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Stage 3 cancer but don't have a clue

(45 Posts)
Pebbles16 Thu 28-Jul-16 22:01:42

Was diagnosed 10 months ago with stage 3 major organ cancer. Given a 3-6 month window. My decision was not to have treatment until I felt unwell. I still don't feel unwell. Still actually haven't told anyone (apart from DH) because I don't see the need yet. Still at stage 3. Being pushed to have chemo. I know this will make me feel unwell so I don't want to do it. Oncologist made me feel like I was being very selfish choosing my current comfort over potential cure (even though this this is the person that has consistently told me I would die soon, yes he has a marvellous beside manner!)
Don't know what I asking for. Support? Similar stories? Just a tad of hand holding?

magimedi Thu 28-Jul-16 22:18:59

I know nothing about what you are going through but I would categorically say that it is your choice & yours only.

Whatever you feel comfortable with is right.

Sending you my best wishes.

flowers

HeffalumpHistory Thu 28-Jul-16 22:24:26

Also know nothing of what you're going through but if ever there was a time to be selfish I'd say it's now.

You do what's right for you. You don't want the unpleasantness of treatment when you feel ok. I think that's perfectly reasonable when you're stage 3.

If when things change will it happen quickly? (If they know) that might prompt me to tell others rather than "last minute" as it were.

I really mean that with so much compassion. No one knows what feels right except you flowers

Wishing you strength & lick op

IamtheZombie Thu 28-Jul-16 22:31:44

Zombie has been living with breast cancer for nearly 5 years. Two breasts, two different cancers. Second cancer was Stage 4 when diagnosed. Stage 4 cancer is not curable. Stage 3 cancer is. Please think very carefully.

buckingfrolicks Thu 28-Jul-16 22:33:38

I'm so sorry, Pebbles. I didn't want to read and run. I think you should do what's right for you. Doctors particularly oncologists can want to preserve life at all costs, I guess; but this is your life, and if you feel okay, and the prognosis isn't helped significantly by the suggested treatments, then I exactly see the sense in your choice. I think there must be a world of difference between 'taking the treatment' of chemo if there's a decent chance of it either reducing pain, or lengthening life, and taking chemo because the oncologist can think of nothing else to offer so reverts to what she/he knows. If that makes sense.

Pebbles, I cannot imagine any way that you are being selfish.

wishing you peace, courage and love
x

Pebbles16 Thu 28-Jul-16 22:40:17

Thank you all
zombie from what I can work out (and I have asked many persistent qs many times), stage 3 is where it is - just sitting there doling out the death sentence; but stage 4 is spreading. But this isn't. Despite everyone saying it would. I am flummoxed. It's non operable (so that's rubbish) but non spreading (so that's good).

HeffalumpHistory Thu 28-Jul-16 22:46:42

I'm so sorry. I (wrongly) thought stage 3 was incurable. In which case, yes it's still your decision but personally I'd be wanting to try to blast that bad boy if I was given a chance. Only you know what is right flowers

lljkk Thu 28-Jul-16 22:49:26

If you don't get treatment ASAP, doesn't that mean you have high chance of progressing to Stage 4? Sorry for the naive question.

Pebbles16 Thu 28-Jul-16 22:59:49

It's a possibility but at the time of diagnosis I was handed a 3-6 month life/death sentence (depending on how you want to look at it). So I thought "bugger horrible treatment, I'd rather go 3 months and not be tied to hospitals". Time goes on. Now the consultant doesn't quite know what to do with me. I am beyond the 6 months. No change. Possibly they could blast the damn thing into submission, but I know I would feel ill, not be able to work, have to tell everyone.
I want to stay in the "ain't broke, don't fix it" school. But am I missing out of the chance to be rid of it? Drs can't tell me and I don't expect MN too. Just feeling around for answers

JinkxMonsoon Thu 28-Jul-16 23:09:05

Is there a reason why you don't want to tell anyone? You mentioned that twice. Is having to tell people one of the reasons why you don't want treatment?

And what is the prognosis with treatment? What's the odds of still being here in five years, if you have treatment?

