mastectomy WITHOUT reconstruction

Sarah06
Sarah06 Member Posts: 30
edited March 2014 in Breast Cancer #1
Has anyone had a mastectomy without reconstruction? I would like to know how your chest feels, how it looks (is it smooth, bumpy, pressed in), how it is to wear prostetics, and which ones are good, soft and natural looking? Do the prostetics bother your chest and irrate it?
Sarah06

Comments

  • ClaudiaAnn
    ClaudiaAnn Member Posts: 51
    #2
    If you decide on prosthetics, your doctor will refer to a provider who specializes in breast prosthetics ( I went to Hanger Prosthetics). They have several different brands and shapes and different bras for you try on. Keep going until you find one that feels right for you and you like the appearance it provides. If your first provider doesn't have what you are comfortable with ask for another referral. Good Luck.
  • Future
    Future Member Posts: 133 Member
    #3
    I went almost two years without reconstruction. I decided to go with reconstruction because I was tired of dealing with the prothesis and the limitation/expense of specialty bras. I had a slight concave and tightness but part of that had to do with radiation therapy. I'm not done with reconstruction and have had some problems but for me reconstruction was the best choice. Surgeon was able to release scar tissue, etc with the reconstruction. There's no right or wrong answer, remember reconstruction can be done years down the road if you're not certain.
  • sback
    sback Member Posts: 4
    #4
    I had a double mastectomy two and a half years ago and decided not to have reconstruction for at least three years. I have two folds of skin that resemble a very small breast on each side of my chest. I also have a small buldge of fatty tissue under each arm. I think that the doctor did this to leave enough tissue in case I did change my mind down the road. I can tell you that I do not regret my decision. I do have a pair of silicone prosthesis but have found them to require too much work (and luggage) when I travel as they have to be placed into boxes with forms when I am not wearing them. This year I bought some light foam prothesis from the TLC catalog and am very happy with them. They are light and comfortable and offer just the right size breast for me. I love the fact that I can just toss them into a duffle bag or suitcase when I am done with them for the day!
  • ClaudiaAnn
    ClaudiaAnn Member Posts: 51
    #5
    sback said:

    I had a double mastectomy two and a half years ago and decided not to have reconstruction for at least three years. I have two folds of skin that resemble a very small breast on each side of my chest. I also have a small buldge of fatty tissue under each arm. I think that the doctor did this to leave enough tissue in case I did change my mind down the road. I can tell you that I do not regret my decision. I do have a pair of silicone prosthesis but have found them to require too much work (and luggage) when I travel as they have to be placed into boxes with forms when I am not wearing them. This year I bought some light foam prothesis from the TLC catalog and am very happy with them. They are light and comfortable and offer just the right size breast for me. I love the fact that I can just toss them into a duffle bag or suitcase when I am done with them for the day!

    Hi again. sback - please post how you found the soft foam breast forms. I have been trying to find them for a year. I event tried making my own. What is TLC? I don't know that yet. THANKS!
  • Sarah06
    Sarah06 Member Posts: 30
    #6
    sback said:

    I had a double mastectomy two and a half years ago and decided not to have reconstruction for at least three years. I have two folds of skin that resemble a very small breast on each side of my chest. I also have a small buldge of fatty tissue under each arm. I think that the doctor did this to leave enough tissue in case I did change my mind down the road. I can tell you that I do not regret my decision. I do have a pair of silicone prosthesis but have found them to require too much work (and luggage) when I travel as they have to be placed into boxes with forms when I am not wearing them. This year I bought some light foam prothesis from the TLC catalog and am very happy with them. They are light and comfortable and offer just the right size breast for me. I love the fact that I can just toss them into a duffle bag or suitcase when I am done with them for the day!

    Are you talking about the TLC at the website: TLCcatalog.org? I also heard Busom Buddy was good. Did you not decide on reconstruction, because of the possible risks of saline or silicone implants or because of the operation?
    Sarah06
  • ClaudiaAnn
    ClaudiaAnn Member Posts: 51
    #7
    Sarah06 said:

    Are you talking about the TLC at the website: TLCcatalog.org? I also heard Busom Buddy was good. Did you not decide on reconstruction, because of the possible risks of saline or silicone implants or because of the operation?
    Sarah06

    I'm not a condidate for implants. I had a single side mastectomy and radiation. The surgery itself just seems way more than I want to go through. If I was really unfortable the way I am I might feel differently. I've talked to two different plastics and I've gotten the same answers. I just don't want to take the risks of reconstruction. I would rather have a second mastectomy and go home the next day knowing what to expect. I found the tlc catalog but will also look for bosom buddies. The prices tlc are really very good!
  • sback
    sback Member Posts: 4
    #8
    Sarah06 said:

    Are you talking about the TLC at the website: TLCcatalog.org? I also heard Busom Buddy was good. Did you not decide on reconstruction, because of the possible risks of saline or silicone implants or because of the operation?
    Sarah06

    Sarah and Claudia,
    Yes, the TLC is the catalog and also the website www.tlccatalog.org. Wonderful resource. I sent you both personal messages in regard to your questions.

