Any ER+ PR- HER2+ long term survivors?? Scared.

distraughtdaughter

My darling mother was just diagnosed with suspected stage I/II IDC the day after her 60th birthday. Tumor is multifocal (1.9x1.8 with 3 satellites of varying sizes), PET scan did not detect 2 smaller satellites and shows clean lymph nodes. No LVI seen in the biopsy sample, but the Ki67 is 40%.

I know the surgery scheduled for next week will hopefully remove the bulk of the disease from the body, but I'm torturing myself reading about the aggressiveness of HER2+ tumors and the apparently poor prognosis of PR- tumors with high Ki67. The ER+/PR-/HER2+ combination doesn't seem very prevalent, so I was hoping to hear from anyone who has walked down this path before. Just looking for some comfort that all will be well and that theres hope for my mom to meet her future grandchildren some day

Moderators

distraught daughter, we're sorry for your mom's diagnosis, but wanted to say welcome, you're in good company here! Till you get responses from other members, the following thread will give you hope! Topic: HER2 Positive-anyone 10 years out?

We wish your mom all the best with treatment. If you need any help navigating the boards or finding a forum that's right for you, please don't hesitate to reach out to us. We're always here!

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Becca953

distraughtdaughter - This combination is "classic" HER2+ disease per my MO. When I was recently diagnosed, I feared the worst after doing internet research. The ER+PR- is a problem if not HER2+. With the HER2 mutation it is usually very treatable. The reason why it is classic disease, is that the HER2 and the ER play off each other in an inversely proportional relationship. They both funnel the cancer growth. I thought the same as you but have since discovered that this combo is not that uncommon in HER2. You will find it quite a bit. There is a fairly well known patient who has not been on these boards for awhile but has a FB page and blog called BUT DOCTOR I HATE PINK. She is an advocate for all women with breast cancer. You can like her FB page to get the latest news and info.

HER2+ is aggressive, but there are several drugs that target it specifically and most, when they work, work quite well. There are also several new HER2+ drugs in Phase 2 and Phase 3 clinical trials. If you check the medical studies, oncologists interviews, and other information most will say that HER2+ used to have the worst prognosis but now has one of the best. The only caveat is that these treatments have not been out that long with Herceptin being the oldest at 20 years and even it was not widely used initially. So, they are still trying to figure out how to best sequence and use these newer drugs.

SpecialK

I had regular receptor testing on my biopsy sample that indicated a low level of PR, and then a Mammaprint done that indicated I was PR-, along with strongly ER+ and strongly Her2+. I received Taxotere, Carboplatin and Herceptin for 6 rounds, then continued with Herceptin only for the remainder of the year. I was treated before Perjeta was approved, so I did not receive it, but it is available now for early stage Her2+ patients, along with Nerlynx - an oral med to take after chemo and targeted therapy is finished. I was diagnosed almost 8 years ago, at 54, with a 2.6cm tumor and two positive nodes - and still here. Wishing the best for you and your mom. Please ask questions when you have them, someone will be here to help.

distraughtdaughter

Thank you ladies for your kindness. It’s only been a week of navigating this new normal and the amount of bad information/statistics I seem to encounter is overwhelming.

SpecialK - thank you, you have given me a little flame of hope. I hope hearing from many more ladies like you will only add to that.

Becca953 - does the inverse relationship between the estrogen and the HER2 make the tumor behave less aggressively? The MO we spoke with briefly seemed totally unconcerned about HER2 and opined that my moms tumor had grown quite slowly (they were seen on a prior mammo a couple of years ago but apparently no one was concerned about them at the time...)

Becca953

distraughtdaughter - No, what it means is that when the ER is growing the cancer the HER2 is less so, and vice versa. That is why it is more aggressive, both fuel the growth. HER2 means that there are a crapload of HER2 receptors which tell it to grow and grow and grow. Each cancer is different and unique to an individual, and it also acts differently based upon a persons immune system response. KI67% is a nominal factor to estimate growth. Lower ones are in the single digits and some are as high as 70-80%. Mitotic (or growth at the given instant of pathology) rate also factors in. That is one of 3 variables that determine the grade of the tumor. I recommend having a list of questions at the next MO appointment to help you understand everything and alleviate your concerns. You will also learn a great deal on here. Some of these ladies are uber smart and know much more than I can ever hope to.