Long term survivors..I am new to this site

Hello, I am looking to hear from long term survivors. I have one more session of chemo to go and am starting to think about returning to work, planning nice holidays and having hair again but all the time thinking well how long have I got. My scan is all clear and my CA 125 is down to 9 and my Oncologist was encouraging. The stats dont look great tho - wish I had never 'googled'! Hope to hear from some long term survivors.

39 Replies

  • Hello Jill and welcome. I am sure you will hear from some long term survivors here...I'm not one ...yet... but 18 months on I have just had another clear scan.

    Generally the advice is that the Google stats are out of date and they can't tell you what will happen to you as an individual.

    OC does have a habit of recurring in many but not all ...how to live with that threat but still have an enjoyable life is a subject we all share. No one has 'the answer' but this site helps because it supports people who are feeling down or worrying. Those women who happen to be in a good place that week, that month etc do their best to comfort those who are currently having a rough time. We share information, tips and courage....so reassuring because everyone here understands xx


  • Thank you. Yes I have heard that stats are out of date. I have been reading different post here for the past couple of hours and feel encouraged and so glad I phoned the help line and was encouraged to join this Forum.

  • Hi..can u please tell me what is your problem..because my dad get the liver tumor n its size is 8*6.doctors done che mobilization yesterday..he was feeling so much pain in stomuch..so please can u give me any suggestion for this.

  • Hi there, do sorry to hear about your dad and that he is in pain. I cannot offer any advice because I am being treated for ovarian cancer to which I believe this website is dedicated. I would suggest getting in touch with another support group by phoning up Cancer Research or Macmillan. Good luck in finding help and guidance.

  • Hiya, sorry your dad is suffering. Unfortunately we can't help with liver issues, we have or had ovarian cancer or we support people with OC. if you go to healthunlocked>liver you will find people there who can give you the correct advice and the help you need. Hope you get the answers and support you need. ❤xx Jane

  • Hi Jill, before finding this site I looked up my oc grade & it was grimm reading but you will find many positive ladies on here with very positive stories. I was given 6 months to live I am still here 22 months on.

    If your onc seemed happy for you to go back to work then go for it. Just make sure you take it slowly at first. Take care Cindyxx

  • Ignore the stats.... 3b and still here and stable 5 1/2 years later. One recurrence but still stable. New treatments also in the pipeline. Chin up. This is tough but doable. Live life to the full. Wishing you well. Sandra Xx

  • Oh and my Mum had OC and never recurred.x

  • Hello Jill...I'm almost five years ...my oncologist has told me that after my next check up ...all being well, I will be discharged into the care of my own G.P......I hope this brings you some hope.

    Luanna xx

  • Hello Jill, I am only half way through my chemo but personally know 2 ladies who are 15 and 20 years strong with no recurrences and had the pleasure of making contact with a delightful lady in USA who is 30 years on after Stage IIIC (with 1 recurrence in the 90's) so these are the reassuring stats I am working on, not those awful google numbers. Good luck and stay strong x

  • 1.30 a.m. and still awake due to throat infection and coughing...as I am 5 chemos down the line thought I had got away with getting any infections but no! Anyway, thank you all so much for your posts - feeling a lot more positive about survival rates. I need to put my big girl pants back on and remain positive. Thank you again.

  • Hi Jill ...

    I was thinking that you are already being positive. It's normal to have the thoughts and feelings you're having. I came to the conclusion, at some point in the past, that I'm allowed to have my own feelings, and that I'm also allowed to voice them without being judged or judging myself.

    It is true that statistics apply in general but don't apply to individuals. Every woman is different.

    I was wondering what your job is?

    Sending many hugs. Xx

  • Hi Jill, I'm a longterm survivor. 18 years ago I was like you, looking for survivors of this disease - and I found many of them:-) I was diagnosed with Stage 1V Ovarian cancer almost 18 years ago, also had massive pulmonary embolisms. I entered remission after finishing first line treatment (3 taxol/carbo before surgery, then 6 of the same after). I've been very blessed and appreciate this fact every day. Don't let the statistics scare you, but do let them arm you with a fierce desire to help your body fight against the disease returning, because after all, if you don't change SOMETHING, what is to prevent it from returning? And that SOMETHING can be different for each individual because we are all unique beings with unique bodies and unique requirement to keep our bodies in fighting mode. Seek and you shall find! Wishing you very god health .... Sandy.

  • Glad your still doing well Sandy,always think of you xx.

  • Hi Sandy .. I was wondering what changes you made. Xx

  • Hi Sandy - what an uplifting story about your journey - I, too wonder about what changes you made in your life post diagnosis? Dietary, exercise, stress reduction, a lot of us would be so interested in your experiences - you have a great story to tell, teal sister! Janice

  • Hi Sandy,

    Thanks for your story. What lifestyle changes helped you to fight the oc?

