SURVIVERS AFTER STAGE/GRADE 3C OVARIAN CANCER

Hi I am 47 and diagnosed with grade 3c OC, I had a hysterectomy,debulking in Feb 13 and finished chemo at the end of July. My ca125 was 220 before hysterecomy and fell to 10 after surgery which was great news, then went thru chemo which i found horrendous, however i am now in remission and CA125 is 2. However mentally I feel I am back to stage one as keep thinking what if it comes back, how will i cope with chemo again, how will my husband and son cope, the list is endless. I am back too work and everyone keeps on saying how fabby I look, i was never out the gym before this, never smoked, don't drink and my diet is good.......so why me???? I keep reading about all these ladies who are 2 years clear but I am looking for 10years plus survivers.....are there any!?!?!? Thanks Elaine

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  • Dear Elaine

    It's great to get to know you. The good news is that there are 10 year plus survivors amongst women with Stage 3 and 4 ovarian cancer but the not-so-good news is that they are for the time being the minority.

    It can be frightening reading up on statistics because they are somewhat out-of-date being based on data collected 5 or 6 years ago. The survival rates for ovarian cancer are improving but as you can see from the posts on this site a long survival is not guaranteed for every one of us.

    You've done really well to have come through surgery and chemotherapy and now enjoying a return to work. Hopefully your heathy lifestyle will stand you in good stead and I really do hope you have a long long period of remission.

    The thoughts running round your head are very familiar. When I finished my first treatment in October 2011 I was obsessed by the same worries. I think it's good to talk them over with someone - even if it's just online friends here - or perhaps a local support group, or to attend a Maggie's Centre or the Penny Brohn in Bristol. These resources can be a great help to our achieving some sort of sanity and equilibrium after the shock of diagnosis.

    I do hope your return to work helps to get everything back on to an even keel. Whatever else you do, try to enjoy everything life offers. Life can be very rich even when you are living with cancer.

    Sending much love xxx Annie

  • Many thanks Annie great too hear you are 2 years clear and hopefully many more. I'm told like you say its normal to feel like I am at the end of chemo and hopefully time will lift this cloud above my head. I know I am lucky compared with alot of ovarian cancer women and i think sometimes it can sound like i am being selfish and self centred.

    I did attend a new Young Womens Cancer group at my local Maggies Centre but felt it wasn't for me, alot of these women are terminally ill and their stories made mine seem like nothing. I also attended the breast cancer support group with my friend but felt this wasn't for me either as i want too speak to women who had the same cancer as me. Its a shame there isn't an Ovarian Cancer support group in my area. I did bump into one girl during one of my chemo sessions in Edinburgh who had OC (stage 3c) and we had a good old chin wag, she told me her cancer returned after 3 months and she was back getting more chemo which upset me.

    Many thanks for taking the time to reply and hopefully this cloud will start too lift.

    Elaine x

  • Dear Elaine, Please don't ever think it is selfish to worry about cancer. I realise that each and every one of us has a tough call. It's just as bad for women who are diagnosed with an early stage cancer as they have every reason to hope for a cure but must live for years with the uncertainty that it might come back. My particular presentation of cancer means my future is slightly more predictable as I can't hope for a cure. That's surely easier on the mind.

    Hopefully you might find a buddy on the site here who is in a similar situation as you as it might help lift the spirits and get you back on track.

    wishing you well. xx love Annie

  • Yes, there are many - on here and elswhere. I'm nearly 5 years clear, and there are many women with 10, 15 and more years. I think we have to accept that those who do not get recurrence stop communicating about it at some stage, so it always seems that there are very few about.

    Try not to let it undermine you. Concentrate on your diet, lifestyle and reducing stress, and look forward to a long and healthy future - never forget; you might be hit by a bus tomorrow!

