Surgical choices for stage 1c clear cell OC

[katy000]

I have recently been diagnosed with stage 1c clear cell OC.

I have been given a choice between the recommended treatment; full hysterectomy, removal of ovaries and a section of bowel. Or the experimental treatment of removing the affected ovary and biopsying the other areas to check for first signs of cancer and only removing them if necessary. I also have endometriosis, as I think do most people diagnosed with clear cell OC. The doctor wants to treat all the endometriosis as potential cancer hence removing a section of bowel even though there is no sign of cancer there at present (endometriosis is present on the bowel).

Which ever approach I choose I will be given 6 months chemo.

The problem with the experimental approach is that there is very little data as to the effectiveness as most women choose the recommended treatment.

As I don't have children yet I'm not keen to get a full hysterecomy unless absolutely necessary.

Has anyone else been faced with this dilema? What did you do and how did you get on?

[SaraL]

Hello. I'm sorry to hear about your diagnosis. It is a tough decision, for sure.

I was 40 when I was diagnosed last year. I had the first op to remove the affected ovary, then the other ovary was biopsied. Nothing was found in the right ovary, but it was thought best to remove everything, including the omentum and lymph nodes (though these were ok) - I was told that if this type of aggressive cancer returns, then it is not curable. (I had exactly the same cancer and grade as you, and also had endometriosis). Removing part of the bowel was never discussed - I have scarring on there from endo. I was given six cycles of chemo, and have been in remission for eight months post-chemo.

I consider myself extremely lucky in that I had two very small children already (aged 2 years 3 months, and 11 months respectively when I was diagnosed).

Of course, it's a decision only you can make based on the information you have been given - and it is a difficult decision to make, given that you don't yet have a family, and clearly would like one. But perhaps this option has given you a ray of hope? My personal line of reasoning when facing impossible decisions was, if I don't do (or do) such and such a thing, will I regret it later?

Have you explored the possibility of IVF and storing your eggs? Would there be time to cleave your eggs before the operation? Do you have a partner already that would be happy to create embryos that could be used at a later date? If not, would you be willing to go down the route of having donor sperm? I'm sure your mind has been around all the possible scenarios.

I wish you luck at this difficult time, with both your decision-making and your treatment.

[charlie12]

Hi Katy

I am so sorry that you are faced with this diagnosis and this dilemma. at such a young age. I fully agree with Sara's points made above.

Just a couple of points to share with you, which I hope may help you

1. The experimental treatment to which you refer is offered relatively commonly to younger ladies with borderline ovarian tumours , which I had. Once you have finished with having children, then the full hysterectomy etc is usually recommended, I think.

I have read reviews that show that the rates of recurrence are no higher, but as you know borderline is considered to be a not yet invasive form of OVCA.

2.I learned to my cost that the only way doctors will definitely know with 100% certainty what is wrong with you is when you are opened up and the organ is examined by a pathologist. So if , God forbid it has spread , you may find that you will need the full surgery anyway.

Do take care and good luck with the operation

Charlie xxx

[bells]

Hi Katy

I'm really sorry you are experiencing this with the rest of us, however this forum is remarkable in offering support.

I am not sure what I can say to offer advice, but I was diagnosed with same stage and grade back in October. I am 40 and have two young children, therefore the answer was much easier for me. I did have a radical hysterectomy, appendix removed and all non 'essentials'. Thankfully the biopsies were all negative and for belts and braces I am receiving chemo.

The tumor was actually discovered after an endometriosis cyst had ruptured and I had a laparotomy to remove it. The cyst exposed the tumor which was cowardly hiding deep inside, and my surgeon removed the attached ovary and fallopian tube - she did an 'eyeball' scan of all organs within the region to look for dark spots. However this was not an official staging. This was only done with hysterectomy. My point is that charlie12 is right in that they can only really feel confident once they are inside and see what is going on. Endometriosis is technically a benign disease which can easily spread to the other ovary, and mine turned malignant.

Only you know what is right for you, it must be very tough for you to know what that is right now particularly as you want to act quickly on the recovery process.

[TinaWright]

Hi Katy,

It would be easy for me to say, "don`t take any chances and give consent to do what needs to be done to ensure your best prognosis possible" because I am a 53 yr old grandmother. But I have had such a fear of cancer after losing my mother to OC at an early age, I would not even need to hesitate.

If you save the organs to have children you risk termianal reocurrance and your children will lose their treasured mother at a young age. Its a gamble and I wouldn`t gamble with life sweetheart.

Only you can make the right decision but make that decision for yourself, the one that feels right for you. I always believe in following my gut instinct. If you have doubts talk to your oncologis, who I think will know best.

Its bad enough having a cancer diagnosis, but when we are faced with such decisions it makes it even tougher on us. I have two friends who was not able to have children, it wasn`t the end of their world but it is when you may face a terminal cancer. I would never want to be without my children or grandchildren and if I was faced with a decision now - between me or them, I`d want to save them rather than myself, but to do this when they don`t even exist isn`t an option sweetheart.

Please do right for yourself - love with a hug from Tina xxx

[wendydee]

It's a hellish decision, but maybe my experience of having tried to have children for 22 years and not being successful can help. I too had endometriosis, hugely heavy periods, pain, etc. I was offered a hysterectomy at the age of 40 but still believed we may hit it right and get pregnant. I still wonder what would have happened if I had! Would I have got OC later? The thing is, you never know .... you can just go by info from the medics, instinct and emotions. A difficult balance. I spent many years thinking about what I was missing by being unable to conceive, but gradually I made a conscious decision to focus on what was good in our lives. I'm now 61 and have a huge appreciation of what I enjoy --great husband, family, friends, nieces and nephews, travel, interesting hobbies and pastimes, food and drink. You get the picture! There is life after an op, if that's what is needed. I'm sorry if this doesn't help but it may give a balance to your thinking.

All the best,

Love, Wendy xx

[Sarah23]

Hi everyone,

In america they call it complete response not all clear, it's so hard to know what to belive, even your own oncologist is not 100% if the O.C will come back usually around 2 to 3 years at the earliest, he has no way of knowing what will happen to a women in the future with O.C this is a small guide, your age your overall health, if you are Black or older, tumour response to treatment, the more tumour left behind poor prognosis, it just a waiting game

from sarah23

[tanya36]

Hi, I was diagnosed with 1a o.c and it was a grade 3 clear cell cancer in dec 2011. I am 36 years old and have not had children yet, as soon as I learned that they normally do a complete hysterectomy, I said that if it was at all possible to keep "my bits" then I would like to, but obviously if my life was at stake then to do what was needed. - because at the time they weren't sure what they'd find.

I had the op which was supposed to be keyhole but turned out to be a lapparotomy because I had a 10 cm cyst. Luckily they just took out my right ovary, and now I have started having chemotherapy, I am due my second cycle this friday.

At first they said that chemo would destory the other ovary, then When I was told that I was having the carbo/ taxol treatment, they said that it doesn't tend to effect fertility. There wasn't time to harvest any eggs before I started treatment, so I'm taking the chance.

I asked my oncology nurse to tell me what the chances were of the cancer coming back with just having chemo and just having surgery, and the answer was that it is the same neither treatment would be more beneficial, I found that quite reassuring, although it is a bit scary when they said that if it come back it will be terminal! but its a small chance and one that I'm not prepared to think about at the moment.