Anyone else with clear cell OC?

[Martina18]

Hi, I was diagnosed with clear cell OC in June 2013. Stage 1c, possibly 2c, they couldn't quite decide. Everything out, 34 lymph nodes removed, 6 months of taxol/carboplatin. My question is - ARE THERE ANY LONG TERM SURVIVORS OF OC OUT THERE??? if you did have a recurrence, when was it and how are you doing now? I know it's a very aggressive subtype, pretty rare, can be resistant to chemo, and not as much research about it. Stuff I am reading on the internet is scaring the wits out of me. Pretty high rate of recurrence even for earlier stages, average time to recurrence about 36 months. I feel like my days are numbered. HELP!!!

[annieH1]

Hi Martina,firstly,keep away from Google! That information is out of date,you have to remember that the stats they are writing about were for the previous 3-5 yrs and so much has changed regarding treatent in the last 2yrs .We're all individuals and respond differently to treatment but we are not statistics and I certainly will not view myself as one and either will the oncology team.There are many women on here that are surviving with O.C for over 5 yrs and more and I hope to be around for a long time yet! 👍🏻😜

[lesleysage]

Morning Martina,

I was diagnosed with clear cell OC stage 3c in May 2011 and given less than a 20% chance of still being alive in 5 years. I finished the first chemo (carbo + taxol 21day cycle) in October 2011 and tumours regrew by Jan 2013 in the lymph glands very close to the aorta and renal artery. I am under Addenbrookes and at the time they felt an operation was 'too risky' because of the 'high morbidity rate'. As I felt so well in every respect my GP backed my request for a second opinion which we had from the West London Gynae Cancer Unit at Queen Charlotte. To cut a long story short the surgical team were successful (I think they were as delighted with the outcome as we were!). Returned to the oncologist at Addenbrookes who, because I was a fit 67 year old, put me onto 'dose dense carbo + taxol' plus fortnightly Avastin. I concluded this in late Aug 2013 and so far, no recurrence. We know the prognosis from the medics is less than a 2% chance it won't be back at some point, but I'm 70 in April and keep pinching myself as I will certainly be in this 20% plus something no-one dared hope...also in complete remission!. My GP's advice (this site has heard me say this so many times!!) has been my key: "You concentrate on growing healthy cells and leave the killing to we medics". "How do I grow healthy cells?" was my weak plea!! Eat sensibly, exercise well and rest well" came his reply. I've turned that into "Not that difficult to look for every opportunity to be happy (mainly children and grandchildren + some new friends as well as those 'old' ones who have been able to cope with me feeling on the brink at times), make healthy choices, go for walks, go swimming, join in our local pilates class, enjoy baking and cooking foods my tummy can now cope with, find hobbies and podcasts to occupy and stimulate me while my feet are up...etc. etc. Into this I add my 'favourite work' as I have been very fortunate in being self employed with three very loyal clients who have worked with me over this past 5 years so that I've done less and less as we've recruited others to take over the bits of my work I wanted to be moving away from; I now do no more than two days per month, some months none and the next 3 so very little...but mentally I can still contribute and we use video-conferencing to save me traveling whenever appropriate.

If you've any specific questions, please do ask. And I certainly agree with Annie H, the internet plumbed me to the depths so the challenge is managing what we are told and read about, which can only be based on 'history' versus all the stuff we can try for ourselves and from learning what makes us healthy physically, mentally and emotionally. We can make, and are making, the next history different.

Hope today is good, Martina.

L xx

[Martina18 in reply to lesleysage]

Hi Lesleysage - Thank you so much for your reply! I am thrilled you are doing so well. I am in the US and am especially happy to see what other countries are doing. I have traveled all over the UK and love it there (my husband had a sabbatical in Cambridge at the university 15 years ago). I am going to ask my oncologist about Avastin. He is from the UK Dr,. Richard Penson and up at Massachusetts General Hospital. He suggested radiation but the permanent fall out sounded ghastly (fecal incontinence, etc) and I opted not to do it. Just would have killed quality of life. Were you given this option?

Having OC is an isolating experience in and of itself, but among the women I've met no one has clear cell which I know can be resistant to the carbo/taxol. I was 51 when my cancer was dxed. I had not started menopause so an overnight surgical menopause was fun. Ironically, since there is a family history of breast cancer in my family (my mum died from it 40 years ago and my sister is a 12 year survivor who tested positive for BRCA, which also confers a high risk of OC) I was tested 10 years ago (I had been unsuccessfully trying to get pregnant) and was found to be negative!! So then I get OC anyway. Go figure.

