No reconstruction- Happy w/your decision?

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited December 2011

    I don't know where you live bluebird, but I live in Canada and we get pretty cold weather. I've heard from women who can FEEL the coldness of their implants!!! Yikes!!! I've also wondered about the one-step surgery, but how is the implant going to be held in place? The TE's are for that, so how is your surgeon going to make yours stay on the front of your chest and not fall into your pits?

  • crystalphm
    crystalphm Member Posts: 1,138
    edited December 2011

    maryelizabeth, I am wishing you a good recovery. Hot tea will help your throat, or ice chips or both....I had terrible acid reflux too...and I just took tums to try to get it to calm down. Check in with a mastectomy group here to get all the info on avoiding constipation problems...it is a huge problem for many of us....

    Stay in touch!!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2011

    The first winter with my implants, those mothers were COLD!! The following two winters were not so bad. I am finding that after having my implants removed and deconstructed this year that I am feeling the cold again big time! No padding or insulation since I am going form free. Hope it's just another adjustment.



    From what I have read, the one step recon uses a "sling" to hold the implant. The sling is usually created using some form of dermal matrix, such as alloderm. This helps avoid the expansion phase, but I believe that smaller implants are used with this process. Each type of implant recon has its own issues, pros and cons.

  • krcll
    krcll Member Posts: 343
    edited January 2012

    maryelizabeth- I just wanted to check up on you and see how you are doing? I remember when you were asking around trying to decide between a lumpectomy/radiation and a mastectomy. You need time to grieve loosing a breast and learn how deal with the new clothing requirements. Have you tried playing yet? I hope things are going well.

    From a fellow musician

  • rianne2580
    rianne2580 Member Posts: 191
    edited January 2012

    MaryElizabeth,

    I had one MX in March 2011. I feel like I look like a little boy on that side. My LB is small anyways. I encourage you to message the scar and the entire area. Move the skin around with your hand so it does not adhere to the muscle. My physical therapist taught me this procedure and I do it everyday. Those nerve endings will be sensitive for a very long time, like a year or more. The more you message and manipulate the area, the better. Scar tissue is a huge problem and you'll sleep better and be more comfortable in your clothes and if you choose to wear a FB. Also, stretch often. You don't have to stretch for a long time, just stretch as much as you can tolerate. My surgeon had me doing stretching the day after my surgery. Frozen shoulder is no fun, although I did not get one but have heard about it.

     I personally feel recon makes all this harder and I'm glad I did not get recon.

    I wish you the very best and know that many of us are right in there with you!

    Rianne 

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited January 2012

    My nerve endings were only irritating as long as it took for the nerves to regenerate...a couple of weeks. I guess I was lucky! I think that massaging the area helps offset LE as well....

  • Linda1966
    Linda1966 Member Posts: 633
    edited January 2012

    I still get little jabs every now and then and its 3 years on. Still havent had recon and am undecided as to whether I ever will. The prosthetic does a good job and its second nature now. Grab bra, pop prosthetic in and off I go. Admit it was a pain to throw out some of my favorite clothes. Amazing how difficult it is to find tops that dont show at least a minimum of cleavage. Now soon as I find a style that doesnt dip into the cleavage area I buy as many as I can in different colours lol. Dont think any clothes designers have had BC cause the stores sure dont cater for us. Thank god we can get bras & chamisoles designed for our prosthetics.

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited January 2012

    I only get an angry TUG!! when I reach back behind me a certain way. My body is telling me that whatever muscle I used to use, isn't there for me anymore!! Or when I reach down to say, check out what's on the closet floor.

  • nwest125
    nwest125 Member Posts: 240
    edited January 2012

    just wondering about the camisoles form TLC, The one with the lace looks comfy, has anyone tried those yet, thinking about getting some and wear instead of my bras.

    Nancy

  • Starak
    Starak Member Posts: 536
    edited January 2012

    Nancy, You might check with Erica (real name Barbara) who owns the Breastfree.org site.  She personally wears alot of camisoles and regularly asks for reviews and input from others. I am no help as I only wear a cami as a pajama top in the summer.

    Barbara

  • nwest125
    nwest125 Member Posts: 240
    edited January 2012

    Thanks Starak I e-mailed  Erica

    Nancy

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited January 2012

    Nancy, the biggest issue is seams and/or the itchiness from lace. Don't buy multiples until you know what works for you. I have a lace that works, it's just a cheap polyester cami but looks amazing!! Sometimes you can get away with wearing the cami inside/out to avoid seams against your skin.

