To chemo or not to chemo??

Since this is a statistical issue, you need information regarding the long term side effects of chemo.

For instance: if the type of chemo they are offering you gives a 30% chance of making your tail fall off, and if you don't think you could live without your tail, then you would likely choose to avoid chemo as the statistical probability of the cancer returning without it is less than the probabilty of the tail falling off if you do have it (I am deliberately using a body part most humans don't have for this example.)

When finding out, two things should be considered: if the chance of a certain side effect is higher than the benefit against the cancer returning, then first of all, is it a dangerous side effect? Secondly, how would it impact your quality of life?

I am focusing on the long term because a lot of the immediate side effects disappear within a relatively short time once chemo is over.

There is always a chance of some of the short term side effects lingering over time (such as fatigue and hair loss) but again, is it a higher or lower chance, and how would it impact your quality of life?

I like Greycats’ very scientific take on the decision, and I certainly agree that it would be helpful to talk to the oncologist about side effects and probability.  But there is also a very emotional and personal part to this decision. If the cancer did come back, would you feel guilty and angry for not having done “everything “ the first time round, or are you more the type of person who could accept that sometimes it is just simple chance?  Will you feel anxious if you don’t have chemo, waiting to see what happens, or can you put the decision behind you and get on with life?

For what it’s worth, my initial decision was to go ahead with chemo with a 4-5% benefit (but then it became a moot point anyway as the pathology came back worse than expected).  But my decision is skewed because of family history, and I knew I had to do everything I could for my own peace of mind.

Finally, people’s experiences of chemo do differ a lot, some go through without too much difficulty, others find it incredibly hard.  I’d personally say don’t make your decision based on fear of the worst stories on here or other forums.  There’s a really good chance you’ll be ok, and if you are unlucky you can reduce the dose or stop part way through.  

All the best for your hard decision xxx

I'm glad you posted. I had a feeling I was missing something, and your response took care of that. 

I would second the point that you can stop or reduce if you find that you can’t stand it. Id personally take it and see how you go on with side effects…but that’s just me. Good luck with whatever you decide. Please also bear in mind that nhs predict runs to 15 years and the benefit of chemo is shown up to this point- you’re only 40 so if it can benefit you up to 15 years…..I’d go online and put your info in and see what you think. X

I'm mid-40s and wanted to do everything possible to prevent it coming back. I had talked to a friend of a friend who had BC a few years ago when I was first diagnosed and they said they virtually had to beg for chemo - but she was adamant she wanted it to give her the best chance of long-term survival.

In the end, I had it before surgery as they wanted to shrink my tumour away from my chest wall. But I am glad I had it. It is tough but doable - I worked at home throughout.

I think - 5-6% sounds like a big amount. If you look on the predict tool (I don't have the link but you should be able to search for it), most of the treatments only give you a 5% benefit. Hormone treatment gives you about the same But it all adds up!

You same as me , but my oncotype came back at 23 apparently in the middle so it was my choice.

I had smaller lump clear, in lymp nodes.

I've decided to go ahead with chemo as the only thing worrying me was when the took out my cancer lump the margins were not clear , as I had pre Cancer cells in them .

They said they removed all tissue , no more tissue to take, as where lump was it was at a part there is no more tissue to take if that makes sense.

For me this is to much if a risk to just go by all tissue is out.

When they didn't know I had extra pre cancer cells before op, I worry I may have other pre cancer cells & I'm hoping chemo would get rid of these if I do.

It's my choice to stop at any point.

It's a hard decision to make,  but Im sure you will make the right one.

Thank you everyone for your replies, they have really helped! After so much thinking, I've decided to go for chemo. In the end, even though I know it will be hard, I just want to feel like I have done everything I can to prevent it coming back 

I’m glad you’ve been able to make a decision, and really hope the chemo goes smoothly for you.  It feels like a long haul when you start, but It will go quicker than you think I promise.

xx

That sounds like a plan. I reluctantly went with chemo with a 4% gain,  which annoyingly changed to 3.5% gain when I'd finished:(

Also the figures on Breast Predict are survival not recurrence. 

Also,  in the next few years there are lots of treatments being developed now  which will be game changers,  so it's a matter of getting to that point unscathed (apart from a missing boob, trashed bones and teeth and a letrozole belly in my case!)

Good luck with the chemo and take a look at the chemo thread as it's great for hints as well  as support.

Hi 

where do you find the info about the new treatments in development? I’ve looked up trials but can’t see anything particularly positive.
thanks