more urgent consultation.

Of course if it has come back down then that would be great.  It's the not knowing that gets you jittery!

Jools are you in remission now or have you had a recurrence and if so, what treatment are they going to give you?  Reading about treatments and aftercare in the U.S. it seems they treat Ovarian Cancer as a chronic disease.  Talking to doctors and oncologists here has been confusing and I have a lot of mixed messages.  Is that your experience too?  Would be most interested in knowing.

Hope everyone on this forum is progressing well and keeping in good spirits.

Member Since:
5 October 2007
Posts: 32

Member Since:
20 August 2008
Posts: 12

Hi Janzy,

I just wanted to share what Mum did with you, to see if it helps!  We were a bit unlucky in that we first found about the tumour on a New Years Eve, and then the recurrence on a Christmas Eve!  So I completely understand your concerns around Christmas time.  Mum had stored up some blood test forms and for her own peace of mind used to pop down a bit more regularly, particularly when she had started to feel 'not quite right' and wanted to keep tabs on it.  I cant comment medically on the appropriate intervals between tests for any rise to be meaningful, but I can say from a lay persons view, and with the worry that comes with all this stuff, that having that little bit of control over your testing and results, was better for Mum.  Now, if you find it is rising, you will of course get caught in the Christmas disruptions, but, my understanding is, they do now treat it as chronic disease, and any new treatment you may get, will not necessarily be immediate regardless of the time of year - your circumstances of course may be different, so dont quote me, but I just wanted to try and reassure you not to panic!  Easier said than done honey, I know!

One more thing - our NZ treatment regime for Ovarian cancer has typically been more in line with the UK, so that is why you may be noticing the differences when you look at those reports, and why we specifically chose more UKK orientated sites for our references on this site, on the advice of an Auckland Oncologist.

(Please note that this is posting is based on my personal experience and from discussions with medical professionals and patients and is not presented in any profesional capacity or as 'fact').

Member Since:
17 October 2007
Posts: 16

Thanks Rachel, that does help and your Mum was correct. I think that's what I need is some sort of control over what is happening.  When you get cancer everything somehow seems to spiral out of control and it is this emotional upheaval that is as hard to deal with as the physical effects of cancer. It's also hard to talk about your concerns with family as I find they don't want me even thinking about the fact that it could come back however, that is a reality that could occur and I don't always want to be bottling up these feelings.

The reason I mentioned getting mixed messages is that when I asked at the beginning of my regular check ups as to what would happen if I had a recurrence, I was told that they wouldn't do anything and I therefore assumed in my mind that a recurrence would be "the end" but after reading overseas sites and the fact that it is treated as a chronic disease and they keep treating it and trying out new treatments, made me wonder if perhaps here in New Zealand because of our funding and staffing problems in the health sector, that a patient with recurrent cancer was too easily "written off". Hopefully I have got this wrong.  I know doctors have to be realistic but do wish sometimes they could be a tad more positive.

Seems all I have done is moan to you all and in reality, things could be a lot worse and I am presently enjoying my life and intend to go on doing so .....  also the sun is shining, the sky is blue and we have a lovely long weekend ahead of us, so hope you all enjoy it.

Member Since:
5 October 2007
Posts: 32

Member Since:
20 August 2008
Posts: 12

Hi ladies,

Jools, you have an amazing grasp on all this, cand having met you, I know there is certainly no denial for you!  However, Janzy is in a totally different place, she may not even have a recurrence, and is kind of doing some 'preparatory' work just mulling over what she will and can do if she does.  So, Janzy, with Mum's recurrence there were a number of options for chemo etc, to keep knocking the cancer back, and that gave us another 18 months.  I guess in our case, every attempt was made to give more options, and in the end Mum said no more, in fact, she stuck the chemo tablets she had at the time, down the waste disposal!  Again, it was about power and control for  her, better than the docs saying no to her. 

I understand too, re not being allowed to discuss the worst, friends didnt like us doing that either, and while we tried to keep Mum's hope alive, we did have frank discussions too, and some terrible black humour, as Mum was inclined to do!!!

Good luck, put your thoughts here where they are safe, and I know we will have lots more women sharing on here soon too.  ANother lady who intends to hop on, is having her third recurrence in about 3.5 years, and is just amazing and you would never guess she is unwell, and still having treatment with a doc who is treating it as a chronic disease.

Have a great weekend, we are in Melbourne for the OCRF gala ball to see how they do it!

Rachel

Member Since:
17 October 2007
Posts: 16

Sorry, in my earlier post I meant to wish Jools a great time in the U.S. of A.  Also hope Rachel had an enjoyable visit to Melbourne and that the weather was a deal better than back here!

