What's the longest ladies with serous high grade ovaca got between first txt and recurrence for stage 3b? Also longest survivors please?

My sis said she wants to immerse herself at the moment hearing positive stories as this will help keep her positive. My friend is an oncologist and she says sometimes it can be years. My sister is 35 with small babies and she is so desperate to be around for them as long as humanly possible- hence the longest survivor questions. Everyone needs hope right and as my friend says with all the new drugs coming online there us every reason to be hopeful for patients with ovarian cancer. Oh and anyone able to keep up fitness training when in remission- my sister has completed half iron man before and fitness including swimming running hiking and cycling have been a huge part of her life. Thsnks for reading- she is starting chemo today!! Fc for her!

21 Replies

  • Hi! It's great that you're looking for good stories for your sis. We're all so different, that's why statistics are often really scary, as well as being out of date. My OC was borderline classification, stage 1a, I think . (It was in both ovaries and omentum) I had my op in 2002, so just over 11 years for me. I'm older, but do believe in keeping fit. I did a half-marathon walk a few years after the op, swam to recover from 7 weeks post-op, and regularly walk fairly long distances and do tai chi twice a week. I stick to gentler exercise because of my age, but really think it helps.

    Good luck to your sister. May she have a long remission and many healthy years ahead.

    Love Wendy xx

  • Thank you that's inspirational! Well done. My sister will love that. She has been told as her omentum involved she is stage 3b not c cos certain lymph nodes look clear. She would love to do a half marathon in the future. Great to hear that it's possible anyway!!!!

  • I love good news stories and Wendy's right about scary stuff on the internet that's years out of date. I know of a lady who had Grade IVC Ovarian Cancer over 10 years ago and is still hale and hearty so there is good news out there. It needs to be tempered with some reality though if you don't want to experience an emotional roller coaster. This disease is egocentric and will take its own course so I try to celebrate my luck whilst I have it.

    I was diagnosed 3 years ago with 3C and have felt pretty well all through. Ovarian Cancer hasn't stopped me doing anything I want .... yet! I have heard that women who get a diagnosis at a younger age generally do very well but your sister needs to talk to her oncologist to clarify that because each of us is different.

    Good luck to your sister. She's a lucky lady to have such a supportive sister. xx Annie

  • Hi Annie, She is worried about coming on line herself as her consultant gynae gave her all the facts straight up so she is very aware of the worse possible outcome. Her oncologist was more encouraging. She just feels some positive stories would help her now x she is very practical. Such great advice re the out if date statistics which is why she has avoided so far.

  • Have edited my post to 'sister'. These sites can be a great support to people who've just been diagnosed and she may well want to join us when she's adjusted to the diagnosis as it's sometimes good just to share ideas and have a laugh with women in the same shoes. Meanwhile you keep posting and let us know how she's getting on. A doubly lucky lady to have such a wonderful brother and sister to support her and her young family in such tough times.

    On this site you'll meet a number of women who are running marathons, doing amazing things, having wonderful holidays and enjoying loving times with their young families. They post the most inspiring and happy blogs that will no doubt give you and your family much hope and comfort.

    with love xx Annie

  • That's fab Annie. I completely agree I myself have found online forums amazing in the past when I went through the possibility last year of having multiple sclerosis (still don't know but thought less likely but time will tell!)- which I know doesn't even compare to ovarian cancer but the theory is the same. I found that really unless someone else us going through it they think they can imagine but really you just don't have a clue whereas you ladies do know and have been there. She says it's really helping me relaying things to her and I'm sure in time she will come around but I feel right now my job it to 1000% respect whatever way she wants to play this. She had a reaction to taxol earlier but they were able to get it all in thankfully in the end- I understand it's the less important of the two. I was able to tell her some of your storeys I think it helped re ground her again so thanks to you and everyone for responding. Just so desperate to help her in any small way it's so unfair that any of you have to travel the journey and I know I can't do it for her. So instead I will mind her kids and have prepared a very yummy salad roast chicken sweet potato wedges and apple pear and rasberry crumble for her my parents and her husband to have later on. I've told her I will do that for her chemo day which she is happy with as she knows I love cooking and backing. Thanks again Annie.

