Help - bilateral mastectomy or ?

aggiemom51
aggiemom51 Member Posts: 7
edited March 2014 in Breast Cancer #1
Hi, I'm 51 year old single female diagnosed with stage IIb, grade 3 invasive BC involving the lymph nodes on right side. opted for bilateral mastectomy with reconstruction of tissue expanders on left and right. However, I'm also Triple Negative and oncologist wants to start chemo as soon after surgery as possible and with tissue expanders it will delay chemo by 2-3 weeks. My reconstruction surgeon advised reconstruction on the left side only due to how radiation will affect the right and good chance that I will have to have redo reconstruction after recovering from radiation. My general surgeon suggested leaving the left breast alone until after radiation and then remove the left breast and have reconstruction on both at that time.

I'm scheduled for surgery on Sept 4 and I'm really confused as to what to do. My mind was set on taking both breast and having the tissue expanders....but with what I have found out I'm wondering if just taking the right breast and not doing anything else would be best. I know the recovery time would be shorter just removing the right. I'm left handed, which would be good if I left the left alone. Also, I will need to get back to work as quickly as possible...though I can work from home some.

My other concern is emotionally being able to handle looking at myself with just one breast. I know there are prosthesis to wear, but what about when wearing a night gown. That really bothers me...how I would feel when wearing that and not having a right breast.

Is there anyone out there that can give me insight or has dealt with this same issue. I would really appreciate your thoughts.

By the way I live in Texas

Comments

  • Kylez
    Kylez Member Posts: 3,761 Member
    Hi
    Hi aggiemom and welcome. So sorry for the reason that you are here. I had a lumpectomy followed by radiation treatments, so, I can't offer anything inre to reconstruction or a mastectomy. But, many on here can and will. This is such a personal decision and choice. Do what is right for you and what you can live with. Good luck!

    ♥ Kylez ♥
  • aggiemom51
    aggiemom51 Member Posts: 7
    Kylez said:

    Hi
    Hi aggiemom and welcome. So sorry for the reason that you are here. I had a lumpectomy followed by radiation treatments, so, I can't offer anything inre to reconstruction or a mastectomy. But, many on here can and will. This is such a personal decision and choice. Do what is right for you and what you can live with. Good luck!

    ♥ Kylez ♥

    thank you for responding. I
    thank you for responding. I understand about it being a personal decision and choice..but question my original plan of action. I hope to hear from more women that possibly have been in this situation. I wish you the best in your recovery.
  • zahalene
    zahalene Member Posts: 670

    thank you for responding. I
    thank you for responding. I understand about it being a personal decision and choice..but question my original plan of action. I hope to hear from more women that possibly have been in this situation. I wish you the best in your recovery.

    aggie,
    I lost my right breast in 1986 and the left one in 1988. I had no choice either time. So, for about a year and a half I was 'one sided'. Of course, I did not know during that time that I would eventually be 'breastless' and so just accepted it. (I chose not to have recon). It was doable.
    However, I found after loosing the second breast (still no recon) that it was easier to dress and look and feel more normal. I was married at the time, and like you, I was self-conscious at first about how I looked in night clothes and such, even in front of my husband. (I later figured out that a lot of my feelings were tied to his attitude about the situation.) However, after awhile I regained my perspective about my body image (not loving it, but not hating it either), and eventually it became a non-issue.
    I guess the point of all this is to say, do first of all whatever gives you the best chance of a cancer-free future. You will adjust to each phase as it comes and find that your life is worth so much more than how you look.
    There is life after cancer, and it is GOOD.
    God bless.
  • Strawgirl
    Strawgirl Member Posts: 9
    I understand (Canadian Woman)
    I was 36 yrs when told I had stage three ovarian cancer in 1991. In 1998 found a lump on my left breast it was a whirlwind....no time the breast had to come off, surgery was two weeks later. I thought I could handle it ("if the breast had to come off it had to come off", to my surprise I fell apart. My doctor said "women who think they can cope with the loss of the breast are the ones that usually take it the hardest and let me tell you I took it hard!! I would gag when I saw myself in the mirror. One thing that I regret is jumping to the decision of my reconstruction. I had a tram flap (a surgery they don't do in Canada anymore). My advice is to not make any decisions with your emotions involved......not sure how to turn emotions off but maybe time would help. If you have any questions you may want to ask feel free to contact me.
    Take care
  • mlmjt1
    mlmjt1 Member Posts: 537
    Hi aggiemom
    I am 52 year old diagnosed with stage 3 invasive breast cancer on the right. My cancer was in the sentinel node only with 21 lymphnodes clear. My left breast had a suspicious area on the mri but I have fibrocystic breast disease so was very definitely going to have bilateral mastectomy with expanders. It turned out that the left side was ok after all. I am her2positive, negative with everything else.

