Anyone out there with experience of treatment for a small HER2+tumour? I have just had a mastectomy after having DCIS diagnosed via mammogram and a small high grade tumour was found, although the lymph nodes were clear. Now my oncologist says it probably isn’t worth having chemo and herceptin, yet the recurrence rate is high - 21 per cent.I would be so grateful for any ideas. Thanks.
zinnia I think this is a hard decision to make. Her2+ breast cancer can be very aggressive. Hopefully yours has been caught quite early because from my experience of her2+ tumours they grow very rapidly. The downside of herceptin for primary bc is that you have to have it with chemo and from what I understand the chemos that work most effectively with herceptin are some of the toughies! I started with breast cancer in the days before herceptin & her2 were known about even. Mine all grew very fast and it kept coming back. So if you choose to take your oncs advice I suspect you are going to be quite anxious watching for its return! How carefully are they going to monitor you? You need to ask that. If you wanted to go for the chemo/herceptin will they agree to that, and if so would they agree to a minimal/reduced dose of chemo? I can only sympathise with you as you try to make this decision but keep asking questions here if it helps.
What a difficult position to be in. My tumour was bigger than yours at 12mm, so still quite small and no lymph nodes. But I had the works, WLE, chemo, rads, Herceptin, now on Aromasin. Even with such a small tumour, because it is HER2 positive, I would want to know why I wasn’t being offered chemo and Herceptin. Could you ask for a second opinion?
Zinnia, I am in exactly the same situation as you. I have two x 1mm tumours and 1 x 3mm tumour. I also had lots of High Grade DCIS as well as hormone positve and her2 positive invasive cancer.
I am under the Royal Marsden and I was told that it gave me a much better chance of surival having the chemo and herceptin. To be honest it was a no brainer for me. I am having a kinder chemo, vinorelbine. The side effects are not as bad, and you often keep your hair, which was a biggie for me.
This article from the National Cancer Institute, made me realise I didnt really have any other choice.
Please read and see what you think.
Feel free to inbox me and I would be happy to chat to you.
Zinnia, welcome to the forums, sorry to be welcoming you.
Another HER2+ person here, similar to Anne but I’m on Tamoxifen rather than Aromasin, being pre-menopausal when diagnosed.
From my perspective, I wanted to throw everything at it, and although I had initially been diagnosed as Grade 2 with HER2 status unknown, I was going to discuss the possibility of chemo with them, and then I was upgraded to Grade 3 and HER2+, so it was a done deal as far as I was concerned, so after WLE for a 13mm tumour and then re-excision I had 6 x FEC (look on Macmillan for a description of the various chemo regimes), went bald, finished chemo, started rads, Tamoxifen and Herceptin.
I would never say that chemo’s a walk in the park. Many of us on here have cried and struggled and vomited and crawled off to our beds and cried some more, but we’ve done it in order to give ourselves the best chance of survival we can have. I would certainly be asking for a full explanation why NOT to give you chemo + Herceptin, you do, after all, have a HER2+ Grade 3 tumour, you were just very lucky to find it so early. (Hurray! No nodes! Almost forgot to say that bit.)
As well as the support you are receiving here if you would like to talk this through with someone please do give the BCC helpline a call on 0808 800 6000. Here you can ask any questions you may have and share your concerns with a trained member of staff who will be able to offer you emotional support as well as practical information.
The lines are open Monday to Friday 9 to 5pm and Saturday 9 to 2pm.
Best wishes Sam, BCC Facilitator
Thanks for your comments and support. It is a difficult one, as I think the UK guidelines say not to offer chemo and Herceptin for tumours smaller than 5mm.
I was diagnosed last August with a 1.9mm tumour, Her2 positive and Oestregen positive with no node involvement. I was advised to have everything thrown at it, surgery, chemo, rads, herceptin, letrozole and I took it all as I had to go with their recommendations. I felt that the Herceptin, rightly or wrongly, was so important due to the Her 2 positive element and the agrressivenss of this type of tumour. I agree with someone else earlier saying that the treatment is not easy but do-able. In your case, I would certainly be asking for as much information as they can provide to enable you to make an informed choice about your treatment plan. Take care. J.
Hey up ladies I am Michelle 35 years old and on this BC journey too grrr!
I have had grade 3 DCIS then invasive grade 3 found at WLE and SLNB surgery, My DCIS is 4.2cm then the invasive is 1.8cm no lymph node involvement. I am HER2+ and ER+. I have had mx amost 4 weeks ago and waiting for onc appt to start chemo then Herceptin, hoping for a porta cath due to my Son and his behavioural difficulties so fingers crossed. My take on it all is I want to be flushed with as much anti cancer stuff as they prepared to give me, I feel v fortunate that these meds available to me and I am not triple neg and left with only chemo. I’m not saying thats not enough but I can have more which makes my future more secure I hope! Also HER2 more aggressive and faster growing so I really want to kick it int he butt… While this is how I feel I can understand why others may question the proces dependant on their own circumstances I am interested in opinions of others.
Good luck to you all xXxXx