SweetSue Member Posts: 217
edited March 2014 in Breast Cancer #1
First of all, thank you to all who have replied to my questions. I love this place!!
I had a bilateral mastectomy. I can't make a decision about reconstruction. Is there less of a chance for recurrence without reconstruction?? If the cancer comes back, is it more difficult to detect with reconstruction?
Gee, I just read what I wrote...doesn't seem like I am thinking too positive. I thought I've been very positive about my future health. Even though I know it's ultimately my decision, but husband doesn't care if I have boobs...he just wants me to live.
However, I have a difficult time looking at myself..I am no model..and usually, not vain.
I just need some input from other breast cancer survivors. I do dread more surgery. Thanks.


  • jake10
    jake10 Member Posts: 202
    I had my reconstruction at the time of my mastectomy. I never went without a breast. I had the tram flap procedure.
    I did not think that any breast tissue remains after the mastectomy so reaccurance in the area is unlikely especaially since you had a bilateral. Now metatacies is another issue all to gether but bc usually travels to the bone, liver and lung. After the mastectomy the only thing left up there is muscle and belly fat if you have the flap. But ..... I was very suprised when they did my first post mamogram. (results were good, thank God) They screened my fake boob as well. The tech told me they usually do it once but the picture is worthless because the muscle and fat tissue are too dense.

    I understand about the more surgery. I've had a lot of problems getting my abdominal wound to heal and have had to undergo additional surgery and treatments. I now dread any kind of medical care. I see anyone coming at me with a needle and I instantly begin to cry. I was never like that before. The reconstruction procedures are usually highly sucessful. I have been told that the tram flap is the least likely to develope complications post op and down the road (can't judge that info by me) It is a big procedure so research and look at pictures of all options prior to making a decision.
    But yes I would get reconstruction. You never quite feel about the new boobs like you did the old ones(familiar, soft, sensative ....) but it helps with dressing, makes clothes feel right again and the prostetics are heavy I am told.
    Good Luck Beth
  • cammie
    cammie Member Posts: 102
    Well I had the latisamis dorsel muscle from my back brought forward and unfortunately there was not enought to make a boob, so I will need a implant as well. First you have to go through a expander process for your skin before you can get a implant. I must tell you it is not very comfortable. Not to discourage you, but to be honest the expander is awful. I will be finished with my expansion and get my new implant on Aug. 7th. Then I start the nipple reconstruction. I don't know anything about being able to get cancer in the reconstruction side. I would imagine since the insides are gone, we can't get it there again. Do what feels right to you. Your husband sounds very supportive, but it boils down to what would you want. Surgery again augh, I know the feeling. Bright side is that they will be perky. There were some web sites that someone metioned in the subject of Nipple Reconstruction. I went to these sites and they will show you what you could look like. Write to me if you can't find the site. Cammie
  • jbeardslee
    jbeardslee Member Posts: 75
    I opted for the prothesis. However I'm 56 and maybe I would feel differently if I were younger. I bought the prothesis from the TLC catalog, got the unweighted one and I'm very pleased with it. I'm small too and possibly that's why I'm comfortable with one. I have read where some women think they are too heavy and too warm for summer. Again I am pleased with mine. Ironically, I went for an exam today at the surgeon's office because there is a problem with my mammo from the 'good side'....and the nurse asked with side I had had the mastecotmy because through my clothing she couldn't tell. I guess that means my prothesis looks pretty natural.
    Good luck with your decision. ...Judy
  • miraclemom
    miraclemom Member Posts: 41
    Dear sweet onion,I had an expander put in at time of mastectomy and then went back for the reconstuction about 6 months later and then another six months later had the nipple done.I did it for me,made me feel better about myself and wearing clothes was easier.I now have to decide about having more surgery to have both sides evened out.I figured after all i have gone through why not see it through.It is a personnal choice and everyone is different and its great about your husband and his outlook about you not having a breast.Positive thinking helps so much in your recovery and we all go through the faze of not wanting to have more surgery.Dont know about the chance of recurrence with or without reconstruction-ask your doctor what he thinks.Having my surgery to have breast again was my way of fighting back-if you like the way you look your a happier person I believe.Good luck in what you decide. Lori
  • mc2001
    mc2001 Member Posts: 343
    Hi Sue!
    First of all, I dont have breast cancer. I am a leukemia survivor, and I am male. With that said, I would like to pose a question to help in your decision making. Isnt it possible that you ARE being positive in your remarks and Not negative? Isnt finding as much information before making such an important decision that will affect your life, prudent and wise? And isnt prudence a positive characteristic? Good knowledge helps us to make better decisions. And about being vein...
    There is a difference between normal desires to be well groomed (however that is supposed to be for each person is different) and attractive, and the blatant desire to want to feel superior to everyone else. We ALL want to do the best we can and that includes making decisions about our appearance, which is also a survival tactic. And these questions and desires to gain as much information before decision making, and the desires we have to be attractive are all GOOD and HEALTHY. Besides that, can you imagine what humanity would be like without these wonderful desires. If we would not have the capacity to care for own person, then how can we possibly be able to care for others? In no way am I trying to make a decision for you. I just wanted to offer an objective insight. Thanks to God for giving us these gifts to help us survive *life*. And I agree completely with your belief that this is ultimately your decision, and what will make YOU feel great about yourself. God bless and Best wishes for however you decide to manage this situation.