    Sally
  • SusanO43
    SusanO43 Member Posts: 7
    #9
    Hi Sarah! I havent had reconstruction. I dont think I will. My chest on that side is sort of concaved in more than I thought it would be but its not gross or scarey looking like I thought. I had a really good surgeon. I have a scar going across but its not much more than a line. That will depend on your surgeon. The area is alittle
    tender to the touch. I got a prosthesis, and when I have a hot flash (or 10 !) it gets all sweaty and drives me crazy! I do suggest a light-weight one. mine isn't!! Its small too! its still hot & heavy!...Good Luck!....Susan
  • Sarah06
    Sarah06 Member Posts: 30
    #10
    SusanO43 said:

    Hi Sarah! I havent had reconstruction. I dont think I will. My chest on that side is sort of concaved in more than I thought it would be but its not gross or scarey looking like I thought. I had a really good surgeon. I have a scar going across but its not much more than a line. That will depend on your surgeon. The area is alittle
    tender to the touch. I got a prosthesis, and when I have a hot flash (or 10 !) it gets all sweaty and drives me crazy! I do suggest a light-weight one. mine isn't!! Its small too! its still hot & heavy!...Good Luck!....Susan

    Someone suggested to me to try the website Bosombuddy.com The protestics are soft and you can get them weighted. I soke to one lady on the phone and she was very nice.
  • Sarah06
    Sarah06 Member Posts: 30
    #11
    SusanO43 said:

    Hi Sarah! I havent had reconstruction. I dont think I will. My chest on that side is sort of concaved in more than I thought it would be but its not gross or scarey looking like I thought. I had a really good surgeon. I have a scar going across but its not much more than a line. That will depend on your surgeon. The area is alittle
    tender to the touch. I got a prosthesis, and when I have a hot flash (or 10 !) it gets all sweaty and drives me crazy! I do suggest a light-weight one. mine isn't!! Its small too! its still hot & heavy!...Good Luck!....Susan

    Someone suggested to me to try the website Bosombuddy.com The protestics are soft and you can get them weighted. I spoke to one lady on the phone and she was very nice.
  • SweetSue
    SweetSue Member Posts: 217
    #12
    I had a bilateral without reconstruction. I just don't want to go through the implant process. I'd rather have a face lift ;-) for my next surgery of choice.
    You do not have to make your decision immediately. I felt I could only handle one major decision at a time.
    Sometimes, I wear large sweatshirts, instead of wearing the prosthetics. However,the prosthetics don't irritate or bother my chest.
    I did go in for (what I call)clean-up surgery to remove the balls of fat and wings. My chest looks okay now...something I can live with.
    However,u must do what makes YOU happy.
  • babs49242
    babs49242 Member Posts: 193
    #13
    Sarah06 said:

    Someone suggested to me to try the website Bosombuddy.com The protestics are soft and you can get them weighted. I spoke to one lady on the phone and she was very nice.

    Hi Sarah! I had a mastectomy on the right side. My chest is concaved alittle but it could easily fit in a champagne glass. I opted NOT to have reconstruction due to the fact I did(do) not want any more surgeries. That is a personal choice. And I wish I would have had a double..I could go bare back.hahaha and my future husband has no problems on how my chest looks and neither do I. I am thankful to the God above for giving me another chance to live.
  • karatemom
    karatemom Member Posts: 1
    #14
    SweetSue said:

    I had a bilateral without reconstruction. I just don't want to go through the implant process. I'd rather have a face lift ;-) for my next surgery of choice.
    You do not have to make your decision immediately. I felt I could only handle one major decision at a time.
    Sometimes, I wear large sweatshirts, instead of wearing the prosthetics. However,the prosthetics don't irritate or bother my chest.
    I did go in for (what I call)clean-up surgery to remove the balls of fat and wings. My chest looks okay now...something I can live with.
    However,u must do what makes YOU happy.

    My breast cancer came back after nearly 10 years in the same place, and I opted to have a bilateral mastectomy without reconstruction. It has only been 2 weeks plus, and I will be undergoing chemo in a few weeks. Were you totally healed before you began your chemo? When did you begin exercising and stretching? I have begun some Tai Chi and Qi Gong exercises, something I have been doing for several years now. Any tips on chemo would be very much appreciated too.
  • Sarah06
    Sarah06 Member Posts: 30
    #15
    karatemom said:

    My breast cancer came back after nearly 10 years in the same place, and I opted to have a bilateral mastectomy without reconstruction. It has only been 2 weeks plus, and I will be undergoing chemo in a few weeks. Were you totally healed before you began your chemo? When did you begin exercising and stretching? I have begun some Tai Chi and Qi Gong exercises, something I have been doing for several years now. Any tips on chemo would be very much appreciated too.

