Ovarian cancer stage 2c - grade 3 with high hopes of a "CURE"

I have been told right from the beginning by several oncologists, surgeon and macmillon surgeon that a cure is hopeful and that is what they were aiming for.

When I ask questions about reocurrance they always add - IF IT COMES BACK and they say there is always a hopeful IF!!!!!

I was so positive but since I have been listening to recent readers on here, all you have made me feel is deep doom and gloom. Basically you have all clarified my deepest of gut instincts which usually end up to be correct.

I appreciate that NO ONE can tell us what will be in store for us around the corner however, I kind of feel petrayed by the medical proffesion for giving me false hopes - I have to say `if` they are false hopes.

I read up on the internet that a grade 3 is a aggresive tumour that is more likely to spread and more likely to come back. When I asked my oncologist about this ( I have seen several and asked each one the same questions, to whom they all answer the same), I was toild not to read too much on the internet and not to take notice of what anyone else says because each person is individual and there are several types of OC`s. I was also told that ALL Cancers are grade 3, they never see a grade one and hardly ever see a gfrade 2. I`m not sure if they were referring to OC only or all cancers, I presume OC. However, I have taken note on here that some of you had been diagnosed with a lower grade.

I am talking about grade here not staging ok.

I look forward to your responces.

My logic in this is the cancer specialists and researchers will always be hopeful of CURE, maybe we should too.

However, I do feel there is a fine line between positive and burying ones head in the sane with false hopes.

Love to you all from Tina xx

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  • Dear Tina,

    We each have choices and tendencies about how we interpret and receive information. Some are comfortable with scepticism and able to negotiate the messages that tell us that this cancer is statistically likely to come back. Some feel so frightened that it is better for them to live in the day, and not focus on what might or might not happen. In some ways, that is more 'real' than anything. Your health team have seen YOUR results, and decided that YOUR cancer is less likely to come back than many others - I think that's wonderful! I firmly believe that the posibility of cure should be more discussed by the NHS, as the continual fear of recurrence can undermine our immune systems and make it more likely.

    I think your team sound amazing and optimistic - and it is proven that good outcomes are more often achieved where doctors and patients can remain optimistic in all health conditions. There is an incredible negative power in being told you have no chance - but many have proven such prognoses totally wrong.

    As I have said many times before; I'm going for 'cure' in that I live each day in the day, but with the hopeful expectation of a cancer-free future.

    I hope you prove your team 100% correct!

    Isadora.

  • Thank you so much Isadora, it just concerned me how several people had commented on my last question in reference to All Clear, that "OC is incurabale". It shook me up a bit that was all. I do believe that most ladies are not diagnosed until they are in stage 3 or 4 which meakes cure more difficult.

    Thank you so much you have put my mind at ease.

    Love from T XX

  • Hi Tina,

    i do feel the same as you. I am 3c but my oncology team wont talk about anything beyond this currant first line chemo. I am in the medical profession - I am also quite straight talking and I know what is going on. Probably a bad thing really. But I get the impression that my team want me to bury my head in the sand.

    They also say that my follow up will involve me telling them when I have symptoms in the future. I never had any symptoms of OC - it was found purely by chance as I was in hospital for another reason. So how will I know when it comes back. My consultant says I'm getting ahead of myself in thinking about the future.

    On my pre treatment CT scan there is an"area" which the radiologist notes as being of concern. I'd already told my consultant that I had pain in that area (under lower left rib) but he says that it is about an inch away from the "area" so probably nothing.

    Finally he said that 70% of women respond to this chemo ( a dubious statistic anyway) so I asked if that was all women with OC or just my stage....it was like talking t oa politician...I didn't get a reply.

    So you can see...i ask questions but get the feeling they don't want to give me the answers. I come on to this website and I get a different picture - possibly more real...but also quite scary.

    I want to be cured. I want to have long time before reoccurance but I cant see anything wrong in being presented with the truth and not hiding information from your patient.

    But I will be strong - we have to be.

    Sam x

  • Hi Sam,

    "being presented with the truth and not hiding information from your patient. " I just need to have a little rant about this phrase. PLEASE do not think that there is such a thing as 'the truth' (in just about everything; but especially in medicine). Our construct called 'truth' is derived from statisctical information which is seldom 'pure' in that it is collected without regard for political and financial pressures. The information about the cancers any of us have is, at best, patchy; built as much on what is possible in terms of treatment, and what is believed by the practitionners. If you want some sort of truth you have to look a lot further than your local oncology dept. The same goes for information, I'm afraid; because there is little information about these cancers. I am the last person to condone hiding information from patients (and you are free to ask for and get your medical notes to do your own research if you wish). The fact is that most medics do not know a great deal about ov. ca., so cannot answer your questions!