    PS: In a nutshell, I see nothing vein or negative in your writing. Actually, quite the opposite! I believe you are well on your way to defeating this cancer!! Remember, bottom line: Do what will make YOU feel best about yourself.
  • workingtired
    workingtired Member Posts: 13
    I am 41 years old, married with 2 children under 5 and had my left breast removed from DCIS Memorial Day Weekend of this year. I opted for tram flap reconstuction. Although I am still in the healing stage, I do find that having a new breast in the reconstructed site has made it easier to deal with the whole issue.

    My husband supports me in whatever decision I make and my children just think that mommy has a boo boo. I have gone to the beach in a bathing suite and no one seems to notice anything different except for the binder I have to wear around my waist. Of course I can see the difference unclothed and wish I never had to go through this whole thing, but at least I'm ok and can go on with my life.

    I think that if you want breasts, get them. You'll heal and feel better in the long run.
  • blossomtime
    blossomtime Member Posts: 98
    I had my mastectomy a yr ago and at the time I chose to have tissue expander. I didn't want another incision or longer recuperative time that would be needed if I chose the tram flap. I have never regretted my decision. I woke up from surgery and already had a little bit of a breast. For me it made me feel better about all I was going thru. I just had my tissue expander exchanged for implant 3 weeks ago. At the same time I had a lift on the other side. Looks pretty good so far. Of course still swollen and the doctor said it would take several months to see final results. I intend to go on and have the nipple reconstruction sometime in the fall. I did not do this for anyone but myself. For me this was the right choice but everyone is different. As far as recurrence, all I know is that even without breast tissue there can be recurrence in chest wall muscle. In my case the radiation oncologist said without radiation I would have 25% chance of chest wall recurrence. Of course this is lessened since I had the radiation. I dont think having reconstruction affects this but dont really know for sure. Ask your doctor. Also I get checked by my surgeon every 6 months and oncologist every 4 months and by my pcp every 6 months. So there are alot of people poking around these boobs pretty frequently. LOL. Good luck to you, I am sure you will make the right decision for you!!!
  • wordco
    wordco Member Posts: 9
    Dear Sweet Onion:

    Your question about recurrence is a good one. I think I can help answer it (I just wrote a book on breast reconstruction after my own bilateral reconstruction, and researched the issue extensively). Mastectomy never removes all breast tissue; it just isn't possible. It removes most of it, from under the collarbone, down to the rib cage, but because some of it blends in with other tissue, a small amount always remains; it's different for every woman. Statistically, the risk of recurrence after mastectomy is less than 2%.

    Reconstruction doesn't affect recurrence one way or the other...Whether you have implants or a tissue flap, it's much easier to find any lump, because you don't have the breast tissue in the way.

    Since you've already had mastectomies, you have plenty of time to consider your reconstructive options. There are lots of ways to do reconstruction...all with their advantages and disadvantages. It's worth your while to research each one, even make a list of all the "goods" and the "bads" about each choice, understand the procedures, recovery and long-term effects, and then make your decision.

    It's odd that many male partners (God bless 'em) often feel as your husband does..loving you for who you are, they don't care whether you have breasts or not. But reconstruction is really something you do for yourself. It does involve surgery and recovery, but it also has a beginning and an doesn't go on forever.

    Good luck with your decision.

  • iris48
    iris48 Member Posts: 92
    Hello SweetOnion,
    I have come thru the double mastectomies, breast expanders (you need to have them filled to your bodies tolerances), and reconstruction with saline round implants...after much, no lots of research. The nipple reconstruction, was able to use my own skin (which had been stretched by expanders) to allow a natural looking nipple. Permanent pigmentation (tatooing) put the proper color on the areola portion of the new nipple. If you didn't know I was reconstructed, you couldn't tell by just looking at me. The "Girls" are perky and a full B size. They need deep massaging to work the edges of the implant and stretch them so they do not build up scar tissue. This helps keep them supple and softer. I have a lot of sensation and had requested the skin saving mastectomy at the time that was done. It varies with each person. I am back to work full time and loving every day. I am a therapist (massage) so am very physical and can do the work. Good luck on whatever you decide.
    Lots of warm fuzzies. Iris
  • bunnie
    bunnie Member Posts: 233
    Hi sweet Onion.Iam going through the same thoughts right know i had a mastecomy in Jan and i cant make up my mind if i want recosturction or times i dont think i do but then other times i do like when iam getting dreesed or taking a shower.So far i have not minded the prothisis it isnt too bad but of course iam only using one i still have my Right breast.It is a hard descion too make we have all been thorugh a lot with just the cancer thing and surgery and chemo.Good luck in whatever you decide too do.Amy
  • SweetSue
    SweetSue Member Posts: 217
    bunnie said:

