HELP - WHAT DO DO REGARDING BILATERAL MASECTOMY

denbralou
denbralou Member Posts: 66
edited March 2014 in Breast Cancer #1
I just finished 8 treatments, 4 of AC and 4 of Taxol. Was told up-front that I would need a masectomy no matter what but they wanted to try to shrink my tumors. I only have cancer in the left breast but decided to have a double masectomy as to not worry in the future. Met with my surgeons today and was told that since they are not sure if I will need to have radiation until after surgery, they are do not want to do immediate reconstruction on the left breast until after surgery but they would do reconstruction on the other side, well OMG, should I choose not to have them both done until the same time or go with just one until we see about the rads? They said it would be better to do the one because of skin shrinkage, etc. I just don't know what to do, has anyone else had this problem?

Comments

  • Marlene_K
    Marlene_K Member Posts: 508
    #2
    I would wait
    I was told to wait for reconstruction also. However, I only had the one removed. I just finished radiation and am told it's at least 3 months out before I can consider reconstruction. However, if I opted to have both done (and it WAS a big consideration), I would have waited to have both done at the same time. I would think there would be a better chance of matching. But, of course, this is a personal choice. Please let us know what you decide.
  • denbralou
    denbralou Member Posts: 66
    #3
    Marlene_K said:

    I would wait
    I was told to wait for reconstruction also. However, I only had the one removed. I just finished radiation and am told it's at least 3 months out before I can consider reconstruction. However, if I opted to have both done (and it WAS a big consideration), I would have waited to have both done at the same time. I would think there would be a better chance of matching. But, of course, this is a personal choice. Please let us know what you decide.

    Thank you
    Thanks much Marlene, that is what I am thinking, but want to see what others opted to do.
  • youngnana
    youngnana Member Posts: 41
    #4
    I am 4 weeks out from my
    I am 4 weeks out from my bilateral mast. When I had my 1st appt with the plastic surgeon, we didnt know at that point if the nods were involved, or if chemo or rads would be necessary. He advised me that doing the immediate reconstruction was fine with expanders, but not with a flap. He explained that if rads were needed later, sometimes it damages the skin and may require the expanders be replaced, but often times it doesnt. He said that if that did happen, we still had the option of the flap with its new skin that could be used later. So, you might ask about these options. Fortunatly, rads are not in my treatment plan, so all is going well. There are so many decisions for us to make, it leaves our heads spinning. I am praying that all goes well for you, and that you feel contentment in your choices. Hugs to you.
    Karen
  • denbralou
    denbralou Member Posts: 66
    #5
    youngnana said:

    I am 4 weeks out from my
    I am 4 weeks out from my bilateral mast. When I had my 1st appt with the plastic surgeon, we didnt know at that point if the nods were involved, or if chemo or rads would be necessary. He advised me that doing the immediate reconstruction was fine with expanders, but not with a flap. He explained that if rads were needed later, sometimes it damages the skin and may require the expanders be replaced, but often times it doesnt. He said that if that did happen, we still had the option of the flap with its new skin that could be used later. So, you might ask about these options. Fortunatly, rads are not in my treatment plan, so all is going well. There are so many decisions for us to make, it leaves our heads spinning. I am praying that all goes well for you, and that you feel contentment in your choices. Hugs to you.
    Karen

    Thank you youngnana
    Thanks for the info. I don't know what to do. I believe he is basing his decision on because previously I had to have radiation back in the 80's. I had Hodgkins Disease when I was a teenager and had chemo and radiation back then. They are worried about radiating in the same area twice and the damage that it would do I guess. At the appointment, my mind kind of went blank and I was relying on my husband to sink all the information in. Hugs to you also.
  • e_hope
    e_hope Member Posts: 370
    #6
    i had double mast with
    i had double mast with expander reconstruction, then chemo, then rads, followed by exchange surgery
  • denbralou
    denbralou Member Posts: 66
    #7
    e_hope said:

    i had double mast with
    i had double mast with expander reconstruction, then chemo, then rads, followed by exchange surgery

