Would love to hear from ladies diagnosed with advanced OC

Would love to hear from ladies diagnosed with advanced OC

I feel very alone as I've never met anyone with advanced OC. I am having a debulking radical hysterectomy on June 10th. My para-aortic lymph nodes are involved. I am a young and active (otherwise extremely healthy!) 57 year old and still can't believe I have this disease. The consultant hasn't staged my cancer yet but it's going to be either high 3's or 4. As it's also in my colon, he's advised me to have a stoma for the best possible outcome. I will also have chemo. He says he has to tell me that I may only have 3 - 5 years.

I would feel so comforted to chat online to any ladies who've had a similar diagnosis.

Sarah x

45 Replies

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  • Dear Sarah

    First of all welcome to our friendship circle. I'm glad you've found us so soon but sad that you have had reason to do so. I'm sure it will be a great resource and comfort for you and particularly in these early days. I guess your hospital might have put you in touch with Ovacome which moderates this forum. Have you discovered the Nurse-Led line yet? They are really helpful and encouraging and there for you 5 days a week in office hours should you want to chat to them: Tel: 0845 371 0554.

    You have had a lot to take in - and indeed have been given more information in one go than some of us had in a very short space of time. If you can, live for the day, and don't worry about survival statistics. It is possible to live a very active and fulfilling life with a diagnosis of advanced and incurable ovarian cancer. There are lots of events you can join and there may be a support group in your area. You can find out about them from Macmillan, Ovacome, Target Ovarian Cancer or The Eve Appeal - all excellent charities that support women with ovarian cancer. I have a number of friends with a stoma. I'll ask Jean to let you have the details for a charity that gives online support and organises events. She says they're brilliant.

    For now you have this group here and I know you'll get loads of support and friendship as you think about your forthcoming surgery. xx Annie

  • Dear Annie,

    It is so nice to hear from you. I found Ovacome through Google.

    I went to a support group for ladies with gynaecological cancers at the hospital yesterday. Although the ladies were all lovely only one lady had had ovarian cancer but hers was a 1c so I came away feeling a bit downhearted. Not that I wished her to have a higher grade of course, but I just feel I need to have links with those with Stage 3 or 4, maybe with a stoma too. Maybe I would be better with a Target Ovarian Cancer Support Group. I am going to the hospital today for pre-op tests/discussions so I am hoping they can put me in touch with someone in my situation post-op so that I can listen to their experiences.

    I have also just had a post from another lady, so I will get in touch with her.

    I also look forward to hearing from Jean.

    Thank you so much again.

    Sarah xx

  • Welcome - and I'm sorry you're joing this club.

    You look just as you describe yourself and there will be more lovely meals like that in the future.

    You've met Annie and there are lots of other lovely, experienced and helpful people on here, including stoma management.

    As you will learn ( we all have to become our own experts ) this disease takes many forms and is unpredictable.

    I was diagnosed 1c 4 and a bit years ago. I was quite thrilled at the time. But, I have had one recurrence - in the para-aortic lymph nodes, with possibly another one coming up.

    I've met a number of women diagnosed at more advanced stages than me, longer ago, who have had no recurrences. If you begin to think that OC behaves a bit like Alice in Wonderland, you'd be on the right track!

    It sounds as if your consultant is of the glass half empty variety. Ignore him. The Ovacome members day had an interesting presentation about the statistics. Age and general health have a significant bearing on how things work out. Both of these are in your favour.

    It's very hard, but stay positive. I only joined this site when I had my recurrence. It's good you're with us right from the start.

    All the best xxx

  • Chris is spot on about your consultant being 'glass half-empty' and she quite rightly says there are women living well for years after a diagnosis of advanced Stage 3 or 4 ovarian cancer.

    It's shocking that even these days hospitals aren't giving patients a preliminary care plan to take home after the initial consultation and one that contains important contact numbers - not just for the NHS but for the charities that support patients. These are crucial in the early days when the NHS send you home to contemplate all you've heard and try to make sense of it. I was diagnosed four years ago (3C and not a good prognosis) and remember coming home and googling for help/information.

