HER2-positive not taking medication post mastectomy

Options
abuela32
abuela32 Member Posts: 2
edited April 2015 in HER2+ (Positive) Breast Cancer


I was diagnosed with breast cancer in my right breast in July 2014. The tumor was grade 3 HER 2 positive. HR both negative. I chose to have a mastectomy just leaving the skin and no nipple with an implant put in at the same time. They got all the tumour out which was 8.5cm x 5cm. It was in situ but just! My lymph nodes were ok. I am basically being checked every couple of months as my doctors decided not to give me herceptin or anything. They said it was very likely that it will return as I first showed signs of a problem in my left breast with microcalcification. They were checking that breast for 6 years when the problems started in the right one. I have to see my plastic surgeon and oncologist in April and I am considering asking for a mastectomy on the left breast because I am worried about that one forming a tumour....thoughts? my mother died of the same breast cáncer 7 years ago.

· Share on FacebookShare on Twitter

Comments

  • formydaughter
    formydaughter Member Posts: 213
    edited February 2015

    Abuela,

    I am sorry that you are going through this and scared. It is surprising that your doctors are not giving you Herceptin. Particularly if they are at the same time telling you that cancer will recur. It doesn't make sense. Herceptin is usually the treatment for HER2 cancer, and having that targeted therapy invented significantly raises survival rates for HER2+ ladies. It is used for Stage 1-4 cases, including those without lymphnode involvement. If you are ER- and PR -, Herceptin would be your only targeted therapy. It is delivered with chemo and can be harsh on your heart. Perhaps you have another health condition making Herceptin/chemo not advisable? Did your doctors give you a reason for not doing Herceptin?

    Bottom line - I would seek a second opinion from a different oncologist.

    As for a prophylactic mastectomy on the other breast, that's a personal choice for sure. I elected to do it for peace of mind. I was told that it was likely that I would developa second cancer in the other one, so I decided that I'd take it off. No regrets.

    · Share on FacebookShare on Twitter
  • ruthbru
    ruthbru Member Posts: 57,235
    edited February 2015

    Changing my post after hearing from a friend with lots more knowledge than me. If your cancer was "in situ",  it's DCIS.  Herceptin is not approved for DCIS and is not given for DCIS. An MX only is appropriate for a DCIS diagnosis. So, your doctor is giving you the correct advice for your situation.

    · Share on FacebookShare on Twitter
  • formydaughter
    formydaughter Member Posts: 213
    edited February 2015

    I hadnt undestood the in situ part, thank you for clarifying Ruth - I had been worrying about our friend Abuela and now feel better.

    · Share on FacebookShare on Twitter
  • sixtysweeper63
    sixtysweeper63 Member Posts: 22
    edited April 2015

    I am also in the same similar circumstance as yourself, ER/PR neg HER2 pos , DCIS still intact but large only on left side, but had bilateral mx 11/11/14., with reconstruction. My oncologist has me on no further treatment. I am having surgery 4/16/15 to have lft expander put back in due to infection 12/22/14. Only bump in road so far... tested BRACA1 & 2 neg. Have u had any genetic testing? just worry a bit as some family has passed quick cancer deaths - pancreatic, stomach, lung.  

    · Share on FacebookShare on Twitter
  • Tomboy
    Tomboy Member Posts: 3,945
    edited April 2015

    I wish I had what you guys had!

    · Share on FacebookShare on Twitter
  • windingshores
    windingshores Member Posts: 704
    edited April 2015

    I have been told that DCIS is often HER2+ even when the IDC tumor that is attached to it is negative.

    · Share on FacebookShare on Twitter

Categories