Recurrence risk for HER2 + with pCR?

Notverybrave, I also had neoadjuvant chemotherapy TCHP and had a pcr. I am on herceptin and perjeta for the remainder of the year. I am starting radiation treatments next week for 5 weeks.I don't believe I will have any scans or tumor marker tests either unless I have ongoing symptoms of something like dizziness,pain etc.I am not on Tamoxifen because I'm hormone negative so I can't help ya there but I see alot of hormone positive women receiving it on this site.I'm not a number or stat girl but I do know from what ive been told that having a pcr is very encouraging.I was very chemosensitive right off the bat nothing could be felt after my first treatment so that's enough for me to know that chemo kick the shit out of my tumor and then some so I don't need stats .I'm throwing everything at this crap that I can so if i did have a reoccurence god forbid. i wouldn't kick myself in the ass for not doing so.

I too was wondering about reoccurrence of HER2 positive cancer. (Me: er+ and HER2 +). What prevents the remaining normal HER2 cells from mutating and causing cancer? What are the chances that the other breast will develop cancer?

Hi NotVeryBrave - I just sent you a private message before I saw this post of yours, answering some of the questions I had already written you.
What is your ER+ percentage? Mine was 96%, and the surgeon I had a 2nd opinion with, said good - when she saw it, which confused me. I am led to believe that when your ER is really high and so responsive to estrogen, that when you take anti-hormone, they can essentially starve any cancer cells of what it uses to grow. The higher the percentage, the more influence it will have on those ER receptors. It's the same reason behind triple negative being hard to treat in that they can't starve it with anti-hormone, or use targeted therapy like herceptin. I had an anti-hormone consult with the Director of Pharmacology that went in the opposite way of your consult. He single handedly recommended that I not taking anti-hormone therapy because of SE, even though on UK Predict anti-hormone therapy increases my DFS by 8% - almost as much as the chemo/herceptin. That pissed me off because my preference is to be offered anything that will increase DFS, being that I'm in my 40's. Needless to say, I have completed 1 month of tamoxifen with absolutely no SE! Now there are women on this site, who have had bad SE on tamoxifen, and you won't know if it's going to happen to you until you try it. For me, it's such an easy thing to to take a pill for that much benefit. I'm taking all of these other more expensive multivitamins every day, and who even knows if there's any benefit from that. Also, I did not have neuropathy until after radiation because I was told to stop vitamins/antioxidants during radiation. Once I started back on B12 shots and B complex, almost all neuropathy went immediately away.

I have not seen a proper gynecologist in almost 20 years. I had not had a pap smear in over 3 years. I was expecting like you had mentioned to have a full exam to assess gynecological health by a specialist especially since my mom had uterine cancer at 57, the exact cancer that tamoxifen increases risk for. But my insurance only allowed for a pap smear by a nurse practitioner, the level of health practitioner I had been seeing this whole time and to whom this job has been down graded to at the primary care's office, which doesn't make me feel at all confident since my cancer went undiagnosed for 5 years - that should tell you something. I think the only thing my oncologist wanted before tamoxifen was a pap smear, and a yearly one while on tamoxifen. If your insurance allows, make an appt with an ob/gyn and get everything checked out. I don't think you'd even need an oncologist referral because reproductive health is preventative well being.

You said, "There is no plan for surveillance for me - no scans, no blood marker tests, etc. Nothing beyond exams. I'll see my BS at the 6 month mark. I currently see my MO every 6 weeks while on Herceptin. " I saw my oncologist yesterday for a 1 month checkup for tamoxifen, and she told me my next follow up is in 4 months - and I'm on herceptin. So, you're seeing you MO 3x more than I am. Although, I'm doing fine on hercpetin, so I don't really have any reason to see her, unless something happens. It seems as though surveillance is all over the board when it comes to tumors. While waiting for radiation, the 4 ladies on either side of my appointment, all of who were stage 1 with no chemo, had gotten CT/PETs. They all had different doctors from mine - doctors who had been practicing for a long time. Up until a few years ago, everyone with breast cancer no matter what stage was getting harsh chemo and CT/PET scans. In the past 2-3 years, the guidelines completely turned around, and now they're trying to avoid giving early breast cancer patients either of these. My doctor is only 34, so she was trained on these new guidelines. Supposedly, there were too many false positives on CT/PET for early stage, that they felt is wasn't worth doing. Although, I did meet someone who was node negative and went from stage 1 to 4 after her CT/PET 8 years ago. For me, I wanted a CT/PET for a baseline because I had my lump for 5 years before it was taken out, and I've been exhausted for years to th point of not being able to work - and I'm wondering if the cancer is all behind it Plus, I have a borderline phyllodes too, and that can mets. There are people even with fibroadenomas or fibrocystic breast lumps, who are getting more tests and more surgery than I am. I am as frustrated as you are. So car, my oncologist is only ordering yearly mammos - big whoop, can't see anything with my dense breasts on mammos.