    A good friend of mine who was a Macmillan nurse for many years had recognised from her experience that amongst her clients, those who stayed well for longer seemed to be those who refused to countenance the possibility of recurrence (bury their heads in the sand), so, when asked she would tend to advise not looking at the possibility. Perhaps your Oncologist is similar and feels s/he is doing the most helpful thing by taking this attitude!

    The answers/information/experiences/etc are all there to be found on the web if you wish to find them; but they are not 'the truth' any more than that which I am writing is!

    I sincerely hope that you will be 'cured'. I sincerely hope that one day soon someone will find the cure for this, and other cancers, and that we patients will no longer need to undergo extensive (barbaric?) surgery and chemical poisoning. I suspect that that will come from revelations emanating from the whole picture (physical, genetic, spiritual, mental, and medical) rather than simply from what drug does what. That demands us growing out of wanting doctors to understand stuff on our behalf. Having said that, what they do for us now is great for now, and we must not expect too much of them.

    With very best wishes,

    Isadora.

  • Again Isadora I am inspired and feel joyful when I read your emails. Thank you! Florence

  • Hi Tina

    I, like you, was surprised by some answers that OC can not be cured. When I was diagnosed stage 1a grade c, in July 2010, I was told by my oncologist that I had a ninety per cent chance of remaining disease free.

    But I was also told later by a registrar that if it was to come back then it would not be cured but treated as required. He said the hope was that it would not come back quickly.

    I was a little taken aback by that but as others say we are all individual and our condition will take its own path.

    I felt convinced after surgery and chemo that I was cured and still feel that way. However I try to be aware of any changes that I may feel without being paranoid about every twinge. I also feel for my children's sake (my husband died the year before I was diagnosed) that I must be positive for them so that they do not feel anxious about me.

    I can only echo many who say enjoy life for what it is now and don't worry about what MIGHT happen.

    Keep positive

    Tulsa

  • Tina - statistically - and damn statistics - grade 11c has around a 60% cure - i.e. no recurrence after ten years. It's so easy to despair especially in the early stages but you have to fight the feeling. The positive thing about high grade cancer is that because it divides so quickly it's more vulnerable to chemo.

    Any cancer is a shock and the nature of OC means it is more shocking. But rejoice that you are not grade 111, and that your team believe in you.

    Sam, I'd think of changing your team. If you have dose dense chemo, your chances are better than if you have traditional three or four weekly infusions. The statistics are more than five years out of date and dose dense in Japan has shown a very significant advantage. American doctors, who tend to be more optimistic because they compete for patients, are saying that IP and dose dense chemo both give an increased chance of survival in stage 111.

    Much depends on whether you were optimally debulked and if you are platinum sensitive - both of these are positive indicators. But women survive who were not optimally debulked. Take it a day at a time, do not think too far ahead.

    As for noting symptoms, you have to rely on physical exams, CA125 and or scans. Talk to your team about this. Concentrate on feeling as good as you can each day, taking some gentle exercise, eating well.

    In a sense, your doctors can't give you answers simply because they can't see into the future.

    A significant and growing proportion of women survive grade 111 OC. The best thing you can do is believe that you will be one of them.

  • Hi Tina!

    Just to let you know that some of us are still here after 9 years, more as well .......maybe not the same grade or staging, but with a hope that things can go well. Statistics often lie, and the internet is only as good as the info that is put into it, and you know how many w***ers and nerds there are out there!

    Keep faith with the people who make you feel good, the team who is looking after you, and enjoying the large and the lesser things that give you pleasure

    Love Wendy xx

  • Thanks so much ladies your replies have been a real boost to me and the faith we all seem to have in our own wellbeing is simply awesome.

    Take one step at a time, one day at a time Sammy, this was my only way through it when I was having treatment after my surgery. Once you recover from that and your hair grows back you will look back in a few months from now and hopefully wonder what really happened. I kind of need to pinch myself once in a while to remind myself what I have been through, still going through in more ways than one however, I still need to face reality as well as being as positive and as optimistic as possible. I have good days and bad days but I always manage my mental state of mind quite well, better than I ever thought possible.

    Keep your chins up girlfriends while we make the very most of life as it is and certainly stop sweating the small stuff like the ironing or muddy footprints on our freshly washed floors, none of that matters any more does it girls.

