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

Yes, I’ve had side effects from Kisqali and Letrozole but let me preface my response noting I’m highly sensitive to meds and almost always have adverse side effects. I’m always a medical outlier.

Kisqali 600 -starting dose. 4% of people get prolonged QT which is a very dangerous heart rhythm detected by an EKG. I was one of those people right off the bat. Healthy heart. I could hardly walk across the room on that dose. Med stopped till normal rhythm then reduced dose to 400 and PQT stopped. But I’ve also been going into afib since week one and didn’t have it before. That’s my most dangerous and worrisome side effect although apparently not a common one. It has caused a few TIAs and causes total weakness and fatigue on those days.

Others are fatigue, hair thinning, lower blood pressure, low blood counts reduced immune system, aggravates my neuropathy. Letrozole also causes fatigue and hair thinning. Oncologist says the Letrozole is responsible for my sporadic knee and shin pain. I also believe it has caused my insomnia which is a documented side effect. Fatigue was the worst year one. I could hardly stay awake. Year two next worst. Still have fatigue issues but I’m not falling asleep all the time. The afib has worsened each year in frequency and duration. Having said all that, I’ve continued to take these meds as it beats the alternative! 😊 It’s just the new normal just like aging is our new normal.

Note 2 months after starting these, I started another med for neuroendocrine lung cancer and still take it. It causes some of the same side effects and others so that muddies the water.

Everyone reacts to meds so differently I wouldn’t assume this would be anyone else’s experience. I don’t even tolerate vitamins well.

Thank you for your reply.
I have opted not to take Kisqali for those reasons. A few ladies i know had the heart issues and fatigue and chose to discontinue for those reasons.
The Letrozole crippled me. I chose exemestane.
I was diagnosed with AFib after I had a TGA (transient global amnesia) All brought on by stress.
Tho my Afib is classified as a 2 im still taking the Diltazem and Eliquis.
I hope to redirect these with some alternatives in the next several months.
Im feeling for you.
I dont tolerate meds easily either. I Do take vitamins but am adamant about getting high quality ones from either Mercola or Mike Adams, Health ranger as he has his own lab to test quality.
Blessings to you. I will be lifting you up in prayer.

Sorry to hear about your issues with meds and side effects. Do you take anything in place of Kisqali like Ibrance or Verzenio?

TGA sounds really scary. I’m too afraid to take any meds for afib. I took Multaq for 3 days and had all the heart attack symptoms the whole time. I’m convinced I wouldn’t be here if I hadn’t stopped taking it. Blood thinners also scare me.

Thanks for the tip on vitamins and for the prayers. I’ll pray for you as well.

Im glad I had DM vs. single because of looks. U have 1 bump n 1 flat chest wall.

Hi. So were you getting an ultrasound on your mastectomy site? I had a l.4 cm lump on my boney chest wall, and a skin sparring mastectomy. No lymph node involvement. I am in my 4th year. I am petrified that cancer will come back in my mastectomy site. My cancer team said they will check manually once a year. That is it! Could you please explain, in more detail, what the ultrasound is called and how it is preformed? You have been so helpful.

I have a natural breast and a reconstruction on the right. The cosmetic result is completely symmetrical. I have no indication of implant illness (BII) at 2 years. That said I am looking to explant ( just to remove a foreign body) and reconstruct with a series of fat transfers . This is becoming more of an option for reconstruction.

Yea, ok. I net got reconstruction because of BII. I had had 2 boob jobs twice so I know whats it like. Love being flat because I have a bad back+ neck.

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!
🌸🌸🌸🌸🌷🌷🌷🌷🌺🌺🌺🌺❤️❤️❤️❤️😘

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.

This too was very helpful thanks so much