    I ended up having surgery on May 13 and 1 month later developed a wound on the right side which was going to delay my chemo as well. My oncologist told me that the optimum time to start chemo is about 6 wks after surgery but could go as long as 12 wks. I ended up having the expander removed on the right side, the plastic surgeon debrided the wound, placed a drain in and closed it and it has remained closed. I started chemo I think on week 7 and so far so good, as good as you can be on chemo.

    The difference between me and you and the triple negative issue. Ask your oncologist what the safe range is to start chemo. Without complications I would have started on week 4. Also, maybe Im wrong but I thought if you had mastectomies you would not need radiation...but I dont know for sure about that.

    AS far as looking at yourself with 1 breast, well I will say that body image issues are definitely there. My right breast after 2 surgeries looks like it was run over by a lawn mower (well maybe not quite that bad) and that coupled with no hair is a little scary...but you know what? I am here...my life goes on both the good and bad...I can still work, watch football, take the dog for a walk and love my family and that trumps everything else.

    Your decision is definitely your own...if it were me, I would do whatever will be the easiest on you as far as recovery goes. If after mastectomy you are ready to go in 2 wks for chemo and that is what oncology thinks is best for you in the long run, then reconstruction can be done anytime down the road. Mine will have to wait at least until sometime after the first of the year.

    Post often and let us know how you are doing... this site is the best...we really truly care about each other here..you will see that as you post..please dont go it alone cuz we are here for you

    Hugs
    Linda T from wisconsin (go packers)
  • lolad
    lolad Member Posts: 670
    Welcome
    to the site and be glad that you found us here. You will find out there are wonderful people who are so supportive. The journey through all of this is very hard. I had a double mastectomy with tissue expanders placed in at the same time. I am doing chemo right now as well. I go every two weeks or so and have the expanders filled with saline and eventually will have another surgery to do the permanent implants. Im not sure why you surgeon wants you to wait on the other breast, but there must be a reason. It is very emotional to lose the breast. I had a hard time and for a while would think of myself as some kind of alien or something because i felt so ugly without my breast there. I just started thinking that they will someday be back there and hey, they will be nice and perky now too! You are not alone in feeling the way you do. Like your surgeon said, you can always go back and finish the job later after you have your chemo and stuff. Keep coming here to the board and share your feelings and news on your progress. You will find out that it helps so much to know that there are others just like you and they know what you are going through. Take care of yourself and you are in my thoughts and prayers.

    laura
  • DianeBC
    DianeBC Member Posts: 3,881 Member
    lolad said:

    Welcome
    to the site and be glad that you found us here. You will find out there are wonderful people who are so supportive. The journey through all of this is very hard. I had a double mastectomy with tissue expanders placed in at the same time. I am doing chemo right now as well. I go every two weeks or so and have the expanders filled with saline and eventually will have another surgery to do the permanent implants. Im not sure why you surgeon wants you to wait on the other breast, but there must be a reason. It is very emotional to lose the breast. I had a hard time and for a while would think of myself as some kind of alien or something because i felt so ugly without my breast there. I just started thinking that they will someday be back there and hey, they will be nice and perky now too! You are not alone in feeling the way you do. Like your surgeon said, you can always go back and finish the job later after you have your chemo and stuff. Keep coming here to the board and share your feelings and news on your progress. You will find out that it helps so much to know that there are others just like you and they know what you are going through. Take care of yourself and you are in my thoughts and prayers.

    laura

    Hi and welcome. I didn't
    Hi and welcome. I didn't have a mastectomy, I had a lumpectomy, but, wanted to welcome you here.