  • Hi All,

    I'm writing this in response to all those who asked what it was I did to beat Stage 4 OC. It's hard to answer that because I did quite a few things in the search for what seemed (to me) to be the right thing for me AND that was doable for a lifetime.

    So here goes ... Since my diagnosis (April 1999), I have used a zapper, daily (as per Dr Hulda Regher Clark). Then, just after finishing treatment in November 1999, I started the Dr Johanna Budwig Protocol (at least, my version of it:-) To get all the accurate information on this protocol, join the FlaxseeOil2 discussion group on the Yahoo Groups site:


    BTW, when I first joined the original version of this group, there were only 300 or so members, now there are over 24,000, so the work of Dr Johanna Budwig is very much alive and well and continuing to help many people with many types of cancers.

    I must confess, I tweak the protocol to suit my own needs because I include some animal protein (chicken breast and fish) which is a no-no, but it seems to be working for me (that isn't to say that what works for me will work for everyone because we are all unique). I still use my zapper Monday to Friday and take Usana (and other) vitamins daily. I also walk outside for 4 miles (as long as it's warmer than minus 12c). Sunshine is a critical facet of the Budwig protocol as well.

    I think cancer (of any kind) affects one mentally as well as physically. I can remember buying magazines off the shelf because I wasn't sure if I'd live long enough to finish off a subscription. I found that all the projects I planned were of shorter duration, just in case I couldn't finish them. Cancer took away my innocence and the promise of many tomorrows, but over time, life improved and it became exciting again.

    Always have a plan for tomorrow. When you go to bed at night, plan your next day and look forward to it. Take the chance to do the things you were too scared or reluctant to do before.

    I hope this helps those who asked. Keep fighting, it's a full time job!

    Sandy (BC, Canada, previously from Middlesbrough, UK).

  • Thank you so much for encoriging all of us. What is stage 1V?

    Thanks God for your expirience.

    Sorry about mistakes in English, Im from Europe. But these things the same everywhere. First thing i OC unbearable loniles. Much better with this site.

  • Stage 1V is as bad as it gets. There is no stage 5!

    Take care ... Sandy.

  • Wll, in my precancer life I had I had a sense of humor, I even lived on that for a while...as we all can see I lost a little bit of that...Stage 1V ...what a good idea...Ill share it.

    Just empty signs.

    Predictible but not Gods desision. Stay smiling all of you.

  • Hi Jill, I had my surgery in 2012 and finished my chemo in 2013. Coming up for 4 years. Still clear, been back to work for 3 years. Been blessed to have 4 grandchildren during this time too!! It does sometimes cross my mind the thought of re-occurance which can be a real worry, but we all have to try and stay aware of any changes and get on making every day count!

  • Hi, 2 and a bit years and counting.

    The stats are to be avoided on the good old interweb, they are out of date and you are not a statistic, you're you, you're doing really well and you can do this.

    Take no notice of what google has said listen, instead, to your oncologist. It's really good you're looking forward, the hair is really interesting as it returns, try to have a lovely holiday before you think about work, let your body recover from all its had to deal with.

    Sending big hugs ❤xx Jane

  • Wow! Some great stories which will keep me going. Just coming up to 3 years cancer free, Still struggle when I don't feel great to think the worst but getting better at just accepting that no-one feels great every day and I am getting older! Love to you all. Val

  • Hello! When I first joined the forum, I read something that always stuck with me "you are a human, not a statistic" those stats are not only out of date but very black and white. They don't take into account so many other factors that should be taken account of.

    I'm sure lifestyle also makes a difference. There was a post on here not long ago about how controlling stress is very important

    Big hugs!

  • Thank you. I am feeling better and glad I found this site. xxx

  • Hi Jill. I was stage 3C. I'm now 5 1/4 years since diagnosis. Not sure if you call that long-term. Unfortunately, I did have a recurrence in that time. However, everything has been fairly straight-forward for me e.g. I had good care and I responded well to all treatments. That doesn't mean they weren't tough but the desired result was attained : remission ! That wonderful word. I'm currently on a trial drug. I know a woman, with the BRCA gene, who had both OC & breast cancer. She's been cancer-free for > 25 years. There's also a friend goes to our OC Support grp, who was diagnosed around 12-15 years ago, told it was terminal but it never recurred. Good luck. Pauline

  • It will be interesting making book or ebook named All doctors mistakes about OC

    Of course they do what they can, it is hard and nongratefull job - but they sometimes use stats as a low.

    These stats as I can see do not have measure called standard deviation (how far individual cases can reach from M, statisticle midle nomber) and it is very unlikely to be predictible.

