Prophylactic mastectomy in light of high risk?

Lukesmom17

Hi guys.

Just back from my pre-op appointment for my excision biopsy surgery for my ADH. I have 40% lifetime risk of bc. The nurse advised me that in would probably be eligible for mastectomy IF I wanted to (in the future) due to my risk level. Anyone have any experience with that?

I'm going to be 41 in October and I have a 2 year old son. My own mother died at the age of 52 from stage IV ovarian cancer. The thought of getting rid of my bc risk is appealing to me.

Just wondered if anyone had done it and what that was like.

MelissaDallas

I'd ask to be referred to genetic counseling if my mother died of ovarian cancer. You could possible have something going on that might also make you at higher risk for other cancers too.

Geneticists are much better calculators of risk than the nurse.

Lukesmom17

Thanks MelissaDallas. I had genetic testing done. Came back at elevated risk. No mutations but a variant on my ATM. The genetic test also puts my risk at 40%.

SimoneRC

Hi Lukesmom17!

Was your ATM variant pathogenic? If it is pathogenic and with your family history I would seriously consider the mastectomy and further counseling on ovaries (BSO). There is a link between pathogenic ATM mutation and ovarian cancer as well. Since I was post menopausal the recommendation was to remove ovaries and tubes. Head GYN Onc at major NCI hospital says they are starting to see link between ATM and uterine cancer as well. Since my sister developed uterine cancer, I took my uterus as well.

Lots to think about. I hope you get lots of information/counseling that lead you to decisions you feel comfortable with! Good luck!

Lukesmom17

Hi SimoneRC,

You know, I'm not sure if there was any mention of it being pathogenic. I'd have to go back and look at the report. I believe it just says it's a variant of unknown significance. Not sure if those two things are mutually exclusive or not.

This process at times feels like it's moving at a snail's pace. I understand that they need to take things stop by step but it's so hard being patient sometimes.

Thank you so much for sharing the info you shared. That means a lot to me.

SimoneRC

Anytime, Lukesmom17!

Ask lots of questions. Check in often. Keep us posted!

mustlovepoodles

I am older than you, but finding out that I had 2 gene mutations (PALB2 & CHEK2) and 45+% lifetime chance of BC was enough to convince me to have BMX. Two of my sisters also had uterine cancer, as did my grandmother, and one of my sisters also had ovarian cancer. Yikes! All that stuff had to go!

MaryScout

Hi Lukesmom17!

Your situation is so similar to mine, though I'm 55. Was diagnosed with ADH, dense breasts, about a 40% chance. I just didn't want to do the monitoring and the tamoxifen, etc. I've had cancer before (cervical, melanoma), so I really didn't want the constant anxiety. I also travel a ton for work (and fun!), and a lot of it overseas. I really thought that the scans, etc., would be a major hassle with my schedule. I didn't want to do implants, so opted for a PDMX with diep flap reconstruction. After researching it quite a bit, opted to the New Orleans Center for Breast Reconstruction. I had it in May, and I am so very happy with my decision. No regrets whatsoever. Please feel free to reach out if you ever want to talk. I spoke with many people prior to my decision, and it helped. We're here for you!

Yours,

Mary

Lukesmom17

Mustlovepoodles thank you so much for your response. It's so helpful to know that I'm not alone in my thinking!

Lukesmom17

MaryScout thank you so much for sharing your experience. I'm going to have to look into your procedure because I'm not familiar with that.

Did you have a separate surgery to remove the ADH? Did your surgeon share with you that an elective mastectomy was an option?

My mother's name was Mary 😊

HopeWins

you're not alone in your thinking at all! It's a very personal decision though. I have dense breasts and a medium-strong family history, but that's it. After a couple mammograms and an ADH diagnosis, I was ready to tap out. I knew right then I wanted a bmx. BS would have no part of that convo, but the excisional biopsy showed DCIS and a sketchy margin so that changed things. BS still pushed hard for the conventional/less "aggressive" course of treatment.

For me, bmx was right. I had a choice - rads, tamoxifen, another lumpectomy and frequent MRIs or bmx. I chose bmx and diep flap recon. I'm a week out from surgery and have to say, it's no walk in the park but i don't regret my decision. The other part of my thinking was this - I can do it now while I'm young and strong or when I'm older... I chose now.

