afraid to finish my reconstruction

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minusonebobby
minusonebobby Member Posts: 6
edited February 2012 in Breast Cancer #1
I am new here, and am so wanting to talk to others who have had bad feelings about their reconstruction surgery. I had the Latissimus flap (SP) and have a huge scar running down the right side of my body, in addition to the scars across and around the breast. I chose this surgery because my body doesn't welcome foreign objects easily. I was told there would be a two inch scar. They said they ran into complications because I was so "tight" Sometimes I have severe nerve pain. It took me so long to heal after the surgery, and I am so far from anywhere near normal. I am scared to finish my surgergy, and I can't imagine anything they could do to make this look better. I am a single mom, and my self esteem has suffered so greatly, not only because of this, but all the other issues that come with breast cancer, and my own personal problems as well. Has anyone else had such a bad experience with reconstruction. I hear so many pple who have had implants and are so happy. If I had known then what I know now, I would have never had this done. I try not to think about it and rarely look at myself. I have also gained weight during my ordeal. It is so hard to talk about this to anyone, because they have the attitude that I should just be grateful to be alive, and do not understand at all. I have a close friend who has had breast cancer twice. she and I met at a respite retreat and just instantly hit it off. She has seen my scars and has told me to go somewhere else, and see what can be done. I went to a very reputable place for my surgery. And I still go there for my ooncology needs, I would not wish to harbor ill will. Besides, I am on medicaid, and unsure if they will allow me to get second opinions, and what my rights really are. I have a lot of difficulties in my life, and really don't think I have the fight in me to deal with all the issues going somewhere else might create. I have to prioritize and balance with all the other crap. Hmmm, well any thoughts or musings on this matter would be greatly appreciated.

Comments

  • jessiesmom1
    jessiesmom1 Member Posts: 915 Member
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    My Reconstruction Experience
    Believe me, you are not alone in having problems with your reconstruction. You came to the right place for support. Prior to my mastectomy (right side only) I met with a plastic surgeon and decided to go with a tissue expander and then replace it with an implant later on. He was present at the time of the mastectomy and placed the tissue expander and closed me up. When I was finished with all my treatment I went back to him to discuss the next step. He was ready to schedule the exchange surgery until I pointed out that we had not done a single fill except for what he put in the expander in the first place. He clearly had not bothered to read my chart. He did a fill right then and 3 weeks later I had the exchange surgery. The recovery went OK but the result on the reconstructed side was awful. I mentioned it during several follow-up visits. He told me that is just the way I was going to look and I would have to live with it. He said I should not expect miracles. At that point I decided to consult another plastic surgeon. Well, I saw THREE other plastic surgeons and my general surgeon. The general surgeon rated the job done as a 4 out of 10. I chose a new plastic/reconstructive surgeon and had my revision-reconstruction surgery about 6 weeks ago. What a difference. Clearly improvement was possible. My original plastic surgeon did not have the desire or obviously the skill to do what was necessary. I am angry that I had to undergo 4 1/2 hours of surgery under general anesthesia to fix what should not have happened in the first place. I should mention that on the non-cancer side I had a breast lift/reduction at the same time as the initial reconstruction and that looks pretty good.

    I am not familiar with how Medicaid works but there must be someone who can provide you with information on what is covered under that system. You are in a tough position but you have the right to look and feel as close to normal as possible. That is precisely the reason I went through another major surgery - much to my husband's dismay. He would have been fine had I done no reconstruction whatsoever. Despite being a colon cancer survivor himself, he just does not understand what losing a breast has done to me psychologically.

    I understand when you say you are not sure if you have the fight in you to go elsewhere. This is a lot to deal with. All I can tell you is that, for me, going elsewhere was a absolutely worth it and a good decision.

    Please let us know what you decide to do. Good luck.

    IRENE
  • minusonebobby
    minusonebobby Member Posts: 6
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    My Reconstruction Experience
    Believe me, you are not alone in having problems with your reconstruction. You came to the right place for support. Prior to my mastectomy (right side only) I met with a plastic surgeon and decided to go with a tissue expander and then replace it with an implant later on. He was present at the time of the mastectomy and placed the tissue expander and closed me up. When I was finished with all my treatment I went back to him to discuss the next step. He was ready to schedule the exchange surgery until I pointed out that we had not done a single fill except for what he put in the expander in the first place. He clearly had not bothered to read my chart. He did a fill right then and 3 weeks later I had the exchange surgery. The recovery went OK but the result on the reconstructed side was awful. I mentioned it during several follow-up visits. He told me that is just the way I was going to look and I would have to live with it. He said I should not expect miracles. At that point I decided to consult another plastic surgeon. Well, I saw THREE other plastic surgeons and my general surgeon. The general surgeon rated the job done as a 4 out of 10. I chose a new plastic/reconstructive surgeon and had my revision-reconstruction surgery about 6 weeks ago. What a difference. Clearly improvement was possible. My original plastic surgeon did not have the desire or obviously the skill to do what was necessary. I am angry that I had to undergo 4 1/2 hours of surgery under general anesthesia to fix what should not have happened in the first place. I should mention that on the non-cancer side I had a breast lift/reduction at the same time as the initial reconstruction and that looks pretty good.