    Have you been given the contact number of a clinical specialist nurse or key worker? These are specially trained nurses who can really be incredibly helpful and reassuring where the job is well resourced and done well.

    Here are some websites I've found helpful: You can join up to receive online newsletters, and news of events, etc. If you live near enough to Cambridge to visit the Maggies Centre I'm sure you would find it really beneficial. maggiescentres.org/our-cent...

    targetovariancancer.org.uk

    ovacome.org.uk

    eveappeal.org.uk

    macmillan.org.uk

    colostomyassociation.org.uk

    community.maggiescentres.or...

    xx Annie

  • Hi Sarah,

    I have stage 3C, I've had it 4+ years . I'm still here and going about my business in-between Chemo etc. As Annie has already said plenty of women on here knocking around for ages and well after 5 years. Chris is also right on point regarding the dreaded statistics, some are very outdated. Wishing you all the best for your treatment.

    xx

    Trish

  • Hello Sarah and welcome, you are definitely not alone - not one bit of it!

    Getting this diagnosis is a complete shock to the system, especially for someone fit and healthy like you. Some people (myself included) have loads of detailed questions and do tons of research, others prefer to leave it to the experts to tell them just the things they need to hear. I wonder where you find yourself on that spectrum? Either way there will be plenty of support here.

    If you search this site for 'stoma' you will find all sorts of threads and conversations about the types, how to deal with them, whether they are temporary or permanent, you name it someone has had it.

    I found this incredibly useful when at my second surgery, a part of large intestine had to be removed leaving me with a temporary ileostomy. It's not a joyous thing - but it is genuinely not a disaster, and the purpose of the procedure is ultimately so that your chances of lovely happy days ahead are very much increased - which is a fine thing.

    Good luck with your surgery on the 10th and take things as easily as possible afterwards. Accept any offers of help.

    Welcome again, take a deep breath, and then maybe another one -

    Love,

    Judith

    (3C since Sept 2014, currently no evidence of disease and very excited to have some eyelashes again. Also enjoying the poppies and roses starting to open up in my little garden).

  • Hi Sarah..

    From my own experiences, I know that having Ovarian can be a lonely experience. It has its own pathway(s) which are different to other cancers. As you say, meeting other people who aren't where you're at can add to the isolation of cancer. There are many variables which impact on how we feel. Not every woman who has Ovarian, has advanced disease. Not every woman has the same type of Ovarian. Not every woman responds the same to treatments. We're all different.

    I found it difficult at the beginning because of the reasons you've given. Some people here (although they have a very good prognosis themselves), have shown that they have a perceptive and sensitive understanding of what it might be like to have advanced disease. It's good to talk with people who aren't abashed and shocked with what cancer patients talk about from my point of view but I can understand what you're saying.

    I've met some lovely people (and not so lovely ones) and, in a way, I'm glad for that aspect of the disease. I have made some life long friends and found a beauty in some people I woud never have seen before.

    Your consultant doesn't have a crystal ball. I was told between several month and two years without treatment at the very outside. I was told that treatment was most likely not going to work. Well, I've outlived the term and had a partial response. Xxx

  • Hi Sarah

    Sorry you have had to join our little community but is a good place to come when after advice on treatments or just for a chat of feeling worried or anxious and on good days too

    I was diagnosed advanced stage four Dec 2013 had chemo then debulking surgery in July 2014 I had been on avastin too prior to surgery but unfortunately wound took four month heal completely so break from last avastin was too great so could not continue with avastin but have been no evidence of disease since surgery have next check up next week my three monthly check

    My consultant did not specify a time period all he said was it is incurable but treatable .