I have to be honest, cancer has totally disrupted my life and I am trying to start over. I lost my job in the middle of chemo, I am a child psychologist and was working in a hospital and had exceeded allowable leave time. I lost medical benefits and had to get government assistance as my husband has been unemployed as well. Then, the chemo did something to the joints in my knees and I then had to have 2 arthroscopic knee surgeries to remove damaged cartilage. I am still not pain free from these. I also have lingering neuropathy, numbness from the lymph node removal, and GI issues which my doc thinks is a form of intestinal neuropathy and results from 2 pelvic surgeries and are difficult to cope with. Honestly. What kind of GI issues do you have? Believe me I am thrilled to be alive and cherish every day!! I did ask my doctors for some antianxiety meds after diagnosis bc I was really a wreck emotionally after seeing my mum suffer so much from her cancer death and envisioning the same for myself.

I am starting my act 2 in life and now work in a school as well as trying to set up a small psychoeducational practice with my husband. We threw caution to the wind financially and went to the Azores this summer, somewhere we've always wanted to see (there are a lot of Azorean immigrants in our area). It was wonderful. I just can't get away from the feeling that this is going to strike again and we will be powerless to get it back into remission. My grade 3 tumor (which had doubled in size in about 3 weeks from imaging studies) burst during the surgery and as we know all it would take is for one of these darn cancer cells to start multiplying. And from what I have read the clear cell type is often resistant to the chemo, they don't seem to have special kinds for us. I need to concentrate on visualizing those meanies being killed off by the surgery and chemo. Such a sneaky and ghastly disease, even among cancers.

I will be rooting for you as you approach your 5 year mark. I will be having my 2 1/2 year check in May (for me, they are counting time out from chemo, when I was considered NED , I have heard other people say time from diagnosis is the counting point, so not sure on this).

Again, thank you SO much for your reply. Gives me hope.

Warmly, Martina

[lesleysage in reply to Martina18]

Hi again, Martina,

I'll try to answer your specific questions: on diagnosis, I had standard carbo+taxol as already said. On recurrence 15months later the oncologist's advice was radiotherapy & some chemo to try to shrink the tumour away from the aorta and renal artery before an operation would be considered. This is when I asked for the second opinion as I felt weak at the knees when thought about another breastbobe to pubic bone opening up after 3 months of chemo! So, because I found the London based team who, having looked at all my scans and operating notes from the total abdominal hysterectomy & lymph node removals (can't remember the posh medical word), felt they could try and I decided to let them. Hence I've never had radiotherapy.

Neuropathy: most definitely "Yes"! Toes, especially, are permanently numb and fingers weak and very quickly get cramp and aches; joints generally ache, muscles are definitely weaker as my grip, strength and stamina is really reduced. Before diagnosis I could swim 25m pool length in 28secs, after first chemo, best I achieved was 35secs and now, well over 2 years after last chemo (finished Aug 2013) I am somewhere between 40 to 48 secs as some days have so little energy! When we walk in the countryside I used to manage 10 miles easily, now five miles with two walking poles is brilliant! I regularly miss my step and lose my balance because I can't 'feel' the ground properly, hence the poles.

GI problems: my tummy is still 'picky' about what settles and what regurgitates (not sick) but it will now accept good quality wine (!!) in small amounts (125ml-175ml on a very good evening). Also much smaller quantities but that's not a bad thing, I know. My weight is now holding steady on what I can eat.

Bowels: never were the best part of my functioning and now need daily help, even all this time later, with a power prescribed by my GP and even with help it falters and feels unreliable/inconsistent.

Yes, my time is counted from NED at end of chemo, so I will be tested every 3months until 5 years after last chemo and if still no recurrence, we may feel brave enough to push it out to 4 to 6 months! Would be brilliant to have to make that decision, as we'll all agree.

Avastin: I had nose bleeds, mouth ulcers (possibly because of carbo + taxol as well?) and my blood pressure has had patches during chemo & since of being erratic, but not bad enough to need pills for it.

Genetic testing: my dad died of bowel cancer and my cousin has had breast cancer, so I was tested for Lynch's Syndrome (negative) and my cousin & I have just given consent to join the Breast & Ovarian Susceptibility Study (BOCS) being run by Institute of Cancer Research, here in UK.

I agree, visualisation is good! I still think through mine, not every day but every now and then. Mine made me smile a lot as well as get my fighting spirit in good order!

Warmest wishes and really good luck for your business idea.

Lesley

[Hidden]

Hi Martina, I had 27 rt treatments in 2012 and I managed fairly okay. I had the older type rt which is available here, ie you get scanned and measured and then you begin your treatment a few days later just a few minutes. I got no scarring or itching on the spots done. I did have to ditch the tights in case of thrush. I managed the loose bowels by reducing the fibre intake and I didnt have much side effects just tiredness. We all differ with treatments of course and side effects I am not sorry at all I had it as it bought me more time before I needed chemotheraphy. My last treatment was Gemzar and Avastin and stayed on Avastin for two years. I am drug free at the moment with last scan stable and I am hope to stay stable. There appears to be a cap on Avastin now just two years. I had no major side effects, a little nose bleed now and again and perhaps the tummy played up but no big time side effects. I wish you well and you do what you feel is right for you.

