Sep 10, 2019 01:30AM cindyny wrote:

I met w a PA when my MO was out sick. She recommended I do the testing. PA lead me to believe I fully qualified, insurance on board.

I met with the woman in charge of the testing and she told me my insurance fights it all the way. But she believed I'd still qualify for some, she was used to fighting w my insurance company. I had my blood drawn, 5 vials, we made the follow-up 5 weeks out, to cover for denial and fight.

Results of a 27 genetic panel testing, all negative. I had mixed feelings - negatives BRCA 1 & 2, and I still had BC. So you're not home free on anything, you just don't have the gene mutations for known cancers.

Payments amounted to 3 copays, total $60 out of pocket.

I let my family & close friends know the results. Prior to testing I had to fill out a family history on both parents sides. In doing so I realized my father's 3 brothers and my dad all had heart issues. The uncle's had passed when I was a kid, too young to attend the first 2 funerals but I knew of their deaths. It wasn't until this family history paperwork that I realized this. Back when I started Anastrozole, I started seeing a cardiologist, and I'm scheduled for a "calcium score" CT of my heart on 10/2. I'll make sure to tell my Dr of my enlightenment on family history.

Suggestions for others - I'd say it's a mixed bag. Mine being all negative didn't give me any great jubilation. Had they come back with some positive results, as some friends have had, it just makes you more aware to be tested in those areas. Example - one friend had markers for colon & pancreatic cancers. Colon, you can increase your colonoscopy testing to yearly or more frequent if your Dr says so. But pancreatic, usually people don't know they have it until it's stage 4. Unsure how to look for it more carefully (there may be a way, I just don't know it). I believe she's sorry she had the testing.

After my blood draw, and during the 5 week wait, I did wonder what was I getting myself into. Did I really want to know....yes, but...a thousand buts.

Nov 13, 2019 11:55AM moderators wrote:

Dear Brook3R,

Welcome and thank you so much for sharing your story. We are wishing you the best and a speedy recover after your mastectomy surgery. Keep us posted on how things go for you. We appreciate as do our members the time that you have taken to post your genetic testing experiences.

The Mods

Nov 16, 2019 11:16PM Jamlyn4 wrote:

What led you to doing the testing?

Family history of cancers. Mother and both of her sisters had breast cancer in their 40s. Mom had it in both breasts at different times. My maternal grandmother also had it and died by about 55 from complications. Maternal grandfather had prostate cancer as well as multiple cancers found after he passed from kidney issue.

I had one scare about 5 yrs ago of lump that was biopsied and found benign.

What were your results, and what choices have you made based on the findings?

BRCA 1 mutation

Talked to doctor about extra screening. Plan so far is to alternate mammogram and MRI every 6 months. And have been referred to a High Risk Brest Clinic. Though that appt. isn't until July as that was earliest they had. Primary doc is very concerned about ovarian cancer risks so have been thinking about options there too.

Was payment an issue?

Will cost me about $180 after insurance.

How have you discussed these decisions with your family?

I'm a single gal so walking this path mostly alone. Parents and aunts know about test and have been supportive in decision to get it as well as willing to give advice of their experiences.

What suggestions would you have for others?

It's difficult knowledge to sit with and sort of feels like a ticking clock. Be mindful going in that you can't unknow the results once you have them and it may cause some sleepless nights. For me it was was worth it as docs haven't wanted to start mammos as I'm 39 (even with family history) and with this test I have been more empowered to advocate for better screening.

Nov 27, 2019 11:45PM - edited Nov 28, 2019 12:24AM by simonerc

Hi Jess1965!

Dang! Just tried to post link. Google “Dr. David Euhus ATM" Article is “A New Trio Of Genes Enters The Risk Assessment Equation In Hereditary Breast Cancer."

This article is authored by my BS. My genetic counselor at JHH stated the link to ovarian. My genetic testing results for my ATM mutation lists ovarian.

For uterine, my GYN Onc at JHH states she sees a link and my sister had uterine. I do not know that there are firm studies yet but my whole team and my insurance all were just fine with taking uterus along with ovaries and tubes. My GYN Onc says she prefers to take uterus in ATM'ers having BSO.

Being post menopausal, I was fine with everything being taken. Guessing by your name, we are close in age. I am 53 and active. The recovery is longer adding uterus to BSO but I am hoping that a few extra weeks of downtime can help lead me to a long and healthy life.

Reach out anytime! Take good care!

Edited to add... my MO was strongly in favor of BSO as ovarian cancer has poor screening and poor prognosis. Being post menopausal and ER+, he recommended taking ovaries and tubes. With my sister’s uterine cancer diagnosis, all MD’s recommended adding uterus.

Nov 28, 2019 06:57PM simonerc wrote:

All the best to you too, Jess1965!