Opt for no radiotherapy or hormone blockers

Hi I can’t give you a sensible answer except to say I think it’s a really valid question. I suspect lots of women on the hormone therapy in particular are mentally doing this exact calculation 

good luck with whichever treatment you go for 

Thank you kindly, I was concerned about opening up a hornets nest as I’m pretty sure we all want the easiest possible route through this disease. 

At the moment quality of life is more important to me than quantity. Controversial I know. But the fear of recurrence is real also. I’m still young and fit and concerned about serious risks blockers bring like stroke, clots, cardiac issues and osteoporosis, not to mention all the ‘minor’ issues like mood swings, sweats and so on. It’s impossible deciding the balance of what is best and I appreciate everyone is individual and there are no guarantees either way. 

If my chances were 60% with surgery only and treatment raised it to 90% etc then it would be a no brainer, but to raise from 94 to less than 95 seems not worth the risk, although I’m continually battling to and fro on my decision making. However, these results are only modelled on average survival outcomes which I fully understand, they don’t take in to account recurrence rates, hence why I’d love to hear from real people who have done this and what their experiences were. 

I can’t stress enough that I don’t mean to alarm those that take the blockers, or anything like that, I’d just like to know of experiences from the other side so that I can make a more informed choice. It’s a tough road we all walk. 

Are you using the new Predict ?  I’ve seen a couple of conversations lately saying that the oncologists want it to be ignored , as it’s possibly too generous
Have you seen an oncologist yet ? 
I had an oncotype ( self funded ) but mine was lobular BC. It gave a slightly higher risk of recurrence than Predict. 

Thanks, that’s good to know. I’m sure somewhere on one of the many booklets I received from the breast care team mentioned predict and that’s how you and the oncologist come up with your treatment plan. I could be wrong. However I’d have thought it reliable being on the NHS website, I’ll certainly research that more and look for others so thanks for pointing that out. Predict gives survival rates rather than recurrence rates hence my dilemma in looking for real life results. 

I have just had my second op as margins weren’t clear on the first so assuming all is well with that then next step will be further treatment plan so I am currently trying to gather as much info as I can on all sides of the equation. I’m not a massive believer in only following ‘tools’ or statistics as these can be somewhat manipulated or generous as you point out. I’d also love to hear from lived experiences and decide with all information instead. 

Hi Marydoll, I am 71, and was diagnosed with lobular cancer in January.(aged 70 at the time). I had lumpectomy and re-excision of lateral margin. My results were 25mm tumour, node negative, grade 2, lymph node negative, no lympho-vascular invasion. My initial treatment pathway as recommended by the breast surgeon was lumpectomy, radiotherapy and five years on AI's. I too looked at both version 2 and version 3 (latest) and had scores similar to yours. I assumed the oncologist would confirm the recommended pathway. I saw him two weeks ago. I was shown the recent Prime 11 research statistics. The criteria for Prime 11 was over the age of 65, tumour under 3cms, clear margins, node negative and prepared to take AI's for five years. As I met all of those criteria I was given the choice as to whether I wanted radiotherapy or not. The consultant set out in concise detail the short-term and long term potential side effects of RT. Mine is left sided, so cardiac consideration as well. He set this against the benefits. Overall survival rate at 5, 10, and 15 years was no different. The 10 year local recurrence rate was 0.5% with radiotherapy, and 9.3% without the radiotherapy. I asked him what he would do if he were me. He said he really didn't know. It had to be my decision;  what was important to me. My choice. Re: the predict model. He was still using version two as he said that version three had not yet been peer reviewed. He was keen that I took the AI's even though they improved my overall survival by only 2-3% on version 2 (much less on version 3). Before I left I asked him again for a recommendation as to radiotherapy. He repeated what he had said before, except to add "and I'm not 71". One thing I would also add, until I got my letter from the oncologist, I was not aware of the breakdown of the histological score that grades the tumour. Mine was Tubules 3, Pleomorphism  2 and Mitosis was 1. I only add this because these nuances may have been significant in my individual treatment plan. I send you my love and very best wishes xx

Forgot to say tumour was ER+8 PR+8 and HER 2 -ve. These were part of criteria for Prime 11 research.

May I ask….. when were you told all the detail on your tumour markers?? I’ve had lumpectomy. I have lobular too. I’ve just been told it’s early stage 18mm, estrogen positive, her-. Nothing else in any detail. Do you think that comes post lumpectomy biopsy / when I see an oncologist? Only Seen a surgeon so far! 

It’s post op , you get a pathology report . Sometimes can change from biopsy .

Hi there, I was told my results post-lumpectomy. They took around 4 weeks to come back from the lab. The initial size of the tumour was estimated at 15mm, It was in fact 25mm. I asked as many questions as I could think of. I was offered oncotyping after my re-excision, but after careful consideration and discussion with the "team" I declined it.

Many thanks for your detailed response, exactly what I was looking for. Unfortunately I don’t have as much detail of my own status other than a 12mm slow growing estrogen positive tumour which was removed 3 weeks ago, lymph nodes were clear, however on 1 of the sides DCIS was found. Second op has hopefully removed that. Like you I will know more detail later. I want to be armed with as much info as possible to be able to make a decision when the time comes. Mine is also left side and cardiac issues are a considerable factor too that I’m contemplating n the mix. 

Very encouraging info and I’ll be sure to research the different versions of predict as I was unaware of them. I’m very grateful for the info you have provided and I wish you well on your recovery. xx