    Thanks E-hope
    Thanks for the info, I appreciate it.
  • n01kar
    n01kar Member Posts: 26
    #8
    denbralou said:

    Thanks E-hope
    Thanks for the info, I appreciate it.

    wait
    I would wait until are treatments are finished and you are out of the cancer woods. You have a better chance to obtain symmetry if they are done at the same time. But the rules dont apply to everyone, i had 2 masectomies done 6 yrs apart. Last month when reconstruction was being performed on the left, i had the implant switched on the right. 1st time around, there was a big difference in size even though it was the same size implant. Go figure. I had a revision done a week and 1/2 ago, and i am much happier with the results.
  • seof
    seof Member Posts: 819 Member
    #9
    I have had double mastectomy
    I have had double mastectomy for the same reason you did. I had expanders put in at the time of the mastectomy because I was not sure at that time whether to do implants or use my own tissue. I had chemo and radiation. They never really presented me with a real choice...the way they explained it was that radiation would affect the skin on the left breast and we would be waiting till the area was totally healed up (minimum of 6 months, preferably 10) before surgery would be considered. I wound up waiting a year because I work in Public schools and I wanted to do it when I would miss the least amount of work. I think it was a good decision.

    I know the feeling of uncertainty, and the feeling that you just want all this to be over so you can get on with life after cancer, but I think waiting till all the treatments are over is a good decision. I think the body can heal better when it only has to heal from one thing at a time too.

    Best wishes to you as you decide. seof
  • denbralou
    denbralou Member Posts: 66
    #10
    seof said:

    I have had double mastectomy
    I have had double mastectomy for the same reason you did. I had expanders put in at the time of the mastectomy because I was not sure at that time whether to do implants or use my own tissue. I had chemo and radiation. They never really presented me with a real choice...the way they explained it was that radiation would affect the skin on the left breast and we would be waiting till the area was totally healed up (minimum of 6 months, preferably 10) before surgery would be considered. I wound up waiting a year because I work in Public schools and I wanted to do it when I would miss the least amount of work. I think it was a good decision.

    I know the feeling of uncertainty, and the feeling that you just want all this to be over so you can get on with life after cancer, but I think waiting till all the treatments are over is a good decision. I think the body can heal better when it only has to heal from one thing at a time too.

    Best wishes to you as you decide. seof

    Thanks
    Thanks for the info. So seof, you had expanders put in before radiation, is that right? Did all go okay with the radiation and expanders then?
  • SamuraiMom
    SamuraiMom Member Posts: 295
    #11
    A wise breast cancer survivor friend of mine once told me, "They'll never be twins but they'll always be sisters", when it came to reconstruction.

    Even if you have them done at the same time they're not exactly the same...
  • denbralou
    denbralou Member Posts: 66
    #12
    SamuraiMom said:

    A wise breast cancer survivor friend of mine once told me, "They'll never be twins but they'll always be sisters", when it came to reconstruction.

    Even if you have them done at the same time they're not exactly the same...

    Thanks SamuraiMom
    That is a great way to see it. I am waiting to see the radiation oncologist on Friday and we will see what he says, then I must make a decision, which is very hard. I still don't know what to do.
  • blabrn1
    blabrn1 Member Posts: 10
    #13
    double mastectomy
    I asked about this option early in my treatment process but was talked into lumpectomy and node removeal. 2years after my treatment of surgery and chemo and radiation, I had a double mastectomy. I had new calcifications in the other breast and did not want to "watch and wait" with all the breast cancer in my family. I also am positive for Factor V, which is an extra clotting factor so I do not qualify for DIEP, which would have been my choice if I had qualified. I did not do the tram flap because I have been so active kayaking, etc that I did not want to risk back injury or hernia. So, I have gone with silicone implant plan. I just had my expanders filled to capacity last week. Now we wait 4 weeks until the real implants.

