6/28/29: The Genetic Counselor Called Me with More Testing Results

I missed her initial call, but she left a message saying she had "more reassuring news".

I think the results for the 83 genes came in already. She said they are "essentially negative". 

She said her team meets to discuss all cases in the second week of July, so I may hear from her again if they have any new thoughts on my results. In the meantime, she will send me the results in the mail.

6/27/19: The Genetic Counselor Called Me with Testing Results

It's good news.

My testing for the 9 most common genes linked to a significant increase in risk for breast cancer showed no known mutations. This means I do not have a known inherited risk for breast cancer.

However, the testing did show that I have "variants of unknown significance" (VUS). The variants were found in my BRCA2 and PALB2 genes. The genetic counselor said they don't see these kinds of variants often enough in the lab to know if they are linked to cancer or not. They might just be benign mutations that occur in the general population.

Since not enough is known about these variants, they won't affect my surgery plans. That is, my genetic testing results do not provide additional justification for a double mastectomy.

Still... It struck me that the genetic counselor specifically used the word "known". I don't have any known mutations. But maybe my two variants are unknown mutations linked to breast cancer... After going through my family history with the genetic counselor, the prevalence of cancer on one side of my family seems concerning enough that it wouldn't be too hard to believe that there may be something genetic, even if it's not yet known...

Anyway, I did opt to do the further testing for the 83 genes associated with various hereditary cancers. The genetic counselor will call again with those results when they come in.

6/27/19: I Joined Facebook Support Groups

We haven't met with the breast surgeon yet. I have a long list of questions for him, but as I wait for that appointment, I find myself leaning towards a double mastectomy with no reconstruction. Without breast reconstruction, I could either "go flat" or wear prosthetics.

To get a better idea of what to expect, I joined these Facebook groups:

Double Mastectomy Discussion And Support Group - This page includes women with and without breast reconstruction, so I can get an idea of what both paths entail. There is also a fair amount of talk about breast cancer, which is also helpful.

Fantastic Flat Fashions - Most women's clothing are designed and cut for breasts, so it can be a challenge to find clothes that fit and are flattering.

Flat & Fabulous - This page includes women who went flat immediately after a double mastectomy and also women who previously had reconstruction and then had them removed.

9/8/19 Update: It took a while, but my request to join another group was finally approved. In my experience so far, these groups have been super informative and supportive. It's important, though, to remember that each person's situation is unique, so I'm careful to filter the information for content relevant to myself, and to not compare my experiences with others'.

Flat & Fabulous Breast Cancer - A sister page to Flat & Fabulous that focuses on breast cancer treatment and support.

9/19/19 Update: Now that I've got my treatment plan that includes chemotherapy and hormone therapy, I've joined additional groups in hopes of getting a better idea of what to expect from the drugs I'll be taking (Tamoxifen, Lupron, Herceptin, Taxol).

Triple Positive Breast Cancer HER2 PR+ ER+ - A page dedicated to the type of cancer that is driving my treatment plan.

triple positive breast cancer survivors - If there's more than one group for something, I usually join the biggest one, figuring more members means more frequent posts and comments and a wider range of experiences to learn from. This group has fewer members than the other one, but not by a lot, so I just joined them both.

Tamoxifen support group - Tamoxifen treats ER-positive and PR-positive breast cancers. About 2/3 of 3 breast cancers are positive for at least one of those hormone receptors.

2/27/20 Update: I left the Tamoxifen support group, since I ended up taking exemestane instead.

6/26/19: The Breast Center Called Me with an Appointment Change

I wasn't home to receive the call, but they left a message.

The breast surgeon needs to re-schedule our appointment from Friday to the following Monday.

It's only 3 days, but it's 3 more days of anxiety and uncertainty while not knowing exactly what kind of cancer I have, when my surgery will be, and what my treatment plan going forward will be.

6/26/19: Insurance Letter Confirming Approval for Genetic Testing

The genetic testing required pre-authorization, and I received a letter stating that my request had been approved. It was back-dated to June 20, and the service had to fall within a month's window of time.

6/26/19: Letter with Mammogram & Ultrasound Results

It feels weird getting these formal results in writing after already moving forward with verbal results and next steps.

This time, the letter informed me that the diagnostic mammogram and ultrasound on my left breast "showed an area of abnormality...[and] a biopsy is recommended."

I already have an appointment for the MRI with biopsy, but I'm leaning towards getting the double mastectomy, which would make the MRI with biopsy moot.

6/20/19 - 6/21/19: Phone Calls (Insurance Referrals)

It suddenly occurred to me to wonder if I need a referral for my breast surgeon appointment next Friday?

I called the Breast Center to ask. I left a message, and someone called me back first thing the next morning. She said from their office's perspective, I am all set. However, she suggested I call my insurance company, since they may require a referral for their own reasons.

I called my insurance company. They confirmed that yes, I do need a referral from my PCP to the breast surgeon. My existing referral (good for 6 visits in 1 year) to see my NP in the Breast Center uses my NP's "NPI number". I will need a separate referral to see the breast surgeon using the breast surgeon's "NPI number".

I called the Breast Center to request the breast surgeon's NPI number.

I called my PCP's referral line to request the referral (also good for 6 appointments in 1 year).

Then I suddenly wondered if I should have had a referral for yesterday's appointment with the genetic counselor.

I called the genetic counselor's office. I felt sheepish when I realized that I had called her direct line, instead of an administrative line. I figured since I had her on the phone, I could ask one question that had occurred to me: If I test positive for genes related to breast cancer, will the results be able to tell me if the gene came from my mother's side or my father's side? The answer is no.

Anyway, she gave me the NPI number for her supervising doctor (a medical oncologist).

Finally, I called my PCP's referral line again. I explained yesterday's unexpected and urgent appointment, and he was able to put in a referral (presumably back-dated) that would cover yesterday's appointment (again, good for 6 visits in 1 year).

What a lot of hassle. I'm not even 100% sure the genetic counseling referral was needed, but I figure better safe than sorry.