Questions for those who have considered prophylactic mastectomy

Hi Peaches,

What have you finally decided to do?  What have your doctors said?

Hi Lucky,

What have you decided to do?  What did the surgeons say?

I had ultrasounds and mammograms done at MD Anderson 2 weeks ago and met with one of the oncologist surgeons.  I will be going for further genetic testing (BRCA tests came up negative). It seems there are other genetic testing you can do- the one I will be doing is for thyroid nodules and breast cancer.  I will also be meeting with a plastic surgeon at MD Anderson and one of their psychiatrists before having surgery.  They are also comparing past mammograms with the ones they took since they also found calcifications in the other breast. They may be biopsying some of those. 

Let me know what y'all are up to.

Lois 

Hi Leaf,

I will definitely be looking up the syndromes on the internet.  I guess if I do it and find out it's positive I will have one more thing to add as to why I'm seriously considering a prophylatic bilateral mastectomy.  The onc. surgeon also said she would probably be doing a nipple sparing technique.  Sounded good to me. 

Lois

lopalermo,

I have decided to have a consultation with a second bs and ps in July. My mind is still leaning toward having the surgery, but not until next year. Since my last tests did not require biopsy, and my next is not until Feb, I am feeling okay with this for now. My dh says that he thinks that I have good reason to have the surgery, but will not influence me either way.

The new bs and ps are in my insurance plan, unlike the ps I saw in Jan. I am interested in hearing what they recommend.

Anne

lucky32, having second thoughts is very common. (as I certainly know!) I came to realize that it is not a situation where I have to decide right now. If I already do have bc, it must be very small and slow. If I don't, then I have even more time. So, take your time to talk to the surgeon. It's not a waste. Look at it as part of your education. We are in the process of getting our BC BS.

Anne

Hi Ladies,

New here but checked in since I too am considering prophylactic double mastectomies.

I have had very dense and fibrocystic breasts my whole life, (54 now)  I also had stomach cancer with partial removal at 38, then recurance and total removal (gastrectomy) at 43.  As my brother also died of stomach cancer at 36 we have been trying to determine a genetic link.

Well about 3 months ago I get a call from a research center in Canada...Actually thru my docs here in Illinois.  I have a newly discovered mutation of the e-cadherin gene called CDH1.

In addition to an 83% likelyhood of developing gastric cancer (which I had) I am at a 42-50% risk of deveoping lobular breast cancer. I am now followed by Northwestern University's breast center. Hence the tamoxifen.  But seriously if you have any lobular cancer history get tested for this gene.  

P.S.  I have had more of an emotional response to my decision than I expected - I left the PS office shaking (as did my husband) and have gotten teary eyed reading this website and realizing this is irreversible and will forever take away my breasts.  But inside my gut I have a confidence that this is right.  I think every woman who arrives at this decision needs to know her body well and walk in with her eyes wide open.  Research, research, research.  I have a lot of foreign things growing inside of me (large, multiple fibroids in the uterus, cystic breasts, cystic ovaries -- LCIS) and my mammos invariably show microcalfications or other changes.  The hyper surveillance gets in the way of my life, and ultimately, I'm just done.  I don't want to worry anymore, and I don't want my husband to worry anymore.

welcome to the website psalmist- Please continue to share your experiences with us as you go through your surgery and recovery.  I'm really close to bilateral mastectomy and reconstruction myself but probably not until Aug.  I'll know after my appts. at MD Anderson on July 22 and 23.

Chrsily1- thanks for the heads up on CDH1.  I see a genetics counselor on July 22 and have already talked to oncologist surgeon about the pten mutant gene test.

Peaches,lucky32 and leaf- what are y'all up to?

Lois

Hi Anne,

My ins. company paid for BRCA testing (came out negative) and breast MRI which lead to a lumpectomy showing two areas of atypical intraductal hyperplasia, papillomatosis and LCIS.  Interstingly enough I had just had a mammogram 5 mos. prior to the breast MRI and it showed absolutely nothing!!!!!!!!  I actually recieved a letter from the breast clinic saying I didn't need to return for another year.  The Dr. and I only decided to do the BRCA testing and breast MRI because I had a mother that died of breast cancer at the age of 56 and a younger sister being diagnosed with ovarian cancer last year. Even though it is scary to find out I'd rather find out things early and be preventive minded hince I am 95% sure I will do the prophylactic bilateral mastectomy by the end of the year with reconstructive surgery.  If finding out I have a mutant gene helps other family members and science technology I'm all for it.

