Worrying news?

I am just over halfway through chemotherapy with Carboplatin for stage 1c endometriod ovarian cancer At my latest Oncolgy consultation I was told that I was now 'borderline stage 2'. Still, I thought an early diagnosis so a fair prognosis for a hopeful cure. I have just been told that these tumours have a very high risk for recurrance. Very upsetting. Has anybody got any information on this?

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  • Thank you for your reply Millie-May. The whole thing seems so difficult to deal with at times, and I was surprised to get this information as I had been led to believe initially that the talk was of a 'cure'. I suppose we all get down from time to time, but the thought of going through all this again is pretty awful. I just want to get on with life!!!! Thanks again, you are very encouraging and kind. XXXXX

  • Yes, Millie is absolutely right. Think cure. I had 3c grade 3. 5 years now since surgery and no recurrence despite the awful prognosis. It is clear to me that there are so many different ovarian cancers that the stats are misleading and undermining. Take sensible precautions to protect your immune system as well as you can, and let yourself go forward.

    Very best wishes,

    Isadora.

  • Hi Isadora,

    Great news you are still well 3.5 years on. I would love to know what supplements or other treatments you used to help boost your immune system - if any?

    All the best, Emma

  • Sorry - it's poorly written, but I'm 5 years from surgery (grade 3).

    I think the best route map I have come across is 'Anticancer a New Way of Life'. It's about balancing diet, lifestyle and mental health.

    Bestest,

    Isadora

  • Thanks, I've just checked out the book online and realised I already have it - and many others !!

  • Hi Emma , sorry to hijack this post, you sent me a message which I tried to reply to but it would not send for some reason.In answer you your question about support groups there is one held once a month in Exeter at the Force cancer centre just down from the RDE hospital I would have to give you times and dates if your mum is interested. Best wishes Pam

  • Hello Isadora - thank you for your recommendation. Just sent away to Amazon for a copy of the book. A XXXX

  • Thank you Isadora.

    I am so pleased you, and Millie-May, have had better health and remission for such long periods of time. Long may it continue.

    I do agree with you ref stats. And in my pre-cancer life I would be 100% with you. Last year we lost a dear friend to OC very suddenly, she had been the fittest and most active among our circle and I think this skews my objectivity as well.

    I suppose we hear and read so many interesting, sometimes conflicting things, and the various specialists we see have slightly different 'takes' on things - one will be incredibly upbeat, and another factual (good) that a realistic idea of what the outcome might be is hard to decide on. Especially when you feel pretty ill and the commonsense part of your brain is not firing on all cylinders!

    I have not reacted very well to the chemotherapy, and after each session I feel it takes me longer to feel better so it's harder to remain focused and objective.

    You speak of protecting your immune system. While on chemo I am staying away from crowds, and my family are very good about keeping a distance, especially when the children have sniffles. We also eat a high fresh vegetable content diet, but still enjoy chicken and fish and red meat about once a week. No takeaways or rewarmed foods -though last week we had an outing to Ikea - oh the excitement - and I did have lunch there with no ill effects! I do not take food supplements or vitamins, believing we have a well balanced diet supplying enough. Strangely I crave sweet and salty things. Probably because my taste buds are a bit shot at the moment! Have put on a lot of weight since the operation in October. Everyone says not to even consider dieting just yet and that being slightly overweight is better than losing weight at the moment, so other than feeling unsightly (!) I am letting it be at the moment and preparing to start a get-fit regime post chemo. Exercise is impossible just now - I can't walk very far and have extreme fatigue. The above mentioned Ikea expedition left me prostrated for two days, but we did get the blinds and cupboard we need for our new house! Nice to be out though!

    Do you have any suggestions to add to the above ref. immune system protection? All ideas warmly welcomed.

    Thanks again for your reply. I am so grateful to everyone who takes part in this online conversation. Really useful and supportive.

