Hi Simi7, thank you for your reply. I have spent all weekend googling about HER2+ whilst trying not to disappear down any rabbit holes! I recorded my results session with my consultant and keep playing back the bit where she said 'even if the HER is positive, the treatment plan won't change'. It is so confusing as it seems the standard practice is to have chemo and herceptin to help prevent recurrence, so without this I feel it will leave me more vulnerable. I have written down a lot of questions and hope I can get some answers from them soon. I was wondering if they explained to you the reasons why further treatment wasn't necessary in your case, if you don't mind me asking?
Hi Moon and waves I completely understand whether you are coming from and your fears. I think once you have your appt with the consultant you will feel a lot better and see what they recommend and what treatment if any is recommended. This is what I did and I also sought a second opinion and it was the same. I didn’t have chemotherapy and I am scared of reoccurrence as well but I can’t look back now. Make sure you ask your consultant all the questions and make a list so you don’t forget. All the best for the appt and take care x
I am currently in a very similar dilemma and have also scoured the internet to try and find people who haven't had chemo when diagnosed HER positive. My histology came back as a 9mm Grade 2 invasive tumour within an area of 4cm of DCIS. My nodes were clear and no vascular invasion. It was ER high. After having a core biopsy before surgery I was told I was HER negative. I had a single mastectomy as the other breast was clear. On my results day when I asked the consultant for confirmation of HER status, she said she hadn't got the results back yet but expected it to be negative. She said even if it was positive, my treatment plan would stay the same, which is Letrazole and no chemo or radiotherapy. I didn't think much of this at the time as was just so relieved about my results. This was about a month ago so decided to ring the BCN yesterday to confirm HER negativity only to be told it had come back positive. The BCN is arranging for me to meet the consultant to discuss this, but I'm feeling very upset. I just keep reading the standard treatment is chemo and herceptin and even the BCN said it was the usual route. I wonder if I hadn't phoned whether I would even have found out it was positive. I noticed that 9mm is bigger than the 5mm cut off that was mentioned. I thought I was just getting to grips with things, but now feel it's all unravelling again. I would appreciate any information you may have that would make this sit better with me as I am very scared of recurrence. Many thanks.
So good to hear from you and thank you so much for replying. It’s so difficult to find someone with similar circumstances and I am just so upset as every time I see her2 positive chemo is the standard treatment so it’s such a relief to know that someone else didn’t have chemotherapy for her2 positive. I’ve been searching and searching online non stop!
i don’t have the estrogen element but it’s so good to know you are 11 years clear .
my appt is next Monday and I will be asking all the questions then. At the moment all I could think was why do they want to under treat me and I have gone private so thought this could be the reason and thought Nhs may be different.
Your message has definitely made me feel better to finally find someone who hasn’t had chemo for her2 positive so thank you so much! I really appreciate it xx
I had a very similar diagnosis 11 years ago - dcis right breast 20mm plus 4mm invasive ductal her2pos grade 3 and slight oestrogen positivity. I had mastectomy as small breasted and hormone therapy tamoxifen and then anastrozole. Two years after diagnosis I had a long discussion about my fears that I had been undertreated but was reassured that treatment was standard if tumour was under 5mm with no lymph node involvement or vascular permeation. It took a while to get my head round it but I'm still here and cancer free as far as I know. Don't be afraid to ask the onc as many questions as you want and need.
Let me know how you get on
The pathology from my mastectomy has revealed DCIS again and an invasive 4mm cancer which is her positive and hormone negative. I’ve had a mastectomy and the surgeon and the team are not recommending chemotherapy and herceptin. I’m due to meet the oncologist still but I do believe the surgeon has spoken to her as well. I just wanted to know if anyone has experienced something similar with a small invasive element and not had any further treatment apart from surgery. I’m just worried it’s not being treated properly .
would love to hear from anyone similar.