Please or to access all these features

Add post

Watch this thread

Save thread

Start a new thread

Flip thread

Hide thread

My feed

Active Unanswered threads

Getting started FAQ's

Unanswered threads Acronyms Talk guidelines

Hide shortcut buttons

Talk

Life-limiting illness

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Flip

1 2

Original poster

terminal cancer

26 replies

SusieOwl4 · 20/04/2019 14:15

a close relative has been given three months to live - chemo not really an option as would only give another couple of months . no immunology tests or option given . Has anyone got a second opinion and offered other treatment that worked - or any test for immunology ?

OP posts:

Thymeout · 20/04/2019 16:04

So sorry that you're in this position. I think it depends v much on the type of cancer. The different varieties are really separate diseases when it comes to treatment.

My friend was diagnosed with leukaemia (AML) and given a similar prognosis, due to her age (79). Chemo would have probably killed her off sooner, so she opted to enjoy her remaining time feeling as well as she could. No mention of immunotherapy. It might have been different for a younger patient?

Otoh, the treatment and survival rates for melanoma have been dramatically improved through immunotherapy.

You might get a more specific response if you identified which cancer your relative has been diagnosed with.

Original poster

SusieOwl4 · 20/04/2019 16:25

Stomach spread to liver .

OP posts:

myrtleWilson · 20/04/2019 22:51

Hi Susie does your relative want to undergo more treatment or have they decided not to? My sister decided that she didn't want to extend her life given her reactions to the chemo, so chose to stop treatment. It is a very difficult time and I wish you all well

Walnutwhipster · 20/04/2019 22:58

My DM has just been diagnosed and they've given her six months max. She isn't fit enough for chemo but even if she was it would only give her another three months. She isn't in pain and as heartbreaking as it will be to lose her, painful procedures will only make her time left even worse. One person doesn't decide a plan of action. I know at least eight departments were involved in her last MDT.

BackforGood · 20/04/2019 22:59

No-one just reading that information on the internet could offer you any sensible opinions about his/her condition or treatment of course, but for a lot of people, actually accepting the situation and choosing not to undergo really horrible treatment is the right option for them.
Is this you looking for an alternative, or them ?

Applesbananaspears · 20/04/2019 23:08

How old is the relative and what is her general health like? Personally if she’s in general good health then 100% she should have a second opinion and preferably fro am cancer centre - The Christie in Manchester, Royal Marsden in London, Churchill in Oxford, Vilandre in Wales. She or someone needs to check out who their doctors are who specialise in her cancer, preferably a professor or very senior consultant, NOT a registrar. You need to find out exactly what strain the cancer is of stomach cancer, if she has private care then use of, don’t touch the NHS until you get to clinical trials stage, and yes you can have the tumour tested extensively by Caris or Foundation 1. To check whether she would benefit from immunotherapy she needs to know of she’s PD-L1 positive or negative

Always always always a second opinion even if you have to pay for it. There is a big difference between “there is nothing we can do” and “there’s nothing more that can be done”

VanillaSugarr · 20/04/2019 23:14

stucknoue · 20/04/2019 23:41

There's so many factors. With liver cancer unless they can operate there isn't a lot they can do, the the fact it's secondary (spread from stomach) means it's likely to be elsewhere too. Chemo is really toxic and makes people very ill, if it's unlikely to lengthen life by much, it will simply make the time they have left worse. It's a hard choice and age does factor in. As for immunology, it's a new fast developing field but most drugs are still in trials and they may be nothing they are suitable for.

it's horrible but even modern medicine has its limits

Applesbananaspears · 20/04/2019 23:48

With liver cancer unless they can operate there isn't a lot they can do

Yes they can. There are a number of options to control it, sonecare chemo, some are hormone, some are immuno and some involve different kinds of radio ablation. These can control it for extended periods of time, even years.

Original poster

SusieOwl4 · 23/04/2019 01:07

Thank you for your replies . A couple of weeks ago she said she would have treatment if it gave her longer . But chemo would have only given her about an extra couple of months so she was told it was not really an option. I have to back off I think because she is going down hill fast and we have to concentrate on being with her . It’s horrible though having this feeling that with new treatments out there there could be something to help , but you can’t do anything .

OP posts:

Original poster

SusieOwl4 · 23/04/2019 01:12

Applesbananaspears Yes we know someone who was told nothing could be done who has raised lots of money to go to Germany and has been told that testing has revealed immunology is appropriate and should give him a good chance of recovery . Which is another reason I feel there could have been something out there .

OP posts:

amandacarnet · 23/04/2019 05:10

A friend died of terminal cancer. Nothing ore could be done. She got sick to the back teeth of people telling her about miracle cures that were completely useless for her.
If your relative is intelligent and capable of navigating treatment options, then trust what they are saying.