    A xxxx

  • I think if we all listened to everything, and believed it would happen to us we would never get through it. I had breast cancer 25 years ago and yes, even then, thought it may come back. I got on with my life and 6 months ago it decided it was my turn again, this time ovarian. I had 3 chemos, a hysterectomy, and I have just finished the last of another 3 chemos. I know at this time its very tough as your mind can work overtime but I found that I had to live in the moment and get through each day. I am now out the other end and trying to plan some nice things to look forward to. I hope this doesn't sound too harsh but I feel we have to look forward, we still have a life to live. I'm 62 and a widow, but I still have things to do. Take care, take all the help offered and be positive xxxxxxx

  • Hi Wonkylegs! Great name, mine are a bit wonky at the moment! I am so sorry you have had to go through so much again, and I admire you for being so positive.

    I am being a bit of a wimp at the moment! It's taken a long time to get the diagnosis I now have, and the treatment. Had a hormonal treatment for nine months which made me very ill and had to come off the treatment during which time I also developed hypothyroidism. We moved house, have lived for months with builders and scaffolding, and then the cancer diagnosis. A tough year but much fun too. Although I still feel young, I am actually in my late sixties and slowing up has been a shock! Can't wait to get our retirement new (actually very old - 16th century) house up and running and our new life started. So the shock plus the bad health is just a damned nuisance to say the least!

    So admire all the positive things people on this site say. And today the sun is actually shining and I am bolstered by the steroids post last chemo session, so we plan a trip to the garden centre to buy a tree. Watching a tree grow seems a pretty positive thing to do. After all they take years to grow and I mean to be around to see that happening!

    A xxxxx

  • Thank you Millie-May! Today is a lot brighter. Steroids on board and we are going out to make the most of the sun!

    A XXX

  • Hi amaryr, I was diagnosed with stage 1c grade 3 endomedroid ovarian cancer feb 2012 aged 35. Had surgery and 6 sessions of carbo/taxol. So far so good and been treatment free since but like you I read about the risk of recurrance so I'm always thinking the worst when I get any ache or pain. I don't think that fear Ever goes ! In relation to treatment I found the fatigue got worse the more sessions I did but eventually you do get to feel normal again !

  • Thanks aod1c for your response. I too am finding the cumulative effect of the treatments more difficult as time goes on, but have had two days feeling very good buoyed up by the support steroids, and really hoping the effect lasts a bit longer this time. Had almost forgotten what 'normal' feels like! Had a lovely day in the sun with family today. Had almost forgotten what sun feels like too!

    I think the fear factor must always be in the background - horrible to have to live with it, but if we are to get on with life I suppose being busy and occupied will help. I will get the results of the halfway scan in a couple of weeks and my mind does play tricks on me sometimes. If hoping could cure us, we would all be up and running eh?

    I sincerely hope you continue well, and do thank you again for your reply.

    A XXXX

  • My sister has been told that infections when white blood cells are low mostly come from your own "friendly bacteria" in your own bowel so she doesn't apparently need to avoid her kids should/when they are unwell which she was thrilled to hear! Just to put that out there as trying to avoid all coughs and colds at certain times if the years would often mean complete isolation! I love ikea! My sister is starting her chemo today at 12 please god will go well. She has what they believe is stage 3b serous high grade. So looking forward to getting her through today and for her to tolerate the scalp cooling thing well which she wants to try! This next week will tell a lot to her as to how the next few months go and she says she just can't wait to get through it!

  • Hi Macmamcspud. Thanks for your response.

    I am very sorry to hear about your sister and hope all goes well for her.

    I do try to avoid any cross infection when the blood count is low, and don't find that too hard to do as I am pretty well laid low for most of the three weeks during my treatment sessions, so don't go out much anyway! Hand washing and personal hygiene is second nature - touch wood - so far I've been OK regarding secondary infections. Next month we have a major family re-union which I desperately want to go to, and it falls just at the time when my blood will be low - but the specialist thinks I should go anyway. Time with family is particularly precious now.

    A XXX

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