    I'm glad to be doing this now, without having to think so much about active cancer. However, I would have done this two years ago if my old oncologist would have answered my questions fully about how chemo can cause cognitive issues and that the radiated breast only has about a 50/50 success rate with implants. The tissue doesn't stretch as well. Mine has been successful as far as the stretching. The unaffected side was a piece of cake. My radiated side hurt every time she filled it. And it is still higher than the non radiated side. We are going to wait longer than the 4 weeks to see if it will drop some to match the non radiated side....
  • denbralou
    denbralou Member Posts: 66
    #14
    blabrn1 said:

    double mastectomy
    I asked about this option early in my treatment process but was talked into lumpectomy and node removeal. 2years after my treatment of surgery and chemo and radiation, I had a double mastectomy. I had new calcifications in the other breast and did not want to "watch and wait" with all the breast cancer in my family. I also am positive for Factor V, which is an extra clotting factor so I do not qualify for DIEP, which would have been my choice if I had qualified. I did not do the tram flap because I have been so active kayaking, etc that I did not want to risk back injury or hernia. So, I have gone with silicone implant plan. I just had my expanders filled to capacity last week. Now we wait 4 weeks until the real implants.

    I'm glad to be doing this now, without having to think so much about active cancer. However, I would have done this two years ago if my old oncologist would have answered my questions fully about how chemo can cause cognitive issues and that the radiated breast only has about a 50/50 success rate with implants. The tissue doesn't stretch as well. Mine has been successful as far as the stretching. The unaffected side was a piece of cake. My radiated side hurt every time she filled it. And it is still higher than the non radiated side. We are going to wait longer than the 4 weeks to see if it will drop some to match the non radiated side....

    Thanks everyone
    Thanks to everyone for your replies, I greatly appreciate all the input, tomorrow I meet with the radiation oncologist to view my options.
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    #15
    denbralou said:

    Thanks everyone
    Thanks to everyone for your replies, I greatly appreciate all the input, tomorrow I meet with the radiation oncologist to view my options.

    Let us know what you decide
    Let us know what you decide Denbralou! Good luck to you!
  • denbralou
    denbralou Member Posts: 66
    #16
    survivorbc09 said:

    Let us know what you decide
    Let us know what you decide Denbralou! Good luck to you!

    Radiation and Masectomy & Expanders
    Okay, so I met with the radiation oncologist who said there is a 50% chance that I may need radiation. I called my onc nurse who is amazing, and discussed some issues with her. Then I got a call from my surgeon and she said she talked to the plastic surgeon and he is agreeable to do both expanders, but with my understanding that if I need radiation, there may be some complications. Any suggestions? Should I go ahead and do this since there is a 50% chance of radiation and see what happens?

    Any comments would greatly help. Thanks and hugs to all.
  • m-star
    m-star Member Posts: 441
    #17
    denbralou said:

    Radiation and Masectomy & Expanders
    Okay, so I met with the radiation oncologist who said there is a 50% chance that I may need radiation. I called my onc nurse who is amazing, and discussed some issues with her. Then I got a call from my surgeon and she said she talked to the plastic surgeon and he is agreeable to do both expanders, but with my understanding that if I need radiation, there may be some complications. Any suggestions? Should I go ahead and do this since there is a 50% chance of radiation and see what happens?

    Any comments would greatly help. Thanks and hugs to all.

    ok,so if you have both done
    ok,so if you have both done with expanders whats the worst case scenario?If You have to have rads on the affected breast only, and then you'll need the flap recon on that side?
    So the other side will still be ok to have the expander done?

    If thats the case,then at the end of the day,you'll have all your 'time bomb' breast tissue gone and you'll still be able to have some kind of reconstruction on both sides.

    I dont think breasts ever end up a perfect matching pair after recon-just as many breasts are not a perfect pair naturally-so i would try not to let that put you off hun.

