Cancer free but high risk

Hi daisymay:

Assuming any confusion about the pathology report and your ER, PR, and HER2 status is cleared up to your satisfaction and the findings confirmed as hormone responsive (ER+ and/or PR+) and HER2+, Stage II, purely node negative (N0), then a recommendation for lumpectomy + radiation, chemotherapy plus trastuzumab (HERCPETIN), and hormonal (endocrine) therapy seems reasonable.

The surgery and radiation are "loco-regional" treatments, directed at removing cancer from the breast. I think your doctors are saying that after the lumpectomy (plus radiation) and negative nodes, they feel that they have successfully removed the local cancer. However, even with node negative invasive disease, there is a risk that before the surgery, some cancer cells already escaped the area and moved to distant sites via the blood or lymph. Your team views this risk as placing you at high risk of distant recurrence. Chemotherapy and targeted therapy (trastuzumab for HER2+ disease) are systemic treatments and are designed to address the risk that some cells moved to distant sites.

If you are Stage II and purely node negative (N0), then size-wise, the tumor must be greater than 2 centimeters. Please advise if that is not correct.

For hormone receptor positive, HER2-positive, node negative (N0) ductal (IDC) or lobular carcinoma (ILC) where the tumor is greater than 1 centimeter, the consensus guidelines from the National Comprehensive Cancer Network (NCCN) (Professional version 1.2016) provide the following treatment:

"Adjuvant endocrine therapy + adjuvant chemotherapy with trastuzumab (category 1)"

The recommendation you received is in line with consensus treatment guidelines.

However, if you have doubts, or would like additional input and discussion, you may wish to seek second opinion from a medical oncologist at an independent institution. You could also discuss any issues with the pathology report with the second opinion, and get input on whether they have been adequately resolved, or if not, what steps may be needed to be certain of the pathology.

This "high risk" thread is more for people at high risk of getting cancer, as compared to those already diagnosed with Stage II HER2+ disease (at higher risk for recurrence). For more input from other HER2+ members, please try a new thread in the HER2-positive forum:

https://community.breastcancer.org/forum/80

If you are triple-positive (ER+ PR+ HER2+), try this thread:

https://community.breastcancer.org/forum/80/topics...

BarredOwl

Daisymay,

The doctors say we are "cancer free" when the surgery gets all the tumor out with adequate margins. However, this does not necessarily mean we are cancer free. There might be cancer cells floating in our system somewhere that could cause trouble later, and HER2+ makes that more of a potential problem. ER+ and PR+ are good though, giving you the tool of hormonal therapy after the other treatments.

I had conflicting HER2 results between biopsy and post-surgery pathology. If you have any doubts, find a doctor who will retest. They can retest with more cells, in a more thorough manner.

If you have other health problems, you might be able to adjust your treatment somehow, but right now this is definitely the best way to go: radiation, chemo, Herceptin and hormonal therapy.

None of us KNOWS we are cancer free. I wish the MD's would be careful how they put things sometimes!!

And I just want to jump in here and encourage you. I have found chemo not to be the Big Terrible that I imagined it would be. Sure, there have been some side effects. My hair fell out on Day 17, so now i wear hats and a cute wig. Things taste pretty weird for the first 14 days after chemo. I have had enough diarrhea that I take something every day to keep it in control (no accidents~!) The fatigue has been pretty tough at times. I've had to go to the ER a couple times for high fevers, and got antibiotics. But for the most part, my life goes on pretty much normally.

The big thing for me has been the fatigue. When it hits, I could lay down right in the road. But I'm not sleepy. Just bone weary. It has affected me during this holiday season because I just don't have the stamina to really cook like I normally would. Most Christmases, I'm in the kitchen every day making cookies and pies. This year, Pepperidge Farm is making my cookies. Just as well--cookies taste weird to me right now. I've been fortunate to have friends who have brought in meals from time to time, especially during chemo weeks.

Anyway, that's my way of trying to say, hang in there. None of us wants to have chemo, radiation or surgery, but here we are. My particular cancer is moderately aggressive, plus I have 2 gene mutations, so my MO is being VERY aggressive with my treatment. Do I love it? well, no. But I want to give it all I've got, because as my MO told me, if it comes back it will be incurable. I can't control whether it will recur or when, but by golly! I'll do everything in my power to NOT have to go through all this again, if at all possible!

Hi Daisymay:

I am glad you were able to get answers to your questions.

Do you have copies of all of the pathology reports from biopsy and surgery, plus any addenda or supplemental pathology reports (often contain HER2 test results)? If not, please request copies of all as soon as possible and confirm what they are telling you.

As you can see from windingshores reply, both her biopsy and surgical samples were tested for HER2.

So, do you mean that your surgical pathology showed HER2+, which at first appeared inconsistent with the biopsy results. But when they went back and checked the pathology from the biopsy, they found it was actually also HER2+. So, both biopsy and surgical pathology are consistent and indicate HER2+.

BarredOwl

Just to chime in - Herceptin is a game changer - Her2 tumors previously had a very bad prognosis, now, with Herceptin, they have a very good prognosis. The problem is that they give Herceptin with more toxic drugs - I had the TCH combo. The Taxotere and Carboplatin were the things that gave me the terrible side effects. When I was on Herceptin alone, the side effects were negligible. I ended up needing the T and C at reduced dosages for my 4th - 6th treatments because I couldn't tolerate higher doses. If I had to do it over again, I would have asked for very minimal T and C doses. Apparently studies have shown that Herceptin works better when combined with the nasty stuff. Good luck to you!