Endo Predict Results - deciding whether to have chemotherapy or Just Radiotherapy

Hi Rubia

Welcome to the forum and sorry to hear that you have been diagnosed with breast cancer.  Everyone's experience of chemo is different so you might not necessarily have any or very few side effects.  But even if you do there are medications that you can take to help with them.  Your medical team will do their very best to make sure that you stay well during treatment.

While it's completely up to you whether you want do chemo or not you could maybe give it a try and if it doesn't suit you, you can always stop having it, also your medical team will stop it if they feel that the chemo is doing you more harm than good.

There is a chemo thread on this forum which you can look at in which those undergoing chemo or those that have gone through chemo give help and advice to anyone who asks for it.  The following is the link: https://community.macmillan.org.uk/cancer_types/breast-cancer-forum/f/questions-about-diagnosis-and-treatment/240592/june---august-2022-breast-cancer-chemo.

Wishing you the best of luck whatever you decide to do.

Best wishes

Daisy53

Thank you for your message Daisy53. I’ll have a look at the link. All the best to you too. 

I haven't had this decision as I needed chemo to shrink the tumour from my chest wall, but just to say that 6% seems like a big percentage to me. If you look at the NHS predict tool then survival for surgery alone is a big chunk and the hormone therapy, chemo and bisphosphonates are smaller percentages but when you add them all together, suddenly you get into a very high survival rate.

I'm mid 40s so they wanted to throw everything at me for long term survival so it is maybe different. The difference chemo makes to survival gets better and better the more years in the future you look. Mine is something like 4% for 5 years, 5% for 10 years and 7% for 15 years which I'm hoping means even better for later years.

I have triple negative breast cancer, which makes things slightly different as I can’t reduce the risk of recurrence through hormone blockers. I was similarly underwhelmed by the low impact chemo had statistically on my tumour size, grade and node status. The oncologist recommended chemo. In the end I had an appointment with the hospital’s head of oncology to try to get a more nuanced view of my risk, and my likely ability to tolerate chemo. I was concerned about permanently disabling side effects of chemo such as peripheral neuropathy and heart damage. I did agree to chemo after this discussion mostly after being convinced the benefit for me was real, and that I didn’t have any comorbidities that would increase the risk of those long term consequences. I will never know what would have happened if I had taken the other path but am comfortable with my decision. 

Thank you for message.  There are many different ways to interpret the statistics, I appreciate your suggestion to look at the Predict tool on the NHS website.  I wish you all the best.

Thank you for your message.  I too am worried about the possible long term side effects of chemo treatment. If you don't mind me asking, which chemo drugs were you prescribed? Did you tolerate them well? Happy to know you are comfortable with your decision - that is how I wish to be too. 

I have 4 rounds of EC (epirubicin and cyclophosphamide) every 3 weeks and I am half way through that, finding it ok. Then I get 12 weeks of Paclitaxel. 

Hi Rubia, I was in a similar predicament to you; I had mastectomy that cleared all the visible cancer, I had no lymph node involvement and my tumour was sent for an oncotype test (similar to what you describe). The optimum score (on a scale of 0-100), is 25 or less, anything under 25 deems chemo to be of no benefit, but anything over (25-100) would benefit from chemo! There’s no curve to say how much benefit! Anyway, I was 28 and spoke to onco who just said “it’s up to you, but mets from breast cancer are notoriously difficult to treat” I interpreted that as, just get on with it and have the chemo!!! So I did! And I’m kind of glad I did. They scheduled 6 sessions, one every three weeks. I had 3 EC which were absolutely fine, no problems at all, I felt great throughout, think the steroids put me on a bit of a high! But the last three were Docetaxil, at least that was the plan!!! After the first Docetaxil I felt fine for the first couple of days, but felt shocking for the next three weeks after! I decided to stop after that, I couldn’t bear another of those! I was told that the 4 I had were of benefit, plus I’m having radiotherapy (only 5, I originally thought it was 15), followed by the hormone pills. So everything is being thrown at it. I think I’d have been a bit cross with myself had I not done the chemo. Just try it, if it’s s**t you can stop, but you’ll probably find it’s not bad at all. Anyway, all the best in whatever you decide, que sera, sera!! xxxx. Also look at NHS predict tool, it’s self explanatory. Google it xx

Hi

As everyone says , everyone is different , however I had 12 Paclitaxel and was okay. You will lose your hair and I had several other side effects, the lasting one is mainly peripheral neuropathy, mainly in the feet, which I do still suffer from to an extent. I was never ill with the drug , but a friend developed sepsis and had to stop it , so it is really difficult to advise, but I think generally it is well tolerated.

Good luck with your decision , the predictions are just that. , a very general view of everyone , unfortunately we aren’t statistics but real people who have to make these really important decisions.

Jo x

Good luck with your treatment. Hope all goes well for you.