    Hi sweet Onion.Iam going through the same thoughts right know i had a mastecomy in Jan and i cant make up my mind if i want recosturction or times i dont think i do but then other times i do like when iam getting dreesed or taking a shower.So far i have not minded the prothisis it isnt too bad but of course iam only using one i still have my Right breast.It is a hard descion too make we have all been thorugh a lot with just the cancer thing and surgery and chemo.Good luck in whatever you decide too do.Amy

    Bunnie, I'm still go for reconstruction or not. Like, you, I am bothered when I bathe...I dim the lights.
    I am an indecisive person, but lately (as everyone knows here) I've had to make major decisions within a short time.
    I'd be interested to know what u decide.
  • Twinks56
    Twinks56 Member Posts: 37
    Sweet Onion,
    I am going thru the same thing s about reconstuction,yes, no ,what?I had my mastecomy done Feb.6 this year.At the time I agreed to start the reconstuction prosess.They put in the expander right at surgery.By the 24th of Feb.I was having surgery to remove the expander dueto major infection.My body was rejecting the implant.I am not a canditate for tram flap.Last week I had my last chemo that I have been scheduled for.I see doc on the 22nd for the "final word".And now I have to figure out about reconstuction againI'm scared because of the past,don't like the scar,husband does't care one way or the other.He is just happy that I am here.I could go on and on but you know. This is my experience.Everyone is different and as everyone has said it's your decision.I don't know what I will do.Twinks 56
  • SweetSue said:

    Bunnie, I'm still go for reconstruction or not. Like, you, I am bothered when I bathe...I dim the lights.
    I am an indecisive person, but lately (as everyone knows here) I've had to make major decisions within a short time.
    I'd be interested to know what u decide.

    Hi Sweet Onion and others!
    I sat on the fence and once in awhile got pretty stressed out about not being able to make a decision about reconstruction. I did all the research and got more annoyed because it still wasn't clear to me! Finally I decided I wasn't ready to make a decision and gave myself a "break" and decided not to decide for awhile. That was earlier this spring. My mascetomy was in Nov. and chemo ended Feb. This summer my decision was made easier by my dislike of being in the locker room dressing when I take my daughter swimming etc.... and moving the prosthesis from one bra, suit to another. I'm 35 now, 34 at Dx and decided I had lots of locker room situations ahead of me as I'm very active with my kids so I'm taking the plunge.I had earlier consulted with a plastic surgeon, so I got in again and am scheduled to start with an expander Aug. 12th. I'll also get a lift on the other side when I get the permament one in on the left (cancer) side. I think I'm going with silicone. My Dr. seems pretty sure of the research and I will be followed in a federal study for 5 yrs. I'm not the best candidate for transflap, and really didn't want such a big disruption in my family's life again so that's why I choosing this route. I really appreciate all the talk on this site to help prepare me too. I know the espander won't be fun but I look forward to my new X-mas boobs! Right now I'm size AA so I'm going to get a small B size I hope! Give yourself a break and some time..... we all need that I think when under so much pressure to make life changing decisions. Good Luck!
  • juliesl
    juliesl Member Posts: 1
    Hi Sue,
    I first want to say that you are not being negative in thinking what would happen if the cancer comes back. I think that once you are diaganosed with cancer the thought is always in the back of your mind, and if you did not think of it then it would not be normal. The important thing is not to dwell on the issue.

    I do not think you are being vain in wanting to look good again. I feel you are being positive in your thinking because you want to move forward. This is a very personal decision so I would suggest that you talk to your surgeon and look at all the options available and then make your decision on what you feel is best for you. It is wonderful that your husband supports you with whatever decision you make.

    I personally had Tram reconstruction at the time of my mastectomy. My surgeon discussed all the options to me and I felt the Tram was the best decision for me. The surgery went well, but the recovery time is longer than other types of reconstruction. The second day of the surgery was the worst for me (pain)but it did get better each day. The downside of the surgery is my reconstructed breast is now smaller than my other, so I will make some decisions in the near future. Even after the Tram, I don't dread another surgery. Before my surgery, I was an avid exerciser and I did go back to the gym 2 months after my surgery.

    If you have any other questions, please feel to email me. Good luck in your decision.