Anyone have prophylactic mastectomy and reconstruction? Weighing it

Posted by elliejk @elliejk, Jan 14 9:45am

I have ADH and may have genetic risk. Considering DIEP reconstruction

Interested in more discussions like this? Go to the Breast Cancer Support Group.

If I understand you correctly above, “you MAY” have a genetic risk? If you’re not sure, get a genetic test if you haven’t already. It’s super easy and gives you a starting point of where to begin compiling your baseline imaging. When I found out I was Chek 2 positive (increased risk of breast, kidney & colorectal cancers) my breast doc sent me in for tests so we could know where I was at point A in case I ever got to point B. Two years ago I had a CT scan on my kidneys and had my first colonoscopy and had my first breast MRI. All 3 clear, thank you Jesus!!
Fast forward 2 years (and no, I didn’t do as breast doc told me to do—get MRI every year/alternating with a 3D Mammo and come in for ultrasound appointment intermingled between the two) and I’m right there with you.

I am diligent with the mammo’s & colonoscopy is a piece of cake (minus the cake, of course).
I thought he was suggesting a bit of an overkill approach. And I’m not going to lie, I was concerned about all the radiation accumulation over the remainder of my life!! I hope/figure I have plea th of good years ahead. This was arrogant & foolish of me. I wish I had been more diligent and had a MRI from one year ago to compare with. Looking forward, I’m just happy they caught this ALH/LCIS early in my 3-D, ultrasound and biopsy at my yearly screening in mid-December. Thankful I had a good radiologist who had the keen eye to spot a problem. A hell-ish reality learn in v the news, yes?!

I urge everyone the same advice. Please test & meet with genetic counsellors.
This is my public service announcement. Once you find out whether “you are,” or whether “you aren’t” can mess with your mind and make you face the hard hitting questions like, “what if?” But none-the-less, I am so glad I did.

INFO IS POWER!! Can I say that again? It really is!!

They can guide you with information that will allow you to make your plan.

I’m Chek2 positive I’m sad to say. Having that with other risk factors such as having dense breasts, ALH/LCIS, an ongoing nipple discharge that has been checked out and dismissed by a BC specialist doc (for 10 years) and having family history—none of which is great news!!
I think knowing whether you have genetic mutation for BC will help you solidify what you can plan to do. It is a tough personal choice that takes guts to make.

REPLY

Good question about prophylactic mastectomy. I had HIGH family history but genetic testing negative for breast cancers. Very dense breasts. I was followed very closely and had mammogram every year. At age 41, in 2003, they found clustered calcifications on mammogram and biopsy showed LCIS and ADH. I contemplated a prophylactic mastectomy. But given time to research…I decided against it. I’m glad I did.
Why? Because this year, 20 years later, when I had the mastectomy, the advances in skin sparing and lymph node testing had improved mastectomy surgeries tremendously. If I had been gene positive, I would have had the surgery in 2002.
But my Mass General docs in Boston said that with a HIGH RISK BREAST CANCER MONITORING PLAN and by going on Tamoxifen for 5 years, they were confident in a good outcome. My breast oncologist followed me with a yearly Mammogram, a breast exam with her, and 6 months later by MRI. I ate right and kept active.
I also went on Raloxifene for 7 years after Tamoxifen ended. I was Cancer free for 20 years! This year, I had a clear mammogram but 6 months later, my MRI showed “an enhancement”. The MRI guided vacuum biopsy found two separate areas of DCIS on the right. (Same side as before ) I chose to have the double mastectomy. I did skin sparing pedicle flaps, using the skin from my saggy 60 year old DD breasts. I’m 5’6” 130 lbs so I don’t have much fat. The plastic surgeon used my own breast skin to make new breast mounds. I think they will end up cute little size A cups. The surgeon took my nipples and saved the areolas. This surgery would not have been possible in 2002. Mastectomy surgeries and reconstruction are no piece of cake. I did tons of research and saw 5 breast surgeons at 5 different hospitals in 2 states and 5 plastic surgeons since the September news. My mastectomy was in early December and my reconstruction was in early Jan. Take time to really investigate options. It’s tough to think clearly when you are still in shock and emotionally panicked.
We are lucky to live in a 2023 medical community.
If you’re a reader, look up breast cancer studies on line worldwide. Nih websites and other .org sites are really helpful.
❤️

