8yrs later I am gearing up for double Mastectomy
 

It has been 8 1/2 years since my Her2 + diagnosis. I always looked back and questioned if I should have had a mastectomy. Due to the damage from radiation to my cancer breast and the fact that for the last 1 1/2 years I have been walking around with an implanted marker in my "healthy" breast I have made the decision to have a double mastectomy with immediate reconstruction using the diep tram flap method on October 17. I did not come by my decision lightly. I deliberated over this decision for many years. I am finally well enough to finally do this huge surgery. I had so many other health issues and surgeries over the past 8 years that took priority over this. I'm happy I had the extra time to devote to educating myself enough to make a good decision for me. It also gave me time to pick a team I feel very confident in trusting with my care. I am at peace with my decision as I feel it was the best option for me. Please keep me in your thoughts and prayers on October 17 as well as during my long recovery. I will be in the hospital for 4 nights 2 of which will be in the ICU and then will be recuperating at home with help from family and friends. The surgery will be at Evanston Hospital in Evanston Illinois and both my breast surgeon, Dr Yao and plastic surgeon, Dr Geoffrey Fenner will be doing their respective parts of the surgery. Thank you for your support and please feel free to give your input and/or share your experiences with the same surgery. Hope to hear from as many of you as possible. Will be in touch after the surgery as soon as I can. Sure hope my body can handle this and being under anesthesia for 9 hours.

Re: 8yrs later I am gearing up for double Mastectomy
 

I will be thinking of you Rina on Oct. 17th - that is my 32nd wedding anniversary, and the day after I reach 8 years "out" status. A mazeldic (lucky) day!

Good luck and best wishes for a speedy and complete recovery.

all the best
caya

Re: 8yrs later I am gearing up for double Mastectomy
 

Praying already for you Rina, strength for you, quick healing...no complications/infections...wisdom for the doctors...all the details to God!!
I've REALLY been interested in this surgery...just not sure IF I have enough fat to give...I'm 5'3, usually weigh 120. I live in Nebraska...can have have it done at the UNMC, University of Nebraska Medical Center...yet have had a few problems with prior reconstruction with my PS, yet he feels I can do this...I have yet to have the CT of my abdomen, etc...
Anyhow...will look forward to your updates...so happy you've come this far...GOOD FOR YOU!! :)

Re: 8yrs later I am gearing up for double Mastectomy
 

Hope everything went well! Best wishes for a speedy recovery.

Jacqueline

Re: 8yrs later I am gearing up for double Mastectomy
 

I am sure all went well. I ponder the same decision as you all the time.

Gain your strength back and we will "see" you here again soon.

Re: 8yrs later I am gearing up for double Mastectomy
 

Wishing you an easy time with the surgery and recovery.

I had the TRAM, and walked bent over for a month until it stretched!

Sure is nice to have a flat tummy.

I'm sure you will look and feel beautiful when it is healed.

Re: 8yrs later I am gearing up for double Mastectomy
 

On 10/17/14 I underwent a double mastectomy with immediate reconstruction using the diep flap skin and nipple sparing surgery. It failed and about a week later I was back in the OR for debridement surgery and was left with open wounds and loss of the flap on the right side only. The left side suffered less but the reconstructed breast is too large, too stiff and spread in width due to the wound which has healed well. My options on the right when healing is done which should be soon, are to let wound close and just not try any further reconstruction, take from back and try expander for future implant. The left breast needs further work as well, a lift and reduction. I'm not totally sorry I started this entire process as the biopsies showed a lot of atypical cells and a small neoplasm, however this has been an ongoing nightmare since surgery and I am still healing on the right. I feel so blind-sided by all of this and was so sick for the first 6 weeks. Finally feeling like myself again after suffering with wound healing, temperatures and emotional issues dealing with the horrible way I looked. Chose a highly reputable plastic surgeon in Chicago suburbs based on drs recommendations and patient and friend referrals. He assures me he will get me looking good again but I am so fearful of failure. Struggling with I let this happen to me. If you read my past history on here, I have been through a lot and always did well but I feel I dropped the ball on this one as did the drs because they should have advised me against skin and nipple sparing especially because I had radiation. I am not feeling very confident about a better outcome and so worried. Wondering if I can deal with just no breasts at all. Feeling like I can't. Any thoughts out there or others who have experienced similar poor experiences? So undecided what route to follow.