    Jennifer Saunders was on the radio yesterday and talked of how she was told by so many people that she must not talk of her breast cancer having been cured, but only of remission. I heartily reject that view (as does she). If you are clear now and you are being monitored, you are in a better situation than many people who are walking around with unknown cancers (we all have potential cancers, remember). After 5 years, I think it is undermining to reject the term cure, unless it is known that you have inactive disease. I think of myself as cured, and I intend to continue to do all I can to prevent ever getting the horrid disease again. I have been more than lucky, as I hope, will you.

    Isadora.

  • Hi Elaine,

    Just to say that I was diagnosed stage 3c 6 years ago, in Sept 2007. I was told that I had a 90% chance of it coming back. I worried every day that it would come back and sure enough it did in 2010. I had surgery and chemo again and so far so good. I have a scan next week so am keeping my fingers crossed. I have a friend who was diagnosed stage 3c 4 years ago. She told me that she had decided that it would never come back and so far it hasn't. My wish for you is that you never have a recurrence.

    P.S. I also recommend the Penny Brohn Centre in Bristol. I went there after surgery for the recurrence and found it life changing.

    Wishing you all the very best,

    Adele

  • Hi Elaine

    I was stage 3b at diagnosis and I have survived for 14 years, but I am neither cured, nor in remission. I have had 3 recurrences but got nice long treatment free periods in between. Currently I have tumors in multiple sites, but I am fit and healthy otherwise.

    Of course it is terrifying the thought that it may return, but it also may never happen. If it IS going to happen and you have to go through chemo again, then you need to make every day whilst you are healthy count. Don't spoil today, worrying about tomorrow. I find keeping busy and giving myself little goals to achieve is a welcome distraction. I also think Isadora makes a good point that we should all dare to hope that we are cured.

    I think everyone would empathize with you at the moment, as we have all been there; having had all the treatments and left with an uncertain future. It certainly isn't easy, but it does get better with time. You need to believe that you are cured and just know that if you have to do it all again, you will cope - as you have coped this time.

    Vx

  • Hi there Elaine . Like Annie, I have been told there isn't a cure for my own presentation, and for me, I'm glad that I know. It really depends on what stage you are, what type of ovarian/peritoneal cancer you have, where the cells are and how the cells present themselves. Everyone's different. I was diagnosed in March 2011 and it's back. Some people with the same cell as me have relapsed sooner and some people are still out there getting on with life. Other factors are how you respond to treatments. Doctors don't know totally why some women respond, partially respond or don't respond when they have the same cell when examined under the microscope. It's one of the things scientists are looking at. The uncertainty with cancer is hard to deal with and it's particularly so with Ovarian because it's so difficult to monitor in many cases. I've never had a raised CA125 despite being advanced disease and CT doesn't really show anything. When people say a person looks fine and well, it can seem as if they're dismissing your very real fears about a difficult illness which can hurt. I try to take every day at a time. One of the things I do if I can is to arrange something every day. It might be to watch a film, go to the park, listen to some music I really like or just indulge in a few magazines. Many women with Ovarian and PPC are unable to work so having it can mean huge life changes, but I was thinking about what you said and it seems that if you do back to work, you are expected to just get on with it and be 'normal' when it goes against how a person might feel. Tiredness can be a problem too. When I was first diagnosed, I thought the 'Why me?' But now I think 'Why not me.' Sending you all good thoughts .. Love Tina x x

  • Hi Elaine. Your feelings are all to common with those of us with the same diagnosis. I try and take each day as it comes and try not to worry about the future...keeping busy helps. As time passes, things do get better. Your CA125 is brilliant... I'm envious of your single digits.

    You ask "why me"? It could be purely bad luck or genetic predisposition. I was 42 when diagnosed and also had similar thoughts. I was allowed to have genetic testing which showed I had inherited lynch syndrome which results in a higher risk of ovarian, colon and other cancers.

    As a consequence other members of my family have had genetic testing as well and have been put on monitoring protocols and had preventative surgery.

    Yes I have heard of lucky ones surviving for 10+ years. They are the minority, but there's no reason why you can't be one of them!

    Well done on getting back to work. Try and take it easy, and be kind to yourself.

