Saying no to chemo

Hi Casput

im in the same  predicament however it’s my second time I had bc 14 yrs ago and now again but it had spread to one of my lymph nodes and 2 lumps which were larger than first thought so decided to go for chemo just incase any of those horrible little cells are still floating about but I did have to think long and hard . Not a easy decision . Good luck 

I had a similar situation. Took a long time thinking it over. Eventually I felt okay with the idea of the chemo experience and side effects because they would most likely be temporary and I thought I'd tolerate them ok. So I went ahead with it. If I'd been nervous about the side effects I wouldn't have done it.

Conversely I'm now facing the same dilemma with hormone treatment - I'm afraid about the side effects and really don't want to do it! But the stats say it might benefit me, and then there are all the "what ifs" for the future.

It's very tricky but whatever we decide, that's the right decision. All the best to you.

Hi Casput

im in the same boat as you and agree that the 5% benefit is not inspiring against what potentially the body will/may not go through.  I’m due to start my first chemo treatment on Wednesday 18 August and I’m still undecided as to whether I should go down this treatment route.  However on the other hand I feel I wouldn’t forgive myself if the cancer were to return earlier and possibly spread to other areas just because I didn’t take that 5% risk.  I guess in life there isn’t anything 100%.  I can only say that if you do decide to go for it and somewhere down the line you decide it’s not for you, then at least you have the option to stop the treatment. Casput what I’m personally going to do is use these few days before treatment starts is to talk with family and friends then make a last minute.  Whatever you decide I wish you all the very best and lots of love and hugs  

Hi casput, a horrible predicament and a tough decision. Can I ask, has your oncologist given a view at all? And how many rounds of chemo are you facing? 

I had chemo to shrink my tumour first so was able see the benefits of it - it shrank from around 40mm to around 15mm so it was a real boost and made the chemo feel worth it. It also made me think that if there were any stray cancer cells in my body, then they would have been blasted.

I was glad I had chemo and wanted to take everything they offered to give myself the best chance of it not coming back.

Chemo was tough but I managed to work from home throughout with just a few days off after each cycle. It feels like forever, but you get through it. 

I'm 7 months on and feel great, have done for a while. I still need to pace myself a bit but I am very active (my idea of a lunch break is going for a run)

I'm also mid 40s and fit and healthy going into chemo so I think I was able to bounce back fairly quickly.

I only need 5 years of hormone therapy, not 10 and I think that is because of the chemo - though I am in a medical menopause so that won't change by the time I come off the hormone therapy, thank goodness! My cancer was very ER+/PR+ - top of the scale.

When you look at the % benefit for hormone therapy, I think it is only around 5% too - but these percentages all add up. So hormone plus chemo may be 10% which starts to become a big number. If I can find the calculator tool I saw I'll post it.

It is a personal decision though, only you know your level of risk appetite, how healthy you are, what your lifestyle is like, whether you work, where you live, what support you have etc. All these factors will influence your decision if you are being given a choice. 

Hi Beathebreast

thank you you have made me feel so much better about my decision . Like you I began to think that any percentage has to be better . I’m not too concerned about the hormone tablets as I have been on them before and apart from hot flushes I managed ok . Can I ask how did you manage with the hair loss and did you use the cold cap ? Xx

I must admit it didn't cross my mind not to have chemo. Similar to Beatthebreast, I had it before surgery and saw my lump shrink from 55mm to 10mm and for me that meant a lumpectomy as a less invasive surgery option.   I managed very well through, worked from home the whole time with literally a few hours off each of the 6 cycles.   I blog about my experience and this one might help

https://community.macmillan.org.uk/cancer-blogs/b/one-life-live-it/posts/chemo-side-effects---hints-tips

whatever you decide, it has to work for you though and you have to rest easy with your decision.  Good luck x

Have you looked at the Predict tool.

https://breast.predict.nhs.uk/

You input your details and it shows you % of going through with various treatments. I found it a bit confusing but if you're data minded it might make sense.

The predict tool that Jacala has posted is the one I mentioned. Hormone treatment for me has as much benefit as chemo, so it doubles my additional percentage as I had both - which for me is well worth it!

I found hair loss the least bothersome of my side effects. I didn't want to cold cap as I'm quite headache/migraine prone and also it really increases your time in hospital. Also, I was paranoid about the possibility of cancer cells lurking in my scalp as chemo wouldn't get to it, so I was never going to cold cap.

I cut my hair off and donated it ahead of chemo and then shaved the rest. I really felt in control of it, and everyone loved the super short hair (my hair had been very long). I thought hair loss would affect me more but once I'd shaved it, going bald was barely noticeable and I just wore hats when going anywhere. I got a wig but never wore it.

My hair is growing back really well and same colour. I actually feel quite good about it as I never would have cut my hair if it hadn't been for chemo and now I get to experience lots of difference short hair styles as I grow it back. I am finding that quite fun so far.

Losing eyelashes was a bit rubbish but they grow back (slower than hair!). 

Thank you so much I probably will try the cold hair going to have my hair cut short so not so bad I’m sure I will lose it but I must admit the side effects are making me more  anxious I’m visualising feeling ill and rubbish for 20 weeks . I know there is end to it all though too