Re: 8yrs later I am gearing up for double Mastectomy
 

Rina - I'm so sorry for the experience you've had. It was a year ago that I was told that I had abnormal cells in my breast and needed a biopsy to determine whether I had cancer or not. I made the decision right then that if I did have cancer, I wanted a double mastectomy without reconstruction. When I was told I did in fact have cancer, that's what I told anyone who would listen to me. And that's what I did. I did listen to doctors who discussed the possibility of reconstruction but I never saw a plastic surgeon because it would've meant delaying the mastectomy and that was my number one priority from being told I had cancer. Plus, at no time was I giving serious consideration to reconstruction. Now, while I don't regret my decision (nor do I have second thoughts about it), there are things that come into play that some times get me down about it. For example, I'm single and would like to date again some day. On what date do you bring up the fact that you don't have breasts? It's going to scare off some fellas and I don't want to be too attached if they're going to react badly but I don't think it's necessarily first date conversation either. Then, a few months ago I was watching a talk show when some celebrity came out in this beautiful dress. I was imagining making a much cheaper version of the dress for myself when I realized that my prosthetics would probably be showing in the dress because it was a little low cut. It bothered me, not for long but it did bother me. One aspect of not having breasts that I like is that I have the choice of what size I will be on a given day. Right now I only have one set of prosthetics but I envision having many pairs in various sizes and having some fun with them. I know the decision I made isn't for everyone and ultimately you're the one that has to live with whatever decision you make but for me I feel that having no breasts gives me more options. The bottom line is you don't have to rush a decision here, take your time and decide what it is you want and what you can live with. Once you know what that is, then you can act on it.

Re: 8yrs later I am gearing up for double Mastectomy
 

Rina, I am so sorry you had to experience this. I too researched forever what to do after my mastectomy and had decided on the BRAVA procedure which is done by Dr. Khouri, but now also by many other doctors who have trained with him throughout the States. It is a fat grafting procedure that is especially recommended for radiated breast as they are more difficult to operate on and to heal. He will do lipo on you and take that fat and inject it in your breast with two to three procedures. He prepares the breast for this fat cell transplant with the BRAVA device to assure the fat will live. You will have sensation in it and it will be "jiggly" like it used to be (lol).
Good luck on whatever you decide to do!

Re: 8yrs later I am gearing up for double Mastectomy
 

Tina, one thing that struck me about your post was your feeling "how did I let this happen to me?" If I read it correctly. I identified with you because after I had part of my lung removed after a misdiagnosis of Cancer, I spent an inordinate amount if time berating myself for letting this get by me. For not handling it differently (although I don't know how I coukd have prevented a pathologist's error!). I felt it had gotten out of my control. I cried a lot. In retrospect I realize my reaction was largely driven by the narcotics I was on and by my sense of vulnerability We try so hard during this cancer experience to do the right thing and make fact based decisions. Then everything goes sideways!
I don't know how to help you make your next decisions. I can say that I opted to not have any reconstruction and have never regretted that decision. I am older than you and that may have been a factor. I just knew I didn't want anymore surgery or procedures I'm very comfortable I don't even use heavy prosthesis anymore but prefer slightly padded bras like Coobie
I wish you the best in figuring out your path. Stay open to "signs" from others. Keep the faithBonnie

Re: 8yrs later I am gearing up for double Mastectomy
 

Thanks Bonnie for sharing your experience with me. I am glad you have found a comfortable place for yourself. At this point I feel I must try to fix this but not until I am completely healed. One breast is completely healed and the other is almost completely healed. I am crying more then usual too but not on narcotics and haven't been for months. I'm just so overwhelmed with this ongoing nightmare. The latest is I am seeing a PT who specializes in lymphadema because I still have so much pain in my arms shoulders and chest. No one has told me I have lymphadema and I plan on confronting my PS next visit. The problems just keep on coming as a result of me feeling I dropped the ball on this one. I do blame myself for what happened to me because I feel unlike other times I have had surgery, I rushed into it before I had all the self education and facts. Still very upset with myself over this. Also upset I didn't get better guidance from my PS.

Re: 8yrs later I am gearing up for double Mastectomy
 

Hi Rinaina - I just wanted to say that I'm sorry you've had to go through all this. Please try to not be so hard on yourself. You did what you thought was best, unfortunately, it didn't go well for you. For that I am sorry. I am praying for you. Hugs and love.

Re: 8yrs later I am gearing up for double Mastectomy
 

Thank you for all the replies and support. It feels so good to have so many caring sisters during this most difficult and unfortunate times in my life. I haven't been coping well and with each set back my coping skills have dwindled but I do have the faith that this will somehow get resolved. I plan on getting 2 other opinions which should boost my confidence when in comes time to make a decision. This has been an ongoing nightmare since Oct 17 with no end in site but I know that there will be. Thank you everyone for your continued support and help. You are so valued.