I know that this can be a controversial issue but genuinely would like open discussion to help me. I am 65, had IDC +± I had a lumpectomy for a 7mm tumour, no lymph node involvement. I’m due to start radiotherapy soon.
I had a helpful conversation with my oncologist about the risks and benefits of starting AI’s. I’m particularly concerned about potential irreversible effects on my bones or heart ( via effects on cholesterol and blood pressure), because of other issues that may I have. I know that I can have other medications to deal with these but I’m not interested in having more medications with other potential side effects. I know I can try and see if I get all the other side effects or not but honestly feel scared of feeling miserable!
On predict, my maximum benefit of AI’s is just over 1% over 15 years. So the odds of me being the 1 in 100 women who get benefit seems ridiculously low. As I understand exercise can offer 20-30% reduction in recurrence and improvement in survival, so it seems a far better option. And yet…. the oncologist said that the national guidance is to recommend that I take it.
I wouldn’t normally’go against medical advice’ but these odds don’t sound great to me. I would love to hear from others considering whether to start AI’s at all or how people go about making these decisions
Hi,
I’ve been taking Letrozole for 2 years with minimal side effects, luckily. However I’m high risk and have had and I am still having other adjuvant therapies. In your position I would probably give AI’s a go and if I developed concerning side effects I would stop them.
In these situations they are no right and wrong answers. It’s a personal decision. I wish you well whatever your decision is.
Hi @gabrielle1 you’re right, this subject gets discussed time and time again and can end up with contrary viewpoints expressed quite “vigorously”! You may want to go back through the hormone subcategory to read some of the discussions because each one contains everything that can possibly be said on the topic. But if you don’t have the time or inclination to do that, I will say that I am halfway through a five year program of Letrozole. I am currently 69 and tolerate it reasonably well. I had my second biannual DEXA scan earlier this year and the bone health shows no osteopenia (let alone osteoporosis), which, given my age, is pretty good but then I do a lot of walking. My Predict score is even lower than yours but of course that is about the likelihood of death from BC not about recurrence specifically. So why do I take it? My tumour was stage 1 Grade 1 but was er+ 8/8 so very highly sensitive to oestrogen and er+ BC has the potential to come back years after primary diagnosis. Letrozole’s impact continues for some time after one stops taking the drug so I figure that the protection it will continue to give me outweighs the minimal SE. I am very risk averse. People will say that you can get a recurrence even when taking endocrine treatment which is true but the numbers are very small.
Having said that, I would never pressurise someone who is not comfortable in taking a drug to take that drug. If your oncologist, whilst preferring you to take it, is accepting of your decision not to then it comes down to your own assessment of risk versus reward. There is a significant percentage of women who either decline to take endocrine therapy or who give it up after giving it a go, so if you know that you could accept an early recurrence should it happen, then you would be in the company of tens of thousands. As I say it is a case of risk versus reward but based on the unknown - unknown SE, particularly long term SE and unknown potential of recurrence despite what Predict says (my oncologist referred to Predict as a wet finger in the air). It’s such a personal decision and one that each of us has considered at some time, however, only you can determine what is best for Gabrielle despite what anyone else may say. Good luck in making that decision.
Can I check something you posted about your Predict score?
You talk about your Predict score being lower than 1% and imply that’s your percentage survival rate, is that right? So if I interpret that correctly, after 15 years 99+% of people with your diagnosis and treatment will have survived (though some may have had a recurrence).
I am just clarifying because @gabrielle1 seems to say that the 1% “score” she has is only that percentage of people will benefit.
When going through my treatment no one mentioned Predict until I was about to start radiotherapy (the last part of my treatment), so I am still kinda hazy about the statistics it gives.
Hi my scores at 15 years (if I have both radiotherapy and 5 years of hormone blockers), says that 16 out of 100 women will have died, but with 2 of those deaths linked to breast cancer and the other 14 due to other causes. Of the 84 women who would still be alive, one would have survived due to radiotherapy and one due to radiotherapy. 82 survive by surgery alone.
So the odds seem rather overwhelmingly that surgery alone is most influential on survival (with my profile as I was very lucky my cancer was found early). The other two treatments influence things very little relatively.
I so wish there was a predictor of recurrence as clearly some ( ? how many) of the suviving women will have had a recurrence.
No my survival rate is not less than 1%, thank god. I think @gabrielle1 has clarified the way to read it. My scores were based on Predict V2 which was the only one available at my diagnosis and I think is still the standard for the NHS as the NICE oncology group wanted more ratification of V3 results from comparison to overseas studies. These official bodies seem to move at a glacial pace.
So with surgery alone, at 5, 10 & 15 years, my chance of survival is 94%, 83% & 70%. With 1%, 3% & 4% respectively dying of breast cancer. Survival rates are going to be impacted by my age at diagnosis which was 66. They clearly expect us oldies to be bumped off by all manner of other things.
In V2 there is no separate analysis for radiotherapy.
With surgery and AI, after 5, years 10 & 15 years, my chances of survival are improved by an extra 0.4%, 0.9% and 1.2%. Breast cancer deaths would be 1%, 2% & 3% for my age and histology.
Obviously this changes dramatically in v3 but, as I say, that wasn’t available when my treatment plan was devised.
I did say that my scores were lower than Gabrielle which may have been because I had recently looked at V3. I’m not sure we are comparing apples with apples as we are using different versions. Either way both of our scores are much of a muchness. If the impact of AI is that low, why do I take it? As I said previously, SE haven’t impacted me to any great extent and I get concerned that my tumour was er+ 8/8. No version of Predict includes the Allred score. I’m less bothered about my survival per se than living with a recurrence, particularly a metastatic recurrence - something Predict does not tell you. If I had life-impacting SE, I’d almost certainly not take them, but I don’t.
I hope I’ve clarified that @scientistamafier and many apologies for not being clearer in the first place.
Treatment choices are very personal and a mix of quality of life, situations in life, and SEs experienced. I think try it, then if there are SE’s making your life difficult, its fair to consider the rest.
Having said that, I come from a place of deciding to stop tamoxifen due to the side-effects. Being a lone parent, I pay all the bills, and work would of been impossible, so that to me would of had huge ramifications. Despite that, at the time I stopped, having depression like a huge cloud hanging over me, and being aware that all my thought processes were slowed down, was making me feel like I’d lost myself - all gone after 2 days of stopping- were the big drivers. It took about 2 weeks for the night sweats to stop - I was waking up every 1-2 hours throughout the night. Daily feeling sick and dizzy, all gone ( I’m now fighting putting on weight, which unusually was less of a problem on tamoxifen due to nausea).
Feeling like me again is priceless to me, my risks are low (G1,st 1) and being her2 also, means that any escaped cells could just grow via that receptor making ER treatment less effective.
If it were to come back, I can as much blame the her2 side of things, and if I was then given AI’s or tamoxifen, as well as herceptin (got turned down for that)I’d give it a go. At the moment, a half treatment, that may do more harm than good in my life and has a real chance of not working on its own, was not worth the effects it had on my brain and body.