TRIPLE POSITIVE GROUP

Hi Ladies I find out I had BC in Nov 7 2016 dcis I was 41 and had a bilateral mastectomy Dec 27, 2016 the final report came back was stage1A ER 30% PR 15% her2 positive. Ive seen 2 medical oncologist. I'm so confused of what to do!! They said my out come is good either way. My opinion with the first was tamoxifen, tamoxifen and herceptin, taxol + herceptin +tamoxifen or remove ovaries. One of my oncologist think chemo is overkill for me and other one is ify because I have IBS and had C diff being on antibiotics for two weeks after my surgery. I see some ladies like me have had everything, some done just the pill or just herceptin only and some no treatment just the surgery. I know I'm in a gray area. Love to know your guyses experience and decision? Thank you

Robin - what was the size of your IDC? Mine was 5mm, which is just below the point at which (at the time) chemo and herceptin were commonly done - 6mm. I'm not sure if that has changed. It was a tough decision for me, but in the end I decided to do chemo and herceptin. I did 12 weekly taxol, and my decision was made easier when I learned that I could save my hair using cold caps. I think I would have done herceptin only if I could, but my MO would not authorize that. Again, that may have changed since 2012. I don't regret doing the taxol and herceptin - it wasn't bad at all, and after reading more about HER2 + I was glad to have done the chemo. I was 29% ER+, PR-, and strongly HER2 +. My MO told me that tamoxifen (and presumably aromatase inhibitors too) is not as effective on weaker ER and PR tumors like mine. Maybe there's more research on that topic available now - it seems like something that should be investigated. I ended up taking tamoxifen for only about a year; my MO told me that for my particular tumor the herceptin was the important thing. Good luck with your decision - I well remember all the anxiety as I was going through that process.

Robin, my MO told me that normally a DCIS biopsy does not typically get tested for HER2 which really confused me; however, my DCIS was found secondarily on an MRI and later confirmed by a second biopsy. Since the original tumour was +++ HER2, I was being slated for Herceptin anyway. Everything I have read about HER2 has scared me greatly. I only want to do this once and will suffer through anything if it prevents metastatic disease later. Your situation is clearly been addressed much earlier. I hope you get more feedback or research tips from some other participants here. I have found this board to be very helpful, especially from those women who are further along in their recovery but have kept up with current protocol on all facets of HER2 positive BC. I hope you find peace and enough clarity to make a decision you are comfortable with. All the best

I was very scared as I never had major surgery before but wow it was not bad at all. I never had to take any pain meds because I wasn't in any pain just sore I only took tylenol for 3 to 4 days. I healed very nicely never had any problems. The drains was very easy to take care of and when my plastic surgeon took the drains out never felt it. I wish you well and God bless

Robin - I am on a clinical trial doing Herceptin and Perjeta, no chemo. I'm at the 6 month point, cleared for surgery, then 6 more months HP. I had 2 tumors, one >2cm and other .5cm. Both are no longer visible on scans. Other ladies on trial seeing similar results. I feel the HP is a good thing, side effects minimal so far. I completely agree with Suburbs; this HER2 triple is scary and I only want to do this once as recurrence does not sound good. I am finding the experience and information shared in this group has been extremely helpful. Keep asking questions until you're comfortable with your decision! I wish you the bes

Hi cjs9473 - my surgeon told me the implants could go in right away, one surgery. That gave me a sense of relief. I wish you the best

Kmjb - I really like your positive attitude! Sounds like you are off to a good start and staying strong. I believe positivity, faith and forward thinking is the key to complete recovery. And information! The ladies here and all the shared experiences has been very helpful for me. I wish you the best

kattis894 - I'm so sorry you're having a difficult time. This cancer business is scary and fear is always waiting in the wings. I started meditating to clear my mind and alleviate stress. You want to minimize stress as that gets your hormones churning. I use an app called "Calm" and I find it very helpful. The app is free or you can upgrade for additional sessions. I also find exercising to be a good distraction plus it helps with the pain I'm having from taking Arimidix. I limit my "cancer" reading to 30 minutes a day otherwise I get a headache. I'm sending you a hug and wish you the bes

If you look at people with recurrences most have had lumpectomy only. I did double mastectomy last May for my piece of mind. I only had ca in right breast. I had choice of lumpectomy vs mastectomy. You have to do what's best for your piece of mind. You can get new boobs but cannot get a new you. Jmo.

Debiann,

I did Cipro for a UTI. It was prescribed by my MO, shortly after I had started my AI (and while still on Herceptin only). It did not have any impact on me, neuropathy-wise. I had developed mild neuropathy while on Taxol, and to this day, my fingertips are still a bit clumsy.

I didn't really suffer the SEs from Cipro. But, it did bring me UTI relief! Best wishes.

debiann - did they culture the urine sample to determine which antibiotic is needed for the strain of bacteria present? Most of the UTI I have had have been treated with Batrim successfully - which is a pretty side effect free drug other than some people are allergic to it, but a couple have needed a more specific antibiotic.

Hey ladies. So yesterday I had my second round of chemo. This time they changed my regimen up. As I said before and I'm now on Perjeta, Herceptin, and Taxol. Along with all of the fabulous pre meds. I know it usually doesn't hit till day 2 or 3 for me after chemo, but as of right now I can happily report a mild tummy ache and fatigue and that's it. It's not like my first round where my mouth got burned and was so sick. Feeling like my prayers to God to help this go smoother this time around have been answered. Fingers crossed it stays this way

Beautifully,

I did the Taxol/Herceptin/Perjeta combo, too, and it was bearable. It did give me mild diarrhea, but Imodium took care of that. I also was pretty tired by week 12. But, I didn't feel as spacey or "out of it" as I did on my first combo (Adriamycin and Cytoxin). Hope you continue to feel pretty good!

Beautifullybroken. That's the same as me. Are you every 3 weeks with that, and weekly Taxol?

Elizabeth7, i seem to feel more sore when I walk, I do stretches and some very light exercises. And only til my body feels tired. I don't push it.

My biggest problem is blurry vision and breaking out with pimples on my face.( talk about feeling like a teen again)

Beautifully- glad to hear round 2 was more bearable. Prayers and hugs to you. Hang in there!