    Fortunately, knock wood a million times, I did not need chemo or radiation. I am looking into options. I want to see what it is like to have no reconstruction. I don't believe implants are for me. I am also looking at tissue transfer from my butt to breast. Right now it is very costly to get the doctors I want. I stretched I believe about a month later. It was slow going. You can not lift and can not put your arms over your head to over reach. In the beginning, I couldn't even reach over my head to do anything.
    Sarah06
  • krkath
    krkath Member Posts: 72
    #16
    Sarah06 said:

    Fortunately, knock wood a million times, I did not need chemo or radiation. I am looking into options. I want to see what it is like to have no reconstruction. I don't believe implants are for me. I am also looking at tissue transfer from my butt to breast. Right now it is very costly to get the doctors I want. I stretched I believe about a month later. It was slow going. You can not lift and can not put your arms over your head to over reach. In the beginning, I couldn't even reach over my head to do anything.
    Sarah06

    HI Sarah,
    Now I wish I was given the option of putting in the inflater thingy when I had my masectomy. (Left Side) I was looking forward ro reconstruction until I found out the Lat Flap and Stomach Muscle Transfer just is too much for me. I juts want my legs to feel better and am thinking I may never want surgery. Those soft TLC prosthesis sound pretty good to me. I have one that is quite heavy and is a pain to put on in the morning. I'll have to check that out.
    I asked about the butt transfer and it sounded like not too many surgeons like to do it due to attaching nerves and muscle. I'm not sure but my plastic surgeon who is highly recommended here in La Jolla CA, said he stopped doing it cuz it was hard on him. So, it must be pretty hard.
    Anyway, I can't even think about surgery. And ya I like my baggy sweatshirts too. I just want my legs back. (7 months at recovery)
    Keep Hangin in there!
    Kath
  • Sarah06
    Sarah06 Member Posts: 30
    #17
    krkath said:

    HI Sarah,
    Now I wish I was given the option of putting in the inflater thingy when I had my masectomy. (Left Side) I was looking forward ro reconstruction until I found out the Lat Flap and Stomach Muscle Transfer just is too much for me. I juts want my legs to feel better and am thinking I may never want surgery. Those soft TLC prosthesis sound pretty good to me. I have one that is quite heavy and is a pain to put on in the morning. I'll have to check that out.
    I asked about the butt transfer and it sounded like not too many surgeons like to do it due to attaching nerves and muscle. I'm not sure but my plastic surgeon who is highly recommended here in La Jolla CA, said he stopped doing it cuz it was hard on him. So, it must be pretty hard.
    Anyway, I can't even think about surgery. And ya I like my baggy sweatshirts too. I just want my legs back. (7 months at recovery)
    Keep Hangin in there!
    Kath

    You may also want to try the website: bosombuddy.com They have some light weight prostectics. Is your chest smooth with no reconstruction? Do you feel tightness, pain, limited movement or itchiness?
    Sarah06
  • designer1
    designer1 Member Posts: 1
    #18
    karatemom said:

    My breast cancer came back after nearly 10 years in the same place, and I opted to have a bilateral mastectomy without reconstruction. It has only been 2 weeks plus, and I will be undergoing chemo in a few weeks. Were you totally healed before you began your chemo? When did you begin exercising and stretching? I have begun some Tai Chi and Qi Gong exercises, something I have been doing for several years now. Any tips on chemo would be very much appreciated too.

    Wow! Karatemom! I had the very same thing! I was dagnosed eleven years ago with a barely Stage I intraductal carcenoma. I had no lymph node involvement, but had many removed(before the mapping was used). I did 28 radiation treaments after a quadranectomy. Then, after all those years I discovered a lump in the same breast! It was Stage II ductal carcenoma this time. I,too, had bilateral mastectomies. Because I had no lymph nodes to be checked my onc said I needed chemo. Yes, iwas somewhat healed before I started chemo and I had a portacath installed. I have taken it easy because of having the port, but can tell that my upper body needs some exercising and toning. I will be finished with chemo in about a month and my onc says I can have the port removed soon after I am finished. In regards to your chemo questions: I had adriamycin and cyclophosphamide(Cytoxan) together every three weeks for 4 treatments. I did really well I think. Blood counts remained good and I will say I was "under the weather" for about 3-4 days after each treatment. My first treatment was a breeze, really. The second wasn't too bad just felt a bit sicker. The 3rd and 4th were crappy and I was a little sicker for a little longer. You will have to experiment with things that taste better than others. For me, I ate crackers and milk a lot.Yogurt helped too. I had a two week rest and then I was started on Taxotere. I get a threatment every week for three weeks in a row and then a week off. I am doing 4 series of those treatments. I am going to get round 3 in the third three week series. I will be off a week and then start my lst three series on May 10. I see that I am a little late seeing this. I just found this site tonight. I am sure you are already in treatment. I hope all is going well for you! Please let me know how you are doing. I hope my reply helped a little. I don't think I will have reconstruction. I am fine with no breasts!

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