    Have a ball and enjoy those good days, whoop! whoop!

    love you girls xxx

  • Forget to tell you Sammy,

    Like you I had no OC symptoms. The only symptoms I had, were NOT OC related.

    I just put my faith in my oncologists and their skill in knowing how to identify a reocurrance. I put faith in the CA 125 blood test as this proofed to be a good marker for me, I appreciate this is not the case for everyone.

    I also feel blessed that we are checked every 12 weeks. To be honest we are all kind of in a better place than we were pre-cancer because we are being checked closely. Two people who were friends of friends have been diagnosed and lost sinse my own diagnosis because they were diagnosed too late, (not OC other cancers but it does happen) I lost two close friends both aged 47 - 48 to sudden strokes. I had an email from one then within a week she was dead and buried. Another friend was chatting to me in the town at 3pm one wednesday afternoon, (fit as a fuiddle she was telling me about all her exciting plans) by 9pm she was dead.

    Somnething my Father-in-law said to me last weekend made me sit up and listen hard enough to make a sturdy comment. He was very poorly last year, in hospital with kidney failiure and infection after a stroke, while I was in the midst of my chemo cyles. He said to me that 2012 couldn`t get any worse for us as it was last year, I told him it can always be a lot worse, always, always, someone else somewhere a lot worse off than we are. that thought keeps me strong and truly grateful.

    Nice chatting, I am off to bed now - seeing my oncologist tomorrow so need to be up early to make the journey to the city hospital.

    Night, night

    Love from Tina xxx

  • Hi Tina

    I was told my OC was not curable but was traeable because it was stage 3c on diagnosis. Lower stages can, apparently, hope for a cure. I get my rreatment in Leeds which is one of the top cancer units in Europe. Everyone is very positive and so am I. There is a difference between prolonging life and postponing death and we are for the former.

  • Hi Margaret,

    Can I ask what treatment you got at leeds? Was it Taxol/carbo?

    Hope you are doing well?

    Best Wishes

  • Hi! Sammy

    I basically want to echo what other women on here have already said. I was diagnosed over 6 years ago -stage 3a - and had 4 years clear before it recurred. Since then I have been maintained on several - 3 in all - lines of chemo. and am still going strong and able to lead a fairly normal full life - I am in my 70s but very active and fit otherwise.

    Like you I have found the uncertainty hard to live with but if I have any regrets it is that I did spend a good deal of these years worrying about it coming back. So - I hope you won't make the same mistake.After all if someone had said to me whenit was first diagnosed - you will still be going strong 6 years from now - I would have said - 'WHOOPPEE'.

    I know it isn't easy but I'm, damned if I will allow cancer to dominate my life. I wish you confidence and that the cure you justifiably hope for will be realised.But if not there is still a lot of life to enjoy and i wish you many joys during it.

  • Apologies - I meant Tina,of course.

  • Yay! My moto is that ~ if we spend our days worrying about re-ocurrance or leaving this life there is little point in getting better, for how ever long . . . . .

    I intend to be making lots of happy, happy memories for my family, memories are more precious than materialistic things and the most precious gift of all.

    Husband retires on the 31st of this month and we intend to have one very loooong holiday in between looking after our wonderful grandchildren.

    Seen oncologist today, wobble over - for now, LOL!!!!!!

    Margaret,

    I have been told that if I should have a reocurrance it will be treatable but no longer cureable, I guess we only have one chance of a cure IF and only if its caught before a stage three. This explains why some of you have been told your cancer is not cureable but the statement I read on here that ovarian cancer is NOT cureable is untrue it can be if its caught early enough. I need to also add there are 4 different types of Ovarina cancer and all react and grow differently - maybe that depends on the prognosis also. I am sorry for accussing you of putting me into great panic and worry. I understand now how some of you misunderstood. Wishing you all a long and happy life always

    God bless you all I pray every night for each one of you - love as always Tina XXXX

  • P.S I am not impyling that you margaret said there was no cure for OC, just one or two ladies said that. It isn`t important who.

    I am also prepared for mine not being and if its not then I will battle through as we all find the strength too one way or another.

  • Dear Tina,

    Like you I have been bamboozled by different responses from the professionals. I finished my first course of chemo for Stage 2a three months ago and have not had my first check up yet.

    My surgeon wore rose tinted glasses, to such an extent that he told me before surgery that my CA125 was 70. My medical notes said 135. I got so irritated that I told him I didn't want any more "flim-flam". It made no difference, but I came to realise that it had more to do with him and what he could face than me or my condition.