REPLY
@toomanyquestions

Good question about prophylactic mastectomy. I had HIGH family history but genetic testing negative for breast cancers. Very dense breasts. I was followed very closely and had mammogram every year. At age 41, in 2003, they found clustered calcifications on mammogram and biopsy showed LCIS and ADH. I contemplated a prophylactic mastectomy. But given time to research…I decided against it. I’m glad I did.
Why? Because this year, 20 years later, when I had the mastectomy, the advances in skin sparing and lymph node testing had improved mastectomy surgeries tremendously. If I had been gene positive, I would have had the surgery in 2002.
But my Mass General docs in Boston said that with a HIGH RISK BREAST CANCER MONITORING PLAN and by going on Tamoxifen for 5 years, they were confident in a good outcome. My breast oncologist followed me with a yearly Mammogram, a breast exam with her, and 6 months later by MRI. I ate right and kept active.
I also went on Raloxifene for 7 years after Tamoxifen ended. I was Cancer free for 20 years! This year, I had a clear mammogram but 6 months later, my MRI showed “an enhancement”. The MRI guided vacuum biopsy found two separate areas of DCIS on the right. (Same side as before ) I chose to have the double mastectomy. I did skin sparing pedicle flaps, using the skin from my saggy 60 year old DD breasts. I’m 5’6” 130 lbs so I don’t have much fat. The plastic surgeon used my own breast skin to make new breast mounds. I think they will end up cute little size A cups. The surgeon took my nipples and saved the areolas. This surgery would not have been possible in 2002. Mastectomy surgeries and reconstruction are no piece of cake. I did tons of research and saw 5 breast surgeons at 5 different hospitals in 2 states and 5 plastic surgeons since the September news. My mastectomy was in early December and my reconstruction was in early Jan. Take time to really investigate options. It’s tough to think clearly when you are still in shock and emotionally panicked.
We are lucky to live in a 2023 medical community.
If you’re a reader, look up breast cancer studies on line worldwide. Nih websites and other .org sites are really helpful.
❤️

Jump to this post

How is your recovery going? Did you have adverse reactions to Tamixophen or other drugs?

REPLY

Thank you for asking-
side effects:
Tamoxifen caused Extremely HEAVY BLEEDING with periods and ovarian cysts. I could not manage it.
I had a complete hysterectomy
Which was easy surgery, laparoscopic, at age 45.
On Tamoxifen I gained 10 lbs on the meds but it came off right way when i stopped taking it 5 years later.
No other side effects.
But…early hysterectomy causes bone loss so now I have osteopenia. As do many 60 year olds. Mine bone loss plummeted in 2015. This is greatly helped by weight bearing exercise like tennis. ( even though I am a beginner and stink at playing.) I also walk a lot and just started pickleball!
They took me off Raloxifene when I started on Reclast infusion treatments for osteoporosis but Reclast didn’t work. Everything you put in your body has side effects. Read the studies and see if you want to try meds. Keep a close eye on blood work and other organs while you’re on it.
Tamoxifen and Raloxifene were the only choices in 2003 and 2008. Now you have other options. As far as gene testing, i had it redone this year since more genes are discovered. I am still negative. Docs tell me there may be a family gene carried in my family but it hasn’t been discovered.
Most importantly, don’t miss mammogram or mri appointments and ask to see results. If they find something and want to “keep an eye on it” bring the films for a second opinion.

REPLY
@elliejk

How is your recovery going? Did you have adverse reactions to Tamixophen or other drugs?

