Questions for those who have considered prophylactic mastectomy

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  • 2new1s
    2new1s Member Posts: 1,995
    edited November 2008

    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.  :-(

  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited November 2008

    Jen - I just sent you a PM. Good luck my dear. And remember we are all here for you and one another! - Jean

  • psalmist
    psalmist Member Posts: 214
    edited November 2008

    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!!

  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited December 2008

    Psalmist - Congratulations on your last fill. I bet that feels good. I have no idea what size 600 cc is, but I bet it is just right. As a newbie to all this, how come you have to wait until March for the final placement of your implant? Just wondering. I understand that the expanders are not as comfortable as the final implant. Thanks for the support. - Jean

  • psalmist
    psalmist Member Posts: 214
    edited December 2008

    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.  

  • psalmist
    psalmist Member Posts: 214
    edited December 2008

    P.S. Jean - Wishing you God's peace and strength on Dec 16th.  I pray you have your drains out for Christmas (mine were in a week) but if not, pin them to your robe and celebrate anyway!!!  : )  Celebrate not being a "pink lady in the park" someday.  (My new cheer for myself - comes from a park I saw in October with rows and rows of pink wooden silhouettes to commemorate all the women of that city who had died of breast cancer.)

  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited December 2008

    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

  • lopalermo
    lopalermo Member Posts: 56
    edited December 2008

    Psalmist and all,

    This has been a great chat group.  I had my final two drains taken out Wed. and then they filled expanders with 30ccm (they only did 30 to make sure we didn't put too much stress on the nipples, since I got to do the nipple sparing technique).  The PS also added some alloderm to help with the area underneath the breast that will help support the implants better. I have not really had any pain at all but I am glad to hear from everyone that the regular implants feel better than the expanders.  It was kinda fun to see that I have a little more up top even with just the 30cc fill.  The PS said after the implants are placed she may go back and take some fat from somewhere else to fill in any rippling effect I might have in the end. One thing I did do with the drains was to put them onto a belt (my drain bulbs had plastic loops on them) and just put the belt around my waist- I had trouble having the drains on the drain holder that goes around the neck that they gave me.  I'm glad to hear everyone doing so well.  Some of the other sites I have been on are pretty depressing.  Did everyone take pain meds right before the PS put fills in each time and if you did what did you take?

    Lois

  • karen9516
    karen9516 Member Posts: 155
    edited December 2008

    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
    psalmist Member Posts: 214
    edited December 2008

    Hi everyone -

    Busy month!  With Christmas services to plan and our daughter's wedding this month we have been very busy.  I also work full time, so I haven't been on this website for a long time.  Hope you all enjoyed a very merry Christmas!  

    Lois, I alternated Tylenol and Ibuprofen for a day or so after my fills, especially the first few.  My PS expanded me to 100 on the first fill, then 75, then we settled in at 60 each time.  My ribcage caved in the first few times, so there was extra pressure and some pain.  After a couple of days, it would decrease and I could feel weird little sensations as things loosened up.  It's such an interesting process and lots of strange feelings.  I'm so ready to be rid of the expanders - they are still uncomfortable at times and they don't move at all!  March 3rd is my exchange.  Looking forward to it very much!!

  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited December 2008

    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

  • lopalermo
    lopalermo Member Posts: 56
    edited December 2008

    Hi Psalmist,

    I seem to do ok with aleve or motrin.  I don't know how much I started with as far as cc's in the expander but so far I have had a total of four fills totaling 230cc's.  It feels a little tight and hurts a little the first day after the fill and then I am ok.  What I'm really having trouble with is my right shoulder muscle.  I've been waiting two weeks for the PT at MDAnderson to call me with an appt. time.  Guess I need to go camp out down there.  I've been stretching it and working out some aerobically.  It is strange to be numb but it doesn't really bother me- I've heard some of the feeling comes back over time.  The tightness makes me feel like I already have a bra on- go figure.  How is everyone else doing?  Hope everyone had a Merry Christmas.

    I am glad I had the PBM done and don't miss my breasts for a minute.  I guess it's like some people say- it is what it is and God really is in control.

    Lois 

  • psalmist
    psalmist Member Posts: 214
    edited December 2008

    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,

  • lopalermo
    lopalermo Member Posts: 56
    edited December 2008

    Psalmist,

    Thanks so much for your description on how you look with expanded expanders haha! Coconuts taped on the chest- I couldn't quite put my finger on it when people asked now I have the answer.  I was at 330ccs before the fill on Monday.  I don't know how much she added but it definitely kept me up last night.  I tried to sleep on my side as usual and darn if that breast didn't cut the circulation off on my arm haha! never had that problem before.  My goal is to just be a full C like I was before.  New breasts, new experiences, new journey and a great way to start the new year.  Happy New Year to you too!

    Lois 

  • psalmist
    psalmist Member Posts: 214
    edited February 2009

    Lois,

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

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