Treatment Plan - Triple Positive but no chemo/targeted therapy

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Hi

I had a mastectomy on 14 July following an intial diagnosis of around 50mm High grade DCIS with 2mm IDC. I was told that as this was early I would need either a therpeutic mammoplasty + radiation or mastectomy and no further treatment. However after going through my results with my BCN as I didn’t feel I had enough information I was told i was ER & PR positive. The following day on meeting with my surgeon (to discuss whether to go for mastectomy or mammoplasty) the HER2 results were in and that was also positive - so triple positive. She suggested I cancelled our upcoming holiday as it was likely I’ll be having chemo+herceptin.

My results appointment following surgery was on Wednesday 23rd. I was expecting the worst but it was good news - no lymph node involvement. There was another 2mm invasive area however I was told that I would not need radiotherapy, chemotherapy or targeted therapy - just 5 years of tamoxifen and was sent a way with a prescription for that.

I’m feeling a bit bewildered as I was expecting to have to have treatment. I really didn’t want to have to have chemo/herceptin as I was worried about time off work and the financial implications - however I’ve not been able to find any thing anwhere online where anyone has not had this treatment when her2+ I’m just wondering if this is normal or whether I should be concerned? I don’t have any follow up with an oncologist as there is no treatment to come so I’ve not even got a chance for discussion. I have had a go using Predict and if I am intepreting this correctly, it seems to be 1% or less benefit in having this treatment so wondering if this is why due to the likely side effects of chemo/targeted therapy.

I requested the pathology report and I received it this afternoon - just in case if helps this is the summary:

(Nottingham Prognostic Index 3.04)

SUMMARY:-
LEFT, MASTECTOMY - INVASIVE DUCTAL CARCINOMA

  • GRADE 2
  • TUMOUR SIZE 2mm & 2mm
  • VASCULAR INVASION NOT SEEN
  • LYMPH NODES NEGATIVE (0/2 LN)
    TNM STAGING - pT1 N0 Mx
    OESTROGEN STATUS - POSITIVE (QS=7/8)
    PROGESTERONE STATUS - POSITIVE (QS=8/8)
    HER-2 STATUS - POSITIVE

Sorry for the long post

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Welcome to the forum @snos12 . The nurses will reply soon but you might also want to post on the main forum for a bit of advice and support
The ladies on this thread may be able to share some relevant experiences ? HER2+ and need some buddies
Best wishes Jill

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Thank you Jill I will do.
Kind regards

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Hi Jill, not a BCN ( they will answer on Monday) but its interesting to hear from someone else who is Her2 positive and not been offered the expected treatment - we are in a rare category for different reasons. I was ER+5 and Her+3, negative for PR, so not the tripple, but my IDC part was 16mm, surrounded by 1cm DCIS.
I would say that the likely reason for your reduced treatment is because the IDC parts were fairly tiny as well as nodes being clear. In my case, although a lot bigger than yours, my grade came back at 1, which is very rare for Her 2.
It shows how nuanced plans are, usually her2’s have grown bigger when found, and are rarely grade 1. We fall outside that norm, hopefully in a good way. Doesn’t stop you wondering though if time will show that treatment would of been the better plan. I empathise with that feeling, you never know as they say Her2 is higher risk of a sooner recurrance.

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Hi,
I can totally relate to what you are saying. I see you have found my post on the ‘HER2pos and Need Buddies’ thread, so probably have an idea of my scenario; briefly though I was diagnosed as triple positive, 9mm IDC in 40mm high grade DCIS, stage 1, grade 2, no LVI and nodes clear. I had a mastectomy and I’m on Letrozole for 5 years. An assumption was made by the MDT that I would be HER2 negative, but their report stated even if it was positive I wouldn’t have chemo/herceptin as the benefit would not be significant enough to justify the detrimental effects of the treatment. I was very concerned by this at the time as struggled to find anyone in a similar position. However, the NICE guidelines say (or said at the time) that if an HER2+ IDC is less than 5mm they don’t even consider chemotherapy and therefore no Herceptin (they have to be taken together) and if the IDC is 5mm-10mm then it is up for discussion and everything is weighed up. I think @entropy is spot on regarding the fact that HER2pos is a fast growing tumour so it is quite unusual to have an early diagnosis before it has spread and also it is more often grade 3, so probably why we don’t hear of many people in a similar position. I have just got the all clear from my 4th annual mammogram so I’m starting to allow myself to believe the right treatment decision was made.

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I was 1c because of size, and did note that nice guidance said 1c and above for Herceptin, so it got me wondering, however, I was also a rare cribriform type which is usually slow growing, but is also mostly ER and PR +, and Her2 negativite. I’m an extremely rare outlier. I can choose to see it as lucky, but also, I know there is no data out there to follow, so how much of it is ‘winging it’ remains to be seen. Can a treatment path be planned without a precedent ? Sometimes its a lonely place to be in, other times I try not to think about it.

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Hi snos12

Thanks for posting. It’s understandable you feel bewildered about your treatment plan. It looks like you have had some helpful replies from @Jill1998, @entropy and @MoonAndWaves.

If someone is HER2 positive they would usually be offered chemotherapy and trastuzumab (sometimes with pertuzumab), however other factors are considered. The NICE guidelines say people with T1a/T1b HER2-positive invasive breast cancer can be considered for adjuvant (after surgery) trastuzumab taking into account any comorbidities (other health conditions), prognostic features, possible toxicity of chemotherapy and the person’s preferences.

Your results would have been discussed and treatment decisions agreed by the multi-disciplinary team. In view of the small area of invasive cancer and negative lymph nodes found in your case it may be that your team feel the benefits or treatment would be outweighed by the risk of the side effects. The Predict tool can be useful but it’s always important to go through these results with your treatment team. Perhaps you could contact your breast care nurse again in the first instance to talk all this through.

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Best wishes

Jane

Breast Care Nurse

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