anyone else ER-/PR- HER2+

hhuey

I had a similar diagnoses but they did not allow me to have a CT or bone scan because the tumor was small. I was shocked to find out that I would need chemotherapy for such a small tumor. You should prepare yourself for that reality. Depending on the size of the tumor and whether you are in the US they have a second chemo drug they like that is newer called perjeta. You are definitely want to ask and read for that. It impacts whether you have lumpectomy/mastectomy before or after chemo. It was recomended 6 doses of TCH( sometimes they add perjeta) chemo one does every 3 weeks and then Herceptin on intervals until next year.

feel free to pm me.

I'm ER-/PR- and HER2+. Before chemo, I had a Breast MRI, but no other scans. No genetic testing, I think because I'm ER-/PR-. I had neoadjuvant chemo (chemo before surgery) that included Perjeta because I'm HER2+ and my tumor was at least 2 cm. (Insurance won't cover neoadjuvant chemo with Perjeta unless the tumor is at least 2 cm.)

I had my SNB when I had my UMX in March. My node was negative and there were no active cancer cells found in what remained of the tumor. So I was declared 'cancer free'. No other scans/tests have been recommended at this time, other than my annual mammogram for my remaining breast.

Good luck to you!

I was also ER- & PR - and HER2+.

The day after my diagnosis I had an MRI, CT and bone scan and genetic testing (all negative).

I started neoadjuvant chemotherapy 2 weeks after that (6 rounds). I did not get Perjeta because my largest tumor was 1.7cm so it wasn't large enough (I had 4).

6 weeks after finishing chemo I had a right mastectomy w/ a SND (nodes were thankfully clear).

25 rounds of radiation.

There are good days and bad days.

When I was diagnosed I had a 2.5 year old and a 4 month old baby. I was terrified about being able to take care of my kids...it really wasn't as bad as I imagined.

Once you have your first chemo you will have an idea of the days you tend to be most tired (for me it was days 5 & 6) and then you can plan ahead and have help for those days. MOST days I was able to function just fine and take care of my kids...we were outside playing, doing errands, etc. It really does go by pretty fast.

I found the mastectomy and the radiation a breeze.

It is scary but the treatments available these days are really really good. You are going to be fine...believe it!

Yes, the hair thing can be difficult for the kids because then you actually LOOK sick.

My 4 year old handled it quite well...when I shaved my head I tried to spin it in a fun/funny way. "Look at mommy's new funny haircut!!". She loved it.

It was easy at 4...I'm sure 6 and 10 will be a little trickier. I found that if I talked about the situation in a positive, light way that it worked well for my daughter.

hi, I am also ER/PR negative and HER2 +. I had a lumpectomy (luckily no cancer in the lymph nodes) followed by chemo and Herceptin followed by radiation. I will be on Herceptin through next September. The chemo was pretty rough for me, unfortunately I had a rare serious side effect (only 1% of patients get it) that landed me in the hospital, and I had a lot of other side effects. Other people breeze through it so it's really hard to tell. Couldn't have made it through without the support of my hubby. (Luckily kids are grown and out of the house.)The HER 2 does make recurrence more likely, my doc said I have a 20-25% chance of recurrence.

But now I am finally feeling better, my hair is growing back in, it is short and curly and everyone loves it! So there will be light at the end of the tunnel.

Good luck!

I have IDC with HER2 + and ER-/PR- according to the biopsy but I have not had any treatment yet. Monday I will see both the surgeon and radiation oncologist. I saw the chemo oncologist last week. It's getting more real the closer it comes to these appointments. My Ki-67 was 38 and my doctor told me that this was small but very aggressive, "a mean one". I've known my oncologist for many years because he has also been my hematologist. I've learned a lot on this forum but it is the first time I've posted so I hope I'm doing it right. This is so new to me (just got the call on May 30). Had a plane ticket to fly out to my daughter's wedding the next day and the doctor suggested that I stay home and get this taken care of immediately instead. So that is where I am now. I know just enough about my pathology report to be able to understand what I've read on this site and I feel confident about talking to the doctors on Monday but I am nervous about the surgery and radiation. Has anyone here had the type of radiation that puts a tube and balloon in place of the tumor at the time of the lumpectomy, then you have radiated pellets put in the tube for a short period of time twice a day for five days and your radiation therapy is done? Thank you.

Thank you, Hockey7chick, for your encouraging words! We wish you continued luck with the rest of your treatment!

The Mods

KayLBea-

Thank you so much for chiming in and sharing such good advice! it's so helpful. We hope everything checks out ok with your lungs, you're in our thoughts!

The Mods

Hi HopefulAC-

We want to welcome you to BCO, and tell you that we're so sorry you find yourself here. It's a club no one wants to join, but hopefully it helps to know you are not alone! Have you read through our HER2+ forum? Lots of great info there, and members who can offer some insight: https://community.breastcancer.org/forum/80.

The Mods

I start my tchp treatment this Friday. Any advise from someone who has finished this treatment. I have been told it's a rough chemo on your body. I am 47 years old going into this heathy. I am lucky to live in a city hat has a amazing cancer hospital in town that I will be doing my treatments at.

Hi,

I'm just joining this forum and so glad to see others with this profile. I had double mastectomy for a DCIS mass found in my left breast on December 20th, and the pathology report came back with a small (0.7 cm) IDC mass as well. ER/PR -, Her2+. Lymph nodes came back clean. Clean margins. I was really hoping the DMX would be the end of it for me, but surgeon says because of the aggressiveness of this type of tumor, the oncologist will likely want to do chemo and Herceptin. I meet with the Oncologist tomorrow morning. I'm curious why some of you have had to also do radiation on top of everything else? I really don't want to do all that.

SNB = sentinel node biopsy

UMX = Unilateral mastectomy (one breast) A BMX = bilateral mastectomy (both breast)

Radiation is usually required with lumpectomies. Radiation is usually NOT required with mastectomies unless the tumor is too close to the chest wall or there is node involvement.

I had a mastectomy and did not require radiation because my SNB was clear and my tumor wasn't close to the chest wall.

I was diagnosed in December, and started a Taxol/Carboplatin/Herceptin/Perjeta regimen as I am HER2+. I have TC every week for 12 weeks, and every 3 weeks I also have the HP too.

So far after my first TCHP I have developed an itchy rash on my chest, face, and back of my neck. Ugh! I will see my oncologist for my round of TC this Friday and see what he thinks. Otherwise, just tired and a little upset tummy.

Did anyone else have a PET scan before starting chemo? I had a biopsy and Breast MRI. It was determined there is no node involvement and it was only in my left breast, but I can't help it worry still.

Hoping these next 11 weeks go fast! I am lucky to have a supportive fiancé and snuggly, sweet doggy