    I am not familiar with how Medicaid works but there must be someone who can provide you with information on what is covered under that system. You are in a tough position but you have the right to look and feel as close to normal as possible. That is precisely the reason I went through another major surgery - much to my husband's dismay. He would have been fine had I done no reconstruction whatsoever. Despite being a colon cancer survivor himself, he just does not understand what losing a breast has done to me psychologically.

    I understand when you say you are not sure if you have the fight in you to go elsewhere. This is a lot to deal with. All I can tell you is that, for me, going elsewhere was a absolutely worth it and a good decision.

    Please let us know what you decide to do. Good luck.

    IRENE

    thank you so much for
    thank you so much for sharing your story with me. like I said, I don't know if I have the fight left in me, I am still putting my life together in so many ways. I am incomplete everywhere. There is so much that I need to do. I definately want to complete the surgery, but there is more pressing issues right now. I hope when I am ready, I will be able to find a more competent surgeon. I was wondering if maybe a female plastic surgeon would be more sympathetic to my plight. Any thoughts on this? I would also appreciate more input on other reconstructive whoas, and if anyone has gone through what I have, and gotten it "fixed" . Like I said, I have completely stopped everything. I was supposed to go through several more steps. I just can't see me going back to the other surgeon. But I would love to hear other success stories. And, what about the horrific scarring, is there anything to be done with that? I was told that it is just how I healed, and it would take time. It has been over a year. When I had the mastectomy done, it seemed to heal much better and after a year, it looked much better than what my scars look like now, way over a year later. I feel like a Tim Burton character. oddly out of proportion, with jagged ugly etchings everywhere.
  • Frankie Shannon
    Frankie Shannon Member Posts: 457
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    thank you so much for
    thank you so much for sharing your story with me. like I said, I don't know if I have the fight left in me, I am still putting my life together in so many ways. I am incomplete everywhere. There is so much that I need to do. I definately want to complete the surgery, but there is more pressing issues right now. I hope when I am ready, I will be able to find a more competent surgeon. I was wondering if maybe a female plastic surgeon would be more sympathetic to my plight. Any thoughts on this? I would also appreciate more input on other reconstructive whoas, and if anyone has gone through what I have, and gotten it "fixed" . Like I said, I have completely stopped everything. I was supposed to go through several more steps. I just can't see me going back to the other surgeon. But I would love to hear other success stories. And, what about the horrific scarring, is there anything to be done with that? I was told that it is just how I healed, and it would take time. It has been over a year. When I had the mastectomy done, it seemed to heal much better and after a year, it looked much better than what my scars look like now, way over a year later. I feel like a Tim Burton character. oddly out of proportion, with jagged ugly etchings everywhere.

    So sorry for what you are
    So sorry for what you are going through i can't share any reconstruction with you as i had bil.mastectomy with no reconstruction as i was 67 that was in July 2010 at the time and didn't want to go through that and i have never regretted it.Just wanted to give my support.Strength,Courage and Hope.Hugs Frankie
  • New Flower
    New Flower Member Posts: 4,294
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    So sorry for what you are
    So sorry for what you are going through i can't share any reconstruction with you as i had bil.mastectomy with no reconstruction as i was 67 that was in July 2010 at the time and didn't want to go through that and i have never regretted it.Just wanted to give my support.Strength,Courage and Hope.Hugs Frankie

    I am with you
    Sometime I am having similar thoughts. I have had DIEP flap in 2008 and have never finished the way my plastic sur wants. Just stopped and having scars and assymetrical breasts. I lost my courage to go under knife and have been having other side effects and complications.
    I understand.
    I will write later to you
  • Angie2U
    Angie2U Member Posts: 2,991
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    So sorry for what you are
    So sorry for what you are going through i can't share any reconstruction with you as i had bil.mastectomy with no reconstruction as i was 67 that was in July 2010 at the time and didn't want to go through that and i have never regretted it.Just wanted to give my support.Strength,Courage and Hope.Hugs Frankie

    I am so sorry for what
    I am so sorry for what you're going through now. Sending you hugs and support!
  • Rague
    Rague Member Posts: 3,653 Member
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    No help from me
    I can't give you any input as I still haven't looked into recon yet and not sure if I ever do. Being IBC, recon is not an option for at least a year anyway. I had decided I was going to look into it last winter but something came up and I didn't. Was going to this winter but eyes decided to get cataracts so that's being done this winter so perhaps next winter I'll look into recon. (There's no way that I'll give up a single summer day to elective surgery.)

