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

(55 Posts)
OldQueen1969 Fri 14-Feb-20 17:17:10

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.

Snugglemonster84 Fri 14-Feb-20 17:21:11

I'm so sorry your going through this and your mum sounds absolutely amazing. This is the problem with cancer tho, timescales are completely different for everyone. I hope you get time to spend with your mum, you sound wonderfully supportive

blackteaplease Fri 14-Feb-20 17:21:36

My mum had primary peritoneal cancer and moved into a home from hospital when she couldn't manage in her own home at this stage. She died three weeks later.

I'm sorry if that's not what you want to hear. This truly is a shit disease. I'm shaking typing this and it was four years ago.

hopelessbusiness Fri 14-Feb-20 17:25:08

Have you looked on the 'life limiting illnesses' section of the 'health' board? You might find something helpful there.
I'm so sorry you're going through this. You both sound lucky to have each other xx

OldQueen1969 Fri 14-Feb-20 17:28:12

@Snugglemonster84 thank you so much for your kind words x I know I'm casting about in a bit of a panic and there is probably no answer that will help...... I'm a problem solver type, and I think this is my way of trying to stay in some kind of control......

@blackteaplease - I am so sorry for your loss and thank you for replying even though it is upsetting for you - I truly do appreciate it. My gut - and hers tbh is suggesting that months may be a generous estimate - and yes, it truly is a shit disease xxx

LyingWitchInTheWardrobe Fri 14-Feb-20 17:29:27

I don't know about this, OldQueen, I just wanted to post how sorry I was to read your post. Your poor mum - and poor you. I hope you can find the information that you need and have the support to help you and your mum through this. thanks

Also Blackteaplease, I'm very sorry to read your post too. thanks

blackteaplease Fri 14-Feb-20 17:30:38

I'm having a wobbly day today as it's my mum's birthday. Sorry for being negative on your thread. I am sorry you and your mum are also in this position x

GnusSitOnCanoes Fri 14-Feb-20 17:32:54

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. I’m so sorry you’re facing this. flowers

CallmeAngelina Fri 14-Feb-20 17:39:30

I have recently lost both my parents to cancer. My mum had endometrial, spreading to the brain and my dad had prostate spread to the bones.
I felt a real need to find out what we would likely have to be facing and what the signs might be that the end stage was near. Initial googling was too vague and even the cancer support sites themselves had info that indicated my dad in particular was closer to the end than in fact he turned out to be.
I did find one site that literally gave almost a countdown in weeks and days and likely symptoms which turned out to be quite accurate.
I could try and find it if you would like.

OldQueen1969 Fri 14-Feb-20 17:43:30

Thank you all so much for all the kind words and suggestions so far - very helpful to have things to do rather than just being stuck in the void with my horribly over active brain at the moment x

@blackteaplease I am so sorry - timing on these things really sucks sometimes - yesterday after spending the afternoon discussing funeral stuff with my Mum who wants a direct cremation, there were TWO threads on here about whether or not these sorts of services are selfish - the utter irony was astounding. In a further coincidence, which has also made me wobble a bit - it is my DHs birthday today too, and this evening we have to be at a local venue where he is doing a Gothic DJ set for Valentine's Day, booked months ago, and I honestly feel more like chewing my own arms off than attending. But life must apparently go on, and he's being very supportive so I will be glamming up and maybe having a few vodkas through gritted teeth that I hope will pass as something of a smile......

blackteaplease Fri 14-Feb-20 17:48:59

Thanks @OldQueen1969. I just had to answer you, the circumstances are so similar and there is little detail on this type of cancer.

Try to find some joy in your evening even though youd rather not go out.

RedRum27 Fri 14-Feb-20 17:49:44

Hi OP, I lost my Mom to metastatic renal (Kinsey) cancer end of last year so sorry I don’t have knowledge of your Mum’s type. However the timescales were sometimes confusing so I know what you mean. In my mom’s experience her last scan before passing away said the tumour where it had spread to hadn’t grown but then she had a fall two months later and was in end of life stage. She lost a lot of weight and I think deep down that’s when I knew the tumour had grown and was having an effect.. she had 4 years (2015-2019 which is considered good for renal cancer) from diagnosis with one scare again but after the fall she was in hospital for two weeks and deteriorated very quickly so three days before she died they did another scan on the Thursday and told us it has spread to the lungs and then she was gone on early hours Sunday morning.

Sorry if this doesn’t make much sense...basically it can really vary. Scans can come back great, not grown any more, tumour has reduced etc but then unfortunately sometimes I don’t know how or why (still trying to figure this out myself three months after she died) the tumour just takes over.

I am so sorry to hear about your Mum and she is in my thoughts....if the timescale is slow and the moment take that as a positive smile but ask the questions when she has her scans etc I did and it helped understand a little bit better xxx

RedRum27 Fri 14-Feb-20 17:51:16

I also forgot to add when they told us it had spread to her lungs on the Thursday they told us we had weeks but she only until Sunday morning so sometimes it can be very very difficult but they generally will say when it’s a short amount of time.

Abraid2 Fri 14-Feb-20 17:55:36

Search on the posts by TwitterQueen. She had ovarian cancer and her posts on various threads were very illuminating and honest. She was younger and obviously experienced vary, but she was posting right up until the last days. I believe it was infections that caused her death.

I’m sorry—I lost one parent before Christmas after a long illness and it is a stressful time to put it mildly. Lean on your friends. 💐

OldQueen1969 Fri 14-Feb-20 17:57:10

@CallmeAngelina I would be very grateful indeed if you could find that site - and I am so sorry for your losses xxx This resonates with me alot - basically, my DH and I are both only children with 6 parents between us.

