To want my grandmother not to refuse cancer treatment

[soppymoo]

My grandmother has just been diagnosed with cervical cancer, she's 89 but to date still very fit and physically active, fiercely independent, takes solo holidays, etc.

The process of getting diagnosed has been a traumatic one for her, particularly due to internal vaginal exams and a fairly painful biopsy on her cervix, then a very long MRI session - but the upshot was that the cancer hasn't spread, and treatment would be radiotherapy, both external and internal. She was given some leaflets to this effect, describing treatment and side effects, but was due to see the oncologist to discuss treatment plan in proper detail. However, she has now decided not to go to this appointment and is saying she doesn't want to go through the indignity and rigours of treatment, she wants to let things take their course. She is currently pretty well, though obviously upset and shocked by the diagnosis.

I want to support her in whatever she decides, and I have not said anything to her directly as a result, but at the moment I'm feeling very torn. I understand why she does not want to go through the indignity and discomfort/pain of treatment, further internal exams and internal radiotherapy etc - yet I'm finding it difficult to accept - because she is getting her information from leaflets, which presumably give worst case scenario on treatment length and side effects (admittedly I haven't seen the leaflets myself); because the cancer seems to be early stage, and she currently enjoys great quality of life; but mainly because I do not know what "letting things take their course" will look like, and I am worried it will mean a more painful end of life...

I'm not sure what advice I'm after really, but just wondered if anyone else had experience they could share, or helpful links etc. Perhaps it is just a case of a bit more time to digest and come to terms with things. I forgot to mention that there is already a very helpful Macmillan nurse who has promised to speak to the oncologist on my grandmother's behalf and report back, I think, with more detail on potential treatment plan, although my grandmother is not likely to change her mind.

Thanks for listening x

I don't think AIBU is the best place for this - it's certainly not unreasonable for you to feel the way you do.

I'm so sorry that you're all going through this, it must be really difficult, and, particularly soon after a diagnosis, emotions run high and reactions may not be how you would expect.

I'm sure you want what is best for your grandma, as well as wanting her to try everything possible, and no one could blame you for that.

However, the final decision rests with her. It is her life, and she would have to experience all of the side effects that would come with radiotherapy etc. - many previously fit, healthy 20-something year olds struggle with the side effects, so for an 89 year old to have to go through that would be extremely tough.

I understand that at the moment, practicalities may not register as highly, because you're all in a bit of shock and it takes time to understand things fully, but in all honesty, the 'worst case scenario' on treatment/side effects would probably be what your grandma would experience, as no matter how independent she is, her body is still 89 years old.

Please, let her decide how to spend the time she has, with your full support. I'm afraid in this situation, you just have to keep your opinion to yourself.

I know a lot about the internal radiotherapy, and although it sounds horrific, at the vast majority of UK hospitals, she'll have a GA, wake up with the applicator used to give the treatment through all there, but plenty of pain relief so it really isn't uncomfortable, have the treatment (totally painless), and then they take the applicator out. There will be specialist radiographers to look after her and explain everything. Its normally done three times.
Everything is done to make it as dignified as possible.

If you can persuade her to at least meet the oncologist, then they are v experienced in talking to people about treatment and what is involved

I'm sorry you are in this situation and there is no easy solution.

I do understand how you feel as it is never easy when you feel like someone is giving up. But I personally feel it has to be your Grandma's decision. You say you are worried that you don't know what 'letting things take their course will look like, but (and I really don't mean this unkindly) do you know what treatment looks like too? It isn't pleasant either and is an awful lot to ask an 89 year old to endure.

My grandad underwent treatment for cancer in his 60's. He was fit and well beforehand but was utterly ravaged by treatment. He did fight his way back to health but said he wouldn't do it again if it came back. We understood why although it would have been hard.

Please be kind to both yourself and her though and support her (outwardly) in whatever she chooses to do.

I'm sorry you're going through this, but you have to respect her wishes.

She has every right to turn down any treatment, and if she is of sound mind, is probably making the right decision for her.

I used to think I'd always encourage people to fight, but some fights are too big.

My Granny died at 93, she'd had enough at 90, the last 3 years of her life were a battle she didn't really want to fight but wasn't brave enough to say... I say that with no disrespect to her, or our family, the Drs, etc.,

If she has decided that HER quality of life would be better just letting what has happened carry on, then you really really need to dig deep as respect it. Because often when people don't want to fight something, they have their reasons, and fighting is just as ugly as not sometimes.