    All the best xx

  • Hi Elaine

    Mine was borderline but was present in both ovaries and the omentum, not sure what stage it was. I'm still well after nearly 11 years. It's natural to fear the future and the idea of recurrence. I do whenever I feel some weird twinge or an unusual ache, but so far so good. There are a lot of us around who are still well after several years. I always think 'Right here, right now, I'm feeling OK' don't feel guilt that you got cancer......I heard of a nurse who would reply, when someone asked her 'Why me?' ....'Well, why not you?' It's such a random disease, always unfair. None of us have deserved to get it. It's how we cope that counts. We can't change the past, we can only live in the present. All the best for things going well for you for a long time to come

    Love Wendy xx

  • One thing that helped me was reading about OC needing to be throught of a bit differently, as a "chronic condition", a bit like diabetes, rather than a "treat and cure" disease. The positive in it is the range of treatment options and research. Doesn't stop the worry but does give a different perspective on it. Hope it does for you too.

  • Many thanks to you lovely girlies for taking the time to reply. It has helped reading your different experiences with this. I keep telling myself "Time is a great healer" I lost my mum when i was 39 and i am comparing this with how i felt then, lost, lonely and frightened but it passed with time. Its still a bit raw at the moment and I will try to focus on living each day as it comes and not too look too far ahead. The reason i think "why me" is because i look after myself re fitness, health, diet, i don't drink and never smoked and there are people who abuse their bodies and don't encounter this, its so unfair.....thanks again to everyone who sent me their kind words.

    Love

    Elaine :-)

  • Hi Elaine.

    I think what you are feeling is what we all feel/have felt, and it is normal and totally understandable. For no obvious reason, this thing has struck us and changed our life from now on. I would like to suggest you look at my posts on aspirin and other anti-inflammatory drugs (NSAIDs) such as ibuprofen. I was diagnosed with stage 3 primary peritoneal cancer, a variant of ovarian cancer, in September 2009, qnd had a recurrence in Sept 2010. After chemo I by chance started taking ibuprofen in April 2011. My CT scan was not totally clear of cancer then, and I was told my CA125 would go up within 6 months of stopping chemo in March 2011.

    But it has not, as yet, 2years and 7 months later, and I am fit and well, taking ibuprofen. There is a lot of evidence that aspirin and the likes of ibuprofen have anti-cancer effects, as you will see from my posts. All my evidence comes from papers reported by Cancer Research UK, apart from one paper which I traced via pubmed but is in a reputable peer-reviewed medical journal.

    These drugs - you take either aspirin or ibuprofen or the like - prevent cancer in some people, and prevent cancer spread in some people with cancer. So please look into it further. I did a post about 2 weeks ago, which will give you a start. The other posts were in Dec 2012 and January 2013, I believe. Just go into "drdu" and you will find them.

    I should say I am a retired GP, and have looked closely into this. Don't start aspirin or ibuprofen without speaking to your GP or oncologist. Ibuprofen type drugs can upset the stomach badly if you don't take something to protect your stomach along with it. They don't work for everybody, but after looking into it, you may think it is worth a go. A small 75mg aspirin a day should not usually cause problems.

    Good luck. I know how you feel.

    Love,

    Eileen xx

  • Dear Eileen

    I love your posts. I'm looking forward to getting through my 6 sessions of chemotherapy and then I shall follow in your footsteps after a first recurrence and I'm going to have a go at aspirin. It's worth a go! I've been taking Iscador for nearly 9 months now. I've had an unusually long decline to a situation where I need more chemotherapy. Nobody can say whether these things work but here we both are. They might have worked for us and given us extra time and they didn't do us any harm.

    I think it's worth giving it a go. x

    Love Annie xxx

  • All best wishes with the chemo, Annie, and am glad you will give aspirin a try. We have nothing to lose. Thanks for your comments.