My roll call is as follows -

MIL dementia - in a home - we cared for her for 18 months prior to her admission - my Mum was diagnosed about two weeks before she went into the home.

FIL - has been in remission for throat cancer for a year or two, is being observed for bowel / stomach cancer, has osteo-arthritis and may end up in a chair. he and my Step MIL are in sheltered accomodation out of area - she has just had surgery for a gynaecological issue too, but has a daughter close by.

My DF has splenic lymphoma, diagnosed over ten years ago - he had his spleen removed, lives via antibiotics, has four stents, has had an aortic aneurysm treated successfully, has, in the last two years had radiotherapy on lymphoma on his kidneys, and under his chin, both hopefully successful. He is 80 and cares for my SM who has the beginnings of vascular dementia on top of a long standing diagnosis of paranois schizo affective disorder which has given us quite alot of shenanigans in the past.......

Out of all of them, I really didn't think it would be my Mum who would end up like this - I also feel a huge amount of guilt because alot of my time has been taken up with my failing business and other adult children related issues and my MIL..... and I really, really wish I'd spent more time with her when she was well..... oh bugger, set myself off now...... sorry.....

Thanks again all you lovely people for being here - I can't easily show my feelings to people around me because everyone is having a hard time and I have to be strong but ye Gods, if you hear that a woman on the South Coast has been detained for howling at the moon tonight - it might just be me.....

Littlecaf Fri 14-Feb-20 18:01:01

I’m sorry you are going through this. It must be very hard and you sound like you are sensible and trying to plan for the worst while keeping going. flowers

My aunt died of ovarian cancer 4 years ago. The last time I saw her was about 3 weeks before she died. She had lost a lot of weight at looker about 8 months pregnant. It was quick from there and she wasn’t in pain long. I visited her at home and that day she had visited the hospice and thought it lovely. I now know she was choosing where to die and she’s come to peace with that decision. She went there about 2 weeks later and it was about 3 days in the hospice before she died. She was at peace.

toomuchtooold Fri 14-Feb-20 18:01:40

Hello, I'm so sorry for what you and your mum are going through. My dad had lung cancer, not the same, but we found Marie Curie very helpful, both in terms of practical help, and also some of their resources (they used to do a little booklet about terminal cancer, about what to expect near the end and so on.)

Ionacat Fri 14-Feb-20 18:04:50

Mum’s spread to her spinal cord (stomach cancer originally)7 and she died a week and a half later after they realised that it had spread there. It was very quick, she went into a coma a few days after we were told she just had a few weeks left and actually died a few days later after that - we swore she held on until the Friday so we didn’t have to do anything for a few days. The consultant had said it would be a maximum of weeks but in reality it was days. She was in hospital still when she died but thanks to the hospice nurse attached to the ward it was very peaceful and she had a private room, unlimited visitors and my sisters, aunt and I could stay 24/7. We were looked after - kept getting offered tea and toast. In some ways I’m glad it was quick, because she would have hated it to be long and drawn out.
Bloody horrible disease. So sorry you are going through this.

WalkingOutOfFlabbiness Fri 14-Feb-20 18:04:59

What a time you have had and are having. It’s so hard. Hope you have some good friends to care for you too.

I am a planner and organiser and with many of these issues there is nothing to really sort. I do think you always regret what you haven’t done - I always do anyway.

jellycatspyjamas Fri 14-Feb-20 18:05:42

Dear God you’ve got a lot on your plate, I think howling at the moon would be utterly justified.

My MIL had ovarian cancer, she died 9 months after diagnosis but with her it had spread to her liver before they found it. Age chose to go to hospice for palliative care and they were truly marvellous at protecting her dignity as far as possible and kept her comfortable. The end stage was quite quick tbh, she deteriorated over the course of a few weeks and died peacefully - my DH was with her.

It’s a horrible disease and one of the harder cancers to diagnose and treat (not that any of them are easy...) but she received fantastic care which did help in the end. I wish you grace and peace in the coming weeks and months.

OldQueen1969 Fri 14-Feb-20 18:11:57

Many, many thanks to all of you for sharing and for the kindness - so much appreciated right now x I try very hard to compartmentalise, avoid catastrophising etc etc but every now and then I feel I'm going to just go pop.

I send you all my deepest sympathy and love and am so grateful to you for responding when it is such a painful thing to experience......

Am going to make myself a very strong cup of tea and try and stop chain smoking - I know, stupid me - I have good friends around me, but being my Mother's daughter, I feel guilty for burdening them.....

When they handed out the rule book on this stuff I think a few chapters of mine were missing ......

jellycatspyjamas Fri 14-Feb-20 18:15:33

Nah, there’s no rule book for this type of thing - whatever gets you through, whether that be years, wine, coffee, chain smoking, howling at the moon, walking on the beach, throwing things... it’s all good. You’d get a lot of leeway in my book.

OldQueen1969 Fri 14-Feb-20 18:23:15

@jellycatspyjamas - ah bless you x thank you x I might try all of those things tonight...... and even maybe a little rage head banging if DH has some heavy stuff in his playlist - I may be 51 but a bit of metal still gets me going...... and if its loud enough I can scream at the same time and no-one will notice!

Strawberrycreamsundae Fri 14-Feb-20 18:32:38
I’m so sorry to hear what you’re going through OP, this website may be useful?
As a retired nurse I know how very difficult it is to gauge when death is near.
My thoughts are with you 💐

Neome Fri 14-Feb-20 18:36:24

Have you phoned the Macmillan helpline? They have been so supportive for me with my Dad's stage 4 melanoma. I also found some books about what to expect which sort of helped if you know what I mean. I'll look out the names.

One book that springs to mind about loss rather than about medical stuff is Tear Soup

Thinking of you 🌹

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