Questions for those who have considered prophylactic mastectomy

Mykidsmom & :Sunflower4444,

I sent both of you PM's.  Could you please, pretty, pretty please read then and possibly reply?  I would really truly appreciate it.  I have posted question after question and it's seems so hard to get responses.  :-(

Hi Sunflower,Lois, Jean, and others --

Sunflower your story is similar to mine!  Odd how those little cancers can hide in our dense tissue.  My cancer doctor didn't recommend the hormone therapy, however.  I am finally finished with the "fill" stage and will go in for my exchange March 3rd.  My tissue is expanded to the max - it's too thin to keep going any bigger (I am at about 600 cc). 

Wishing you all the very best Christmas!!

Jean,

Thanks - it does feel good to be done with the fills, but you're right - the expanders are NOT comfortable!  I was actually going to ask in another thread if the final implants feel better.  In answer to your question, my PS fills his patients to a size they like (for me that was 460 cc - which on my body translates into a nice "c" cup).  Then he overfills by 50%.  That would have been 675 cc for me, but my skin is getting too thin so we stopped.  I will receive a 400 to 425 cc implant in March, which should translate into a full B, small C cup on me.   The reason he has his patients wait 3 months is that the skin stretches fully and will stay stretched, giving the smaller implant a slight "droop" like a normal breast.   Also, the capsule that forms around the implant will be left in place and that reduces the chance of contracture later on.  He advocates daily massaging of the final implant to keep a capsule from tightening around it.   His photo results look really good.  I worry a little about rippling or dimpling from the smaller implant, but he doesn't think it will be a problem.  His photos aren't as plentiful, but they look similar to the results on this site:  http://www.101plasticsurgicenter.com/photo.cfm?c=14

I wish you well as you proceed through this whole process!  It takes a lot of patience, but these boards provide the encouragement to keep on when you feel like quitting.  

Thanks Psalmist - I have taken a lot from your posts. They have really helped me. And yes, I plan to be there w/ my family for Christmas - drains or not! - Jean

Loracc- From what I have heard the reason for a lumpectomy with IBC is there is a great possibility of the cancer spreading even microscopically to the lymph nodes so why take out the breasts at that point when if it reoccurs it will probably show up in another organ at another time and the chance of it showing up in the other breast is low. That is why I felt that the PM was only a good option for prevention and yes there are surgical risks but I felt that I would rather take those risks than take a potentially risky drug with a lot of side effects and still have a high risk of getting cancer. It is definitely an individual choice and should be different for everyone. I say follow your gut instinct because women are blessed with intuition and should use it!

Psalmist - What do you mean your ribcage caved in? That sounds kind of scarey. I have 150 cc so far and go for my first fill soon, probably next week. At this point I am not in too much pain, but I feel wierd. I am tired and sleep a lot, and I have a strange tightness around my chest wall. I also find the numbness to be a bit disconcerting, but all-in-all this is doable. Thanks for the information. - Jean

Hi Lois & Jean --

It sounds like you are doing really well.  I think it is important to ask a lot of questions from people who have been through it before.  This whole process is aptly described by Jean as "weird."  There isn't really any other word to explain the sensations that come with the recovery process from mastectomy and then expansion.   

I didn't mean to alarm anyone by saying my ribcage "caved in" but it has been somewhat pushed back by the implants.  On my first fill, I could feel the pressure pushing against my ribs and my PS reassured me that it is normal for women with expanders to have a slight indention of their ribcage by the time the process is completed.   I am at 600 cc right now, and am overfilled by 50%.  My final implant will be in the 400 to 425 cc range to make me a full B or small C.  I have a 3 month wait between final fill and exchange.  My PS believes it makes for a better outcome, as the tissues are stretched adequately.  But getting to this point has been time consuming and at times uncomfortable for a day or two. Like you Lois, I used pain relievers and did a lot of stretching.

The numbness is strange, too.  I have residual numbness along the back of my right shoulder and alongside the back of my armpit from the lymph dissection.  That is nerve damage that may or may not go away.  Oddly, on one of my fills about halfway through the process, I experienced a slight shooting pain in my armpit that didn't go away for a very long time.  Stretching helped.  I was worried that the expander was pinching a nerve and it may have been.  It finally went away.  I also had problems with my skin turning white on the right breast during fills.  After I was finally filled to 250 cc, my fills started going much slower.  My PS would have to back off after 55 cc on the right side because the pressure would cut off supply to a blood vessel in that area, which was in a part of my breast where the muscle didn't cover adequately at placement.  It was like clockwork - every time I went for a fill, at 55 cc the pink skin would turn white right there and he would back out the fluid until it turned pink again. It became a joke between us!  (Gotta laugh about the little things.) 

I stopped the fills at 600 cc b/c my PS felt my skin was getting too thin to continue.  600 is a lot - I look kind of awkward in clothing and wear a lot of black, camoflauge the size with scarves around my neck, and I wear blazers (I work in an office - and I am a small person, so these look like coconuts taped to my chest).  Can't wear my cute little tops right now without looking like Pamela Anderson with a bad boob job - they are very crooked.  I will need pocket revision at my exchange.

Every person is different.  Some breeze through this process much more quickly.  It has taken me a long time - but I certainly have the time!  The PBM gave me time, and Lois you are absolutely right - God is in control.   I'm just grateful for my experience and for every woman who has been spared breast cancer or who has survived it.  Here's to our RECOVERY!  : )  Happy New Year,

Lois,

How are you??? What is going on  with you lately?