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.

Hi @OldQueen1969
www.macmillan.org.uk/cancer-information-and-support/treatment/if-you-have-an-advanced-cancer/end-of-life

This really helps. Loads of love x

So very sorry to hear this. I'm a doctor who treats patients with cancer (although mainly at a much earlier stage). It's really very very difficult to know how long ago I have sympathy with the nurse not giving you a direct answer.

I was coming in to recommend a most excellent book I read when my friend was dying, by Kathryn Mannix, but it's already been recommended up thread:

OP, I’d urge you to read ‘With the end in mind’: it’s a book by a UK-based palliative doctor that speaks about what you can expect, how best to plan together - and is just so helpful in terms of taking the fear out of it all

It's just written so beautifully and talks about death and dying in a really opposite and uplifting way, but without sugar coating some hard truths. You'll find it emotional reading but it will be worth it x

@Strawberrycreamsundae - Thank you so much for that link.

Just did a bit of speed reading and some of it is already resonant for myself - especially the sort of dissociative feelings and finding the normal world a bit much - the practical stuff is also very helpful. The worst thing is feeling helpless and useless - but that's the big picture thing - this week I have sourced and had delivered an electric recliner so she can relax in front of the TV in proper comfort, we have resolved internet issues so that Mum isn't isolated from her affairs and friends, and today I bought a blender because she has been recommended a low residue diet and to try and avoid food that is too solid to minimise abdominal issues, so doing little practical things is my touchstone at the moment....

Whatever comes next i'm just trying to roll with the punches.

Hello OP, my dear mum died from cancer four years ago so I’ll share what I know and hope it helps you.
If your mum has refused chemotherapy then I would say you are looking at weeks not months. The focus will be on pain management. My
Mum started on oral morphine for the pain and then slowly became bedridden as the cancer spread. She then needed a syringe driver to be put in for the pain - This offers a continual dose of morphine.
Slowly, a person’s appetite decreases and then they refuse food while sleeping a lot. Their fluid intake goes down and then they can’t really take fluid and that’s when you know you’re into your last days.
While your mum is still
Speaking, tell her everything you want to say. In the final stages, it’s more holding hands, stroking hair and being there. Even when she’s unconscious she can probably still hear you.
I’m sorry you’re going through this, it’s agony xx

talks about death and dying in a really POSITIVE and uplifting way, not opposite...

You guys all rock - thank you from the bottom of my heart. The links are so useful and I will look up the recommended books too.

My DS is 25 and very close to my Mum and she has a close friend who i used to work for who she has been "going out" with loosely speaking for the last few years. My son is currently away with his GF until Sunday but is keeping in contact; I saw our friend today - he lost his wife to cancer that was found way too late, and is also an older gentleman - we did the brave face thing but he's obviously suffering too. It's so hard to see. Sorry for the continued information dump - maybe I really do need the dam to burst - you are all such a comfort - thank you x

I am so sorry @Oldqueen1969. It is a heartbreaking time and I completely understand you wanting to get timescales so that you can plan properly.

I have lost my Dad and MIL to cancer. My Dad had just 11 days from diagnosis to death. He was walking the dog the day he was admitted to hospital. He was 63. My poor Mum was in such shock, she was in complete denial - believing he was coming home. I was climbing the walls looking for answers online as everyone in the hospital spoke in such ambiguous terms and kept x-raying him everyday, etc and we had no idea what type of cancer he had and it was shocking that he died so quickly. His care was very poor and I'll not go into detail, but I would say, when the cancer spreads into a vital organ, it is days/weeks and not months. Similarly, when your Mum has no appetite and sleeps a lot, then the end might be very near. When they administer the morphine by pump, it is days away. I so wish we had got my Dad in a hospice, but there was a waiting list and we were never told it was going to be so close. He was desperate to get home, but he declined so quickly, it was impossible.

I am so sorry for being so matter-of-a-fact, but I am guessing that this is what you need to hear to get your head around it all.

