how do you even start weighing up the risks?

Was told this afternoon that I’m being recommended for chemo - and a pretty harsh one (DC) at that - in an effort for a ‘cure’. Was surprised to hear that word used, to be honest. I don’t, as far as anyone is aware, currently have cancer, but following a mastectomy in January, another tumour was recently removed and found (yes, in that order!).

I was expecting the recommendation, and I agreed readily - if not happily - enough. But then she got out the NHS Predict tool, and apparently this raises my 10 year survival rate by a whole 6-7%. That seems… tiny. Compared to losing a year+ of my life (3-4 months of horrendous chemo, 6-12 months before I can think of being back to normal), plus the additional risks of heart issues, lung issues, permanent neuropathy, and that’s just the tip of that iceberg… I’m just… How? How do you weigh up those kinds of choices?

I don’t think I could turn this down, after more than one primary/recurrence the whole ‘burn it with fire’ sounds less terrifying than taking my chances of *not* catching the next one soon enough, but wow. Why on earth would they even mention a figure that’s all of 6%?

I think anything over 3% they recommend chemo .So 6/7 % is probably seen as quite a good gain ? Horrible decision - if only for a crystal ball .Good luck with whatever you decide x 

It’s a hard one but I imagine there are a lot of people who would grab that 6% plus I believe they have to tell you all of the facts (such as they are aware).

When I was diagnosed I went along with the consultant’s suggestions, chemo, surgery, and rads. Knowing what I know now - would I take the same path - then yes I would.
I was lucky the chemo (yes I lost my hair, tired, but it did not knock me out as such and I did not view it as a year out of my life, I went with the ‘lifeline’ approach it was and is the only way I could handle it all - six months on from the end of treatment I still take it all one day at a time. I know cancer could come back but then again something else may rear its ugly head.
I agree they are all difficult decisions and the decision we all come to is personal to us, there is no right or wrong.
You can only talk it over with your GP consultants, friends, and family (maybe) but in the end, the choice is yours to make.

I wish you well you will get there lots and lots of good wishes

Poppy xx

Hi Bookish

My percentage with chemo was 3.8% … chemo was strongly advised by my team ( I have previously had non invasive DCIS) …I was told anything over 3 % will indicate chemo as a treatment.

Only you can decide what is best for you so talk it through with your team …but my take was…even with chemo …there is still a chance of recurrence or secondaries so I was going to take everything offered … I don’t want to regret anything later down the line…but I acknowledge that we all see things differently…I finished chemo in December 20…I had 16 sessions over 5 months…I still have peripheral neuropathy…I got a blood clot and had to inject myself daily for 6 months… I lost loads of weight …and developed an ectopic heart beat…but I would do it again in a heart beat… 9 months on…I am back at work…put some weight on…have had 2 hair cuts! And feel ok most of the time …I didn’t look at it as losing a year…I looked at it as, potentially gaining a long life …I’ve had a few holidays this year and things are starting to feel n9rmalish again… I’m 56 now…I want to see my 3 grandaughters grow up…and I see having chemo ( as well as all other treatments) is giving me a better chance of seeing old age…although there are never any guarantees, I know.

I wish you the very best and hope you are supported to make the right decision for you 

Six per cent was my score over 10 years that means six in 100 women will live who would not without chemo. It is statistically significant if you are one of the six. Chemo and treatment took a year of my life in 2019 but I wasn’t constantly ill … fatigue was bad but was never physically sick managed to stay active didn’t even lose all my hair because of cold cap. Worst thing was 12 cannula s. I now know I threw everything at it and is a comfort. I have another eight years of letrozole, if they are offering it you need it. And it will be a memory one day. It could also save your life 

Hi bookish

Difficult decisions have to be made, all the more difficult because you may not feel ill and that treatment may well make you feel ill. But cancer is one of those pernicious diseases that won’t let go unless it’s forced to by chemo and radiotherapy. That 6% is on top of the % difference your surgery has made so it’s not a measly 6%, it’s a lot more. It may move you from one category to the next, Why not ring the nurse and ask her to put it into context for you. My % difference was 2.5%!!

Speaking as someone who’s got secondary bc now, I’d say anyone who declines treatment is a fool because what lies ahead would be way worse. It’s not a disease that goes away. I’m not sure why you say you’re not aware you have breast cancer. Do you have a copy of correspondence to your GP? That may clarify it - or ask your breast care nurse. I can’t imagine they’d go for chemo as a preventative measure right now. 

It seems you’ve made your decision anyway and consented to the treatment. But remember, that 6% is on top of other percentages that may take you to 75% (that was my score), 85% or more. Those are good odds if you focus on the positive. At my 75%, only 1 in 4 would develop secondary bc. I was unlucky but I don’t regret giving up almost a year to treatment. Chemo sounds scary but it’s manageable and well worth it.

Ask those questions of the people who know your unique diagnosis and you will get meaningful answers. If it’s still not clear, keep asking. I wish you all the best with your treatment xx