    If it were me, i would want to reduce my risks by getting rid of the tissue,go for the expanders on both sides and hope you dont need rads.If you do,you can cross that bridge when you come to it,but you already know some options,ie,getting flap recon on 'bad' side.

    This is just my opinion though and i know you're really having a tough time with this.
    Im here for ya girl =)

    xx
  • denbralou
    denbralou Member Posts: 66
    #18
    m-star said:

    ok,so if you have both done
    ok,so if you have both done with expanders whats the worst case scenario?If You have to have rads on the affected breast only, and then you'll need the flap recon on that side?
    So the other side will still be ok to have the expander done?

    If thats the case,then at the end of the day,you'll have all your 'time bomb' breast tissue gone and you'll still be able to have some kind of reconstruction on both sides.

    I dont think breasts ever end up a perfect matching pair after recon-just as many breasts are not a perfect pair naturally-so i would try not to let that put you off hun.

    If it were me, i would want to reduce my risks by getting rid of the tissue,go for the expanders on both sides and hope you dont need rads.If you do,you can cross that bridge when you come to it,but you already know some options,ie,getting flap recon on 'bad' side.

    This is just my opinion though and i know you're really having a tough time with this.
    Im here for ya girl =)

    xx

    Thanks
    Thanks Kari and everyone. Still am trying to decide what to do. Decisions, decisions. How stressful.
  • pamomof2
    pamomof2 Member Posts: 15
    #19
    my step sister Lori went in
    my step sister Lori went in for her very first mammo at the advice of her obgyn, when she turned 40. Found pre cancercous cells completely through her one breast. She opted to have both removed. The one they had to take the other was her choice, although I think it was the best choice. It would be a worry she wouldn't have later on. Although she didn't have to go thru chemo, she did have the radiation and then later on had both her breasts reconstructed at same time....after she had healed a bit. She went to Magee in Pittsburgh for everything. She had the implants put in first, and then every couple weeks or so she went in to have the saline injections into the implants until they were the size she wanted them to be. She is fine and this was such a shock and a huge eye opener for her, that she is now a huge advocate for breast cancer and getting the first mammo early. She is involved in the 3 day walk in Philly and the Relay for Life in our county. I had a partial mastectomy of my left breast and opted not to have reconstruction. But everyone has their own preferences. Good Luck to you.
  • denbralou
    denbralou Member Posts: 66
    #20
    pamomof2 said:

    my step sister Lori went in
    my step sister Lori went in for her very first mammo at the advice of her obgyn, when she turned 40. Found pre cancercous cells completely through her one breast. She opted to have both removed. The one they had to take the other was her choice, although I think it was the best choice. It would be a worry she wouldn't have later on. Although she didn't have to go thru chemo, she did have the radiation and then later on had both her breasts reconstructed at same time....after she had healed a bit. She went to Magee in Pittsburgh for everything. She had the implants put in first, and then every couple weeks or so she went in to have the saline injections into the implants until they were the size she wanted them to be. She is fine and this was such a shock and a huge eye opener for her, that she is now a huge advocate for breast cancer and getting the first mammo early. She is involved in the 3 day walk in Philly and the Relay for Life in our county. I had a partial mastectomy of my left breast and opted not to have reconstruction. But everyone has their own preferences. Good Luck to you.

    Thanks
    Thanks pamomof2 for the info. These decisions are so hard to make and you want to make the right ones, it is always good to hear someone else's opinion. Thanks agin to all.
  • Angie2U
    Angie2U Member Posts: 2,991
    #21
    denbralou said:

    Thanks
    Thanks pamomof2 for the info. These decisions are so hard to make and you want to make the right ones, it is always good to hear someone else's opinion. Thanks agin to all.

    Wishing you good luck in
    Wishing you good luck in whatever decision you make Denbralou!

    Hugs, Angie

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