I'm not super upset about it, but if I had known I had DCIS it would have been better to go directly to bmx or had a better plan for the incision because now I have a 2" scar from my excisional biopsy that has to be re-excised in a revision surgery. If you're having an excisional biopsy and think you may end up with a mastectomy, I'd suggest you talk to the BS about the best approach for the incision. If my scar radiated out from the nipple it would have been easy to deal with. Instead it is placed like part of a concentric ring, like a dart board so it's a bit of a challenge.

Best of luck to you and your journey.

Lukesmom17

HopeWins thank you so much! I appreciateb your input. It's a lot to think about. I'm so glad that you're happy with your decision. That's so important.

MaryScout

Hi Lukesmom17,

I hadn't heard of DIEP either, but I'm so glad that I learned. I had a ton of time between my diagnosis of ADH and when I met with the breast surgeon, so could do a lot of research. I browsed forums like this one, talked with friends and others who had gone through it, and ultimately decided I wanted a prophylactic mastectomy. Then I started researching options and decided that implants weren't for me. I know that lots of other people have and love them, but I also saw lots of problems that scared me. So with diep in mind, I knew that I wanted a place where they did the procedure routinely, that was covered by my insurance (I have Aetna), and that had an oncologist as part of the team. All of this lead me to the Center for Restorative Breast Surgery in New Orleans (https://www.breastcenter.com/). I did a consult with them, send in photos that were reviewed along with my path reports, and then got on their schedule (I figured I could always cancel). I'm from PA, but my husband is from NOLA and so all my in-laws are down there. My niece is a nurse, so I asked her to ask her colleagues about the place, and all of them said it's an excellent facility.

So with that surgery scheduled, I finally got to see the local surgeon, and she went through the routine of 6-month mammos/MRIs, tamoxifen, etc. She told me that there would also likely be many biopsies in my future, as I have dense breasts. So then, I told her I was interested in the possibility of PBMX, and she told me only about implants. When I told her I was interested in DIEP, she waved it off and told me I wasn't a candidate. When she told me to hop on the table for her to feel my breasts, my husband left the room. When he was outside, he called the NOLA breast center and told them what she had just said. They said she didn't know what she was talking about.

So I left that appointment and went with my gut and went to NOLA. They were fantastic. The whole thing. Yes, it's a surgery, but it's definitely do-able. I guess I'm lucky because my recovery was super quick. Two months after the surgery I was able to go on a scuba-diving trip! And I really love that my breasts feel so natural, they are warm, they are permanent, etc.

When I got back from NOLA and had time to reflect, I really began to feel hacked off at my local surgeon. She was misinformed and misleading. I am so grateful that I didn't follow her advice. When I got my "patient survey" from them about my experience, I called them to tell them what happened. I think they were scared that I was going to sue or something (which I wasn't) -- I just didn't want this surgeon to keep misinforming women like she tried to do with me. They waived every single bill.

There's a whole facebook group for women going to NOLA for their surgeries. DM me if you want me to add you. I have to add you as a friend so that I can add you to the group, but you can unfriend me right away after that if you want. You can also just DM me if you ever want to talk.

Best of luck with your decision. It's a big decision, and everyone is different! I really do respect every decision that people may make, including being conservative, having reconstruction with implants or DIEP, or going flat and fabulous!

Yours,

Mary

MaryScout

Hi Lukesmom17,

Sorry for another post here, but I realize I didn't answer your question about a separate procedure to remove the ADH. No, they didn't do a separate procedure. When they did the mastectomy they biopsied all of the tissue, and, at my request, a sentinel biopsy on the side with ADH. They found ADL in the other breast, along with some additional cysts and several papillomas. The mastecomy itself was performed by a breast oncologist, and the reconstruction by plastic surgeons -- all in the same surgery.

Yours,

Mary

exercise_guru

My mothers sister died of ovarian cancer in her teens. When I was diagnosed with breast cancer my mother and myself were both screened for every gene that is known for breast cancer , then a 2nd panel was done for ovarian cancer. It came back negative. As I am sure you have been told in your research, ovarian cancer is rare but deadly. The cases that are found at stage one are found by accident and the survival rate is high.

I would lobby for increased ovarian screening and act on the assumption that your mothers cancer had genetic influences. Because ovarian cancer is rare there is less research if that regarding genetics and OV cancer. If she had a gene that hasn't yet been discovered it would have a 50 percent chance of being passed to her daughter.

I think a consult with a OB that specializes in ovarian cancer is in order. I say this because perhaps in your situation removing the ovaries ar some point reduces your risk of both OV and BR cancer and improves your outcome more than the mastectomy.

