I wondered if any of you lovely ladies have been offered Herceptin without having to have chemo. I was diagnosed mid March with Grade 3 IDC and underwent a mastectomy on 1st April. I am both HR and HER2 positive so will be given Herceptin and Tamoxifen. The SNR all came back clear but by chance 2 lymph nodes were removed, one showed to be clear but the surrounding tissue showed early cancer cells and the other one is having further tests (although the Consultant is hopeful this will also be negative). He told me that because I would benefit from herceptin I would need chemo too as for primary diagnosis it would only be funded if chemo was given too and that I may end up being over treated just to get the Herceptin. I do have to discuss this with the Oncologist this week but I wondered if anyone else had found themself in this position or indeed had been given Herceptin without chemo. As much as I don’t want chemo I will have it if it’s thoguht to be benefical however I am struggling to think i have to have it when I really don’t need it. There is a chance radiotheraphy will be given too later on but this is yet to be decided (apparanetly I’m not a black and white case - par for the course with me!!) Any help would be really appreciated. Thanks Jules xx
I know of several ladies on here who had the same predicament. Their consultants got round it by them having one dose of chemo - and no more…but this then permitted them to have the herceptin. Maybe discuss this with your consultant?
All the best and I hope all goes well…it seems a long journey but it flies past
I was in similar position. Mx showed HER2 positive invasive cells but the SNB was clear. Surgeon thought no more treatment needed but oncologist disagreed - he did not like the way it was behaving (found largely by accident as did not show up on mammograms/u/s etc). He did say it would be reasonable not to have more treatment and could be overtreatment but he recommended chemo, herceptin and radiotherapy to reduce risk of recurrence. Like you I was told I had to have chemo to get herceptin - but ‘only’ 4 cycles (ie minimum amount). At the time I believe trials were going on to look at herceptin without chemo but I don’t think the results are out yet. As far as I can see Nice guidance has not changed anyway.
I decided to take the onc’s advice - he was keen on herceptin for me so I found it relatively easy to decide to put up with the chemo to get it - especially as he told me it is possible for cells to bypass the nodes and chemo should help to mop these up. I had more trouble deciding on the radiotherapy because although he recommended it onc was less bothered about this and benefits less clear cut. In the end I did do radiotherapy as well. Possibly the most helpful thing he said to me when we were discussing options was how would I feel if it came back as a distant metastasis in a couple of years and I had chosen not to do the chemo/herceptin etc - would I still feel that I had made the right decision and it was just one of those things or would I regret it and wish that I had gone for all the treatment options? I thought hard about this and decided I fell into the latter category so I went for the lot. Just keeping all my fingers crossed that it has worked!
I did also consider the possibility of long term side effects from chemo/radiotherapy but I decided that these were only longer term possibles whereas the HER 2 positive cells were a current fact and it is a more aggressive form of bc.
I hope you have a helpful discussion with the oncologist. It is tricky being in this position and I was grateful the onc took the time to talk it all through with me. Best wishes with making a decision.
Thank you all for your replies, I’m really grateful and will put the things you’ve highlighted to the oncologist on Thursday. Will let you know what the outcome is. Jules xx
That is a very good way of explaining it blueash. Thank you. I am to have 7 chemo. 3 FEC and 4 dotaxedol with herceptin and permuzetab. So could it be possible to have less chemo? I have grade 2 and her2 and er+ and will have masectomy after treatment x
Thanks Jay that is fantastic news. I starty PTH on wednesday and am feeling positive! I have coped ok with Fec. How were you with the docetaxol, herceptin and permuzetab? I am having 4 of them xc