My biopsy tested positive for ER+ do I had lumpectomy and 3 sentinel lymph nodes removed. Went for my 2 week post surgery check up and was told it was a 10mm HER2+ with clear lymph nodes. Breast surgeon said I would need chemo and herceptin and referred me to oncology. I had my appt today and was shown a predict chart which showed chemo wouldn’t make much difference. So my option is leterazole and radiotherapy. Now I’m so stressed and don’t know what to do. Oncologist said it’s my decision, but to take into account the chart figures. Is anyone else in this position please ?
Hi @ahmamma welcome to the forum.
I am HER2+ and have had chemo and Herceptin as Predict showed it was the best option for me as I was bi lateral with a primary tumour in each boob. I took everything that as offered that could stop it coming back.
I have read several posts about people saying their oncologist gave them the choice and they like you, weren’t sure what to do. I wasn’t given a choice, I was told this is the best treatment for your diagnosis. It is so hard when they say, well you can have it but it’s your choice.
There is a thread with lots of other HER2+ people some have not had chemo, some had chemo and Herceptin, some chemo and Phesgo. Some had 12 cycles of Herceptin/phesgo others have had 6 cycles. So it’s definitely not one size fits all.
Here’s the link.
https Helpline: 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). Speak to our trained helpline team. No questions are too big or too small://forum.breastcancernow.org/t/her2-and-need-some-buddies/115568/1135
Maybe you could also post on here
You could also ring the BCN nurses and talk through your situation and see what they say. They will have spoken to hundreds of people in a similar situation.
Helpline: 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). Speak to our trained helpline team. No questions are too big or too small
I wish you well in your decision.
Thank you for taking the time to reply. I couldn’t see anyone on here who had no chemo for HER2. I will speak to the breast care nurses on Monday. Typical, I will be fretting about it all weekend !
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I have cross posted your thread on the HER2+ buddies thread to see if there is a response.
Thank you, that’s so kind of you
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Sending you hugs, keep your chin upxx
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Hi ahmamma,
My breast cancer was practically identical to yours, except that my tumour was 11mm and yours was 10mm. I remember being told by the oncologist that 10mm was the cut off point for needing chemotherapy, and he was quite firm about me getting it when I queried needing chemo. I ended up having lumpectomy, chemo, herceptin and Anastrozole. This was 8 years ago and I’m glad that I had the full treatment as the fear if recurrence is very real and knowing that I did everything I could has helped.
Asking you to make a decision like this is very hard, I do feel for you. Let us know how you get on.
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Thank you for your reply.
Hi @ahmamma,
Its a minefield who has chemo and who doesnt and I suspect its more nuanced than size as I had a her2 +++, ER5+ tumour removed in May that was 16mm with high and intermediate grade DCIS. SLNB clear. They said no chemo and didnt even want to onco test it for risk. A tad concerned that only had radio. Ive stopped taking tamoxifen (premenopausal) after 3 months due to side effects and low improvement predict score. The way I see it, is if cells have escaped, they would grow via the her2 route as that hasn’t been treated so tamoxifen would be of limited benefit.
Nice guidelines say T1c that I had should be given herceptin and chemo. However, what I think has occurred is that, because its a rare cribriform type tumour that is known to usually be slow growing with good outcome and minimal spread, they opted not for chemo.
It is the unknown really though as only 0.3% of tumours are cribriform, and out of those 90%+ are Her2 -ve, unlike mine. Guess I just have to be vigilant and cross my fingers really.
I’ve completed my radiotherapy and queried why only 5 days, but breast care nurse said many patients only get 5 days. I will spend the next few years worrying about if it has spread. The whole episode has made me feel anxious and ill. It seems to depend where you live as to whether you get chemo. All my consultant kept say was to look at the figures on predict.
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Hi @ahmamma i only had 5 days but was told they amp up the dose if done over 5 days than 15 days. Trials have shown that 5 days at higher dose is as good as 15 days. Not all centres do the 5 days, it might be to do with the equipment or they just prefer the 15 days dosage.
I’m sorry you are worried. You can always phone the BCN nurse to chat it through * Helpline: 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). Speak to our trained helpline team. No questions are too big or too small.
Thank you.
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Hi,
5 days at a higher dose is the new regime in a lot of places and been shown to be just as effective as 15 days at a lower dose, so don’t worry about it.
I had 19 days of it, but that was because I had 4 days of boosters, and they dont boost on top of the already higher 5 day dose, so revert back to the old way - probably amounts to too much in a short space of time otherwise.
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