I apologise for not being softer. I wish my Granny had been braver (and so did she) but if your Granny wants to fight, she should also have that right. x

I agree with CMOT that, if you can, get her to at least meet with the oncologist to chat about what her options are. I don't want to scare her or you and I can understand why she doesn't want to go ahead with treatment but locally advanced disease (when it's cervix) can be really unpleasant. Radiotherapy can be very simple and there are various ways that the patient can be treated. At my hospital the ladies only have 1-2 sessions with applicators and it may not even be necessary. I hope the MacMillan nurse comes back with something helpful for you and your grandmother.

I am so sorry.
I do think it would be good if she would go and meet the oncologist so that she can make a fully informed decision.
Can you tell her that you will go with her to that, make sure you can help her understand the answers (not saying she's too old to understand, just that it isn't easy to take it all in when you're the one with the diagnosis).
Then, you will fully support her in her decision,whatever she decides.

And I would contact MacMillan for advice yourself, too.

I think refusing treatment is a very valid choice. However I would wish to see Consultant with Grandma (if she was amanable to this) and outline why that choice had been made and see what they respond with. They might be able to alleviate her fears

My Nanna had a similar experience to fanof's grandad. She had breast cancer at 85 and had a double mastectomy & radiotherapy. She was very unhappy with her physical appearance afterwards and deteriorated mentally very quickly from that point on. While it is each individuals decision whether they go ahead with treatment or not, and I think she should speak to the oncologist before making her final decision, we have often wondered if maybe my Nan would have been happier without the treatment. It is a lot for anyone to go through at that age, mentally and physically, even if in good health to start with.

I'm not sure if any of that helps but wanted to share another way of looking at it. No one can be sure of the right decision but your grandmother has to be happy with her choice as I'm sure my Nanna felt pressured by certain family members to have the treatment.

I'm sorry that you and your family are going through this as it is not nice for anyone involved.

www.cancer.org/Treatment/UnderstandingYourDiagnosis/TalkingaboutCancer/ListenwithYourHeart/listen-with-your-heart-if-loved-one-refuses-treatment

I am sorry you are going through this, talk to her find out why she is refusing these life saving drugs.

Cross posted with aldiwhore, and the rest! Sounds very similar.

The key here is, as you said, working out what "letting things take their course" actually means in terms of levels of pain, likely sites of any secondaries, the impact of that on her quality of life, etc. And I suppose other factors like the lifespan of her parents - is it likely she's got another good few years in her assuming she takes the treatment? So get as much information as you possibly can - good you have a Macmillan nurse who's on the ball.

This must be absolutely horrible for you - I'm very sorry.

Sorry that you are in this situation. I just wanted to say that I have heard (probably read it somewhere) that cancer is often quite slow to progress in older people, and that very often they will die from other causes before the cancer progresses to a life threatening stage. If this is a possibility, then this seems to be a important part of the information that might inform your grandmother's decision. Perhaps this should be a question for the oncologist: if she refuses treatment, what is the likely prognosis?

I'm sorry, rereading what I posted I've put that really badly. I'm not saying she will develop locally advanced disease but sometimes developing secondaries before the primary tumour develops too far makes for a "pleasanter" death in cervix patients. Please get her to speak to the oncologist or ask to speak to him/her yourself. They will explain it much better than I am here!

OP, this really is your grandmother's decision. All you can do is make sure she has access to as much information and support as she wants and needs. I've had cervical cancer so know what it is like (though as a much younger patient, obviously).

Please ask her to make full use of the Macmillan nurse, and there is also a specialist charity called Jo's Trust to support cervical cancer patients and their families.

I have always found that medical staff were very happy to provide lots of information - I used to go to appointments with lists of hand written questions.

In my own case, I was very, very glad that I did not need internal radiotherapy and was in two minds about accepting it if was recommended. I also made a decision that if my cancer came back I would not opt for this .

Sadly, I have experienced a good friend and now a cousin dying of cancer (neither cervical). My lovely friend had bowel cancer which had spread but up until a week before her death needed nothing stronger than paracetamol and even in her last days was in very little pain. She was looked after beautifully in our local hospice and I'd love to have a death as peaceful and happy as hers.

My cousin is finding that morphine is helping him, and again is getting lots of support from Macmillan nurse etc.