  • Hi, it will be 4 years in June since I had my op. I'm stage 3b and I'm doing OK. I've gone through chemo twice. I m OK with that. I'm living life and enjoying myself.

    My husband and I are going to Donegal for a few nights at beginning of March. Then I'm off to Amsterdam with 4 girlfriends for a !ong weekend on 17 March. On 10 April the whole family (10 of us) are off to Disneyland Paris for 5 days and last night, my husband and I booked our hotel and flight tickets for New York in August. I intend to enjoy myself! Life is too Short to worry about 'what ifs'.

    Ann xx

  • True! Enjoy!

  • Go to website called THE TRUTH ABOUT CANCER which has very inspiring stories and nutritional advice.

    Meditation, yoga and anything to reduces your stress levels helps too as well as juicing lots of veg and some fruit. Remember SUGAR FEEDS CANCER.

    You are not alone.

  • Has any one followed the advice given Chris Wark at chrisbeatcancer.com? There a a few testimonials from o/v survivors. Chris refused chemo (which I would not do) but by all accounts cured his cancer with diet and lifestyle. In particular a plant based diet. I am currently researching diet etc ready for some big changes once this chemo is done. Also, did any of you lovely ladies put weight on during chemo - I just find I need food in my tum all the time to help curb sickness. Thanks for all the replies I have received - helped so much.

  • Chris Warks cancer was cured by surgery. Suzanne Somers breast cancer by surgery followed by radiation, not by baking powder or eating carrots, though they fail to mention this to their followers. I believe I am right in saying that Somers has said she regrets the surgery and would in hindsight have cured herself anyway!. ( apologies to any fans!). In both cases chemotherapy would have only increased their chances of the cancer not returning by single digits, and in Warks case surgery alone gave him a 70% chance of clearing it for good first time, so they had the luxury of deciding not to take that option. I think it is terrible the money being made through books, lectures and the such ( Wark charges £100 hr for his diet advice hourly ) by people exploiting vulnerable, frightened folk. I studied herbalism and alternative remedies for years, I take supplements daily for my issues and they have their place along with good nutrition and as much exercise as possible to support our bodies .It,s only my opinion but I think that listening to the advice from the marvellous ladies here and their wealth of experience is the best way to go. Sandy L has struck the right balance, what an inspiration!. I totally understand the googling for answers, we all do it, my sister is constantly on her computer, she ought to take out shares in the local health food shop, I,m hoping she will settle as all she is achieving at present is making herself miserable and poorer at the bank. ( plus I know she will never stick to her green liquids and the juicers etc will end up with the bread maker at the back of the cupboard!) .I had to learn to only juice etc the things I actually enjoyed drinking/eating and so would stick to long term. Please be careful when researching diets and the like, ( and I,m sure you will have heaps of folk telling you anecdotal tales....well meaning but unreliable..). Run things past the ladies here for their thoughts, with good nutrition and the key of greatest value, a positive attitude, you will get there. Sorry for the lecture, Sisters, who,d ,ave ,em!. I,m about to phone and receive my orders for this weeks shopping. Be gentle with yourself, best wishes, marie. xx

  • Hi Jill, I was diagnosed in September 2007, stage 3C.

    I had a recurrence in 2010 but have been ok since. I had surgery and chemo both times - in 2007 and 2010. So far I have had 9.5 years post OC survival.

  • Hi there diagnosed in 2006 have had recurrences but I am doing okay and drug free at the moment. I like reading Mindfulness, I juice green foods with carrots and ginger most days and also into flaxseed oil capsules and tumeric. I take a statin already prescribed by my doctor .. I like walking but it is difficult at present as have hip problem so I try to walk on the flat every day. Mindfulness has stopped the worry mind I had most times. Yes I still stress but not as much. In between treatments, I have managed to get away for breaks etc.

  • I know an elderly lady who was treated for ovarian cancer 27 years ago. She's getting quite frail now, but she has had no further bother with the cancer, no recurrences at all. I call that long term survival! I have only survived 9 years so far, & mine has recurred, but I'm alive, & aiming to stay that way for a while longer yet. Di

  • Wow! That is great to hear. I am feeling so much better since receiving all the replies. Thank you. Jill x

  • Hello Jill

    I'm a bit late replying. I was diagnosed with stage 3c/4 ovarian cancer in 2011, five and a half years ago. I finished first line treatment in January 2012, just over 5 years ago and have had no recurrence.

    I was also lucky enough to have a wise oncologist who helped me to concentrate on living in the here and now, rather than worrying about what might or might not happen in the future. If I'd had one of the gloom and doom merchants I could have wasted years looking over my shoulder and not enjoying the present time. I'm glad that your oncologist is also encouraging.

    Wishing you all the luck in the world.

    Mary xx

  • Hi Mary, thank you for reply, so encouraging. xxx

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