    Love,

    Eileen xxx

  • Hi, you're getting a lot of good advice above, especially from drdu. I'd add one debatable comment: a long time ago, I struggled as a medical student, and eventually gave up after doing an intercalated honours degree. I usually got my preclinical experiments wrong, and typically gave up and ambled off to have lunch, take a coffee break, participate in a student demonstration, whatever. The was always one young man who persevered for however long whatever we were being taught how to do took to reach the appropriate conclusion.

    After we guzzled our bacon rolls and strolled along to the next class, he was usually waiting at the door, impeccably attired, notebook in hand to take his usual perfect, even pedantic notes (which were invariably handed out and liberally copied by the rest of us).

    Some thirty years later, I encountered his name again. He is happily married with children, working as a consultant gynaecologist with a sub speciality in oncology. By then I was a happily married but childless (I have one adopted son, one stepson) woman working in a totally different field. I had ovarian cancer and was just as shocked as you are now, because my staging and grade was identical to yours.

    He wrote a small study about the use of CA125 after treatment as a prognostic factor. The conclusion of that small study, which has never been repeated (because, presumably, it was a small study of only a couple of hundred women and also the gynaecologist works at a regional hospital rather than a hospital linked with one of the prestigious universities) was that women who have a CA125 that is under 10 that remains at that level for at least 2 years after diagnosis, have an excellent prognosis compared to the women who have a CA125 that is between 10 - 20, and those who have a CA125 between 21 - 35.

    A lot has been learned about the CA125 test since that study was done and also the reagents and machines used to do the test have changed.

    But that study was the first ray of hope that I found after a long, dark winter of despair.

    The other thing that helped me was the yoga/zen mantra: 'I have all that I need at this moment in time'. If that doesn't feel right when you repeat it mentally, try to figure out what's wrong, or what you need, and take care of that.

    To me, that it as a very good way to deal with daily life. Best wishes, Vxxx

  • Hi

    Well that has made my day :-). My ca125 was in single figures after op and joked with surgeon "why do i need chemo then?" I had my ca125 done again a couple of weeks ago as i had pain under my rib cage and thought its now in my liver!*!* Panic over it had dropped from 6 - 2. I have my oncology appointment next week so will ask doctor about taking asprin. I think time will be a great healer and hopefully each time i go for my oncology appointment it will get easier.

    Many thanks for taking the time to share your experience/knowledge with me.

    Elaine x

  • Hi Vicky and Elaine,

    , I also have found a few papers saying that a post treatment ca125 of !0 or below is a good prognostic indicator , and that cheered me up too!

    agree very important to live in the present and try not to worry about what you cant alter, otherwise can waste days worrying, but not always easy..... I agree with Eileen on the likelihood of nsaids or aspirin helping in cancer and am attending a GP update course on cancer next week. Aspirin and its role in cancer is one of the topics they will be summaring the evidence for so ill take notes and share with everyone.

    Annie, Peggy Brohn centre sounds great , something to explore. Im sure all of us struggle with the implication of our diagnosis, however brave we try to be, but goodness this forum helps !!

    lots of love

    Hilary xx

  • Coochy, that's a brilliant Ca125 result - long may it continue.

    Oh dear - I hadn't realised that a CA125 of 10 or below was a prognostic indicator. Mine has remained in the 30s all through chemo. On the 19th Sept, my oncologist stopped my 1st line chemo after only four cycles as it was impacting too heavily on my heart, and asked me to get my CA125 checked. It had gone up to 34. I know this is still (just) within the normal range, but it's going to be a long two weeks until I see him again on the 31st of this month! Have to have another CA125 result ready for the appointment, so am keeping my fingers tightly crossed that it will have fallen dramatically.

    Tina, very sorry to hear the cancer is back; will you soon be having treatment again ? Do wish you all the best for a very long remission when it's over.

    Jill xx

  • Hi Jill

    Please don't panic over the CA125 as the CA125 test and ultrasound can be abnormal in some women who do not have ovarian cancer and some women show normal CA125 and they have ovarian cancer. Sorry to hear they had too stop your treatments. I will keep my fingers crossed all goes well with your oncology appointment at the end of the month.

    Elaine x

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