From Sarah
I would like too know if the size of a tumour makes a different if you have a recurrence? mine was very large but was completely removed, or does recurrence just happen regardless? what ever size or stage, or suptype? I hope this question doesnt sound to stupid!!
thanks Sarah P.
Hi Sarah,
At our last meeting I taxed my gynae-oncologist about the likelihood of recurrence. He looked through my notes, and said that, although he could (of course) make no promises; my tumours were both large and came out whole. He said that, in his experience of 25+ years, 'big lumps removed cleanly' were good, despite the stage of the disease.
I had tumours on both ovaries and the cancer had migrated to a lymph node. I've been in remission for 2yrs and 7 months.
Best wishes,
Isadora.
Thanks Isadora,
Do you mind if I ask you what type of tumour you had? mine was a clear cell, which they say is a more aggresive type but works well with chemo, that's not bad going 2yrs and 7 months I hope you get too 5 years and beyond, have you ever asked the oncologist if it is possible for you to get to the 5 years? I guess they cant really give us an answer to that question, I have often wondered how I got O.C they say it as a lot to do with age and going through the menopause and just a one off, more than anything else, its such a shame all of us women go through so much at the beginning only to be told there is no cure just treatment, and that it can come back like a cronic illness, they say they have lots of treatments on offer, we want a cure thanks!!!
Thanks again Isadora.
Hi Sarah,
I am so sorry to her about your diagnosis. It would be wrong of me to dare to comment on your Oncologists diagnosis, but I hope and pray that they did get everything away and you will be fine.
I had stage 111c and had the full de baulking surgery with removal of ovaries (I'd had a hysterectomy when I was 42), spleen, small amount of the bowel and cervix and just a general abdominal scrape. All was clear to the eye but of course I was then put on chemo 6 weeks after surgery.
I then developed secondary in the lungs and lympth nodes. I am now into my 5th year, it will be 5 years on 31st Oct since I had surgery so with the right treatment, correct frame of mind, oncology team behind you with good drugs and a healthy diet we can get to 5 years and I am determined to get beyond.
It hasn't been easy . In all these years I have had about 8 months off chemo and have been going non stop now over 2 & 1/2 years on maintenance treatment. I will never be in remission, but I live in hope that more drugs will soon be out that will be of benefit to me. I think the treatment for ovarian cancer is thankfully changing - at last.
Oh and what are the causes, if you have had a hysterectomy or children you are less likely to get it , well that is wrong in my case,. It can be genetic, but they think mine is due to years of being on HRT. This was because I have taken steroids from my early 20's for chronic asthma, then with the hysterectomy I was advised to go on HRT to prevent the brittle bones after the surgery and years of steroids In those days breast cancer was the only side effect of HRT now we know also o/c is.
Good luck to you and also Isadora
Anna x
It's a good sign if the tumour has been completely removed by surgery. I think with OC you have to try to force yourself to be optimistic. Often it seems that OC is unpredictable - one woman can have late stage disease and then remain disease free for many years, another with early stage disease can recur.
By definition, the survival statistics are at least five years out of date. New treatments are coming - I know there are several different chemos on trial for clear cell and I've heard that a drug called sutent, which is usually used for kidney cancer, has in a trial had some remarkably good results.
It is so easy to worry and fret and so difficult to be positive. I think we all go through the dark times, especially in the first few months after diagnosis. When these times come I think of all the women who've gone before and survived. Like Spanishanna we have to keep on fighting and keep on believing that we will win.
Hi both,
Thanks for your good wishes! I wish you both the bestest best there is!
Anna, I'm sorry you will never be able to be in remission. I have always had a massive suspicion of HRT - not least of all for the ways they garnered the hormones in the early days, at least. It has never made any sense to me although friends have often told me how much better they feel on it.
I hope sincerely that 'they' find a treatment that can get you the best possible outcome.
Sarah, I'm going for cure! I don't think it helps me to concentrate on the statistics; they can be self-defeating. I try to live my life in ways which give my immune system as good a chance as possible to deal with any cancer cells in my body (so that's diet, stress and exercise). After that, I have to hope for some luck and be thankful for each day, week, month and year. There are so many other causes of death that can come along too, and life's too short anyway to worry. That's not to say that I don't .... but I try not to let it get too strong (which is easy until something changes). Yes, I know what the stats say about my recurrence expectancy, but stats ruined my working life, and gave the Government the mis-information which led them to withdrawing funding from useful ways of working. I know that they are based on inaccuracy, gathered in unscientific ways, and frankly have very little to do with reality. I also know the power that doctors (and especially consultants) have psychologically on their patients - rather better than they do, I fear. However, they are just re-iterating the inaccuracies they are 'sold'.
The only statistic that is true for me or matters to me (or you), is the ONE about me (or you). A doctor knows NOTHING about what will happen to me - just an amalgamation of information about what has happened to others (often faultily collected and reported). When an experienced individual doctor looks at my situation and says 'this looks like something else I have seen', I listen and am interested. When they say 'the stats say', I am not.
I'm sorry this has been long - but I believe what is obvious: we can only effect the outcome for ourselves, then share that which we learn with others in individual ways like this forum. The rest (the 'body of knowledge') is -especially in medicine- myopic and potentially dangerously misleading.
Sieze each day, and try to build a future you will enjoy!
Very best wishes,
Isadora.
Excellent post Isadora , couldnt have put it better myself!Some of the so called " world experts in this cancer or that cancer" are not always as good as they think and can have outdated ways of thinking and vehemently resist changes in cancer regimens and new treatments for their own reasons. They then run the trials that influence the stats.
In the treatment of Ovarian cancer, stats are based on a cross section of women, none of whom were me or had my exact tumour . We are our own statistic of one! Obtaining my own pathology report after the op was one of the best things I did, not comfortable reading and not for everyone to do but it has helped me greatly in the understanding of this and the way forward, for me. The type of diet and lifestyle which Isadora endorses is one i also try to follow, its a great way of giving your immune system the best chance it has to fight whatever may OR MAY NOT come. Even a cold!
Enjoy each day Sarah as and when you can. Remember when your mind goes to a dark place of worry this I was told by a very good counsellor " where our mind goes, our energy follows"
Wishing all the best for you
Lindy
Borderline ovarian tumour
Mucinous Ovarian Tumour
Mucinous Borderline Ovarian Tumour
Borderline Ovarian Tumour
