Optional double mastectomy over single. What helped you to decide?

Hi @colely
It has been 11 years since my mastectomy, but the way I remember it I had an annual breast MRI the first two years after then a breast (really chest) ultrasound annually every year after that. I hope they would have caught my new cancer with that but it was easy for me to feel it manually. Hard, immobile, painless lump that I think was 1.2 cm when removed. The first year post op I rotated visits and manual checks with my surgeon and her PA every 3 months I believe then every 6 months till the 5 year mark. Annually after that. With all the lumps and bumps and ribs, etc. after my mastectomy I often thought maybe I felt something but the ultrasound indicated no. Then when the cancer showed up I had no doubt it was a new growth and felt certain it was cancer which it was. Keep doing your own checks and point out anything that you’re uncertain about. Ask if you can have an annual ultrasound. If you ever had an ultrasound during pregnancy it’s just like that. You lie on your back and they run a little roller ball all over your chest and it shows them images. No radiation and it’s painless. It’s good for peace of mind. They say they can never remove 100% of breast tissue, but your chance of recurrence after a DM is small. After my mastectomies I did not have chemo, radiation or hormone therapy. Mine original cancer was 7mm stage 1, not in lymph nodes, clear margins but I do have BRCA2 and CHEK2 mutations. You most likely won’t have recurrence. They are not exactly sure why I did. Prayers for you.

Hi @colely
It has been 11 years since my mastectomy, but the way I remember it I had an annual breast MRI the first two years after then a breast (really chest) ultrasound annually every year after that. I hope they would have caught my new cancer with that but it was easy for me to feel it manually. Hard, immobile, painless lump that I think was 1.2 cm when removed. The first year post op I rotated visits and manual checks with my surgeon and her PA every 3 months I believe then every 6 months till the 5 year mark. Annually after that. With all the lumps and bumps and ribs, etc. after my mastectomy I often thought maybe I felt something but the ultrasound indicated no. Then when the cancer showed up I had no doubt it was a new growth and felt certain it was cancer which it was. Keep doing your own checks and point out anything that you’re uncertain about. Ask if you can have an annual ultrasound. If you ever had an ultrasound during pregnancy it’s just like that. You lie on your back and they run a little roller ball all over your chest and it shows them images. No radiation and it’s painless. It’s good for peace of mind. They say they can never remove 100% of breast tissue, but your chance of recurrence after a DM is small. After my mastectomies I did not have chemo, radiation or hormone therapy. Mine original cancer was 7mm stage 1, not in lymph nodes, clear margins but I do have BRCA2 and CHEK2 mutations. You most likely won’t have recurrence. They are not exactly sure why I did. Prayers for you.

Hi, again. Because of your BRCA genes, and your recurrence, do you have yearly gynecological exams? If so, how are your checked out?

No, im not taking any of those that you mentioned.
Why? Heart risks.
After 2 Plus years on Exemestane, I had a heart issue. Docs werent sure what caused it, but the cardiologist asked if exemestane was a pro thrombotic. My med tech friend did research and said for a very small percentage, it could be. Mustve been me. Thankfully, no heart damage.
After I had finished chemo, about 1.5 years later i asked my onc to order a full screening of my heart to see if chemo had done any damage. Zero. It was that screening the dr used 2-3 years later to compare with the Exemestane episode. Dr overlayed the films and said it was just the same. (I highly recommend doing this after having chemo for future use.)
Got myself off it and decided id rather fight the cancer than Have heart issues brought on by a drug.
What am i doing instead?
1) Taking Essiac Tea: 6 oz 3 times a day. I only purchase it from the folks in Haverill, MA.
https://genuineessiac.com/
(Listen to some of the testimonies. One of the ladies is a friend of mine. She informed me of Essiac. Her 4th stage bone cancer has responded to Essiac beautifully.)

I take 1 tsp baking soda with 1 cup purified water, twice a day for week 1, once a day week 2, twice a day week 3, once a day week 4. Break for 20 days, repeat.

Im Following Chris Beat Cancer way of eating. Bought the Square Modules..worth the money! But, watch him on youtube if you cant purchase the modules.x
Im juicing alot. Bought the Nama J2 juicer… yes a pricey sacrifice, but Worth my health.
I stay away from processed foods, however, on a rare occasion, I will take a small bite of a sweet thing. I take lots of supplements.
Zinc, selenium and Quercitin, vit D, B, C, A, E and others.

There are many paths to heal/derail cancer naturally.
Im not against traditional medicine as Ive had it myself.
But after 11 years and a ton of stress these past few years my cancer came back in my stomach lining.
Ive opted for a different path. And there are many promising protocols yet to come!
God holds our future and tomorrow is promised to no one. So make the maximum you have today!
🌸🌸🌸🌸🌷🌷🌷🌷🌺🌺🌺🌺❤️❤️❤️❤️😘

I am asking because i have breast cancer on my father's side, but they won't do BRCA testing on me, and I am also wondering if I should still be getting checked out by gynecologist.

@colely
Because my risk of ovarian cancer was so high I took the surgeon’s recommendation and had my tubes and ovaries removed at the same time as I had the mastectomies. I was 54 and done with them anyway.

I don’t understand why they won’t test you for BRCA when you have a family history of BC. My first cousin had BC but did not have the BRCA mutation so you may not have it. I was tested because my aunt had breast cancer however I later found out she made that up decades ago (long story). My surgeon just laughed when I told her that and said it’s lucky she lied or I wouldn’t have been tested. No other BC in my family but lots of other cancers.

My son needed to be tested at 35 because of my BRCA mutation. My surgeon advised us to go thru color.com so you can get the testing there for about $200 not covered by insurance. The test includes lots of other genetic tests as well. I actually tested again on color.com with my son for a lot of other cancer mutations, cardiac and enzymes needed to properly metabolize meds since I have so many issues. I found out I also have the CHEK2 mutation for BC, colon cancer and others. My son also has BRCA2 and CHEK2. The tests gave us lots of other info too.

The testing may put your mind at ease. You just have to spit in a tube and mail it in. A generic counselor will review results with you and you’ll receive an in-depth report. I hope that helps.

I am the first in my family to have breast cancer; but I had early ovarian cancer when in my 30's so during my research I found there could be a genetic link between ovarian cancer and BC so I requested the genetic test and my doctor requested. But I will say it was my oncologist that made the request and not my PCP. Since I had just been dx with BC and we knew it was TNBC and in research I found there was a possible link between TNBC and genetic mutation. I'm the one that requested the test after my conversation with the onco from info I found in my research. I'm not sure if the test would have been done if I hadn't pointed out the linkage between ovarian and breast cancer, since there was no other family members that had ever had BC.

I'm glad I asked because now we know I have the mutation and I've passed it to my son but not my daughter. I can only imagine I received the mutation from my dad - who passed at 95 YO no cancer related.