Sorry for all the questions. I do think you absolutely have the right to refuse treatment. But it is an unusual choice, I'm sure you'll agree. Most people would choose to have treatment that reduces their quality of life, just to buy themselves more time. Is there a reason why, for you, buying more time is immaterial?

mumto2andnomore Thu 28-Jul-16 23:10:23

It's your decision of course but I would want to try anything, chemo is brutal but is doable I had it 3 years ago for breast cancer
Good luck with your decision

thisismyfirsttime Thu 28-Jul-16 23:13:38

It's so difficult isn't it, not knowing what to do for the best? As on the one hand the treatment could do the world of good but on the other could leave you feeling shitty and on a decline which may or may not have happened without treatment. I know that dilemma, not from my own experience but went round and round with it with my dm. It is up to you OP. That makes it worse I know because what you want is for someone to say 'if you do X Y will definitely happen and if you don't Z will. But if you do A B will happen and C won't.' But no-one can. I hate cancer with a burning raging passion. sadflowersflowers

PrincessHairyMclary Thu 28-Jul-16 23:17:12

I think it would depend on the circumstances.

My elderly grandparents went through treatment in their 80s and 90s, their children and grandchildren were all grown, they d were becoming more frail and less mobile Due to age and if it had been me I would have wanted to avoid hospitals and see out my last days of a very long life in the comfort of my home.

If I got a diagnosis of cancer now with a young child and not even in my 30s Id fight with all my might to beat it and take whatever treatment was offered to me on the chance I could be around longer for my DD.

It is ultimately you're decision and a very difficult one to make.

Essexgirlupnorth Thu 28-Jul-16 23:17:26

I can see why people would turn down chemo my mum was having it fortnightly was unwell for a week, felt better and then was due the next round. She couldn't plan anything as if she couldn't have chemo because her white count was too low it got shifted to the next week. This was the second time round and it didn't cure her she died in April after nearly two years fighting it.

thatwouldbeanecumenicalmatter Thu 28-Jul-16 23:19:35

Hi Pebbles I'm so sorry you're going through this thanks

Has your Dr not assigned you a Macmillan nurse?

Chasingsquirrels Thu 28-Jul-16 23:26:21

DH is currently having chemo for inoperable cancer in his gullet.
Initial prognosis was 12 months, less without treatment.
Initial impact from 1st symptoms was v sudden and rapid, hospitalisation within weeks, I though he was going to die then.
They turned things around with interventions and started chemo.

I guess everyone reacts to different chemo differently.
DH isn't sick at all, has been very tired for the couple of days 4-5 days after and then gradually picks up.

The difference is he'd be dead now without the initial interventions.

After 3 cycles his liver secondaries have halved and prognosis, while still ultimately terminal, is maybe slightly more hopeful in terms of timescales.

He discussed whether to have chemo, but with the progression at the time it really did feel like a life or death choice right then. It sounds like that's not where you are.

I don't know why I'm posting, I can't give you any answers.

BuggersMuddle Fri 29-Jul-16 00:12:12

Do you need to see someone else? I mean, it sounds like the oncologist hasn't clearly explained to you the prognosis with treatment to allow you to make a decision.

What's the chance of cure / life extension / better quality of life with treatment? What's the likely prognosis without? What is the impact of waiting? I'm not asking you these questions, but it sounds from your OP like the things you need to understand but haven't been given enough information. Of course docs will be cagey about promises, side effects are individual etc. but sounds like you need a bit more info (even if 'averages') to go on.

Does your DH have a view? (Not his choice, but I just wonder what his thoughts are.)

DoloresVanCartier Fri 29-Jul-16 00:13:40

Sorry to hear your news OP. DM was diagnosed with stage 4 lung cancer in August 2015 and was told in the September she had 10-12 months to live. She chose to have chemo. The side effects for her are awful but at nearly 65, she gets up every day and goes to work for 4 -5 hours mon - Fri.