My MIL took to her bed and slowly deteriorated over the weeks. She was 83 and had been diagnosed with pancreatic cancer, so we knew it was terminal. She lingered for weeks, but we were able to care for her at home, and while we found the MacMillan nurses useless, we got huge support from district nurses and Marie Curie. The district nurse was young and inexperienced, but she made up for her inexperience by being compassionate and went out of her way to treat my MIL with huge dignity and utmost respect. She was invaluable at helping with a special mattress, electric bed (which my MIL refused), etc. Having the help with the physical care really helped us, and my daughter and I just lay on the bed and cuddled her, stroking her cheek and telling her our news. I initially didn't want the intrusion of the Marie Curie Nurse and we really had to be talked into it. When she came, she was amazing and it was the first night in weeks that I actually got to sleep properly. She was matter-of-a-fact in such an enabling and empathetic way, it was a relief to talk about MIL's imminent death without someone trying to save your feelings. She talked us through the physical stages and it was actually a comfort and was so helpful in letting us come to terms with what might happen, when.

My advice is, contact your local Marie Curie Care and see if you can get someone in. They can engage at any stage, so it will do no harm in contacting them now.

Drink as much tea as you need and never mind the smoking. Do what you need to do and take each day in manageable stages. Enjoy your lovely Mum and never feel guilty for what you did and didn't do. She knows you are there for her. Live for the moment. You sound amazing and you've thought of the comfort your lovely Mum needs. Such courage you've shown already, reaching out for advice. xxx

So sorry to hear this. Depending where you are in the UK there should be a hospice she can go to for daycentre support. They're excellent for patients and families, do activities and provide support for families. The district nurse team she should be under will also support you

Also sorry to near you are all going through this.

I am a healthcare professional working in a hospice. The timeline will depend on the spread of the disease. If the doctors have said months they will generally be specific in saying long months (e.g4-8) or short months (2-4). They can even be specific in saying long weeks (4-8) or even days to short weeks (1-4) . So you could push for more specific.
Symptoms do sound advanced.

That said to reiterate, everyone's body has its own fight to give. If she is strong physically, strong mentally she could push out her prognosis very long. Young mothers who are so mentally strong and don't want to leave their kids live for weeks longer with poor consciousness but the will to live is so strong. An older person is normally more reserved to the end of life however and your mum sounds somewhat accepting.

My advice is not to get hung up on the prognosis though (easier said than done) and focus on the quality of every day. If she wants to rest let her rest, if she wants to go out, go out. If she wants to drink a bottle of wine tuck in! Get out the photos and make a record of her memories or life. Whatever is important.
Fatigue management is the big one(look up the 4 p's) and then if she becomes anxious there are alot of relaxation and anxiety management techniques.

I really advocate hospice for end of life, Its not for everyone though. But if it difficult to manage and you find it difficult to manage it could be a good option. We treat our patients families as nearly another patient because their emotional well being and grief is so important to us. Aftercare is also very important. Your palliative care team should provide you this support at home aswell though.

Take care of yourselves xx

Are you in touch with Macmillan? They're excellent and can give you info.

My DF died in December from lung cancer. He was living with cancer for 3 years before he died. He had years of treatment which on the whole he responded to quite well. He got sepsis a few times as is normal I believe.
The last month of his life was very bad, I don't want to sugar coat it for you as I believe you should be pre warned. The cancer went into his bones. He threw up a lot, wet himself etc. Was generally very unwell.
The day before he died he perked up enough to send me some texts (I live 300 miles away) and have a visit from his sister. He then died peacefully in the early hours of the following morning in his own bed.

Has your mum made a decision about where she wants to die? At home or in a hospice? Do you have a care plan in place for if she's at home?
Has she made known her wishes for her funeral and organised her will?

Two of my mum's friends passed away with ovarian cancer, onehad a year trying to get a diagnosis, she was only 35 & they treated her for everything from appendicitis to kidney stones before they found the tumour, she lived about 3 months from diagnosis. The other lady had a total hysterectomy & radiotherapy, never told anyone her diagnosis was terminal & lived 2.5 years after, most of it she was very well, did sponsored swims, was out & about, she was only really bad for probably 6 weeks at the end, she was 58 when she passed away. Have you looked at Hospice at home care? If you have a local hospice they can provide care at home for terminal illness, along with a GP & can help with pain relief, personal care, get any benefits sorted quickly, any equipment & aids that are needed. Marie Curie can provide night sitters so that there is someone there during the night to enable you to get some rest to keep your own strength up. Your local hospice will also help support the family as well, during & afterwards as well.