    I found as well as this site Macmillan nurses on phone line were really lovely when I was first diagnosed frightened and confused but 18 months since diagnosis and ok hopefully a good few years yet

    Just take things a day at a time x

    Babs

  • Hi Sarah my mum as just been diagnosed with oc an it as spread to her tummy I am so scared an upset , the consultant as said she is to have chemotherapy first then an mri an then they will see from there , acing read your post I see it says you had chemotherapy first , do you know why this is an not surgery first , I hope you can help , she also as to have a omental biopsy this week .? Don't no why or what it means our cancer nurse is on annual leave for two weeks don't know how to find out thank you xxx

  • Hi Flower19,

    I think maybe my post wasn't clear. I am having surgery first and then chemo. I'm afraid as I'm still new to all this, I don't know the reasons why they do things in different orders. Maybe you could put a post up entitled 'Why Chemo First' or something like that. I think everyone is different so they will be doing the best thing for your mum.

    I'm sure there will be another cancer nurse covering while yours is on leave - do push for an answer. 2 weeks is a long time to wait. If you still can't get an answer then post something like 'What is an Omental Biopsy'? and some of the lovely ladies on here will be able to answer that one I'm sure.

    Love to you and your mum. xx

  • Thankyou so much for your reply an kind words x

  • It's a pleasure. x

  • Hi Sarah.

    Welcome on board, but sorry that you need to join us. I was diagnosed with stage 3 PPC in 2013. At the time of diagnosis, I was told that it wasn't curable but that there were lots of treatments available and therefore shouldn't give up hope. No time was mentioned, as I had specifically said that I couldn't handle that sort of information on top of the diagnosis. I do think your consultant was a bit insensitive and more thought should have been given to informing you of treatment options depending on the final diagnosis and staging

    He says you may only have 3-5 years, but that statement could be applied to any member of the population. The only difference is, that those of us with a cancer diagnosis are forced to think about the inevitable, whereas the natural human response is to not think about it. Try not to be too disheartened and negative. We are all individual and given the variety of available treatments, there will hopefully be something that suits you for a long time to come, and who knows what new treatments are in the pipeline?

    I do hope all goes well with your up and coming surgery, and that the chemo is not too grueling for you. As previous replies have said, Macmillan can be a huge help if you find it really hard to get your head around things, and I would certainly recommend giving them a call.

    I do hope this has been of some help to you, and rest assured that there are lots of us here who know exactly how you feel. You are certainly not alone.

    Take care.

    Ali xx

  • Hi SarahfromNorfolk, I'm KrisfromSuffolk. Diagnosed 2013 with 3c ovarian cancer now 55 yrs and as you can see your not alone. Its a lot to get your head round so much is happening to you. My consultant is very direct forthright and at first I found this difficult, I was told he can't cure it, but I responded really well to first line treatment and although my life has changed I now understand so much more and feel more in control. I think to start with you just have to go with the flow, rest and give yourself time.

    Best wishes with the op and chemo

    Kris x

  • - I think there is a possibly going to be one of TOC's Together Days in Norwich later this year! You may both want to keep an eye out for announcements.... Also Sarah, there are some really good guides on the Target Website which iD recommend a look at- lots of real life stories, comments from others in similar situations and I think reasurring that you are not on your own as much as you feel just now., very best wishes, Sxx

  • Great news about TOC get together in Norwch will keep a look out for that . Thanks S xx

  • Hi diagnosed in feb with grade 3 stage 4b. was told incurable but some people live a long time.....

  • Hi Sarah

    Annie asked me to get in touch with you.

    I was diagnosed with ovarian cancer in October 2012 stage 4. I never had any symptoms so it cam as a bit of a shock. Like you I was very fit I taught 6 yoga classes and went to Curves ladies only gym. I was 70 but didn't feel I was that old!!

    To cut a very long story short, I was told by my wonderful Gyaenacologist that the cancer was very advanced. I saw my Oncologist, another wonderful man and between them they worked out my treatment plan.

    I was to have 3 chemo a short break then debulking and after wound healed another 3 chemos . After all the numerous tests, biopsy etc I started my chemo on December 12 2012. Things didn't quite go to plan as a mix up with scan dates meant I had to have 4th chemo before op. It ended up with me having the. 6 chemos before op. I was told I may end up with colostomy but nothing was set in stone as he would have a look and decide when he opened me up. I saw Stoma nurse 3 days before op and decided that I really didn't mind having Stoma as the nurse was so kind, funny, and understanding. I did end up with colostomy and I manage it very well. Please send me a private message and I can tell you more.( all positive) Please join the colostomy association on Facebook. They are a fantastic site with lots of helpful advice.

