Questions for those who have considered bilateral mastectomy

 Hi Lucky32, I am very sorry you are dealing with this.

I know there will be many gals chiming in to assist your decision, but remember that in the end, it is still your final call.

I'll also recommend www.breastfree.org, which was created by one of our very own here, Erika.  It is a site for women who have opted out of reconstruction.  There are some personal stories and some photos of going natural or going with forms (I also contributed there ) and there are discussions there as well.

I'm copying/pasting your questions and will give you my answers...short, but hopefully you can delve further with other sites and other posters.  BEST TO YOU in your trek through this, one of the hardest decisions we must make.

1. How did you arrive at your decision? (either to do it or not)  I had to make a pretty quick decision in terms of the fact I was diagnosed with invasive cancer.  I looked at websites, posts here, discussed with DH, and finally, what my own comfort level was with worry about recurrence and dealing with no boobs.  

2. How long did it take you to decide?  Within a month, I knew.

3. Did you talk to your family and friends during your decision-making process? I spoke with a friend who had the bilaterals and had reconstruction, I was lucky to have nurses who also had BC show me their "new breasts" and I spoke with my husband and sister.

4. If you did, how did they react? DH assumed I'd have lumpectomy but went with me to every appointment...I wanted to skip rads, so opted for bilaterals (and I'm a worrier).  When I told him I was leaning towards bilaterals, I think it concerned him...not because of my boobs being gone (he's not a boob guy ) but because he thought and imagined it being horribly traumatic for me.  My twin sis said she'd have opted for lumpectomy, my good friend had bilaterals and recon.  After our plastic surgeon visit, DH couldn't imagine going through that...and neither could I.  I made my decision from my gut (which also helped me get diagnosed).

5. How did your husband or partner feel about it?  My DH felt so bad for my getting the DX, but as he is not a boob guy, I think it hit him less hard than guys who enjoy boobs.  My DH actually said I looked younger with my new "flat chest" look! 

6. Are you satisfied with your decision?  VERY.   I recently found a new lump (turned out to just be fatty tissue), but I wonder how it would have been dealt with if I had reconstruction or how I would have felt if I still had my originals.   Only fleatingly do I fantasize about having cleavage and my old profile.  Sure, having had 34Ds, I miss the occasional "guys looking" at me, but frankly, it is soooooo much easier to exercise, to sleep, to dress....and no more bra shopping has huge advantages   (as you may have surmized, I go flat and love it).

Lucky, Let me give you some background as to how I came up with my decision. Aunt dx 1978 with OC, Mom dx 2001 BC, mom did genetic test found negative. I was dx in Jan 2005 with ADH (pre-cancer) in the left breast, dx Aug 2006 ADH in right breast, put on Tamox, told to consider preventive bilat mast by surgeon. April 2007 dx with DCIS in right. I had bilat mast with recon last June. Here are my answers to your questions:

1.         How did you arrive at your decision? (either to do it or not) Because of the family history I did not want to let the cancer get another chance to come back and possibly be more invasive.

2.         How long did it take you to decide? I thought about it for 3 or 4 months after the doctor approached me about it and had come to the decision to go ahead if I had another abnormal mammo. My 6 month mammo after the 2nd dx of ADH was abnormal again so my decision was made.

3.         Did you talk to your family and friends during your decision-making process? I spoke openly with my family about it and just before my mammo, Oprah had Renee Siler on her show and she spoke about her journey through bilat preventive mast. My mom had me go to her house to watch the later showing of Oprah that night so I would have a chance to watch it.

4.         If you did, how did they react? They were very open to the procedure. They wanted me to do what I felt I needed to do.

5.         How did your husband or partner feel about it? He was right there, He told me that he married me for me not just my boobs, and if i decided not to reconstruct, he would still be there for me.

6.         Are you satisfied with your decision? Getting ready for my one year anniversary of the mammo that changed my life, I am very happy that I went ahead with the surgery.

It is a very personal decision and we cannot tell you what you need to do for yourself. I am just answering the questions about why I did what I did. and they are all the same questions I asked myself in making my decision.

