Prophylactic breast surgery

I'll have a single, right-side mastectomy with no reconstruction in May. I have IDC and DCIS. ER+/PR+/HER2-. They got all of the invasive tumor (it was quite small - 4mm) with clean margins, but haven't been able to get clean margins on the DCIS after 2 lumpectomies. I had 4 sentinel nodes removed, but no involvement there. I have no breast cancer in my family, although there are other kinds - brain, thoracic, and lymphoma. That's why I chose the single side after consulting with MO, RO, and breast surgeon. I've started Anastrozole - been on it about 6 weeks now. All docs involved were fine with my waiting on surgery as my son is getting married in May. I'm a "least invasive, simplest way to go" kind of person, so this is right for me. Had I had lymph node involvement and needed chemo, I would have more strongly considered doing a double mx.

Talk openly and honestly with your docs and your family about your concerns and their opinions. Get all of your questions answered. If you have the time, take your time.

Peace and good luck to you!

HI Lighthouse123,

I had a prophylactic BMX. I still recall the moment I decided on this option and how I felt this lightness descend on me. I know it's a very personal decision with so many factors. If I listed mine out there's a good chance they would be different than everyone else's.

I feel I've been reassured of this decision several times recently and so I'm personally at peace with this for myself. My DH also was very supportive of this choice and prior to surgery when I had a few wavering moments he helped remind me of the reasons. This was an important piece for me.

Good luck making your decision! I do think listing reasons or identifying your pros/cons may lead you to the best decision for yourself.

Hi lighthouse 123,

I will be having a prophylactic right breast mastectomy on April 26, the cancer is currently in my left breast. For me, the decision was not an easy one but was made with the fact that my tumour (6cm+) was not detected by mammogram, MRI or CT scan. The only imagining technique that picked it up was the ultrasound. For me, it was not possible to ever have these diagnostic tests again in the future and have any confidence in the results. I am BRCA- as well.

As StaceySue2U inferred, no doctor can remove 100% of all the breast tissue therefore there is no 100% guarantee that you won't get breast cancer again.

The decision to have UMX or BMX is highly personal and not easy at times. Much strength as you make this decision and if you have any other questions about my decision, please feel free to contact me.

Jacklin

What do your doctors say about getting genetic testing? That's what made up my mind. My family is rife with cancers on both sides, including an aunt who had BC at 24~ I turned out to have two gene mutations (PALB2 and Chek2) which can cause breast, colon, and other cancers. Had I known that before I had my lumpectomy, I would have gone straight to BMX from the get-go.

I have to say, I have had a difficult recovery. I have had all kinds of wound healing issues and I still have open wounds 6-1/2 weeks post surgery. Thank goodness that I didn't have traditional reconstruction because I would have lost it all. So, I guess I'm saying that anything can happen. I know that most women don't go through the hell that I've been through with this BMX, but it can and does happen. At the rate they are going, I should be completely healed by June (my surgery was Feb 4!)

Reasons I chose double mastectomy.

I was diagnosed in late December and had BMX with tissue expanders in early February.

I have a strong strong family history of breast ca including but not limited to my younger sister, paternal GM, maternal/paternal aunts, two maternal first degree cousins and one paternal first degree cousin. My own mother passed at a young age from an accident so we don't know her history. I tested negative for the BRCA gene mutations but I did test positive for mutations on the ATM and STK11 genes of uncertain significance although the former is more suspicious for breast ca than is the latter.

I had my first surgical breast bx at the age of 16 because of a palpable lump. Over the years, I had multiple biopsies for lumps or abnormal mammos. When my sister had breast ca 19 yrs ago, the breast screening and biopsies escalated. Through it all, I never felt overly concerned that I had breast ca and just took everything in stride. I finally hit menopause and things calmed down for several years, until I felt the shallow, pea-size lump. The lump was never visible on two mammos 12-months apart even though the tech taped metal markers over the lump (yes, I said 12-months, but that's another story). I came to realize that going forward, would have little confidence in mammos.

My biopsy revealed IDC with tubular features which is a good breast ca to have, I'm told. However I read in Dr. Susan Love's Breast Book that tubular ca is associated with a 30-ish % incidence of another ca in the same breast or contralateral breast. This seemed high to me.

While I didn't actually have pure tubular beast ca, my IDC did have strong tubular features, was small at 0.8mm, ER/PR + HER2 - . My pathology also showed a papillary carcinoma 0.6mm and a lobular DCIS, all three in the same breast but easily could have been in the other breast so I feel good about my choice. As much as possible of the pre-cancerous breast tissue is gone and I have reduced my chance of a new breast ca down to about about 1%.

It certainly isn't an easy decision but then nothing about cancer is easy.

Best wishes your way.