    Hugs, Diane
  • aggiemom51
    aggiemom51 Member Posts: 7
    Kylez said:

    Hi
    Hi aggiemom and welcome. So sorry for the reason that you are here. I had a lumpectomy followed by radiation treatments, so, I can't offer anything inre to reconstruction or a mastectomy. But, many on here can and will. This is such a personal decision and choice. Do what is right for you and what you can live with. Good luck!

    ♥ Kylez ♥

    hi there Kylez...thanks for
    hi there Kylez...thanks for the encouraging words. this site has been very helpful.

    cheryl
  • aggiemom51
    aggiemom51 Member Posts: 7
    mlmjt1 said:

    Hi aggiemom
    I am 52 year old diagnosed with stage 3 invasive breast cancer on the right. My cancer was in the sentinel node only with 21 lymphnodes clear. My left breast had a suspicious area on the mri but I have fibrocystic breast disease so was very definitely going to have bilateral mastectomy with expanders. It turned out that the left side was ok after all. I am her2positive, negative with everything else.

    I ended up having surgery on May 13 and 1 month later developed a wound on the right side which was going to delay my chemo as well. My oncologist told me that the optimum time to start chemo is about 6 wks after surgery but could go as long as 12 wks. I ended up having the expander removed on the right side, the plastic surgeon debrided the wound, placed a drain in and closed it and it has remained closed. I started chemo I think on week 7 and so far so good, as good as you can be on chemo.

    The difference between me and you and the triple negative issue. Ask your oncologist what the safe range is to start chemo. Without complications I would have started on week 4. Also, maybe Im wrong but I thought if you had mastectomies you would not need radiation...but I dont know for sure about that.

    AS far as looking at yourself with 1 breast, well I will say that body image issues are definitely there. My right breast after 2 surgeries looks like it was run over by a lawn mower (well maybe not quite that bad) and that coupled with no hair is a little scary...but you know what? I am here...my life goes on both the good and bad...I can still work, watch football, take the dog for a walk and love my family and that trumps everything else.

    Your decision is definitely your own...if it were me, I would do whatever will be the easiest on you as far as recovery goes. If after mastectomy you are ready to go in 2 wks for chemo and that is what oncology thinks is best for you in the long run, then reconstruction can be done anytime down the road. Mine will have to wait at least until sometime after the first of the year.

    Post often and let us know how you are doing... this site is the best...we really truly care about each other here..you will see that as you post..please dont go it alone cuz we are here for you

    Hugs
    Linda T from wisconsin (go packers)

    Packer Fan
    Hi Linda T.
    thank you for sharing your story...it was very helpful. I know I'm going to have to work on this outward appearance thing. I went online to look at pictures of what to expect and they were really hard to look at. I go see my oncologist tomorrow and have some new questions to ask thanks to you and this site.

    good luck to you and hope to talk to you again.

    Cheryl from Texas (suppose to be cheering for Dallas...but I really like some of the other teams better)
  • lynn1950
    lynn1950 Member Posts: 2,570
    Welcome to This Site
    ♥♥♥ Welcome to this site although I am sorry for the reason you are here. Here is my experience. I had a bilateral mastectomy a year ago last April. The left side, including 7 nodes, had cancer and the right side was cancer-free. I didn't want to ever have to have a second surgery because of breast cancer, didn't want to deal with a prothesis, was ambivalent about reconstruction, and never liked wearing bras, anyway. My surgeon left a little space on both sides, should I decide to have reconstruction (I am still on the fence, though I finished radiation last October!). I was advised to wait 9 months until begin reconstruction after radiation; it takes time to heal. I am getting used to being flat-chested and although the scars still bother me, I am even getting used to them. ♥♥♥Lynn
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    Help - bilateral mastectomy or ?
    Thank you Pink sisters for sharing .. this have given me some food for thought .. as I go in tomorrow for my 2nd opinion results.

