Anyone with experience of end stage Ovarian Cancer Please?? Difficulty finding answers online / from medics

[OldQueen1969]

Hi all,

Really sorry to bring this to AIBU but it's a question of traffic, and I'm very frustrated with google searches.

Basically my 75 year old Mum has end stage cancer. It was diagnosed about two years ago and they couldn't be sure if it was ovarian, omentum, or peritoneal, but it apparently didn't matter because the treatment is all the same. It was picked up almost by accident in a blood test after she asked about HRT for extreme fatigue and a few other things that, in retrospect, had actually pointed towards the final diagnosis, but had been regarded as likely IBS / age related. That's by the by at the moment.

In her first year after diagnosis she had 4 out of 6 prescribed sessions of chemo before it properly knocked her on her arse, and she said she wouldn't go through it again. She had an unusually extreme reaction that left her feeling very much the worse for wear. However, it did shrink the tumours significantly, and other than tiredness and some digestive issues, she was able to live fairly normally on her tailored drug regime.

Last summer blood tests and scans showed things were deteriorating again, so she reluctantly accepted more chemo - fewer drugs involved, fewer sessions etc. Long story short, one session was had and it affected her so very badly she was hospitalised for a week. So, no more treatment, and she has been stoically managing her symptoms and doing as much as she can in her normal way with more fatigue, discomfort etc, all managed by the GP etc.

Since Christmas, and specifically in the last two weeks, things have escalated. She is now reluctantly taking morphine in liquid form, her physique has changed utterly - always tall and very slim, she now looks 8 - 9 months pregnant. She had tests and a consultant appointment at the beginning of February with a view to draining of fluid - except there is very little fluid - the mass is actually tumours, which of course are now interfering massively with bowels, lungs etc etc.

She has been discharged by the consultant and yesterday we met with her palliative care nurse, and were given all the info about who to contact in emergency, sorting a DNR and all that. Which I can't believe I am typing without actually wailing, because I know it's inevitable, I know it's been on the cards for two years, but I still feel like a terrified child although am not allowed to show that because my wonderful Mum has stoicism pretty much tattooed across her forehead. our relationship is good and close, and I am on hand - and I will cope - I've done dementia, so this isn't about me or my feelings.

What I am having difficulty with is the lack of information about the likely progression and speed of it now - I just want some kind of idea - the nurse yesterday was lovely but couldn't really say because everyone is different and how long is a piece of string anyway? And I fully appreciate that, but surely, there must be some studies or research that might give a guideline? Believe me, I want it to be the longest time possible - but not if she's suffering and not if she has to lose her dignity and can't pass at home which is the current aim - and I think part of my wanting to ask is because knowledge gives one a little bit of a feeling of control and also I don't want to be broad sided by something if we could have planned for it - the consultant has said months, but the sudden change in the last two weeks or so has really left me shocked.... and her too.......

So please, I am so sorry if this is upsetting for anyone, and I have looked on other boards but if anyone has direct experience they could share with me about this stage of the disease I would be so, so grateful.

Thank you.

OP - you've had great advice but I thought I'd speak from a personal place. My wonderful mam died 5 years ago from ovarian cancer. She had the pregnant look before initial diagnosis - but we knew what it would be. She faced huge pain and many, many sessions of chemo but she came out the other end. She was wonderful- living life so well when she became ill again 12 months later. She deteriorated quickly this time, and after the liquid being drained many times she spent 3 weeks in hospital before bastarding cancer took her just before xmas. I would say, if your mum isn't having treatment, it would be weeks rather than months. I'm so.sorry, my lovely, it is a hard road. Spend every moment you can with her.

If possible hospice care is wonderful. I buried my dad on Tuesday- he was diagnosed with pancreatic cancer in December- his cancer was everywhere by the time he had symptoms and we didn't think he'd see the new year, but he fought and lasted another month, so you just never know. He spent his last 3 weeks in the hospice which was just wonderful care. Before that we did 24 hour care at home for 3 weeks and even with 5 of us (all siblings) it was very tough, especially with toileting and overnight care. Marie Curie nurses provided one overnight a week, that's all, so for both of you her being at home is not the ideal we sometimes think it is.

Please take care

As pp have intimated, dad had a pain driver with extra oral topups and couldn't eat really for about 6 weeks. I was surprised he lasted so long without proper food. He was sick a lot and lost control of his bladder in the last weeks. However, he was very much himself right until the end. Yes, he slept a lot in the final 2 weeks, but he was his usual talkative, argumentative self otherwise!

Hello lovely my mil and my dad both died from cancer. With dad it was bowel cancer, took five days from diagnosis to death. With Mil, initial diagnosis of ovarian cancer and predicted six weeks to live- she got another 4 years with chemo and some operations. In the end they decided the primary cancer was peritoneal and had just spread everywhere. She had ascites (the fluid) as well, but after an op to remove part of her stomach and bowel the fluid build up stopped. She then became tiny and thin, having always been a big lady. She had to be tube fed. The end began with a fall, after that she was no longer mobile and in the end that cancer ate away so much muscle mass that she couldn’t move. Agree with others that predicting how long is next to impossible, but some signs are the sleeping/continuous morphine/no longer taking food or fluids/needing 24/7 care. Also agree try and stay in the moment as much as possible, easier said than done I know xxx

OP, my thoughts are with you. My mother died of ovarian/ uterine/ bowel cancer – no one knew where it had started. By the time she reached the stage of requiring regular morphine my sister and I were nursing her at home and the district nurse and GP told us we had 6-8 weeks. There were a number of times in those 6-8 weeks when we were convinced she was about to die but she went on and on. It was eventually five months before the end came. There are books that can give you an idea of the final stages and experienced nursing staff know when you are entering the final few hours, but otherwise it can be very difficult to tell. My mum's GP couldn't believe how long she went on for.

Last year a friend of ours was diagnosed with stage 4 lung cancer and her family was told she probably had three to six months. She came home from hospital and died just a few days later. I mention this to emphasise how difficult it can be to know for sure.

The lack of a clear time scale can be really stressful. I asked for t wo months unpaid leave from my job to nurse my mother, thinking that it would be long enough, and ended up being fired because I failed to return at the agreed time.

I'm sad to say that at the time we needed them Macmillan were absolutely hopeless, but that was a few years ago and they seemed beset by local difficulties. Your local hospice should be a useful source of information and support. I wish you and your mother the best. This can be a time of wonderful as well as dreadful moments.