Original poster

SusieOwl4 · 23/04/2019 08:04

It’s not the patient who is saying that . No one has asked her about getting a second opinion. And I have said nothing to her . I am more battling with myself . I am not that insensitive.

OP posts:

CookieWarbler · 25/04/2019 04:11

Hi Suzie,
My Mum has recently had a circulatory DNA test privately. It's not yet available on the NHS but is coming soon, however time is almost up for my Mum so waiting was not an option. The test may show genetic abnormalities which can lead to targeted treatment. It's the blood test version of having tumour tissue genetically sequenced (foundation 1) but doesn't require biopsy and turnaround time for results is quicker.

guardanthealth.com

It's pricey though at just over 3k and in Mum's case was a waste of money, she's going downhill too fast but when we were told a month ago they could do no more we were desperate for some hope.

If your relative is in reasonably good health I would look into both that and definitely get a second opinion. One thing I've learnt from this hell of this journey is that you have to be your own advocate! As a result of a second opinion a year ago Mum had a further investigation which resulted in different treatment option (different chemo drug) which ultimately ended up giving her some more time. Without that 2nd opinion she would have died months ago so we're very grateful for the extra time that gave us.

Willowkins · 25/04/2019 20:33

So sorry to hear this Susie. My DH had bowel cancer which spread to the liver so not quite the same thing (it's still bowel cancer by the way doesn't become liver cancer) but genetic testing of the cancer revealed that it was of a type that would respond to immunotherapy. It certainly bought him some time although ultimately still not curable. It's difficult to ask the right questions when you're sat there in front of the oncologist but all this would be in a letter to her GP so that might be a place to start if she's got a copy and happy to share it with you. MacMillan is also a great resource for information.
And you can do something - organising little treats, listening and caring mean a lot.

Original poster

SusieOwl4 · 29/04/2019 14:29

unfortunately the three months did not happen - she only had 9 days - so the big family get together did not happen . Luckily she had time with us all a couple of weeks before and she did not suffer too much . Still numb really .

OP posts:

Finfintytint · 29/04/2019 14:33

Willowkins · 29/04/2019 15:41

So sorry Susie. I hope you can find peace.

flapjackfairy · 29/04/2019 15:46

So v sorry Susie, I have been there with mil. Given 3 months and died 3 days later. It is a massive shock but better that than months of suffering. X

Original poster

SusieOwl4 · 03/05/2019 18:29

Yes agree - she only as far as we know had a few days of suffering .I truly believe as soon as she was told she was determined just to go . She just gave up completely . Its very sad .

OP posts:

littlecabbage · 03/05/2019 18:40

I am very sorry Susie

Original poster

SusieOwl4 · 05/05/2019 19:38

thank you for your kind thoughts. We have never lost anyone close to us before and then you have to deal with all the paperwork and arrangements . It has made me think about making our arrangements now so its not so hard for the people left behind . Lots of decisions at a time when you just feel numb really. Its like being in a very strange bubble .

OP posts:

littlecabbage · 05/05/2019 20:31

You'll probably find the grief will come in waves at first. Try to just go with it, and be kimd to yourself when a wave hits you. It will become easier with time.

Bowbridge · 26/05/2019 09:32

So sorry to hear this Susie.

My mum (74 yesterday) has recently been diagnosed after going to the drs with a lingering chest infection in March. They detected shadows on her lungs which turned out to be tumors. Further tests showed breast cancer that she had 2 years ago has returned and spread to her lungs, lymphatic system, spine, pelvis, femur, colon and oesophagus.

At the moment she is well relatively well. In no pain, active, independent, a little breathless, but she was able to enjoy a big family get-together yesterday for her birthday. She surprised her 5 grown up (17-30 yrs) grandchildren with a cheque for £2500 each to enjoy/spend in her memory. Hopefully some of them will do something while she is still here.

6 weeks ago she was really very poorly. She was in hospital for 3 weeks, could barely speak due to a paralysed vocal cord and being constantly sick. She has really rallied and now is able to enjoy days out and walks along the sea front. She does not like us telling her how well she looks as she quite enjoys telling everyone she has terminal cancer.

She has decided to donate her body to medicine. So yesterday was a lovely time to be together and enjoy mum and her company, rather than getting together to sing round a coffin. I doubt we will have a funeral, just a family get-together to remember her.

9 days is hard. We feel lucky to have this time to build memories and plan. She does not want any treatment. My dad had a really good death, and I want that for her too.

littlecabbage · 26/05/2019 10:14

Sorry to hear this Bowbridge. I'm glad you are able to make some lovely memories with your Mum

Flip

1 2