Follow up after HER2 +++ Cancer

silvergranny

I was diagnosed in late 2015 with HER2 +++ ductual carcinoma, had two lumpectomies, chemo, radiation and Herceptin. I had a very bad oncologist who often lied to me and wouldn’t consider any of my concerns so after treatment she sent me back to my family doctor because I refused to take Arimidex. She only told me to get a breast exam every six months and mammogram every year. My family doctor only refers to her report when I ask about further tests fo check for other cancers as it runs in my family. He then said nothing further is required.

What follow up are others with my type of cancer receiving? Because she ignored my concerns about the chemo causing another stroke, I ended up having a TIA but there was no damage. The neurologist said I was right that chemo can cause strokes and mini strokes. I had already had stroke in early 2015 but have mostly recovered. However I am having trouble not worrying about getting cancer again and would feel better if there was an annual MRI or pet scan to make sure I am still cancer free. No one else in my blood family has beat cancer so I have good reason to worry although I try to stay positive

BarredOwl

Hi Silvergranny:

Sorry you haven't received any replies. It looks like you had HER2-positive invasive ductal carcinoma or "IDC", based on your receipt of chemotherapy plus herceptin. However, this is a Forum for people with non-invasive breast cancer ("DCIS"; Stage 0). Most patients with pure DCIS do not even receive HER2 testing, because it has no impact on treatment of DCIS. (Under under NCCN current guidelines, pure DCIS (Stage 0) is never treated with either chemotherapy and/or Herceptin).

To connect with others like you with HER2-positive invasive ductal carcinoma, you could start a new thread in the HER2-Positive Breast Cancer Forum here:

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

(The name of the Forum is a bit confusing, because of the shorthand use of HER2+ for "positive", but "HER2-positive" means +++ (3+) by IHC or positive by FISH.)

Given that Arimidex was recommended, you probably had hormone receptor-positive (ER+ and/or PR+) and HER2-positive disease, and are either "triple-positive" (ER+ PR+ HER2+) or this (ER+ PR- HER2+), which likely has similar follow-up. There is a very active thread for triple-positive members here:

https://community.breastcancer.org/forum/80/topics/764183?page=1108#idx_33235

You might want to include your stage if known and/or the size of your tumor and lymph node status, as there may be differences in follow-up.

By the way, given your diagnosis in 2015, please consider looking for a new Medical Oncologist to take over your case and follow-up. I think that would be preferable to follow-up by only a family doctor.

BarredOwl

silvergranny

Thanks, Bared Owl. I was not given copies of my reports and some wrong information after diagnosis by my doctors's nurse so thanks for directing me to the right forum and explaining things. I will repost this in the right place.

BarredOwl

Hi silvergranny:

If you engage a new Medical Oncologist, their office can work to obtain copies of all relevant records (and then give you copies upon request).

Optionally, in the USA, a patient is entitled to copies of their medical records by law. You can request "complete copies of all pathology reports from all surgeries and biopsies, including any supplements or addenda and related ER, PR and HER2 test results" by requesting them from the Medical Records Division of the facility or facilities that did the biopsy and surgery. Be sure to call in advance to request preparation of the desired documents (e.g., with reference to procedure dates). Ask for a pick-up time and location, as well as any related requirements (e.g., photo ID, possible fee).

Best,

BarredOwl

Luckynumber47

You are entitled to copies of all your reports. I would start with your breast surgeon, your oncologist and then any tests your pcp ordered. People here are very good a deciphering what the reports say. There is also a printable guide here for understanding your reports:

http://www.breastcancer.org/symptoms/diagnosis/path_checklist

The better informed you are the better you are able to understand your treatments and advocate for yourself.

And as Barred Owl suggested, find a new Oncologist. You need a good one who values you.