What have you done with the LCIS?

Lois

Lois--I'm not quite sure I understand your question about "what have you done with the LCIS?" But what I've been doing is this: alternating digital mammos with MRIs every 6 months, seeing my oncologist every 6 months for CBEs on the opposite schedule (so I'm essentially "seen" by some method every 3 months), I see my gyn once a year (which includes another CBE), do frequent SBEs, and take tamoxifen to help prevent an invasive bc in the future. I'm also trying to eat healthier and exercise more. I will be taking a short break after finishing up the 5 years of tamox in October, then will probably go on Evista (for further prevention of invasive bc; it will also help prevent any osteoporosis). My initial diagnosis came after suspicious microcalcifications were seen on mammo, then f/u with a stereotactic core biopsy and a wide excisional lumpectomy.

Anne

Lois---I have been very lucky--my initial SEs were pretty mild overall; annoying, but certainly manageable. Mainly hot flashes, some mild insomnia, and some achiness, but the way I look at it, I could've had similar symptoms with natural menopause anyway. Since so many of us that take these meds are around perimenopause/ menopause age,  it's sometimes hard to distinguish what SEs are from the medication and what ones are from the loss of estrogen. But I had immediate surgical menopause from a total hysterectomy about 18 months after going on tamox (not by choice-- I had ruptured ovarian cysts), so my SEs increased directly due to the sudden dramatic drop in estrogen. (they were not bad at all before my surgery). I would just recommend to anyone taking tamox, to have a yearly transvaginal ultrasound to monitor both the uterine lining and the ovaries.  I haven't had to have any other biopsies or lumpectomies (other than the initial ones)--I did have some areas they were watching on MRI, but all f/u mammos/US/MRIs have been clear. I do OK living with the high risk for the most part, it's just stressful at testing time.  I do like knowing they are watching me so closely, that if anything were to crop up, they would most likely find it very early when it is more easily treated. While I don't really like the idea of starting another long term medication, taking the Evista will give me more of a sense of security, and a feeling that I'm doing something very proactive in trying to prevent an invasive bc in the future.

Anne

Lucky,  I was told 8 years ago that I had LCIS.  I have had may biopsies and a (3 lump) lumpectomy.  My last Mammogram showed a dramatic change in my left breast.  As my surgeon said to me "I am loaded with small calcifications".  My breast are also very dense and very hard to read.  They biopsied one and it came back with the cancer marker.  Because these calcifications are all around the same size, they feel that they are the same.  I cannot take an MRI to diagnose better or to be able to monitor them in the future.  I knew that this day would come and I am faced with the same decision.  My daughter just had my third grandchild and I am not willing to risk my health and not being able to see these children grow up.  I do not have a family background because I am adopted.  I have an appointment with an PS next week.  And trying to make an appointment with an Oncologist.  I don't do well on Tamoxafin.  After I have met with all these docs, I will go back to my surgeon and make my decision.  I did discus this with my friends today at lunch.  It's hard when you really don't have a cancer diagnosis.  Even the MRI tech didn't understand what I was saying.  So when you tell someone that you need a PBM but that you don't have cancer they think that your nuts or just don't understand.  But one of my friends lost a friend to breast cancer who did have LCIS.  She chose not to remove any of the cancer marker lumps and to monitor them.  Within a few years she had full blown cancer and died.  I keep thinking of her and what her choices were.  I am very afraid not to make the right choise.  I know that I trust my surgeon and his opinoins.  Thats what it boil down to is whos opinion you trust.  For the most my family thinks that I should do the PBM.  My husband (a BOOB man) wants me to do it also.  He thinks it will give us more time together.  He was very sweet.  Good luck in your decision and keep us posted.

Hope