Macmillan have an ‘end of life’ site for terminal cancer sufferers ,and I believe you can also reach out on there to people with similar cancers so you might be able to get an idea of life expectancy. My dad went on when he had lung cancer. However, I agree that everyone’s different and it’s very much a guessing game. My dad was given 6 months by his oncologist but died within three weeks. Sorry you’re going through this OP - it’s a horrible disease.

Hi. So sorry you are going through this. My lovely mum had primary peritoneal cancer which ended up spreading every where. She coped admirably with chemo but they ran out of options. She ended up fighting the bastard disease for 4 years, amazing considering that they thought she would be dead before the second round of chemo, but it won in the end.

Interestingly there were three things she really wanted to do. Make Christmas, move out of the farmhouse and into the cottage and for my family to then move into the farmhouse. She looked very yellow at Christmas and was spending time having some oxygen. That was the Monday. On the Wednesday my parents moved out of the farmhouse and she was still pottering around. On Friday she was very confused and dad struggled to get her up the stairs to bed. She didn't come down again... each day she was unconscious for longer and her breathing became more laboured. She passed away the following Wednesday, 2 days after we moved into the farm house. With each tick of her list she worsened. On the Wednesday afternoon we tried to move her from her bed to a hospital bed to try and prevent pressure sores which some lovely chaps brought to the house and set up in the bedroom. However moving her was too much for her to handle. To be honest I'm glad we tried to move her as don't know how much longer she would have been in that state for. The doctor said it could be hours, days or weeks. It was heartbreaking but I was lucky that my brothers and my dad were all here so we could support each other through it. And I'm pleased that she passed away in her own home.

I used to get so upset when she was alive as it was such a shit prognosis right from the start. I grieved for her while she was still living.

My heart goes out to you and to everyone else who has been through it or will do.

I am so very sorry to hear what you and your family are going through.
I don’t have any advice other than to take the advice of other posters on this thread.
I hope that you get the answers that you want.
All good wishes to you and other posters on this thread.

My stepmother died from Ovarian cancer. She was 38. Her GP had dismissed her concerns over her bloated stomach for months, blaming candida and IBS............... by the time she got a diagnosis, it was too late.

She was given palliative chemo to try and slow down the progress of the cancer. But within weeks, she was having to have her abdomen drained as it was filling with fluid and pushing on her lungs. Doctors then thought she'd had a stroke due to the chemo but she'd got tumours in her brain, liver and kidneys by this stage. She was dead within 4 months. It was really hard to see her decline so quickly.

Enjoy every day you have left, be it a good or bad one. It's completely shit and unfair

Hello,
I'm so sorry you're facing having to say goodbye to your Mum too early.
You have been given loads of fantastic advice here.
Timescales are difficult and sudden events can happen but in general if changes are happening over months then she could have months, if over weeks then weeks, if over days then days and if over hours then hours. Like I said unpredictable things can always happen but I would look at the trend and the pace of deterioration.
I suppose the bottom line is your time with your mum and her time alive is more limited then either of you want or deserve, so make the most of it. Use everything the palliative care team have to offer if it aligns with you and your mum's wishes and have the difficult conversations earlier rather than later so everyone knows what your mum's wishes are and you know you're doing right by her, especially if there comes a time where she may not be able to speak for herself. Once the hard conversations are out the way you can forget them and concentrate on being mum and daughter. Wishing you all peace

No useful advice to add, but just wishing you and your lovely mum love and peace xxx

Hi,

My mum died 10 years ago when I was 19. It wasn’t ovarian cancer but it was stomach cancer which had burst through to her bowels.
She became extremely unwell on xmas day, before that she was throwing up more/more tired.

We called Marie cure and they arranged a bed for the living room. She was still talking etc.

On the 28th she sent me to the shop to buy a new pillow because she was uncomfortable. By the time I came back a palliative care nurse had sedated her. She died the following morning.

It was so quick. She was diagnosed that June.

I’m so grateful that it was quick and she didn’t suffer to much.

I hope you get your answers and that you get as much time as possible xx

I am so sorry about your mum. I lost a much loved family member to ovarian cancer. It spread upwards, they tried radiotherapy, but ultimately, I would estimate she survived about 4 months without the chemo.

Cancer really is a twat. That's all I can say really. My heart goes out to you, it really does. I still wish I had more time with my family member, I miss her every day.