    I have opted for double mac'tmy .. asked for the flap technique, I was told no, as here in California .. Plastic surgeron's have a hard time getting that techique qualified thru insurance companies. Damn, there goes my idea for stomach bump reduction.

    I truly appreicate you all and comments.

    VickiSam
  • Tyari
    Tyari Member Posts: 36
    New to boards and maybe some insight
    Hello! I'm a 34 yr old stay at home mom to a 2 yr old little girl. On June 6th 2009 I got diagnosed with invasive ductile carcinoma in my left breast. I opted for a bilateral because of family history. I had surgery on July 21, 2009, I also got expanders put in the same day.

    The cancer was in 3 of the 4 sentinel nodes they removed so they took out a cluster of 13 more and they were clean. I get my port for chemo tomorrow Aug, 25. Then on friday I go for a fill to my expanders and my teaching for chemo.

    My plastic surgeon and I have discussed this and we are just going to take the fills slow and not do any reconstruction until my radiation treatments are over.

    You get used to the way you look without breasts, it takes time but you do. I do not wear any prostetics at home or out. Yes my clothes look kinda funny hehe! But I figure if people want to look, well go ahead.

    So if you get the bilateral and expanders just take it slow. Your doctors will work it out with you. Just don't let them talk you into what they think is right for you, only you will know that. And with the bilateral you only have to go through that recovery once. And you'll be really surprised at how quick you get moving again.

    And sorry for the rambling and misspells ;)
  • Wolfi
    Wolfi Member Posts: 425
    Tyari said:

    New to boards and maybe some insight
    Hello! I'm a 34 yr old stay at home mom to a 2 yr old little girl. On June 6th 2009 I got diagnosed with invasive ductile carcinoma in my left breast. I opted for a bilateral because of family history. I had surgery on July 21, 2009, I also got expanders put in the same day.

    The cancer was in 3 of the 4 sentinel nodes they removed so they took out a cluster of 13 more and they were clean. I get my port for chemo tomorrow Aug, 25. Then on friday I go for a fill to my expanders and my teaching for chemo.

    My plastic surgeon and I have discussed this and we are just going to take the fills slow and not do any reconstruction until my radiation treatments are over.

    You get used to the way you look without breasts, it takes time but you do. I do not wear any prostetics at home or out. Yes my clothes look kinda funny hehe! But I figure if people want to look, well go ahead.

    So if you get the bilateral and expanders just take it slow. Your doctors will work it out with you. Just don't let them talk you into what they think is right for you, only you will know that. And with the bilateral you only have to go through that recovery once. And you'll be really surprised at how quick you get moving again.

    And sorry for the rambling and misspells ;)

    Another bilateral
    Tyari,

    What a cute little girl!

    Good luck getting your port today. I hope all goes well - you sound like you have adjusted (mentally) to your changes. I'm going in for my bilateral tommorow morning and except for a few panic attacks (and some bad dreams at night) I am all set for "the change" to take place.

    I wouldn't wish bc on anyone and am thankful that I found this website to help get me through everything I'm feeling.
  • Tyari
    Tyari Member Posts: 36
    Wolfi said:

    Another bilateral
    Tyari,

    What a cute little girl!

    Good luck getting your port today. I hope all goes well - you sound like you have adjusted (mentally) to your changes. I'm going in for my bilateral tommorow morning and except for a few panic attacks (and some bad dreams at night) I am all set for "the change" to take place.

    I wouldn't wish bc on anyone and am thankful that I found this website to help get me through everything I'm feeling.

    hehe yeah thank you, she is
    hehe yeah thank you, she is a cutie (but I'm biased ;) ) Good Luck to you too!! Just think of that nice long uninterupted nap you'll get ;)

    You'll need it too, those nurses are ruthless about getting you up and moving ASAP!! lol

    Again Good Luck!