    Half way through chemo I told my oncologist I was hoping for a cure, not endless recurrence and chemo and asked her " Am I living in cloud cuckoo land?" She answered, "no, no, no". Later on another oncologist told me, "We expect it to come back, maybe in six months". I panicked.

    Now I am learning slowly to live in the day. As Isadora points out, no one knows the "truth". What they give us is their opinion which is a bit different, and we do with it what we do with it, good news as well as bad.

    I love this site. Everyone who contributes does so responsibly. We find our way together and that has been an enormous support to me. As you see from all the above you are in good company. All the best Liz

  • Hi Lizzie, hi everyone,

    Well today I saw the oncologist who runs the clinic so you may as well say she is top dog oncologist so I decided to ask her a few things on this subject.

    Basically she said the same as some of your comments like - patients always ask the length of a piece of string without the measuring tape.

    She said there is no possible way of knowing if we can be cured or not however, its all down to statistics and what they see in clinic. She also said that evidence is always going to be at least 5 years out of date and it will always be that way however, she said more and more women are now suviving OC where as not so very long ago this was a killer disease, no one suvived it, it always came back.

    She said the scans and treatments have improved over the last couple of years and she said they are learning new things from research very quickly now. She said that if diagnosis is met before the OC has reached a stage 3 then we have every good chance of a cure. She said of course its their job to always be hopeful for a cure but that doesn`t mean there will be one. Nothing can obviously be gauranteed, so it would therefore be impossible to sate this as a certain fact.

    It doesn`t look as though I have been lied to at all - this team of oncologists are very hopeful indeed but I accept the fact that they really have no ideas of anyones prognosis just for me the odds are looking good.

    I supose as well to keep patients positve certainly helps how they deal with things and if they feel content and happy and get on with life it must prevent a lot of stress and worry which we all know can make you feel quite poorly.

    Thanks to you all for giving me support its been wonderful to chat to you all and I look forward to many more conversations.

    Take care everyone and wishing you back to wellness this year.

    love from Tina xxxx

  • Hi Tina. I've read your posts with interest unfortunately because I have OC as well! Mine was diagnosed as Stage 2c - we don't get many of these, how unusual, etc. I had the usual (?) total hysterectomy followed by chemo which ended last March. I was feeling very positive but then a tumour reappeared last month. To get rid of it I may be having a pelvic exenteration, removal of bladder and bowel and having two bags probably for the rest of my life - shock, horror! Looking at a second opinion and alternatives, possible radiotherapy and leaving the major op for later?

    Mine was a mucinous OC which is apparently unusual and little is known about them which is why there is little effective treatment.

    My reply, eventually, is to see what type of OC as some are better than others (!) and then to be as positive as you can be. My oncologist tapped his head last month and said that's the worst part, trying to get around it in here. How true! I feel better mentally than last week and hope it continues to be that way. My friends are fabulous and my partner so supportive and strong.

    Let us all know how you're going on and keep positive and hugging people who care!

    Hetty

  • Hello Hetty,

    I felt so sad to hear that your cancer came back and so very quickly too. I can only imagine what you must be going through right now as I finished my chemo in April last year.

    My own cancer was a high grade serous papillary/endometrioid adenocarcinoma of the ovary. It was mainly contained to the ovary but had just broke out and started to grow into the colon. Aparaently mine was one of the most common ones and one of the ones they know more about. I feel very lucky!

    This year I face a double mastectomy hopefully to prevent breast cancer. The ruddy statistics show I am running at a 80% risk of breast cancer too. I inherrited the faulty braca one gene - so I know the course of my OC. I had a 50% risk of OC, if only I knew this a couple of years ago, I may have been able to prevent it.

    Oh well, I need to accept and deal with it. I met so many people worse off in the chemo wards, one of them was a very strong lady in her late twenties who was having chemotherapy for her breast cancer. We finished our treamtnets at the same time. I met her in clinic this month, sadly she now has 8 brain tumours that are untreatable. The sadest thing of all is she has a miricle baby she named HOPE, now 17 months old and a 4 year old little boy. She was diagnosed with BC around the time she found out she was pregnant. She was advised to have her baby terminated so they could operate and start treatment pronto. What a decision to make. She decided to give her baby the best chance, she continued with the pregnancy until her baby would suvive a premature birth. Hope was born by a C section and lived the first 4 months in hospital. She is now thriving and doing very well but her mummy is very poorly and may not make her 2nd birthday. I cried so much for that lady.

    My brother has terminal cancer of the bowel - he has a bag too, he was so positive and so cock sure he`d suvive this - Bastard fucking cancers!!!!!!!!!

    Love with a gentle hug darling - you are on my prayer list,

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