Jump to this post

Mastectomy recovery was good and bad.
Incisions healed well.
I had drains in for 3 weeks and developed big seromas even with the drains . The left drain was bloody and repulsive the whole time. I became severely anemic and required IV fluids for nausea and dizziness lasting 3 weeks. I was basically in bed the whole time. My only pain was in week 3 when my chest Skin felt like I had a flaming bra on. Like Jack Jack in the movie “Incredibles”.
The day I finally felt better was the day before my reconstruction. Now the flaming feeling is gone. I only have incision pain at night. Nausea and dizziness came back with a vengeance. Hematocrit was 8 or 9. I V fluids helped and now I’m on iron supplements. Feeling better. Reconstruction appearance is not ideal where the skin stretched from seromas. She should have drained them. I have 2 extra breasts stuck to the side of my ribs 1/2 way between my shoulder and waist. I hope someone can help me.

REPLY
@toomanyquestions

Mastectomy recovery was good and bad.
Incisions healed well.
I had drains in for 3 weeks and developed big seromas even with the drains . The left drain was bloody and repulsive the whole time. I became severely anemic and required IV fluids for nausea and dizziness lasting 3 weeks. I was basically in bed the whole time. My only pain was in week 3 when my chest Skin felt like I had a flaming bra on. Like Jack Jack in the movie “Incredibles”.
The day I finally felt better was the day before my reconstruction. Now the flaming feeling is gone. I only have incision pain at night. Nausea and dizziness came back with a vengeance. Hematocrit was 8 or 9. I V fluids helped and now I’m on iron supplements. Feeling better. Reconstruction appearance is not ideal where the skin stretched from seromas. She should have drained them. I have 2 extra breasts stuck to the side of my ribs 1/2 way between my shoulder and waist. I hope someone can help me.

Jump to this post

Well tbh that doesn’t sound good at all! I’m so sorry and you’re scaring me a bit here

REPLY

Reconstruction didn’t last…..had to have the silicone implants removed after some years. That led to a permanent allergy to anything with silicone including pads for an ablation. Had a rash all over both legs as well as the chest.

REPLY

Hello, I just had prophylactic double mastectomy for LCIS about 3 weeks ago. I opted for no reconstruction. It wasn’t too bad. I didn’t feel much pain at all, even from day 1 post op. I didn’t want reconstruction due to the extra time that I would have to spend in the operating room and the potential to bleed more. I already have low platelets. Now, the concern going forward for me is how is monitoring going to be done now that mammogram won’t be possible to catch anything early given that there may be about a 10% breast tissue remaining. MRI is not going to be possible either. So the only monitoring tool is using your fingers to feel for lumps afterwards. Anyways, that is the biggest concern for me at this point. Hope it’s can help you in making your decision.

REPLY
@mayo101

Hello, I just had prophylactic double mastectomy for LCIS about 3 weeks ago. I opted for no reconstruction. It wasn’t too bad. I didn’t feel much pain at all, even from day 1 post op. I didn’t want reconstruction due to the extra time that I would have to spend in the operating room and the potential to bleed more. I already have low platelets. Now, the concern going forward for me is how is monitoring going to be done now that mammogram won’t be possible to catch anything early given that there may be about a 10% breast tissue remaining. MRI is not going to be possible either. So the only monitoring tool is using your fingers to feel for lumps afterwards. Anyways, that is the biggest concern for me at this point. Hope it’s can help you in making your decision.

Jump to this post

REPLY

I just don’t see how it is possible technique wise after mastectomy to screen using mammogram which is usually the most effective method of catching cancer at its earliest stage. The nurse at my breast clinic said it would be using ultrasound. Ultrasound wouldn’t be able to detect such things as micro calcifications, which is what was detected via mammogram for me which then lead to discovering my LCIS. I guess I can push for an MRI but without reconstruction done, how is that technically possible.

REPLY
Please sign in or register to post a reply.