    I have been in remission for 18 months now and I have Avastin every 21 days.

    Jean. Xxxxxxxxx

  • After reading your post pleased could you help , my mum as just been diagnosed with oc an it as spread to her tummy am so scared an tearful but I see you ad chemotherapy first , my mum is to have chemotherapy first an then a Mri an then they said they will see from there , I don't know why it's not surgery first , I just keep thinking get it cut out , she also as to go an have a omental biopsy this week ? Our cancer nurse as gone on annual leave so scared an don't know who to ask thankyou xxx

  • My sisters a doctor and my ex boss is a physics grad. Between them they've done a lot of research into ovarian cancer stats. I haven't posted this info because I don't know if people like stats but this article gave me great hope:

    cancerguide.org/median_not_...

  • I agree, it is a very warming little essay. Thanks for posting it.

  • Sarah, try not to be too scared and let me give you a wee bit of hope. I was diagnosed with Stage 4 Ovarian cancer 16 years ago (aged 53) and I'm still here and in remission after finishing first line treatment. I'm now 69 and happy to be a senior citizen with 6 grandchildren (didn't have even one when first diagnosed:-) So fight like mad and keep hoping for a GREAT outcome. Miracles happen AND the Doctors are not always right:-)

    Sandy.

  • Dear Sandy,

    I am very encouraged by your story and, having researched different things I can do to help myself during and after the op/chemo, am wondering if you did anything in particular, eg nutrition/complementary therapies etc. to contribute to your fantastic remission. Any tips would be gratefully received.

    Sarah x

  • Hi Sarah,

    I am 53 and in May last year underwent a full hysterectomy and removal of two large masses from my ovaries ( I didn't know they were there until they went into spasm and I ended up in a&e.) I was diagnosed stage 4, in June with the cancer having spread to my lymph nodes. They haven't given me a time scale. I was told not to fixate on the stage and that my outcome depends on how well I respond to the treatment. That some people with stages 1-3 might fare badly and some on stage 4 may buy considerable time. Seeing as I still had teenage children at home going through school, I decided I was going to be one of those who would get the extra time I needed.

    Being a complete needle phobic initially chemotherapy was scary, but I've developed techniques for coping, soothing music on my iPhone, zoning out for the difficult bits. First line chemo Carboplatin and Taxol with Avastin from July to October, continuing with the Avastin for 11 treatments. Unfortunately my CA125 began to rise alarmingly getting to 3,033 by March this year, so I came off the Avastin now on second line chemo Etoposide and Cisplatin. But there's been no gap, non of this remission you see ladies on here talk about. Waiting to see how new regime's working out for me. Hoping it has slowed the tumour growth, have a scan next week.

    Just hoping they keep throwing stuff at it long enough to keep it at bay to buy me time. First grandchild born this week, I intend to see him grow . I'm going to holiday and live life to the fullest I can, for as long as I can. Good luck with your journey xxx Suzanne

  • Just to say the same as others, it's scary but you do get your head round things . My consultant told me oc cannot be cured but can be managed! I was diagnosed with stage 3 last sept. I had a stoma fitted before chemo as there was concern about a section of bowel that was looking a bit squashed. A bit of a shock but the stoma nurses where brilliant and helped me get my head round it. Rather not have it but you do get used to it and it certainly made the chemo easier as no constipation side effects. Had 4 carbo taxol, followed by 4hr surgery to remove all the bits, then 2 more chemos. Awaiting scan in 2 weeks. Was told that following surgery there was no visible sign of cancer left and hopefully the final chemo sessions have hoovered up any cells lurking in the depths. Also stoma will be reversed. It's all a bit of a roller coaster but there is good news around and my cancer nurse,oncologist and surgeon have all been positive but realists and that helps. Take care and keep in touch. This site is a great support xx