Member Since:
20 August 2008
Posts: 12

Hi Janzy,

Sorry for late reply!  Had great visit to Melbourne, worthwhile in that we visited the Prince Henry Institute and saw the facility for the early detection screening research.  Sounds promising, which is very reassuring long run for women with Ovarian Cancer.

How are you?  Hope you are feeling better and more confident.....

Rachel

Member Since:
5 October 2007
Posts: 32

Member Since:
13 October 2007
Posts: 3

Hi everyone,

I have a similar story, being diagnosed with ovarian cancer, stage 1V back in October 2005. I was being treated with IBS (irritable bowel syndrome) I very seldom had reason to go to my GP keeping reasonably healthy. However through 2005 I went to the doctors often because of pains in my pelvic region especially when I needed to have a bowel movement. Anyway, I went to see a specialist who confirmed that the diagnosis was correct. Finally, I was rushed to hospital with a pleural effusion and after scans found that I had 2 malignant tumours. I was shocked and thought I would go straight from hospital to Hospice. So I am extremely pleased to still be here 2 years later and feeling good.

Like you girls, I also found the medical people very depressing, stating statistics and saying it was incurable. Since my diagnosis I have met 2 ladies with friends who have had the same thing and were told the same things. I dont know what stage they were but one was very bad according to her friend and she is still alive 10 years later without occurence. I have her name and phone number but havn't spoken to her myself.

I would like to know what this Qo enzyme is as I havn't heard of it. Were you prescribed this by the medical profession or is it an alternative treatment. I am interested in any naturopathic treatment that may be beneficial. I am currently trying a treatment which are anti viral natural products. My prescriber says that cancer is a virus and is working on a book which will soon be published explaining his theories and has 40,000 verifiable case studies, obviously not all cancer patients.I have a lot of faith in this guy as he cured me of headaches which I suffered with for 10 years. I spent a lot of money going through the orthodox medical system but nothing helped. I went to him 3 times, he was cheap and although I was extremely sceptical, it worked.

So, if anyone has heard of anything that may be beneficial, please tell me. I will keep you posted on the book and when it is available. I, like my friend Wendy who is the woman of the month and has become my "phoneafriend", remain positive and 'accept the diagnosis, but reject the prognosis". I have to live my life that way. I could write forever, but have to make tea. Keep smiling, dont give up and best wishes to you all,

                                                                          Julie

Member Since:
17 October 2007
Posts: 16

Hi - Hope all on this forum are continuing to be well and think positively.  I haven't had anything to report until now as I have been awaiting a follow-up hospital appointment after my disappointing CA125 result back in October.  I did contact my doctor but she was reluctant to do another test so soon so have had to wait.

Finally went for my appointment today and was disappointed to find that my CA125 has jumped up slightly more so am now waiting for a scan which won't be until January due to Christmas.  So they were still unable to tell me anything.  Nothing to do but be patient but as you all will know, it feels if your life is on 'hold'.

I am going to try the CoQ10 in the meantime, as feel I have nothing to lose by trying as this is a natural vitamin.  For those interested in knowing more there is a NZ website - www.coq10.co.nz

This vitamin can be obtained in various strengths and according to tests done by the NZ Medical Journal, the one obtainable from them proved to be the most effective.  I am going to place an order tonight!

I do hope everyone enjoys a wonderful Christmas surrounded by friends and family.

Member Since:
13 October 2007
Posts: 3

Sherry, Who prescribed you with the coq10 enzyme? I havn't heard of it. Please tell me as anything is worth trying.

                                  Jules.

Member Since:
17 October 2007
Posts: 16

Hope everyone has enjoyed a wonderful Christmas and New Year.

This is an update on my original posting re my rising CA125 levels. 

Went to the hospital this morning and my CA125 levels are up again (3rd time).  Apparently they think I’m an enigma because nothing showed on the scans but because of my still rising levels they are certain there is a tumour somewhere so they are now sending me for a scan of my neck as apparently some small nodules showed up on my goitre and they want to investigate this further though they think these are nothing to do with the cancer. I will also be having a coloscopy because apparently the bowels don’t show up properly in a scan. 

Member Since:
20 August 2008
Posts: 12

Hi Janzy,

I am very , very sorry to hear that, I really feel for you with that 'waiting and worrying'.  The CA125 testing is scary each and every time.

I can't comment medically of course, however it sounds like you have a good understanding of what will happen and in what order from your medical team.  I was just rereading your earlier concerns about recurrence being 'the end' and nothing being done for you, so hopefully the care and attention you are getting has helped you feel better about that part at least!

Please let us know if there is any support or assistance we can offer here at Silver Ribbon. And I hope you get lots of support via the chat site.