  • KeepingFaith69
    KeepingFaith69 Member Posts: 508
    edited January 2012

    Hi,

    I was 40 when diagnosed on 2010 and turned 42 in December 2011.

    I was a D cup prior to having a mastectomy.  A mastectomy was recommended and I chose a bilateral (both came off).

    Getting through treatment was a priority for me and I chose to get a reconstruction 'later'.
    I was scheduled to discuss reconstruction options in November and had chosen to defer any extra surgery for another two years.

    After having a recurrence (November 2011) reconstruction is again not a priority for me.

    I wear foobs when I remember and have had to adjust my choice of dresses. I must admit that i really miss wearing strapless tops and tastfully low cut tops, but I manage.

    For me, living an extra day to see my husband and children is a highlight.

    One day I may have a reconstruction - but it is way down my list of priorities.

    I do miss my boobies sometimes.  However, I know that my boobs (although asthetically a positive) don't make me.  My beauty and attitude comes from within.  And although he misses them (he is a man after all), my husband loves me exactly as I am.

    I hope that helps : )

  • KeepingFaith69
    KeepingFaith69 Member Posts: 508
    edited January 2012

    In answer to the question - YES I am happy with the choice I made.

    I am also happy that I:
    - chose to shave my hair off before it fell out (and scared the children)
    - chose NOT to wear a wig or head coverings whilst taking chemo
    - ROCKED my bald head.

    I have learned lots about myself since diagnosis and one of the biggest things is that I have GUTS.

    I love me exactly as I am....... such a liberating feeling

  • Murmist
    Murmist Member Posts: 32
    edited January 2012

    I am noticing that many of you are recommending massage to prevent the skin from adhereing to the chest wall and reduce the chances of LE.  Was it suggested that you start right away after bandages were removed? I have full ROM of the right side, but my left side remains swollen even after the drains were removed. I have not gotten as much info from the BS as I would have liked.  She just says everyhting looks normal, get fitted in 3 months if I choose and see her in 6 months. I am 6 weeks out from surgery now and still loving being breast-free, but I am not sure what is "normal".

  • Momine
    Momine Member Posts: 7,859
    edited January 2012

    Murmist, my own experience and my reading here tell me that many BSs do a poor job with follow-up care. I would strongly urge you to find a physical therapist who specializes in mastectomy patients and who knows about LE to help you. A good therapist can help get the swelling down, can show you some exercises to do and can help you feel better sooner. 

  • Murmist
    Murmist Member Posts: 32
    edited January 2012

    Momine:  Thanks for the info.  I am so ready to get back into my life full throttle with no physical limitations!

  • Momine
    Momine Member Posts: 7,859
    edited January 2012

    Good luck with it. I am assuming you did not lose lymph nodes, so your chances of getting back to normal function should be really, really good.

    My surgery was more involved, with nodes lost on both sides, but my physical therapist has really helped. 

  • jblcsw10
    jblcsw10 Member Posts: 174
    edited January 2012

    Hi All, I met with my PS yesterday to tell him of my decision to removed the remaining TE and forego further reconstruction. I was prepared for him to argue and try to convince me to change my mind. I was pleasantly surprised at his response which was very supportive of my decision. I am scheduled for the surgery 2 weeks from today. I never thought I would be looking forward to deconstructing but I can hardly wait!  

  • Murmist
    Murmist Member Posts: 32
    edited January 2012

    Momine: I had a BMX with SNB..They took 1 from the left and 4 from the right.  Oddly enough, it is the left side that is the problem child! I am going to take the proactive approach today and call the BS today to talk about going to the LE Clinic here so that I can be comfortable both physically and mentally.

  • Erica3681
    Erica3681 Member Posts: 1,916
    edited January 2012

    Hi Jane,

    I'm glad your PS was understanding and supportive about your decision to remove your TE. It's great that he will do the deconstruction surgery himself since, being a PS, he'll know how to make the surgery site nice and neat. I probably don't need to say this, but if you want a nice flat chest, please make sure he plans to remove all the extra skin and gives you as cosmetically-pleasing a result as possible.

    Good luck with the surgery and please let us know how it goes.

    Barbara

  • Momine
    Momine Member Posts: 7,859
    edited January 2012

    Jane, best of luck with it. I hope the deconstruction will make you more comfortable.

