Hi there, I was hoping to get some advice or thoughts from anyone who has been in a similar situation. Last week my surgery team referred me to oncology and were very ‘pro chemo’ I left the appointment feeling that chemotherapy was a given. Today at the oncology appointment I got the impression they don’t think chemo is the best choice but have left the decision up to me. They were saying benefit is minimal etc
ER+ her2 neg multi focal with 1 node macro metastasis. Grade 1. Smx and axillary clearance this year.
Predict is adding about 3% over ten years. NPI score 3.7. I’m 41.
I feel sick with the responsibility of this decision. I’m very good at doing as I’m told and not so good at decision making!
Any advice or thoughts would be so appreciated. Thank you.
What are the possible side effects?
What are they doing to mitigate side effects?
How long is the course?
Second opinion?
Is there another option such as hormone medication?
I’m already on tamoxifen and it’s suggested for ten years. That is also only 3% survival improvement on predict.
They just mentioned the usual chemo side effects and I’d only need 4 cycles.
Yes it almost doesn’t seem fair to have to be the one making these decisions - I feel for you. It’s interesting that the two teams don’t seem to be on the same page so perhaps you could contact your BCN and tell them that you’re a bit confused by the lack of consensus and ask for them to discuss your case together at a multi- disciplinary team meeting or similar and come up with a recommendation or at least some clarification which might help you decide . I haven’t had chemo myself so my knowledge is limited but I think the threshold for definite recommendation is around 5% - a couple of members of my support group have mentioned this ( " of course I had to be one of the ones that was just over 5%" ) though it varies due to age and general health .You could also ring the Nurses on the helpline here as I’m sure they would be able to give you some clarification and a better idea of how to proceed . Wishing you all the best. Xx
Not at all helpful that you have conflicting opinions from the experts.
My recommendation would be:
Do as much research as you can, really put the time in and evaluate it carefully
Explain to your oncologist that although you appreciate them leaving the decision to you, you really need to know what their recommendation is based upon
I am presuming that as a relatively young woman they want to go for a total cure at an early stage. I was Stage 3 and chose chemo, even though I am a lot older than you. Together with radiotherapy it zapped the lot so I gritted my teeth and got it over with. Where I drew the line was the drugs like letrozole that you are meant to take for ten years or more. For me the side effects were so life changing, I gave them up, glad that I had stuck with the chemo. Chemo is horrid but once its done you recover reasonably quickly and are able to lead a full life
Thank you for sharing.
My family and friends want me to go for it, and say it’s worth it for peace of mind, but I feel a bit guilty taking resources. This is my third cancer in four years - others were very early and not breast but rare for my age. So I feel as though historically I always fall into the small percentage of bad luck!
I’ll hopefully hear back from BCN today so can ask her.
Thank you so much.
Hi, I was diagnosed 2.5 years ago c had mastectomy and 15 of 20 positive lymph nodes. I did have 5 months of chemo, don’t think it was much of an option for me at 3c.
They gave me the red devil cocktail. I was fairly lucky that not much sickness, just no appetite and lost 50 lbs, very tired and towards the end ended up with neuropathy. The 5 months went by fairly quick. I wanted to do everything I could and be as aggressive as possible, had 4 weeks of radiation, then letrozole and verzenio coming up on 2 yrs at the end of year. It is all scary, but looking back tolerable enough for me, still tired and some joint pain.
Good luck with decision, I hope you get more from BCN. In hind site, I was originally told I had a small tumor and could have a lumpectomy, once in there it was 6 cm and the lymph nodes impacted, wish I had had the mastectomy to start and saved two months waiting for another surgery. They only know what they know, for me I wish I had more info at the time as well and just been aggressive from the beginning. Hope some of it helps, good luck and best wishes
Hi
I’ve got the same dilemma but my circumstances are different. For one thing, I’m 75. I had a single mastectomy, Full clearance and Wide Local Excision 3 wks ago after a positive biopsy on a lump that was removed 2 years ago was missed and no action taken (even after I chased the result). When they biopsied the lymph nodes this time, 22 out of 23 were positive.
I’d had a lumpectomy in 2010 with RadioT and this is a recurrence.
My breast surgeon seemed to assume I’d have chemo but the oncologist (this week) was a very balanced 50/50. She said endocrine therapy ie hormone treatment (Letrozole) could be effective at controlling the spread, without the side effects of chemo. She said something about a 10% improvement but I didn’t understand what that was even after I queried it. After reading your post I assume it’s a reference to the PREDICT model, I’ve been looking at that this evening but haven’t actually tried to use it yet. So thanks for that.
For what it’s worth, I’ve been weighing up a (possible) improvement in life expectancy against the considerable challenge of what would be 6 months chemo plus however long it takes to recover afterwards - maybe another 6 months. I have small grandchildren I probably wouldn’t be able to see or interact with during that time, and an elderly husband whose life would also be pretty grim. My immune system isn’t great to start with so the chances are I’d get sick, and I need a new hip, which can’t be done while you’re on chemo. At the outset I was pretty much geared up for chemo but now I’m moving away from it - OK so it’s Jam Today, but my tomorrows are more limited than yours anyway. I also had a useful chat with a BC nurse on the BC Now Helpline.
I wish you all the very best - it’s not easy.
That sounds really tough, I wish you all the best with your decision and treatment. It is really difficult to know what is best.
I decided to go for it, more for my family, I start next week .
Hi i have recently gone through being diagnosed following normal screening, left breast removed and my oncologist strongly recommended chemo because mine is stage 3 invasive ductal oestrogen receptor positive.
Personally i would listen to the oncologist rather than the surgical team.
I’m late to this topic because I searched for topics similar to this. I’m very curious to know what you chose and what your reasons were, either way, if you’re prepared to share?
I’m 51, ER+, PR+, HER2-neg, 20mm multi foci IDC, DCIS High Grade 7cm, Right Mastectomy and full clearance - 1/18 nodes positive. Diep reconstruction. Predict is 2.8.
My team have requested a further report, Prosigna, and I’m awaiting results.
Hi, I decided to go ahead with chemo. My family wanted me to and I thought how would I feel if I hadn’t attacked it with everything. I’ve had a couple of other cancers in the past and I didn’t want to push my luck any more than necessary.
Good luck with your decision making and whatever path you choose.
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