  • Hi there... there are some inspiring stories on here, but as Annie says, there needs to be some reality. Nobody really knows how any one of us will do. It really depends on the type, the stage, where the disease is and what grade it is. Two people may have almost identical spread and disease type but they react to the treatment in totally different ways. The only thing I've found helpful is to do other things to take my mind from it. At first, I took up hobbies but really, I couldn't think straight. It wasted money, but I feel the loss was worth it. I'm not myself mentally as I find it harder to remember things and I'm not sure if it's the disease, the chemo or the pain relief. I still do crosswords though and, if anything, I've improved in that way. We joined the National Trust and on each third week of chemo, we took ourselves off for a few days to be together. It was a case of opening a page from the National Trust book and heading off there. I feel much less cheated now it's been almost 3 years and so am a little more resigned to the disease than I was. However, I feel that at least some of my life must be dedicated to raising awareness of this disease because so many of us weren't diagnosed when we should have been. Having this type of cancer has brought a sense of loss in many areas of my life and I know a lot of other women feel the same. I'm gradually coming to terms with who I am now and in many ways I've had a period to grieve for my old self. Really, I like myself better now and am a lot more accepting of my own faults. I don't quite feel like a whole person yet, but it's coming together slowly. Your sister has a lot to live for and must want to get through this with a passion. I'm not saying that wanting to get well is enough otherwise I feel many people could be taught to do that but having the strength to keep as healthy as possible (apart from the Ovarian) and to psychologically improve in coping with the chaos can only be a good thing. Plus, your sister has you and I think that's wonderful. Love Tina xx

  • Oh and I love the national trust I used to live in London and we were members some great sights to see! My parents have a hooray house by the sea and we talked about her heading there for a few dats every few weeks too!

  • Thank you Tina I think there are great words of wisdom there. She knows their are no garantees and at the moment impossible to know who will respond and who won't. I might get her so e knitting needles and wool lol?!

  • Well, I think distractions sometimes help. I had a knitting phase myself! I knitted 15 .. I think that was the number ... of little jumpers for some South African babies. The first ones were hopelessly big but I got better. Here's a good link for the patterns for a baby jumper and beanie hat with pictures. They recommend that they're knitted in darker colours. Basically, it's for the baby to wear on the way from hospital. I know you probably were joking about the knitting! I think any way your sis wants to go is the way to go and I can see that you're already doing that. Love to you and your sis .. T xx

  • Here it is


    Love Tx x

  • Thanks Tina.

  • Wise words from all the women who've posted already.

    I'd just reinforce the idea of planning treats for the chemo periods when she's likely to feel strongest - in my case usually at the end of a cycle.

    She's fortunate in having such supportive family.

    What I think you get from the conversations on here is vast amounts of tips which the medical people - even if they knew them - wouldn't think to tell them.

    And over time, she will be able to contribute her own sixpennyworth.

    Mind you, with a young family she probably won't have time! All the very best to you all. x

  • Hi I was diagnosed 5 years ago at stage 2b but have had several recurrences since. I am currently 'no evidence of disease' and am enjoying an excellent quality of life, (just sitting by a hotel pool typing this before I go swimming!) My biggest encouragement was a lady I met when I was first diagnosed. She had had a similar diagnosis to me , then had a recurrence but it is now 10 years since and has not had another recurrence. Treatment and research into cancer are improving all the time and I have benefitted from recent trial drugs.

    Wishing your sister and you all the best. It's great that you are so supportive emotionally and physically (making meals etc.). My sister and mum did the same for me throughout chemo and I really appreciated it.



  • Thanks sharon hope you had a nice swim and great to hear you are enjoying life which is the kind of thing she needs to hear at the moment. Indeed she is feeling wonderful today on the steroid high she said she doesn't by care why just nice to feel like herself again!!

  • hi,hope your sis coping with chemo,,im 48 and have had ovarian cancer stage 3c for 5 years now,,i have tumours ojn both ovaries,,one in my omentum and one attached to my bowel,,i cannot have them removed as all my insides are one big total mass,,but have survived 5 years as I say,,and also a friend has had the same disease for 15 years so hope this helpful and hope your sister does ok,,stay positive and good luck ..heather

  • Thanks! She had been having a few bad days this past few days. Trying to just be there for her and I'm sure this is all normal. Second dose chemo tmrw(she is having it weekly) FC she will have some better days soon.

  • Hi, good luck for tmr . I ve just finished weekly carbon/ taxol for 18 weeks , and have been lucky that I have been able to carry on with the gym, hiking and cycling. I found it helped me get through chemo -and helped a bit with the nausea and tiredness. I obviously couldn't do things with the same intensity , but it mad me feel stronger and more in control of my body ( which suddenly becomes a scary thing when diagnosed with ovarian cancer. ) I also found that a morning trip to the gym helped me get out of bed , and kept my spirits up . Not everyone feels well enough , but worth trying and seeing how she gets on , best wishes Hilary

  • Have taken a screen shot if this off my sister!!

  • Off=for! Well done you and best of luck!!

  • There are many things your sister can do with diet to help tolerate the treatment and after plus many supplements that are said to help, ginger & turmeric to name but 2. It's all on this site, just search around. My son was 8 months old when I started chemo, it is hard but in a way you are forced to keep going. This site is a wonderful wonderful resource. Nicola

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