Hello there, I've found myself in a very confusing situation. Having had a lumpectomy and re-incision for IDC (Level 1, Grade 3) I am now in discussions regarding follow up treatment. Both my Oncotype (21) and K167 (20%) results are borderdline for chemo prior to radio and immunotherapy - in a way, it would be easier if both results had been more decisive so that I could just get on with it one way or the other! So, I am weighing up the pros and cons.....have any of you out there found yourselves in this predicament? There is no way to sugar coat the side effects of chemo but I can't decide whether the 8% improvement in the chance of the cancer not recurring is worth the risk?......I am in a real quandry...any advice would be very much appreciated. Thank you x
I think I was in a similar situation to you. Grade 3. No Lymph involvment and no spread. My tumor score was just over the limit for NOT needing chemo.. I also have another health condition which made the oncologist a bit 'cautious' about chemo, but it was all very patient centred and finally the decision was mine, supported by the oncologist, not to have chemo partly because there was a new drug on the horizon.. Anyway, I was prescribed anastrazole and zolandronic acid which I have tolderated well. At the time of making decision not to have chemo I was told there was a new drug about to be licensed for use in a more peventative way, but not a lot more info. I should have persisted and questioned more but I was still in a way processing the diagnosis and surgery and not in the best place to make difficult decisions. I just wanted to feel well again. The new drug turns out to be ribociclib which has just been licensed in the UK for use for primary breast cancer, to be taken for 3 years with similar side effects to chemo (not sure its on NHS yet). I am now being encouraged to take it. If I had known everything I know now (almost a year after my mastectomy) at the time, I would have had chemo - it would have been 12 months or so from treatment to full recovery. There was a slight risk, but at any sign of a problem they would have simply stopped chemo. I am now faced with 3 years of chemo like symptoms - hair loss, fatigue and a weakend immune system. This is just my experience and feelings at my age and life circumstances. What you decide has to be right for you, at your age, your family circumstances, lifestyle etc. etc. Just keep asking questions. Take care and I wish you every bit of good luck there is
I’d be guided by your oncologist. I was recommended 12 x weekly paclitaxel (chemotherapy) plus Trastuzumab every 3 weeks for a year and Zoledronic Acid every 6 months for 3 years. I was appalled by the thought of the chemotherapy, but i have to say it is nowhere near as awful as I thought it might be. Nothing is guaranteed when it comes to cancer, but I feel my treatment has given me the best chance of it not recurring. I was fortunate - I don’t have young children, and my husband is keen to support where he is able - so this few months haven’t been great but it will soon be done and hopefully this time will soon be a distant memory.
A cautionary tale. I had stage 2 grade 2 BC and was borderline for chemo (5% impact on OS). I skipped it, opting for radiotherapy and hormone treatment. 2 years later I was diagnosed with stage 4 lymph and liver metastases. Would chemo have made a difference? It’s anyone’s guess, a bit like all the statistics that fly around. Hard choices, you never really know if you’ve made the right ones. Do what you won’t regret. Make choices you can live with if it all goes pear shaped further down the line.
Jodie, It must be very difficult to face this and make a decision at a point where I suspect you just want to feel well again and get your life back. Be guided by the oncologist, and think very carefully about what the alternative might be in terms of treatment and outcome in the future, if you don't have the chemo now. Would it help to talk to a Mcmillan nurse or counsellor. Breast Cancer Now are also very helpful. Lots of luck and take care
Hello - I am in a similar situation, 2b, HER2 negative, hormone positive. Lymp nodes clear , My oncotype score 26 and chemo would reduce this by 15%. My risk is 16% of recurrence. I am being encouraged to have next steps which is radiotherapy, letrozole & robiciclib - honestly I am so scared … anxious
I am in the same situation. Grade 2, stage 2 Er+, PR+, Her2- (though my sentinels were not found and axillary sampling was done instead showing 2/6 nodes positive), BRCA2m positive. I had 2 tumors, 32 and 6 mm along with large area of DCIS. I had mastectomy with immediate reconstruction (all imaging modalities (mammo, US, PET-Ct ) measured my tumor muuuch smaller(10-14 mm) with no suspicious lymph nodes, so they thought we caught it very early without lymph node involvement). My Oncotype score is 16 for one of the tumors (the other is still pending). I am perimeopausal, and for this cathegory, Oncotype score 16-20 is considered borderline for chemotherapy. My oncologist said probably I have to decide if I want it or not. She has also ordered hormone tests and anti-Mullerian tests to see what menopausal status I am exactly in (I am 50, and have been in perimenopause for nearly 10 years!) since it can modify the interpretation of my Oncotype results. However, I am leaning toward chemotherapy. It would be nice not to have it, but I think I want to do everything to get rid of this monster (I opted for not having axillary clearance which I have already regreted, but now no time is left for that, since my treatment should start within 2 weeks).
It is a very tough decision, and its even tougher that WE have to make it....
Hi Gemmma,
I am sorry I hope you are doing fine. What kind of treatment do you receive?
Were you pre-, peri- or postmenopausal when you had the Oncotype?
Hi Anjoulie, as you can see from my previous post I am in a very similar situation. I have been really anxious and scared for weeks knowing I had to make the decision to take Ribciclub. Making these decisons when you just want to feel well again and get your life back is tough, but the possiblility of recurrance is the last thing you want, be guided by your doctors. I went onto the Breast Cancer Now forum - the link is below. I found people on there who had recently started Ribociclib for primary breast cancer and it was reassuring to hear their experiences. I now feel I want to give it a try. I also had a chat with a Macmillan support worker who was really helpful and directed me to the forum on Breast Cancer Now. Breast Cancer Now also have a "Someone Like Me" section. There's lots of help out there both practical and emotional
As Gemma says in her post "Do what you won’t regret. Make choices you can live with if it all goes pear shaped further down the line"
Wishing you lots of luck
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