[daisies]

Martina18. I also have clear cell OC, but stopped reading the 'stats'. My wonderful Oncologist did some of his training in US and has answered every question I ask and has researched info for me which he thinks I may be interested in. I am in Ireland and just getting ready to head into 5th line treatment.

will post another day with more details - but talk to your ONcologist and Liaison Nurse who will ease your mind.

Regards and hugs,

Daisies

[magsk1971]

Hi Martina18, I was diagnosed with clear cell OC in 2007 and had recurrence in 2012 in the lymph nodes,they removed all abdominal lymph nodes and had radiotherapy and all is well today,try not to think too far ahead,enjoy one day at a time and eat healthy foods and try to go for walks or something you enjoy and stay away from google it'll fill your head with rubbish.

[Martina18 in reply to magsk1971]

Hi magsk1971 - Thanks so much for your reply. One doctor had told me that for clear cell OC in particular, there was a pretty high rate of recurrence for the first 3 years especially, regardless of stage, and still pretty high up to 5 years and then according to him, if you didn't have a recurrence in that time it was unlikely to come back, unlike other subtypes in his opinion in which the recurrence rate never goes away. Don't know how true that is but sounds like that was your experience in that it recurred by year 5?

I am only 2 years out and high risk; the tumor burst during surgery was high grade etc etc. I am trying to rebuild my life but want to be prepared realistically for what may come. My husband worries endlessly and I want to arm him with some possibilities while knowing we are all different from the statistics. I lost my job through my illness, had 5 (!!) other PT and consulting gigs whilst trying to get back working FT, am struggling with financial issues, and had 2 other surgeries for joint problems from the chemo, so it has been hard to just move on! Can I ask what stage you were upon initial diagnosis and what they originally told you about your chance of recurrence?

Anyway, I am so glad that everything is going well for you. They don't use radiation as much in the states as they seem to in the UK. One of the doctors I consulted is (the same guy who told me the above information) from the UK and he told me to do radiation after my surgery and chemo but I was petrified about what sounded like almost definite permanent side effects such as fecal incontinence etc so I chose to not do it. He called it WAR - "whole abdominal radiation" and that scared me to no end. I do worry about that choice and hope it doesn't come back to haunt me. Sounds like the radiotherapy was not as bad as all that and that may be an option I need to entertain if I have a recurrence.

Thank you again and I'll look forward to other posts.

Martina

[magsk1971]

I had stage1 OC initially and the tumour had leaked also ,I was told also that it can recur within 2 to 3 years but its very rare for it to recur in 5years.I was just unlucky. Radiotherapy was tough and was very sick but i got through it. In 2012 after surgery my consultant had been to a cancer conference in Canada and the top guys there recommended radiotherapy as the best option,I'm living in Ireland and I'm 44years of age and I feel great and don't take any medication and no side effects just every thing back to normal.Stay positive and take it easy ,you'll look back on this in few years time and you'll wonder what all the bother was about ,best wishes to all

[daisies]

Martina. This is Daisies getting back to you again. I am of course so sorry that you are in the same 'club' as all the wonderful ladies who post on this great site.

Originally diagnosed in Dec 2010 - so am I a long term survivor, I like to think so. Yes, I have now been told that it is back (yuuk) and heading to 5th line chemo. I still live on my own and thankfully have never had to get someone to sleep-over due to my illness or go to my sister's house to sleep, because of illness.

I learned the hard way - don't go through Internet searching - never quiet the right information and always the most serious situation. I know there is medical advice available from a Nurse son HealthUnlocked - and I am sure there is a support group near your home/town/city in US.

Treatments & drugs will be different for each of us with OC and also for those of us with clear cell OC and that is down to various reasons. I didn't have radiotherapy, as nothing to 'zap' . but on 1st recurrence the tumours had spread over a wide area and Onc felt too much radiation and possible of damage/burns to bowels. The main side effect from chemotherapy with me is also constipation - but we deal with that : horrible I know, but it is a great indicator if something is wrong, as it can mean a blockage.

So drugs etc - had Carboplatin and Taxol when diagnosed, when it recurred (after a period of 19 months) same drugs used. Avastin was then my maintenance drug for 30 months - when it recurred again Taxol was dropped then as peripheral nerve damage was done, so Carboplatin & Avastin only. Next time round it was Carboplatin & Gemcetabine, but very reaction to Carbo, so changes and just Gem and Avastin added in again. Gosh, when I read them back - my inside must be really toxic!!! Going to be treatment with Topotecan and Avastin is dropped : as the tumours were growing when I was on full chemo last time.

Yes, it can be hard to accept it, but if I can get up every day, make arrangements to go out to meet friends - not doing too bad. SItting at home being 'sorry for myself' won't help me or anyone else.

So like all the other ladies - it is chin up, slap on my make-up and smile when I head out.

Do keep us all posted on you progress and we are all hear to listen to each other, offer a hand of friendship- even if only virtually, but you know what I mean,

Big Hugs and Regards,

Daisies.