  • Hi Sarah,I too was diagnosed with advanced stage 4 as it had spread to my lungs.In operable and Incurable! 3-5 yrs etc.I went on net straight away,Looking at statistics etc,not liking what I was reading.So I came on here ovacome and in Ireland Ovacare,and a fantastic group of women to give support that I've ever seen.I can remember my gyneoncologist saying to me ,"I see two reactions with women who I say the same thing to them as I've said to you,One group of women,slump in their chair and start the "woe is me" scenario,They don't do so well with treatment and controlling their disease(negative vibes).the second group of women ,sit up ,shocked upset but have the "bring it on attitude" (I will fight this)" they do much better,and remember ,you are not a statistic,your name wasn't mentioned in any statistic report,we don't treat statistics here ,we treat the individul."

    He showed me he would fight along side me to manage this horrible disease.

    I hope this gives you some comfortc. Sending out a hug to you and family.xx

  • Sod the death sentence. There are women on here who've been going for more than 13 years and treatment is improving all the time. You look great. The op is a bit tough and laying about afterwards is boring but don't let it get you down.

  • Hi Sarah

    I was diagnosed stage 4 in April 2010, had a massive operation followed by chemo. Still in remission and hoping to follow in Sandyl's footsteps. So please don't give up hope. Love Chris x x

  • Thank you all so much for your replies. I was feeling really buoyed up but then I started haemorrhageing this morning and have spent most of the day at A&E. It's stopped now so I am home and having a low key family celebration of my son's 21st birthday - restaurant cancelled and lovely caring husband and kids barbecued! Has anyone else had experience of haemorrhageing while waiting for their radical hysterectomy? I felt a bit concerned as I don't want to end up with an emergency op, but my planned op with my great team on 10th June.

  • Oh dear, what a performance - he'll never forget his birthday!

    I can't help with your specific question and I wonder what, if any, light A&E may have shed - Saturday may not have been the best day to be there...

    Why don't you contact your team and explore whether there's any scope to bring the op forward in light of this experience?

    xxx

  • Yes, I think I will. Thank you. The poor family's birthdays are jinxed! The date of my op on 10th June is my husband's 60th birthday. They all say they don't care and they just want me well. We've all decided these low-key celebrations we were going to have are going to be replaced by huge celebrations when I'm well again!! xx

  • Hi Sarah

    I too have stage 4 OC ,my big op was a year ago.It wasn't easy, but I now feel great.

    This despite a couple of nodules on my lungs!! Always had a very positive attitude which I'm sure helps!!

    Wishing you lots of support, you will fight this with the loving support of your family.

    Let us know how you progress.

    Much love Jackie O xx

  • Hi Sarah I was diagnosed stage 4 advanced 2 years 8 months ago, all looked grim at the time as was admitted as an emergency via ED, wasn't sure what I would wake up to but no stoma. Am currently on my third line of chemo, had a year off, then 6 months. Have continued to work full time and am definitely in the sod it, get on with it camp - every day I think today I am ok, sometimes the gremlins get me down but not for long. I was 48 when diagnosed and celebrated my 50th on the Queen Mary drinking champagne, I'm sure you will be doing something similar for your next big birthday. Big hugs Amanda xxx

  • Hi Sarah from Norfolk. I used to live in Nfk but now I live in Australia - nothing personal of course - I still enjoy returning. I know someone diagnosed with 3C, told she had 6-12 months to live & now, 11 years later, she's our inspiration - it never recurred. Remember that, & also re-read Sandy's post above. There are lots of women who've defied the odds/prognosis. I was diagnosed at 3C, 3 1/2 yrs ago. I'm in remission. Good luck for June 10th.

    Pauline

  • Thank you Jackie O, Pauline and Amanda. You and others in this support group are the best thing that's happened to me in several weeks. I honestly don't know what I would have done without it. I would have been so low. Thank you for your good wishes. I will let you know how the op. goes. I am sure I will have lots of questions.