Cancer is shit and evil. I think it's immoral that we force people to die this slow, drawn out way if they don't want to. It's just forced suffering for no reason. The people it's happening to should be able to say that and so should the rest of us. I don't think the vague talk from HCPs remotely helps, so it's good you are seeking info.

Your mum will probably benefit from having you as an advocate.

I'm really sorry your family is going through this. Let yourself reach out and lean on others when you need to. Have you seen the circle of comfort or whatever it's called with the person suffering in the middle and then concentric rings of family, friends, acquaintances etc? The people in the outer rings give comfort inwards with distress directed outwards only so the person in the middle isn't carrying others but being carried. (Terrible explanation, probably). Being strong is as much about letting others support you.

If morphine makes your mum itchy they can and should give her antihistamines - she doesn't need to suffer through it. There are also other opioid painkillers they can try if she has side effects that are unbearable on morphine (e.g. Hallucinations or nightmares), because she may well not have the same difficulties with another drug. Dying from cancer is bad enough without being tormented unnecessarily by the pain relief. Don't be afraid to speak up for her if she needs it.

It's also not such a bad thing if your mum loses her appetite. If her bowel is partially obstructed or obstructed and/or her body is shutting down then eating will cause her discomfort (pain, nausea, d&v (and having d&v once your mobility is impaired is very distressing for someone)...), so if your mum no longer wants to eat try not to panic or feel guilty for "starving" her. (Although I appreciate it will still be distressing).

It sounds like your mum has suffered a lot with her illness (or its treatment). There might come a time when it's helpful to her to gently let her know it's ok to let go and she doesn't need to hold on for you (if you feel able to do this). People do sometimes cling on past the point of their suffering being bearable because they're worried about their loved ones feeling abandoned (and a whole multitude of other reasons), and it can help them to pass peacefully to be told it's ok to let go, they won't be loved any less for it or be forgotten.

My one caution on the advocacy front is to be careful not to inadvertently take control away from your mum, even about teeny tiny things like whether she wants a cup of tea or whether she wants pillows bought (the assumption of others that you're now going to be trapped in bed until the end of your life and you get no say in it can be overwhelming...). This disease has taken away her control over her own life so give control back to her where you can. Give her a veto. Don't assume. Let her say no. Let her say yes. Try not to be too hurt if she rejects an attempt at being caring, it might just be that your helpful idea feels symbolic to your mum of something else and that distresses her.

I'm sorry I can't take this horrible situation and all the distress it's causing you away.

Take care

Hi OP, I’m sorry you’re going through this, such a hard time.

My dad who was previously so fit and healthy and a runner all his life developed a high grade osteosarcoma in his abdomen at 65. He transitioned to palliative care after the cancer aggressively returned 4 months later, and started on continuous pain relief via a syringe driver.

He lived for 4 weeks after re diagnosis. For 3 of those weeks he was unwell but still himself - eating a bit, sleepy at times and sometimes a bit vague, although that may have just been the medications. The week before he died he was sleeping much more and there were several times whilst asleep where he seemed to have slipped away. It’s hard to explain but his actual death seemed to be the end point of a process that he moved towards in that last week rather than an actual event, even though he was still cognitively “there” right till the end.

I’m so sorry that you are all going through. I’ve nursed a very dear friend through this illness and if I remember correctly it was about 2 months. There’s no reason why someone can not pass away in their own home. Hospice care at home is available 24 hours a day and they are fabulous. District nurses take care of any symptoms. You have a very difficult time ahead. All I can say is cherish every moment that you have and take care of yourself too.

Try not to be too hurt if she rejects an attempt at being caring, it might just be that your helpful idea feels symbolic to your mum of something else and that distresses her.

This is good advice. I remember that everyone wanted to have important, meaningful chats with dad whereas sometimes he just wanted to rest and watch sport. I remember the Football World Cup was on and sometimes he just wanted to watch sport and do stuff that he would have normally done, rather than always be that dying, sick person.

I’d make sure you have the details and acess to a hospice and some time and space to handle this
From the sound of her symptoms it sounds like it’s escalating fairly fast , not the same but when my dad got ascites bloating (liver cancer ) I knew it’s would be soon , and it was
Speaking as a pragmatist, with no chemo and the mass spreading it’s feasible to be sooner than later . Which isn’t always a bad thing
I’m really bloody sorry Op

Sending all my love and strength your way