Stage IIb, grade 2, triple positive - Now What?

PatriciaU · November 2016

Hi,

I found a lump on October 30th, in for appts and biopsy on the 2nd and was told it was ID on the 4th.

I went back on the 10th for an appt with the surgeon and found out I was ER/PR positive. HER2 went back for more testing. I had a lumpectomy on November 15th and had my follow-up today. The HER2 is positive as well.

I'm having another surgery - they need larger margins - this Friday and I see the oncologist next Tuesday. I was told that Chemo would most likely be recommended.

I'd like to hear from/chat with others that have had the same diagnosis.

What was recommended?
What did you decide to do?
What do you wish you had done differently?

Thanks so much for any input you can offer.
Patricia

ElaineTherese · November 2016

Hi Patricia!

How big was your lump? Any nodal involvement? Your treatment plan may depend on the size of your lump. If your lump is one centimeter or smaller, you may end up doing Taxol + Herceptin, then Herceptin alone for some time. If your lump is over one centimeter in size, you may end up doing Adriamycin + Cytoxan for four biweekly doses, then Taxol + Hercepin weekly for twelve weeks, and then Herceptin alone for a year. Or, you may end up doing Taxotere + Cytoxan + Herceptin for six doses, then Herceptin alone for a year. If your lump is over 2 centimeters in size, you can have Perjeta added to the mix.

As you can see in my signature, I did AC + THP and Herceptin for a year. During Herceptin alone, I did radiation for six weeks, and I'm now on hormonal therapy (Aromasin + Zoladex). I followed the recommended path, and seem to be doing OK.

Best wishes!

Moderators · November 2016

Hi Patricia-

We want to welcome you to our community here at BCO, although we're sorry for the circumstances that have brought you here. You are not alone, and this is a very supportive and informative community (as you can see from Elaine above!). We hope you find the support and advice you're looking for here!

The Mods

PatriciaU · December 2016

Thanks for the reply. My tumor was 3.1 cm - more than double what they expected based on mammogram and ultra sound images. They did take 1 lymph node and it came back positive but microscopic at .8mm so they're not taking more. I have a procedure tomorrow to get wider margins and then I meet with oncology on Tuesday.

I'm going in circles in my head about what to expect with chemo. What are the real odds it gives me and what should my body expect to go through? It's weird and may sound so vain to some but the thought of losing my hair really does make me cry. I've got journey ahead of me and keeping as many things as normal as possible is very important to me. I also really need to keep working. I can live with adjustments on disability but really, really don't want to.

I'd love to hear your experiences with chemo, medications, radiation and life while going through all of it.

Thanks so much,

Patricia

Denise-G · December 2016

There is a busy Triple Positive Group on these boards - it will be of help.

https://community.breastcancer.org/forum/80/topics/764183?page=995#post_4853682

Cjs47 · December 2016

Hi Patricia,

I'm sorry that you are going thru this, but understand it is something that you can get thru just fine. My tumor was 5 cm and I did several rounds of chemo and radiation. I did the year of herceptin and now am on tamoxifen for 10 years. I never once had nausea, fatigue, or low energy. I worked out everyday, ate well, and kept hydrated before, during, after treatment. I had my bad days where I cried a lot but then picked myself up and went on. Don't listen to other people trying to scare you with horror stories. Everyone is different. You can do this!!! When you need support ask for it. Everyone here will be happy to help. Hang in there and know that you are not alone! Hugs to you

ElaineTherese · December 2016

Hi Patricia!

Yes, the Triple Positive Board is awesome. Also, if you want to hear about others' chemo experiences, it helps to join a chemo board like Starting Chemo in December 2016 (if it exists already).

Most women hate to lose their hair. It's funny, but one of the only questions I asked at my first oncologist appointment was "Where can I get a wig?"! All I could think of was that I didn't plan to teach bald, and that I needed a wig to retain some of my dignity.

I did work through chemo and radiation (I teach at a university), but I did meet with my boss to reduce some of my responsibilities. I also worked at home a lot.

Chemo wasn't that bad for me, but there were women on my chemo board who had a hard time so you never know. I never had any nausea or vomiting, but Adriamycin and Cytoxin made me spacey. I was happy to move on to Taxol (even though it gave me diarrhea) because I felt mentally sharper while on it. Hope your surgery goes well, and that you have a productive meeting with your oncologist! ((Hugs))

PatriciaU · December 2016

Thank you so much for the replies. I'm coming to terms (with myself) about what I may have to face. I can't freak myself out about things that haven't happened yet.

I had the second surgery Friday and am at home feeling great. I'll go back to work tomorrow.

Once I meet with oncology I'm really dig in with the drug research and the second opinion. Maybe even a third opinion. I want to be sure I have every bit of information I can gather before I make my treatment decisions.

Stage IIb, grade 2, triple positive - Now What?

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