    Murmist, if you had nodes taken, definitely get ye to an LE therapist forthwith. You may never have a problem, but this is an area where taking the bull by the horns is definitely to your advantage. 

  • shippy41
    shippy41 Member Posts: 49
    edited January 2012

    Hi I just wanted to share some good news. I had an ekg a month ago after having my implants removed this summer. The technician was new and the dr said that the machine shows that i had a heart attack. I then had an echocardiogram and it showed that I did NOT have a heart attack. All this worry could give me one though ! anyway, if anyone gets an echo make sure the technician is experienced in placement of leads with no implants. I wanted to write sooner but unfortunately, my Dad passed away two weeks ago so i am finally back on the computer. Thanks to those who have helped me through all this.!!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2012

    Sorry about your dad, Shippy, but it's nice to see you here. I had a similar experience with the EKG showing previous heart attack. Frightening, yes! Turns out if you use soap that has lotion (Dove) that the leads don't stick well and give faulty reads. The gal knew enough to ask me, and after swabbing areas with alcohol and then reapplying leads, no heart attack results.

  • Murmist
    Murmist Member Posts: 32
    edited January 2012

    Momine: I got myself to the LE this past week.  The therapist took some baseline measurements of my arms as at this point there is no swelling.  She also suggested that I wear a sleeve on both when excercising or when I fly. The other precautions were concerning blood pressures and blood draws along with the general LE stuff of watching out for insect bites, cuts, gardening, etc.  Truth be told I am just so over this...I have bi-lateral edema in my legs from OV surgery 7 years ago and wear compression stockings.  I know it could be much worse and am truly grateful to be here, but the thought of spending more time on self-care is very frustrating...

  • edwh001
    edwh001 Member Posts: 73
    edited January 2012

    Hi all, I am happy to say I did not have reconstruction 5 years ago ( at the time did'nt know my ins would pay for it). For the first few years I was unsure of what to do or if I could get it done. My ins would not pay for a bilateral mastectomy so I wear a prosthesis when away from home. I wish I could of had a bilateral, I know I would of been happier, more freedom to just put on a shirt and go. For me the less cutting on me the better. Like most of you I wanted to get on with my life and did'nt want any more pain or complications, so yes now I am happy I did not get reconstruction.

    Emmy

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2012

    Hi, Murmist - Sounds like you are on the ball and having your LE addressed ASAP. Excellent! From one lympher to another, I was wondering if you have popped over to the lymphedema forum to get some good info on the treatment of very early LE. Mine wasn't treated with manual drainage or appropriately wrapped and it became worse. Now is the best time to get a jump on halting your LE from progressing. I was wondering if your therapist has you wearing a gauntlet or glove with your sleeves? Please pop in and ask Binney or Kira about appropriate treatment for pre-clinical (non-measurable) arm or trunk LE. They are incredibly knowledgeable and helpful. I'm sorry you are also dealing with bilateral leg LE after OV surgery. LE stinks!

  • shirleysangels22
    shirleysangels22 Member Posts: 36
    edited January 2012

    Hi Marlee1,

    I had a double mastectomy on 7/28/11 w/o reconstruction and have not regretted it at all. The reason I chose it was 1) Cancer in left breast didn't want it to go to the right side.2) If I just had the lump removed I would have to have had ratiation.3) I have heard more times then not about after having the lump removed it comes back in the other breast or another spot is found..4) Infections from the expanders that are put in. 5) One surgery was enough for me.6) Didn't want to go a year getting expanders put in then have another surgery to have silicone ones put in. Best of luck my Sister in Pink with your decision.

    Your Sister in Pink, Shirley

  • shirleysangels22
    shirleysangels22 Member Posts: 36
    edited January 2012

    I have both the lacy ones and the ones from Amoena from TLC. I like the ones from Amoena much better. The pockets are made with a better elastic in front. The ones with the lace seem to sag in front and look sloppy to me. I like the front to look nice and tight. Best of luck my sister in pink.

    Shirley

  • Murmist
    Murmist Member Posts: 32
    edited February 2012

    Tina337: Thanks for the info I will jump into the forum as well.  Yes, it does stink. The amount of time spent in self-care for all this stuff is absurb. So far so good on my arms, but the LE folks did suggest sleeves as a precaution when I bowl or workout and especially for flying and to get the guantlets.  Saw the BS yesterday and she didn't even want to address address this...she feels it's never going to happen.  Sorry, but after the last time and having people ignore me for years that isn't going to happen again!

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