    Love from Sarah x

  • Hi Sarah (and anyone else interested), I completed my 4th line (round) of chemo in March having had 2 ops (plus 3rd due to blocked bowel caused by no 2 op) for removal of ovaries then a recurrent lump. I now have 3 sites of Ov. cancer and last 6 mo. of chemo have shrunk 2 of the 3 sites but the 3rd, which only grew last year, has stayed the same.

    I have not yet reached the 3 yr stage of knowing I had cancer and it's been a gruelling time but I don't feel unwell (ex during chemo) and am in the - like the phrase others use "sod it" camp.

    I was originally 3a now 3c but a friend assures me this is just a tool the medics use to decide which chemo to give. I am being given a few months off until next scan in Aug.

    My tumour marker is 35 so gives false readings.

    Good luck and keep positive.

  • Hi Sarah

    If you have a McMillan or clinical nurse specialist it may be worth asking her can she put you in touch with others. We have a small group in North Wales just about 7. We met on this site then found a few more people at target event. I have then let my Cns know that I am happy for her to pass on my email to anyone wishing to join us. It has taken me 3half years to get to this stage. We meet for coffee about every six weeks very informal but has been a huge support for me.

    I hope you find other ladies in your area. Target ovarian cancer may be able to put you in touch with others if you ask and tell them your happy to pass on your email.

    Worth checking if there are any holistic support centres as they often run groups.

    Sharon

  • Sarah how are you doing now , a hope you are ok I read your post when I first came to this site wishing you good things x

  • Still mainly in bed after 2 weeks in hospital and 10 days at home. Surgeon says I'm doing well but I still feel so weak and not much appetite. Chemo will start in about 3 weeks. When will I start to feel stronger? x

  • Good to hear from you... I'd been wondering how you'd got on.

    I'm not surprised you're feeling weak after two weeks in hospital. You just need to take it gently. In my experience major surgery takes a long time to get over, but you will be continuing to get over it at the same time as having your chemo. I was surprised this turned out to be the case for me.

    I'd expect it to take about 6 months before you start feeling more often more like yourself and stronger for longer, but there will be occasions before then too, I hope.

    As for your appetite, indulge yourself and ask the family to prepare anything that tickles your fancy.

    I spent a long time after my last surgery eating little apart from sourdough toast and wine-gums!

    Does the beautiful summer fruit tempt? Those fabulous black cherries from Greece or Turkey? Apricots? Nectarines? ......

    I went through a phase of plain pasta with olive oil, garlic, chilli and parsley...

    We could have a competition to find something that might tempt you!

    Be patient with yourself. xxxx

  • Thank you for the reassurance on recovery and food ideas! x

  • Hello Sarah, I just wanted to add my best wishes to those you've already received. As Mac says its a slow process and hers is good advice. One thing I found useful was to walk just a little bit each day- at first this was a very slow wander leaning on my lovely man and just past a few houses. As the days went on, I managed a bit further each day and so as well as being upright and getting a few lungfuls of fresh air I could also see how much stronger I was getting which I found reassuring! It did take a lot of recalibration from what I was capable of before the op but after surgery and then throughout chemo I tried to carry on with two small walks a day and do remember feeling really heartened when I made it to the end of the road, to the fields beyond and so on... Wishing you strength and hope, Sx

  • Totally agree with sunfleury! I started going to the first lamppost. I was exhausted. I very slowly increased the number of lamposts. Felt so amazing when I got back to pre op distances... Xx

  • I was diagnosed as stage 3/4 in December 2010 and I'm still here and not planning to go anywhere soon. I did have a recurrence and I'm about to start treatment for a second one so my life has changed a huge amount but I'm still enjoying life, volunteering in a charity shop, and looking forward to seeing four of my five grandchildren over the next week. I was healthy before I started to go down with this horrible disease and have done what I can - healthy food, physically active, not overdoing things and getting enough sleep, and that really helps with the treatment and recovery, so you'll find being healthy now will help. Good luck.

  • Snap - to date of first diagnosis and treatment for second recurrence starting nowish! xx

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