Sheila

Is your oncologist recommending mastectomy?  Hormonal treatment does not make LCIS go away so I am clueless to understand the statement "none worked"  In my mind it would work if you did not develop invasive cancer.  I take a hormonal therapy to prevent recurrence of invasive cancer and so far mine has worked.  I also so believe in getting another opinion from a completely different practice when deliberating though decisions like these.  Having mastectomy for invasive cancer versus having mastectomy for a lesion at increased risk for invasive cancer is difficult regardless of the circumstances.  I also think that no one can make that decision for you.  I can not imagine how difficult it must be to put yourself at worry each time you have tests done.  I personally feel that wide excisions and mastectomies result in deformities that are difficult if you have body image worries.  I also feel that some women are not in the least bothered about how it looks.  Again it totally is such a personal decision and one that you considering your very most personal reasons must make.  My family had left the decison up to me but clearly myself and they preferred that I would be able to be around and not dead.  LCIS does increase risk but if you look at papers there are many women that never develop invasive cancers.  It is unfortunate that medicine can not predict who will and become more proactive.  Clearly if you have the breast cancer gene (sorry I do not know if you do) the decision is swayed in mastectomies.  The bravest women I think in that case remove ovaries and breasts.  I would find that pretty hard personally but for me after cancer I had both done.  A decision that I am comfortable with at this point but even after both were done and with several complications that resulted in more surgery I had some reservations about what I had done.  I do understand this is difficult and hope whatever your decision you can find a resolution that is peaceful to your soul.  Best of luck.

 Hi Everyone,

  I was diagnosed with bc in 2003. I had lcis,ilc,and dcis all in one 7mm tumor located on the very outside edge of my left breast.The tumor was found with a pain I felt when a tech rolled over it with the wand while doing an ultrasound. (Less than 10% of bcs are found like this.)I was fine until a year ago when I felt the same pain in a different place on my left breast. I can press on the area and make the pain occur but it also "fires" on its own. For the last 3 months ,I now have the same pain in my right breast in 2 places as well. I have just had an mri that found no tumors but found undefined tissue "enhancement" in the exact places I'm having the pain. This last year was, in many ways, more stressfull than the year I was diagnosed. I am meeting with my surgeon on May 13th, and I believe I will ask for a prophelactic bilateral mastectomy with no reconstruction. I want to know if you all experienced a lot of pain and if you are comfortable with the way you look. I care about my appearance and I don't mind going breastless, but I want to look ok. Most of you seem happy with your decision. What question do you wish you had asked before you did the procedure? I had hoped to save my breasts but...now I want to save my life. To top it all off, I am post-menopausal but I have very dense breasts which is not good esp. for mammography. I disliked the mri; it is not something I would want to do again. I am afraid to do this (pbm) and afraid not

to do this. It helped to read your entries. Hope to read your

comments. Thanks to you all.

I chose a bilateral mast when it was discovered that a small spot turned into stage III, multifocal IDC. Since it went undetected with regular mammograms and then appeared to be a stage 0 or 1 with the diagnostics, it was considered reasonable to have a prophylactic mast of the other breast. I was not interested in recon and have not regretted that decision. I have a pair of 'fake' boobs but hardly ever wear them. They are quite comfortable but unnecessary for me.



There certainly are occassions when I do miss my breasts but not very often or for long. I don't have to worry about every ache I would have or if the test results were accurate. Since I had the second mast done at a later date, I experienced issues from being lopsided that I no longer have. I have a small lump that is being removed next week and I wonder how long it would have been hidden if I had reconstruction done.



I have no regrets and would make the same decision in a heartbeat. It is such a personal decision and you are the one who has to live with it.



Take Care

I am scheduled for prophylactic mastecomies this Tuesday - May 20th. 

How did I arrive at decision?  I am BRCA1 positive, lost my mother to breast cancer when I was 9 years old - she was 38.  Her mother had breast cancer in her 30's and died of ovarian in her early 50's.  My mothers sister had breast cancer in her 30's, ovarian in her late 30's and is still alive today.  My sister has breast cancer - is 48.  I am 45.  I am so ready to do this.  I feel like I am given an opportunity that my mother, grandmother, aunt and sister were never given.  I can be proactive rather than reactive.  That is my biggest reason.  My husband attended counseling with me - along with my brothers and sisters (4 out of 5 of us are BRCA1 positive) and is so supportive. 

2.  How long did it take me to decide?  I have been considering this for all of my adult life - 20 plus years.  I think I knew that I always wanted to do this - it just took me finding out that I was BRCA1 positive to commit to doing it and setting the date.

3.  Have I talked to family and friends?  You betcha.  Some people don't quite understand the decision.  That's allright.  They don't have to live with me - I have to live with me and I want to live.....  I think when you look at it from that perspective - you realize that you want the best odds to live a long and healthy life.  I want to see my grandchildren - something my mother was never given the opportunity to do.

Also - we found out during testing that we are of Ashkenazi Jew descent.  I tested positive for the 185delAG mutation - found in Jewish people.  Never would have thought that - asked my aunt and she said yes - that my great grandmother was jewish and married a Catholic and decided to raise their child as catholics. 

Know that your decision is your decision - there is no right or wrong - it is what you feel comfortable with.