We have a lot of great plans this year and the foundation will really grow, so we hope to offer you more services and support - any ideas welcomed Janzy.

Take care, and in our next newsletter, there will be a book review on a book called 'Hope', written by an Ovarian Cancer Survivor, who also had a relapse, which you might find comforting.

Rachel

Member Since:
17 October 2007
Posts: 16

Thanks Rachel.  I look forward to the book review and the opportunity to purchase it.

Think perhaps someone should start up a new thread in this chat room as I would love to hear how others are getting on.

Are you back from your travels Jools?

I didn't go ahead with the CoQ10 Sherry as I keep reading about all different kinds of naturopathic treatments and then get confused!  Jules mentioned an anti viral product she is using but am not sure what this is called.  Perhaps some pointers and research notes on these types of products might be an idea for inclusion in this site Rachel, though I would not be happy for women to put all their faith in these treatments to the detriment of conventional medicine.  There are so many mixed messages out there and some doctors and oncologists warn against taking too many of these products.

How many women out there have OC or are survivors?  Not many seem to be aware of this site as yet, and I'm sure it could be of immense benefit to them to have the support of fellow sufferers.

I don't want this chat site to be all about me, so please could others share their thoughts and happenings too.

I look forward to reading what you have all been up to during this wonderful summer weather.

Member Since:
20 August 2008
Posts: 12

Hi Janzy,

all agreed!  we are in the process of business planning, and attaining some good sponsorship, so you will see a much higher representation of SR this year.  Its a very big job!

Also, there are others who visit the site but who not be brave enough to post something yet.. but I hope your words will encourage them to do so! 

The book is:

Member Since:
20 October 2007
Posts: 6

Hi Everyone,

I was diagnosed with stage IV clear cell carcinoma (ovarian)in March 2007 and went through the horrible dark period from the doctors words like you have mentioned.  I have always been a positive person and an optimist and I nearly let them change that.  For a short time I let them alter who I am by losing hope.  I dont know why they can not say that these are the odds but there is always exceptions, at least that is not false hope and gives you hope and strength thinking you could be an exception.  There are too many survivors that have beat the odds of their prognosis for them not to acknowledge to us that their are exceptions.  I found considerable strength in finding just one survivor in the USA that had my diagnosis and is in remission after 9 years, it made me think if someone else has achieved that then why cant I instead of believing that there is absolutely no chance that I will survive like I was told.  I know that if I had been told that exceptions do exist I would have handled my prognosis better and so would have my family, I would have found it easier to pick myself up and the fears would not have been as dark as they were.  The start of picking myself up came from people repeatedly tell me that they believe I can beats this, by finding survivor stories of beating the odds, by reading books like Hope that Rachel has mentioned above (book review attached as another chat topic) and with lots of visualising myself winning this battle.  My ca 125 was 3900 and I was told my chance of getting into remission with the chemo was practically impossible but i got into complete remission so I believ there is always hope, if I am wrong it doesn't matter because I would have enjoyed my days on this earth a lot more by feeling positive and hopeful.

Member Since:
20 November 2007
Posts: 6

Hi everyone especially SDF

I was diagnosed with ovarian cancer in January 2007 and went through the surgery and chemotherapy stages, and have Stage IIIC with a preop Ca 125 of 1735 and now hovering between 4 and 6.  While I am absolutely thrilled with this I would like to say that I made it my business when I was given this diagnosis  to find out what I could about it andhave to say at all times I was treated like someone with a brain (not just another case) and all my questions were answered honestly, from GP to specialists to Oncologists.  I must say I frightened the wits out of myself by surfing the net and reading all sorts of things I probably shouldn't have.  If I was being honest I would have to say I lean rather toward pessimism and family and friends couldn't get over how well I took the diagnosis.  Had to say that this was one thing I have no control over but that I can control my resonse to it and take each day as it comes. 

Rachel, I think another good topic to start up would be chemotherapy.  I struggled through this and found out from various people things that helped and it might be good for someone starting chemotherapy or going through another course what might help the grim days.

Member Since:
5 October 2007
Posts: 32

Member Since:
17 October 2007
Posts: 16

Hi everyone.  Have been keeping myself so busy lately that it was only when I received the February newsletter today that I checked out the chat forum and felt very guilty I hadn't been paying attention and posted earlier.

First of all I want to thank Jools for her so generous offer and I have emailed her separately.

To SDF - how wonderful to hear that after such a terrible prognosis that you are now in remission. This must be very encouraging to you.  I am constantly amazed at the women out there who have endured having all their hopes for the future seemingly taken away from them, fighting back and surviving the odds.  I think you're wonderful!

Nolls is also another person who has beaten the odds and I hope she and SDF continue to do so.

