Just diagnosed with HER2+ positive Breast Cancer

Hi Cricutcat, sorry you had to join this club, but welcome. About chemo, having a mastectomy has nothing to do with that. Being Her+ is another matter. My understanding is that those with this dx need chemo and Herceptin. Hopefully you will get more information when you see the oncologist. Best wishes!

Hi!

I was also diagnosed with HER2+ cancer. As you can see from my signature, I did indeed do chemo and Herceptin (and Perjeta). I don't think you'll find too many HER2+ breast cancer patients on this board who didn't at least try chemo (a few may have had to stop due to side effects). Yes, HER2+ cancer is aggressive, and it has a high rate of recurrence (and mortality) without Herceptin. Since Herceptin is initially given with chemo in most cases, most HER2+ patients do chemo.

Since you are Stage I, your doctors might recommend 12 weekly infusions of Taxol + Herceptin. I did that regimen, and found it easier than Adriamycin + Cytoxin.

A few members have gotten Herceptin alone. One member, deni1661, was part of a study where she just did Herceptin + Perjeta. But, honestly, I found chemo to be doable.

Good luck!

Hello. Her2+ is pretty aggressive. I had only mastectomy in 2012 for 2mm idc per protocol. (Large dcis also)

I was diagnosed in 2014 with mets to the lungs. The protocol has changed now with almost all her2+ idc receiving chemo and Herceptin. You can investigate the NCI recommendations for clarification

Hi Cricutcat

I am triple positive (ER+, PR+, HER2+) and I also did chemo & herceptin - my chemo was 6 rounds of taxotere and carboplatin - no walk in the park but doable - my worst side effect was constipation. I’m still doing my herceptin infusions and just finished radiation dec. 24 which I also found very doable. I just knew for me I wanted to throw everything at the cancer to give me my best chance of never doing this crap again.

I also cold capped to keep my hair - kept about 70% and for me that was totally worth it

For me it's all about the probabilities. Your MO will be able to tell you how much each treatment will reduce your probability of recurrence. If your tumor is < 2 cm you'll likely get the standard 12 weeks of Taxol + Herceptin followed by Herceptin only every three weeks for the balance of a year. Not fun but also not too bad. It was explained to me that while HER2+ tumors are more aggressive, they also have better long-term outcomes because of Herceptin. It was a real game-changer. FWIW, Taxol is sometimes called "chemo lite"--usually the SEs are not as bad as the heavier duty chemo drugs.

Try not to worry. This is a bump in the road that you'll get on the other side of.

A lot of the terror of everything "cancer" - diagnosis, treatment, prognosis - is improved once you've met with all of the providers and have a plan of attack in place. Each person is very different and so is their particular cancer. The best plan will be figured out for you - with your input.

I had TCHP - six rounds of chemo (Taxotere and Carboplatin) with the targeted drugs (Herceptin and Perjeta) every three weeks. I then continued with Herceptin for the rest of the year. Chemo is scary and can be hard at times, but it's usually not unmanageable.

I hope that as you learn more and get your questions answered - you'll also find some hope and peace.

Cricutcat:

I started chemotherapy in June and finished in October, about a month later than anticipated because my last three infusions each had to be delayed a week because of low platelets. I had my surgery six weeks later in November, which was a little farther from the last chemotherapy infusion than the preferred time frame but that was the soonest they could schedule me and my CBCs were only just recovered enough for surgery by then.

I did not have radiation. I would have needed it if I had a lumpectomy but I had the bmx instead.

When I was explaining my chemo side effects to my sister she told me it sounded a lot like being pregnant. I disagree. I had chemo for four months, dry heaved for a day, and have slept well since it ended. She was pregnant for nine months, vomited daily for three of them, and hasn't slept since her first kid was born.

Hi Cricutcat, welcome and I'm so sorry for your diagnosis.

I had 2 diagnosis. My first diagnosis was on my right breast it was ER+, PR+, HER2-. I was going to be able to have a lumpectomy with no chemo. Then I had an MRI on my left breast to make sure we weren't missing anything. I had very dense tissue in my left breast. It detected a mass that wasn't picked up by mammogram. It was ER+, PR+, HER2+. With that diagnosis, since I was HER2+ that changed everything. I would need chemo.I had a mass and pre-cancerous calcifications in my right breast and a mass and a group of pre-cancerous nodules in my left breast. With all of that going on I chose to have a bilateral mastectomy. My breast surgeon agreed totally with my decision. I met with the radiation doctor before my surgery. I wouldn't know if I needed radiation until after surgery. As it turned out I didn't need it, thankfully.

I did 6 cycles of chemo. I had my surgery after that followed by 12 rounds of Herceptin. I was very lucky during chemo. I had nausea but never got sick. I had fatigue. I had chemo on Fridays and I would take Friday and Monday off from work. I found I needed the following Monday for a rest day. I was terribly fatigued by Sunday and Monday. I had trouble with my right eye. It ran and was cloudy alot. The doctor gave me drops for it which did help. I also had a continuously runny nose, which is still happening . I had trouble with constipation so the doctor gave me stool softeners. And of course, I lost my hair. I started my chemo the end of April and finished the beginning of Aug.

Cricutcat:

I had 6 infusions, which was supposed to be once every three weeks but after the third became every 4 weeks, so it took about 4 months.

I do have to do Herceptin for about another year. I have heard some places give post chemo Herceptin for 6 months though. I am also on Perjeta still.

Thanks Cricutcat. You will be amazed at the strength you find when you need it most.

I forgot a couple of things I had during chemo. I was so hoarse. Most often I nearly lost my voice. But it would get better a couple of weeks after chemo. And heartburn. I was on Prilosec which helped a lot. But I couldn't eat tomato based foods or I had horrible heartburn. The nausea meds they gave me helped.

I wish you peace & strength with your decisions. You will know what's best for you. Hugs to you.