HER2+ should i have chemo?

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Hi everyone,
I am 32 and am HER2+ & ER+, had 12mm IDC, I had a lumpectomy in July and had no nodes involved. Chemo has always been a maybe from the start so I met with my oncologist who specialises in radiotherapy, he suggested I didn’t need chemo as everything looked good and it would be of very little benefit - 4% if I had chemo and heceptin. It was left I would have radiotherapy and tamoxifen.

However this has left me confused as everything I had read about HER2+ implies you need chemo. I want to be sure I am doing the right thing by not having it.

I spoke with the breast care nurse and she also seemed puzzled that I was told I don’t really need chemo and felt for my situation so she suggested I met with a medical oncologist to have another chat. To my surprise she managed to arrange it for later that day. I met with a Registra and a Doctor in the oncology department, this meeting was quite different to my first one and they seemed to be more concerned by my HER2 status and also mentioned my age, saying I have a longer period of a chance for it to return. They also said they had a chat before seeing me as I am borderline so I it was hard to know what to suggest but I came away thinking I now should have chemo but I can’t get out of my head why the doctors didn’t feel I would benefit from it in the first place. Right from the start Chemotherapy has always been a maybe, despite my HER2+. Surely if being HER2+ is that bad then I should have it no matter what (which is pretty much the impression I have seen) but why has it always been a maybe?

I hate the thought of having chemo especially when I feel fine, and as the doctor said they could be treating me when I have no cancer cells in left. I could have the chemo and still get cancer or I could not have chemo and still get it.

I feel like breast cancer is more risky than other cancers, HER2 is also higher risk so I should have chemo but then I think that the first doctor didn’t think there was much benefit to me having it. Having read all the side effects of chemo and herceptin I feel like I would be doing more harm. But then there is the what it’s. I just feel like it is a risk either way and I feel alone with knowing what to do. I don’t want to have to make such a big choice, I am.not a doctor, I want to be told. I just want to speak to people in my situation and to have as many facts as possible. Any advice would be greatly received!

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I have HER2 positive with a tiny cancer 3mm or as big as a peppercorn. No lymph node involvement and clear margins and they have me on the chemo and Herceptin.

 

They will not give you Herceptin without chemo because it is not licensed but honestly chemo is nothing to be afraid of. The anticipation is far worse than going through it. If you are worried about your hair you can cool cap which I am doing.

 

If I was as young as you I would be afraid of it coming back because it is very aggressive. I would ask for additional opinions because a few rounds of chemo now might make all the difference in the world to you. It is just 4 months most of us get 6 cycles every 3 weeks.

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Hi Sel84,

I was diagnosed with Grade 3 Breast Cancer in April. Upon being told of my diagnosis I burst into tears and said “I’m not having chemo”. I was told that I probably wouldn’t need it, just surgery and radiotherapy.

After lumpectomy and 3 nodes removed, pathology results showed ER negative but HER Positive, no lymph nodes involved and clear margins but they then started to talk about needing chemo due to being HER positive.

I was still reluctant but decided to meet with the oncologist and fully expected him to say chemo would only improved my chances of recurrance by around 4%. He used a “tool” that predicted my prognosis and the chance of recurrance was actually reduced by 20% by having chemo and herceptin. This took me by surprise and I felt I had no option but to give the chemo and herceptin a try. I opted for four TC chemos rather than the standard 6 FECT, this reduced the chance of recurrance to 18% but for the sake of 2% I opted for what I thought was the least harsh regime, not so sure about that though as it’s “T” right from the start.

I have had 3 TC chemo’s and 3 herceptin injections which I get into my thigh when I get my chemo.

I fully expected to be bed bound for the duration, unable to leave the house, cook for myself etc. and as I live alone was terrified of the thought of chemo. This has not been the case, yes, chemo is not pleasant and I have experienced some side effects but I have certainly not been bed bound or even housebound for the duration. I’m due my last chemo on Friday and can’t believe how quickly it has come around.

I had my dose reduced after first chemo due to SE’s which weren’t horrific and didn’t require me being admitted to hospital. I may have my dose reduced again for my last chemo due to one particular side effect, it may even be cancelled.

I have been told that in my case, herceptin is my “main weapon” against my cancer recurring.

I went into this with a “I’ll give it a bash” attitude and was willing to stop at any time if it became too much for me. Even if, and it is still an IF my last chemo is cancelled I will carry on with herceptin injections. Again, I’m having these with the same attitude, if I am unable to have all 18 injections then so be it.

The way I see it is, I’ll have had some or all of my chemo. I hope to have 18 herceptins but if I have to stop at 9 then I’ll be happy enough with that. Some treatment is better than none in my opinion.

I wasn’t forced to have chemo/herceptin but was strongly advised that it would be of benefit to me. I’m surprised that your stats were only 4% with chemo and herceptin.

Why not do what I did, take each chemo and herceptin as it comes, you can stop at any time. It’s your choice.

Good luck with your treatment whatever you decide.

Best Wishes

H.x