HER2 Positive Breast Cancer diagnosis during Covid -19

Hi All

I was initially diagnosed with DCIS and had a mastectomy but no reconstruction due to the corona virus.  Mastectomy was originally cancelled aswell but happened about 4 weeks later. Told all along I didn't have cancer and once mastectomy is done I wouldn't need further treatment as lymph nodes were clear. However, my pathology report came back saying two small elements (11mm & 16mm) had become invasive at grade 2&3, and had tested HER2 positive so I now need chemo and Herceptin injections but I was also told the cancer had been removed  so I was completely confused and didn't initially understand the pathology report. Due to virus I was told this via the telephone just before the bank holiday weekend and I was left all weekend without a full explanation as to why this treatment was need. I finally managed to get hold of a breast nurse some days later who used the phrase 'well its the HER2 positive thats the game changer for you' not really much help or explanation there! I was absolutely shocked to not only get this diagnosis after being told everything was fine but also for the way it was given, I spent the following week in termoil wandering what HER2 positive was, why I would need chemo if it had all been removed and what the prognosis would be for me.  Needless to say I've done a lot of my own research now and am a little more informed. After finally speaking to my oncologist two weeks later (face to face - but wearing a PPE mask)  I understand this is a preventative treatment as the lymph nodes were clear and the invasive element has indeed been removed. I just wondered what others experience and prognosis was with a HER2 positive, lymph node clear diagnosis.  
 

 

 

  • Hi Daphne just saw your post and it sounds really similar to mine. I had a DCIS recurrence and they found a 4 mm invasive part too which is her positive . I had a mastectomy. They are saying that chemotherapy and herceptin is not needed due to the size of it but I am really worried that it is being under treated. Do you know what size it has to be to then be offered chemotherapy and herceptin? 

  • [@Sim13]‍ hi lovely, can you ask for second opinion about your fiuture treatment, you Her2 positive and this is only reason you need tp have chemo and herceptin. I have DCIS and IDC and mastectomy, her2 positive and only because her2+ i just about to have chemo plus herceptin. Good luck with your treatment .x

  • Hi Anna that's what I think I am going to do. I still have to see the oncologist and will see what she explains. Then will get a second opinion. Can I ask Anna how big your IDC is? 

  • @Sim13 hi lovely ,after MRI was 7mm, after surgery pathology results came 10 mm. When DCI its small they doing surgery first then other treatment. I still thinking that you may misunderstand something, HER2 positive requires chemo . But like yoi said you will hve appointment and please ask millions questions this is your time to find out . X

  • Also does anyone know whether you can have herceptin on its own without chemotherapy? 

  • Thanks Anna yes I will do for sure. It's just so much to take in and I am really not good at making decisions and I think it may be something along the lines of showing me all the evidence the risks graphs etc and then leaving it for me to decide! The surgeon has discussed my case with the oncologist and the mdt and the surgeon has said that any further treatment is not recommended and the oncologist will show me graphs etc ! So confusing anyway I will see what she says when I see her. Thank you x

  • [@Sim13]‍ lovely , to be honest this is not one person desission they do have weekly meetings with all kind of specialists. You will get letters with all explanations as i know myself when i in hospital I missed some info and lucky my husband was with me so he remembered this or that. Remember everyones cases very different and breast cancer it's different for eveyone so whatever they do its not in our hands. My surgeon did not asked me what i want hestrongy recommended this or that. Please update me what's happened with you next . Iam going on Monday to insert picc line , another headache for me. Have a lovely weekend xx

  • Sure I will do Anna I have my questions ready so let's see what she says! Thank you so much and hope everything goes well with your picc line. Have a good weekend too x

  • Hi Whitmic4 

    howbare you doing now and did you have chemo and herceptin? I am in a similar situation with DCIS and 4 mm of invasive which is her2 positive but not hormone positive. Have an appt with the oncology dr on Monday but I do believe they are not recommending any further treatment.

  • [@Sim13]‍ hi it was long time i did not posted anything.Iam just about to finich my 12 weeks of Paclitaxel ( last one left ), i still have 50% of my hair as i used cold cap and it helped me.During chemotherapy I developed red breast symptoms and at the moment taking antibiotics but still ok with chemo. Chemo it is tough no matter how strong iam and iam still working as part time . How is your treatment at the moment ? Also i do injections every three weeks (Trastuzumab) for one year. Just hoping to finish with chemotherapy... take care of yourself and enjoy beautiful sunny days xx