Decisions about chemo

A warm but slightly weird welcome to this very safe and caring online community. The chemo decision is often a very challenging one as we have seen thousands of pictures, stories and adverts that show what a very rough ride the chemo pathway is. From all I have learnt through my time on here and as a Champ (volunteer no medical knowledge) if TNBC it is, then chemo will definitely be offered. TNBC can be a very tough nut to crack. And chemo can be a very tough nut to crack too.

The oncologist needs really to be asked directly for an opinion and may need to be pushed. The medics tend to lean towards not passing an opinion these days, probably worried for their livelihoods.

It has to be a decision made by your mum understanding every last minute detail of what the future holds. There is nothing worse than to look back at a decision and wish you had taken a different path. Chemo will more than likely leave your mum feeling rough, but on here there have been people go through chemo and hold down a full time job.

This is not of too much help I am afraid because at the end of the day 'whose body is it anyway.' Whatever her decision I feel sure you will be there every step of the way.

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Leolady56

Hi

Sorry you find yourself here regarding your Mum.

Obviously it's your Mum's decision but personally I would recommend chemo for TNBC. I got diagnosed with it in April last year.  I had a 27mm tummour with no node involvement.  I had 8 x chemo, a lumpectomy and 8 nodes removed for testing (all clear) and will be starting radiotherapy soon.

I got the all clear just before Christmas.  Chemo worked so well for me, destroying the tumour altogether and the cancer.  TNBC is an aggressive cancer and because it has no hormone receptors we're not able to take any tablets as a prevention.  It's chemo, surgery and radiotherapy.

Chemo is very doable.  Ask your Mum to talk to the Oncologist about everything or her Breastcare Nurse before she makes her final decision Don't Google it, very out dated.

All the best with your Mum's treatment.

hi

age and life stage make a big difference to how appropriate chemotherapy is and how an individual might handle it

I'm 3 years post chemo and I still suffer side effects that nobody told me about, let alone the ones the did warn me of and by all accounts i sailed through with no infections or delays due to low bloods.

I was 52 / 53 at the time and my oncologist refused point blank to accept me declining her kind offer of the toxic cocktail. 

Chemotherapy carries a 10% risk, all patients, all cancers  and although breast cancer is considerably lower, because we follow instructions, take our meds and look after ourselves, it's still around 3%.

https://www.predict.nhs.uk/tool

That's the NHS predict tool and with the information you've supplied it looks like there's an 8% uplift in stats over 5 and 10 years, with chemo over with surgery alone, remembering that stats are general not personal. 

Surgery is by far and away the most successful way of dealing with breast cancer, chemo post surgery or adjuvant is 'belt and braces' in that it lowers the risk of recurrence and spread or metastases but it doesn't alleviate the risk completely, nothing is 100%. 

I have to accept that even after them throwing the kitchen sink at me it might still come back.

I survived but chemo was very unpleasant, obviously I knew I was going to feel rough whilst I was actually having the treatment but I certainly didn't expect to still feel rough years later and still be more susceptible to common coughs and colds and flu, and chest infections, each one bringing the fear the cough is indicative of lungs mets.

At 77 I think I'd be feeling quality over quantity and chemo will definitely affect the quality.

that's my tuppence worth

hopefully it will give you an insight into how your mum might be thinking ?

hugs

Carolyn

xxx

Thank you Leolady56.  I know my Mum needs to make this decision herself, but she also wants to hear other opinions, including mine too.  I've been too afraid to say either way to be honest - and with no experience of cancer or chemo this site has been so helpful - very grateful for all the replies I have had.

Unfortunately, her Oncologist was less than helpful - we felt our questions were ridiculed to the point where we both agreed afterwards that we had been a little afraid to carry on asking things.  She wasn't very compassionate - great at giving facts and figures but not much else - and like you said, flatly refused to give her own opinion.  I will do some more research to guide her, thank you again. 

thank you Carolyn, I think your views of quality over quantity really make sense, especially when nothing is guaranteed. 

  I hadn't realised that the effects can carry on for years afterwards:-(.  The statistics are as you say - an extra 8% chance of survival with chemo, not a huge amount.  I feel much better about things from reading your reply, thank you x

hi

happy to help if I can

in my experience, and reading what others post here, I see time and time again, that if an oncologist is reluctant to give their opinion, it's usually because the benefits are negligible but they're obliged to offer their specialism and not deter from its effectiveness overall. 

The net uplift with the + 8% -3% is 5%

Is it worth it when they can't absolutely guarantee 100% that it won't come back in the breast or elsewhere. 

There's always the risk someone will turn around and say "you said ... "

At 50 I don't want to have to consider whether I was right or wrong but at 70 I'm going to be accepting of my fate generally. 

There's only two things in life that are absolutely certain, death and taxes. 

My stats for Her2+++ which is also aggressive were 50% without chemo but improved to 80 with it and trastuzumab, which is a monoclonal antibody specifically for Her2+++. 

My onco said I'd have been crazy to refuse. 

Whatever happens you have to be comfortable with whatever the future holds.  

One of the champs on here was upset his mother was refusing chemo for breast cancer but she explained that if you're offered a selection of ways to die, none are any more appealing than the others and given the choice of a slow death by dementia, which she was also beginning to suffer, she'd choose the slightly quicker breast cancer without treatment. 

One day medical science will be able to keep us alive indefinitely and it will be down to you to choose how and when you die ... given my predisposition for procrastination I'm not sure I relish the prospect. 

hugs

Carolyn

xxx

Carolyn28 you are so right and being 50 myself, I'd have made the same decision as you did, very different decisions at 77 - I think I feel at peace with that now and find it easier to understand my Mum's thinking.  She also has high hopes that if she does get secondary cancer in the future, that modern medicine may have better alternatives to chemo for her.  It is amazing how fast advances and improvements are made.  

I'm a terrible decision maker (hence my panic and need for advice on here before giving my opinion to my Mum) so I really hope I'm not around if choosing how and when you die ever happens!!! 

xxx

Just adding my thoughts, lm 53, diagnosed Nov 28 2017, first chemo Dec 15 2017.....lve been off work for 13 months sick and am still on oral chemo (Capecitabine/Xeloda which is preventative chemo.

l had a hell of a time on IV chemo, life threatening infection from 1st chemo, practically spent 6 months in bed, lm doing well now, 8 months since iv chemo ended ( had 8 month check up yesterday and no signs of cancer In breast...thank god. But l struggle with major fatigue, aching joints, dodgy hip - l just can5 do what l used to.

Would l go through 6 months of ( for me, very tough) chemo at 77 years old? Probably not. However l did react badly, some women sail through it.

Capecitabine is fairly new for TN, and lm on it because l had 7mm residual cancer in lumpectomy....even after chemo.

l wonder if your Mum could have Cape, you should ask? Oral is way easier than iv chemo, lm now back at work a little. 

Good luck x

hi

did your mum make a decision  ?

I didn't see your reply until posted, and yes, always check whether there are alternatives 

my husband joked with a waiter once that he shouldn't give me a menu, we'd be there all night

Carolyn

xx

Hi, Carolyn28, sorry hadn't checked back last week as came down with a virus.  

My Mum decided against chemo in the end - the right decision for her I believe.  She has now been offered radiotherapy and is refusing that as well - I think partly as her understanding of it is confused and she won't listen to me! It's frustrating, but all I can do is offer my opinion and tell her that she needs to make her own mind up and be comfortable with her decision ultimately.