She has terrible side effects and knows that she is only stopping the spread as much as she can with the treatment, but, as exhausted as she is, as swollen as she is, she can't eat very well as her mouth is sore, she's (a bit) grumpy, she tells herself everyday that she has much to live for, me and my DS (at a push DF), and every extra day with hearing from us or seeing us makes her pain worthwhile as she knows one day it won't be possible.
She didn't have any pain or symptoms when she started the treatment either, but her will for her family is stronger than the will of the cancer and she will fight it every day to have us in her life that little bit longer.

Whilst I sit here and cry at the prospect of losing her, I'm so very proud that she loves us so much that she is prepared to be terribly sick to be with us.

Every extra day you have without treatment is a day closer to stage 4, and whilst you don't feel ill now, you will perhaps not have as long as you would if you had treatment, I don't know the circs your in but I think stage three gives you a much better survival rate.

annandale Fri 29-Jul-16 00:20:45

I agree with those who say you deserve a clinic appointment where you ask all the questions that you clearly still have.

I would want to thrash it out with the specialist nurse first so that I knew exactly what questions I still had, then go in to the appointment with a family member to write everything down for me.

Pebbles16 Fri 29-Jul-16 05:42:13

Thank you. Squirrels and Dolores, you have given me food for thought.
Jinkx, you are very perceptive. Not having to tell people is a huge part of the decision. Stupidly.

gingeroots Fri 29-Jul-16 10:21:48

I've had chemo for oesphageal cancer and it wasn't that bad . Everyone reacts differently of course and there are many many different types of chemo but I don't think you should make a decision not to have chemo on the basis that it will make you feel terrible .

I did have sickness and nasuea but it was controlled well with drugs .

JinkxMonsoon Fri 29-Jul-16 11:29:17

Jinkx, you are very perceptive. Not having to tell people is a huge part of the decision. Stupidly.

Do you want to talk a bit more about that? Would it help?

Is it because you don't want to have people feel sorry for you? You don't want to have to tell people your "news" over and over and listen to the same platitudes about how sorry they are? You don't want to be known as "poor Pebbles with cancer"? You don't want to have to acknowledge the cancer at all, really? Does it feel easier to be in denial?

Because I understand all that, I really do.

Sorry for all the questions again smile

stopfuckingshoutingatme Fri 29-Jul-16 11:30:04

People can survive for many years after a cancer diagnosis, both my father and best friend had about 5 years.

so these treatments (chemo etc.) can extend your life massively. Bluntly speaking its once is spreads that your number might be up.

I think you are maybe in shock, and need to speak to a wider range of specialists, this thread will give you probably more questions than answers- which is great.

I don't know if this is helpful, but last weekend I went to a funeral, and the lady had died from cancer

I am welling up a bit typing this, but she write some words that the priest read out.

she basically said that death was the last taboo, and she had decided to face up to it, and not be so damm scared of it, that's its so very natural. she also said that she had decided to grasp every day, and make the most of it. she did that for many years, and her passing was lovely and peaceful.

OP sending massive hugs and flowers

don't give up on having treatment, speak to more people, and sending you all my very best XXX

remember 1 week of feeling shit, could give you a year of joy XXXX

PollyPerky Fri 29-Jul-16 11:31:51

So sorry flowers It has to be your decision but all I can tell you is that chemo is not the same for everyone. A friend has a stage 4 brain tumour - out of the blue- and had chemo daily for 6 weeks, now followed by every day weekly ,once a month. I can only say to you that they have had minimal side effects and are getting on with pretty much everything they like doing. Slight tiredness but not as bad as they feared.

I hope you find the right course of action for yourself. I also wonder if the hospital can arrange counselling or support for you to talk through your decision not to tell people. Do you think they may feel angry not to know what you are going through? Your needs are paramount but bear in mind how your loved ones may feel too by being shut out.

mrsrhodgilbert Fri 29-Jul-16 11:40:26

I'm also a breast cancer patient, but one who got away without chemo, so far. Your decision to keep it secret from friends and family concerns me. It's absolutely none of my business but I find being prepared to die rather than tell people really sad. People react differently to this news, some are brilliant while others can't handle it but that's their issue. It doesn't seem like a reason to refuse treatment. I would be asking to see a different oncologist, in the hope that you get better information and a better approach to your situation.

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