Many hospices offer fantastic services for cancer patients - for me, Brooke House in St Albans was where i went and they gave me so much in the way of support - lots of info, practical help on diet, wigs, side effects, you name it, plus essential support on dealing with emotional side effects. Eight years on I am still grateful every day for the help they gave me.

There will lots of ways that you can support your gran - going with her to any appointments, helping with domestic stuff, just being there for her. Please do read the literature and familiarise yourself with her choices. There are no right or wrong choices - every patient is different and will make a different assessment on what path to take depending on what is important to them. Ultimately, what matters most is the decision process itself - making sure your gran has all the tools and information she wants or needs to make those choices.

Wishing you and your gran all the best xx

Thanks everyone for all your kind, wise and helpful perspectives.

HappySeven, I guess that's what I was afraid of; and I think I would feel much more able to accept her decision if she had seen the oncologist, as at least she would have all the information about options and what to expect if she decided against treatment - but I think maybe one of the reasons she didn't want to see oncologist was that she was told that he might well want to give her another examination (vagina and back passage). All too much after having been through so many appointments over the last couple of weeks, and I think the thought of a man examining her, too (she's had only female docs and nurses so far). So hopefully the Macmillan nurse can talk to her a bit more about it all.

Thanks again x

If they were suggesting intensive chemo and not much chance I would say you were being (understandably unreasonable) but not in this case. Sadly advanced cancer will be far more undignified for her to go through. To me it sounds more like she is scared than not wanting treatment. I would encourage her to attend the appointment (with a relative going with her) on the basis that she just has to listen to what they say and once she has all the information from her doctor about her case then you will support her what ever her decision.

Have just supported my best friend through this and her view is that she wouldn't put herself through the internal radiotherapy again. She found it intrusive, extremely painful and emotionally traumatic. One session was likened by her to sexual assault and although she fully accepts that it wasn't, she simply wouldn't have consented if she had realised what it entailed. Obviously it's not like that for everyone but at your grandmother's age, I can understand her views and have huge sympathy for her.

All you can do is offer support and love but please let her control her destiny as much as she is able. I wish you and her a dignified journey through this horrible, horrible disease.

I'm so very sorry for the terrible news, and the hard time you are going through.

I would say you are not unreasonable to feel any way you feel. Its natural to want what you want, and in this case you want your grandmother alive, healthy, and free from pain.

However, she really does have to make her own choices in this case, and all you can do is make sure she has all the support and love she needs.

If you are worried for her (in terms of worried she might experience pain, etc), it would be perfectly reasonable to discuss this with her (without putting any pressure on), just to explore the different feelings with her. She may even be eager to actually talk about the issue herself (or she may not, you'd have to judge her response).

All in all, I think its very lovely that you obviously care so much for your grandmother, and I wish you both all the very best.

What awful news for her and you all.

You obviously love her very much,she'll need your support and love whatever her decision.

Can you go with her to this appointment?

Ask her to go and allow you to go with her, there are numerous treatment options whether she decides to have this treatment or not.

She needs to know what her options are, how the disease is likley to progress and what can be done about metasteses.

My Nana had breast cancer in her 80s, she had treatment but spent the last months of her life in a nursing home because she couldn't walk and had lost control of her bowels (cancer spread to her spine). I think having to wear incontinace pads was worse than the cancer and treatment for her.

On the upside, she was ready to die when she did. The week before she dies she planned her funeral and even the food for afterwards.

Best wishes to both of you.

I would encourage her to see the oncologist to discuss how she feels. Support her by letting her know you respect her decision and will abide by it but explain to her that you want to be sure she has all the facts first.

If she feels like she is being pressured into seeing the oncologist to "change her mind" she may well refuse to go.

I saw what chemo and radiotherapy did to my FIL and grandmother - and I would support my parents in refusing treatment if that ever happens.

YANBU to feel the way you do and I am very sorry to hear about your grandmother.

However, I think at 89 she is capable of making her own decisions. Perhaps she just doesn't want to do it at her age. It would be sad if she underwent treatment that she didn't want for the sake of other people's feelings.

I agree completely with Cwtches .

My heart goes out to you. Lots of very good advice here, but just to add, there's a very very good book called 'How We Die' by Sherwin Nuland. Don't be put off by the rather grim title, it's much more about how we live and learn to live with our mortality, and it has some very insightful things to say about situations like your grandmother's. I wish you lots of strength in supporting her.

Have you offered to go with her to this appointment?