I go back to the Oncology outpatients on the 27th and will find out the results of the lab tests on the polyps that were removed when I had my colonoscopy a couple of weeks ago.  Haven't had the neck ultra-scan yet, maybe that won't be necessary.  Anyway I am feeling absolutely fine and have decided I'm bored with thinking about my health so am just carrying on with life as usual and if and when hospital visits and tests come up, will deal with them at that time.  I'll let the doctors do the worrying - I'll keep on enjoying myself.

Now last but not least, to Rachel - you're doing such a great job on this site.  I like all the new features and thanks for including Fallopian cancer with the Ovarian cancer pages.

Member Since:
20 August 2008
Posts: 12

Hi Janzy,

thanks for the feedback!  we are really geared up for a huge year, the business plan is comprehensive and we are all set to make a difference.  Its good to read your posting and your reslience to this rollercoaster of ovarian cancer (fallopian for you).  Hope you go well on the 27th!  Any ideas from you are most welcome...

Rachel

Member Since:
20 October 2007
Posts: 6

Hi Janzy,

I haven't been on the chat room for a while.  How are you doing, have you had all your tests and did you end up having a PET scan?  Thinking of you.

SDF

Member Since:
17 October 2007
Posts: 16

Thanks SDF for enquiring.  Funnily I was about to post an update on what is going on with me so had come online to do that and saw your post.

Since posting in February I seem to have had a myriad of tests done - a ultra-scan on my neck, another CT scan, and last Thursday another ultra-scan and a biopsy on my thyroid.  That's on top of the ongoing blood tests which still show a steadily rising CA125.  Reckon they know my body better than I do now!!

Paperwork is at present going through for me to go to either Sydney or Melbourne for the PET scan. As of last week I was told it was going before the Variance committee (whatever that is!!) on Thursday but have not heard any more since.  Something did show up on the scans - a small growth deep in the pelvic area which had gone from 7mm to 11mm in the period from the first scan to the most recent.  Too small and too awkward to do a biopsy on and the surgeons don't want to operate without a better picture of where it is located.  Talk about being awkward - Dr Chrystall said that I am the only Ovarian cancer patient they have had to refer for a PET scan as finding the cancer is normally quite easy.

As I don't seem to follow the norm I am therefore hoping that my rising CA125 levels don't necessarily mean the cancer is back.  That would confuse them even more!

Hope you and everyone else are keeping well and have enjoyed the lovely summer.

Judy

Member Since:
20 October 2007
Posts: 6

Hi Janzy,

Thanks for updating us all.  Believe me I know exactly what you are going through from 1st hand experience, so much so that I have put off having my ca125 blood test for the last 3 weeks.  Even though my recent PEt Scan is completely clear those ca125 tests haunt me

Member Since:
5 October 2007
Posts: 32

Member Since:
20 November 2007
Posts: 6

I have not looked at Silver Ribbon for quite a while and was surprised to see that in the Ovarian Chat Room there was not much going on.  I must say when I used to look at the Chat Room it was a look only and I think I only posted twice.  I have been fighting my own wee battle with a recurrence of my cancer and have just completed six courses of Carboplatin and Gemcitabine as second line treatment.  My Ca 125 is a good marker to show how my cancer is progressing/regressing and today I can say that it is 10.  To celebrate that my cousing and I are going to Scotland and Europe for a trip to celebrate because celebrate is the name of the game.  I have held the devil at bay for a while longer.  It was nice while undergoing the chemo to have something to look forward to and lots of planning.  It would be nice to hear from some of you previous ovarian chat room users, and perhaps some new ones, just to know that you are not the only one out there.  Jools, your posts were an never ending source of comfort to me when I was going through my first course of chemo.  I hope you are holding up okay.

Nolls

Member Since:
5 October 2007
Posts: 32

Member Since:
20 November 2007
Posts: 6

Thank you Jools for your advice.  It is hard to look pathetic when the reality is that I look perfectly healthy and am quite overweight.  Never lost my appetite while undergoing both courses of chemo.  Must admit I am taking longer to get over this one but every day is better.  We leave next Monday and this trip also was from the bucket list and will cover quite a few things that I want to do.  Am looking forward to a serenade down one of Venice's canals.  Too much to hope for a handsome young Italian but then I am not a young beauty.  (LOL).  Hope you are still feeling fine.  Cannot see any remarks from any of the other regular users of the ovarian chat forum.  I am not thinking about my CA 125, like you get a bit stressed before the 3 monthly check and won't be having one until October when I will be well and truly back.  Had a portacath inserted for this lot of chemotherapy and it has been extremely helpful.  I have small veins that run away every time a needle comes near them and it has been great not to fight to get a needle in a vein for the chemo.  Enjoy the rest of your trip.

Nolls