I was diagnosed with invasive Ductal Carcinoma 8mm, (left breast) DCIS, ES+8 and HER2+ on 1st September and was booked for hook wire/wide local excision and sentinel node biopsy surgery for 13th September. This I have had and surgery went well. I did have to lose nipple as lump was to close but I’m fine about that.
All along my bcn has said I will need radiotherapy and hormone therapy but said it was doubtful I would need chemo as cancer was small. I have read everything I was given at diagnosis and everything I can find online and everywhere says if HER2+ then I should have chemo and herceptin. I have spoken to my bcn a couple of times and asked why I might not get it and all she said I might not need it and wait until results are back. Why wouldn’t I need it when everything says I do?
I spoke to her today about whether I would be seeing an oncologist when I get my results. My very good friend and next of kin will come to get results with me but can’t stay for many days and I wanted to see if the 2 could be done together. Nurse said I wouldn’t be seeing an oncologist as doubtful I would need chemo. I again said that everything I have read and from the books she gave me said HER2+ is treated with chemo and herceptin. She replied my cancer might be too small and wouldn’t warrant the treatment and you can overtreat some things. She did say she had told a Dr I was concerned before about not being given herceptin but didn’t say what they said.
A lovely nurse I spoke to on this groups helpline said it doesn’t matter what size the tumour is, it is aggressive and should have chemo and herceptin. Both breast cancer care and Macmillan information pages say HER2+ is treated with chemo and herceptin. Why then is my bcn saying otherwise.
Anyway I put the phone down this afternoon and just burst into tears and haven’t really stopped crying. I live on my own and now feel scared I won’t get right treatment. All being well my results are back next Friday and then have to go and see my bcn for results on the following Wednesday.
Please can anyone throw any light on this. I do suffer from Atrial Fibrillation but apart from that my heart is sound. Even my bcn said that wouldn’t be a problem with me having chemo and herceptin if I had it.
Thank you all for reading this and any help you can give. I am so grateful to have you all to help but sorry we have all had to have breast cancer to do so.
Hi Frances, It’s all a hell of a lot to get your head around in the weeks following diagnosis, and you are right to question anything you don’t feel happy with! You are correct that Chemo and Herceptin are pretty much a given with HER2 + cancer but I have seen a few ladies like yourself being told it’s unlikely due to the size of their tumours so your not alone, as to why you were told you wouldn’t see an Oncologist if you were not having Chemo I do not understand, I didn’t have Chemo but I saw my oncologist to discuss my radiotherapy so again question this and insist on seeing one!
Treatment is tailored to the individual and has to have more benefit than risk to warrant doing it but I don’t feel it’s your BCN place to give you this information, you need to see an oncologist and have a full explanation of what treatment they suggest Xx
So sorry you are going through all of this but you are at the early stage before the treatment plan is settled and it’s the absolute worst time as more or less everyone here will tell you. As the others have said, talk to your consultant when you next get to see him or her or ring up and make an appointment if you don’t have anything scheduled yet. You have some good research in your arsenal in the in the fact that you have spoken to the helpline here and got good advice. BCC is a reputable and well known charity and it’s not like you have just been random googling for your information and are making unreasonable requests.
As much as I love the NHS and am so grateful to live in this country, especially when I was going through BC, there are times when communication is flawed. I was certainly confused on several occasions in the early days. I am not sure you have been well advised but suspect that when your treatment plan is in place you will feel a lot better. There are often changes through the course of your treatment and you might well find that the plan alters when you go back for your full results.
I’m sure it will all come right for you in the end but it’s just horrid waiting isn’t it.
Hi Frances. I have much the same diagnosis as you. Grade 2 ER receptive and her2+. They took 23mm biopsy of calcifications and found invasive cancer with benign calcifications. I am having chemo with herceptin and permuzetab then herception injections for a year. When the chemo is finishef i am having a masectomy. I cant have a lumpectomy as i have already had radiotherapy last year. I have questioned my treatment but they have said definitely chemo due to her2 and the tumour being over 2cms. I think it is good that your BCN is off this week as now you can ring up and ask to see another BCN and go in to ask your questions. You may feel more reassired if you do this xxx
My tumour was 4mm and with no node involvement or vascular invasion and I had mastectomy and hormone therapy. It was also grade 3 and HER 2 positive so very agressive-this was 8 years ago!!
Thank you all so very much for all your thoughts, love and help. I just wanted to let you all know I had my results on Friday and I received the best possible results I could have hoped for. The the type, size and grade were exactly what the physical, mammo and ultrasound predicted, IDC, 8mm and grade 2, HER+3 and ES8/8. Neither has there been any invasion into the vascular, sentinel or lymphatic system. The lump had been removed with a good clear margin.
As my BCN was telling me I was crying, squealing and saying “how can I be so happy that I have breast cancer”. I can’t tell you all how relieved I am. I was so very very lucky finding it so early and small and have been so lucky with the results and no further surgery. Neither do I have to have chemo and herceptin. I’m just having Radiotherapy and HT.
I left the Macmillan unit feeling more normal and life back on track than I had done in weeks. Im now just on open access and yearly mammo for next 5 years. And not forgetting to check myself. My poor boobies, well boobie and 2/3rds won’t know what’s hit them.
Again, thank you all so very much for seeing me through the toughest and scariest few weeks of my life.
I am sticking around and hope I will be of help to someone as you all have.
Really pleased for you Frances. Did they say why you dont need chemo and Herceptin? My diagnosis is like yours Ductal, grade2, her2 +3 and ER +5/8 and they are insisting i need chemo, herceptin and permuzetab with mx at the end of treatment. I am wondering now do i really need it.
Hi Frances, the area where my cancer is is 28mm with no nodes involved. I have asked lots of queztions so i guess i just have to go with it. Delighted for you Frances xx