I have had both at 42. Hated it and wouldn't recomend it. Menopause is awful and I now stress more about my implants than I would have about my breast tissue. I am Concerned about the longterm effects on my bones and heart from early menopause. In my case, the NFL mastectomy was due to dbl breast cancer couldnt save my right breast. The prophylactic ovary removal was strongly recommended because of moms familyhistory and that my father passed the Palb2 gene to me.

I am not sure if any of that is helpful. Feel free to reach our via pm. These are tough choices to make.

kber

I had a Bilateral Mastectomy - left for cancer and right prophylactic. One consideration, a mastectomy reduces, but does not 100% eliminate. your risk. I decided it was worth it, but you will still need to pay attention to your body.

Utahmom

I am 52 years old. I have an 8 year old precious little boy and wonderful husband.

October 2019, I was just diagnosed with Atypical Ductal Hyperplasia Associated with Calcifications in one breast. I have Mild Ductal Hyperplasia in the other breast diagnosed July 2014 with PASH. I have dense breast (3 out of 4), late 1st birth at 43 years old, fibrocystic breasts.

My Mother had Stage IV Skin Cancer and Stage IV Colon Cancer. Mom is still alive at 89. My aunt had Breast and Colon Cancer. My 2 other uncles had Colon Cancer. One uncle has Kidney disease now. Two 1st cousin had the exact same Breast Cancer on their pathology reports. One died. One is 10 year survivor.

My Dad had Prostrate Cancer and died at 93. One aunt had Breast Cancer, One aunt had Uterine Cancer, One aunt had Colon Cancer. All lived to late 80's to 105 years old. One 1st cousin had breast cancer (daughter of uterine cancer)

I am waiting on genetic testing and am being pressured to do excision. However, I am going to wait until I talk with the genetics counselor. My ADH associated with calcifications has a risk of recurrent of 30% or 50-60% to become cancerous.

I am at peace during the entire process. I knew something was wrong the day of the first mammogram. The care coordinator told me that I did not have cancer yet and I still have a chance to make my own choices. I know that she was telling me that once you are diagnosed with cancer, you have so much that you do not have a choice for your treatment. I am confused about where to go have this done. I need to research that more.

Can you share where you are on the journey and where you may have this done?

star2017

I was diagnosed with bc at 37 and decided to have the other breast removed since there was a history of bc in the family and I discovered I was brca2+.

I also had my ovaries removed.

My reconstructed breasts arent perfect and I do miss the old ones, but I think I made the right decision for me.

The harder struggle has been the early menopause, but I was terrified of ovarian cancer.

rlmessy

I am 52. The proud daughter of a 13 year breast cancer survivor. My mom was dx at 67 in 2006. At the time she was post menapausal and genetic testing was not recommended. We have no breast cancer in our family but do have colon, squamous cell and lymphoma.

I have recently been dx with BC and have my first genetic counseling appt tomorrow. I will complete those tests and use the results in my treatment plan.

As I sit typing this I am to do chemo first then surgery probably Feb/Mar. Right now I am planning a double mastectomy. If nothing changes I could do a lumpectomy

I have been dealing with breast issues since I was 21. I dont think a negative on the genetic testing is going to change my mind. But surgery is still a ways off for me so who knows.

I have told the other women in my family that I am going to do genetic testing and that I will only share results if they ask.

Yogatyme

Star, it sounds like you were very proactive. Good for you!! You are right to be terrified of ovarian cancer. I have had 2 close friends die from it and it is one hell of killer. Like pancreatic cancer, you often don’t have sx until the cancer is advanced

Utahmom

Thank you, Sweet Star for your response. My OB/GYN is the one who mentioned something called Lynch Syndrome being linked to Breast Cancer. There was a study out of Columbia January 2018 "Two New Breast Cancer Genes" that said if you have a family history with colon and several others types of cancer that there is a link.

I just finished my paperwork on genetic testing and go on Wednesday to meet with the counselor.

God be with you. Sending you love and light.

Utahmom

rlmessy,

Thank you for sharing your thoughts. I am a little frightened of the surgery itself. So many people say that the boobs will not be the same. One friend who has breast cancer and then it came back really quickly said that she did not have the option to save her nipples and her skin is not the same since radiation. She was excited for me to be able to have that option, if possible.

They want to excise the area to make sure old bad man cancer is not lurking under the tip of the iceberg. The thing is, if he is there, I want it all gone. The risk of recurrence scares me with the association of calcification. My BFF died at 40 because of recurrence. She said maybe she should have had the mastectomy 5 years prior. My cousin died of recurrence as well.

I will be praying for you and lifting you up. Thank you again and I appreciate you.