    I deal with a fair bit of lymphedema so not even sure if recon would be an option anyway. I'm quite comfortable with who I am as I am - BUT maybe? I am afraid of something not going as it should and being less 'happy' with the results than I am today. Hubby really does not want me to do recon as he doesn't want me to do any unnecessary surgeries but if I decide to, he'll support me in my decission.

    I've never dealt with Medicaide so can't give you any help there. There must be somewhere on line where you can find info. Might try googling.

    I firmly believe there is a Dr out there that can improve on what was done to you - It may take some time and work to find the right one but he or she is out there somewhere for you.

    Thoughts and prayers.

    Susan
  • zahalene
    zahalene Member Posts: 670
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    This may be no help at all...
    ...but just in case, let me say a few words.
    I lost one breast in 1986 at age 38 and the other in 1988 at age 40.
    I chose to have no recon. Believe me, I thought long and hard about it.
    I am now 63 (it has been over 25 years) and still 'breastless'.
    What I want to say to you is that what you are thinking and feeling now is your reality.
    However, over time your perspective will change.
    Whatever you decice to do or not do now won't be such a 'big deal' to you later in life.
    I lost my marriage somewhere in the shuffle but am now with a man who loves me dearly in spite of my imperfections (physical and otherwise).
    My point is that things change and change and change. And regret is just not what we are going through this battle to aspire to. In time, slowly, you will accept whatever decisions you make now as being the best you could do with who and where you were at the time. You will learn to love yourself, however you are.
    That is one of the greatest, and perhaps most difficult, hurdles we cancer survivors have to make. But we do it because we do what we have to do in order to do what we want to do.
    God bless.
  • jne66
    jne66 Member Posts: 26
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    I'm on a medical card too.
    I'm on a medical card too. My state very big on rights for breast cancer. You do have the right to a second opinion. Do you have someone who can go with to help as an advocate? Maybe contact local cancer support group. You have rights no matter what your insurance status. I know it stinks. It leaves us bald, bloated and boobless. It gets better.
  • skipper54
    skipper54 Member Posts: 936 Member
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    jne66 said:

    I'm on a medical card too.
    I'm on a medical card too. My state very big on rights for breast cancer. You do have the right to a second opinion. Do you have someone who can go with to help as an advocate? Maybe contact local cancer support group. You have rights no matter what your insurance status. I know it stinks. It leaves us bald, bloated and boobless. It gets better.

    Hope you find a better PS
    I must admit that I love my PS and his attitude. He lost his mother to breast cancer and is very up front about it and what he wants to do. In his words, "I can't change what has happened to you BUT I can make what happens now the best I can and I'm committed to my breast cancer patients." He has spent a lot of time with me and explained my options. He was suggested by my general surgeon and the normal wait time to see him is 2 to 3 months. I like busy docs! There's a reason they're busy. My surgery was just on the 10th but I'm happy with the outcome so far. I hope you can resolve your issues and be just as happy, whatever you decide. Gentle {{{HUGS}}} and prayers for calm and resolutions.
  • butterflylvr
    butterflylvr Member Posts: 944
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    skipper54 said:

    Hope you find a better PS
    I must admit that I love my PS and his attitude. He lost his mother to breast cancer and is very up front about it and what he wants to do. In his words, "I can't change what has happened to you BUT I can make what happens now the best I can and I'm committed to my breast cancer patients." He has spent a lot of time with me and explained my options. He was suggested by my general surgeon and the normal wait time to see him is 2 to 3 months. I like busy docs! There's a reason they're busy. My surgery was just on the 10th but I'm happy with the outcome so far. I hope you can resolve your issues and be just as happy, whatever you decide. Gentle {{{HUGS}}} and prayers for calm and resolutions.

    HI,
    My heart reaches out to you my dear, remember you are never alone as we here on this board value each and every pink sister in this family. I had reconstruction too, but I chose the implant route. Let me tell you that the results aren't always spectacular in that situation either. I had my implant exchange surgery in November (took out tissue expanders) and I will require one more surgical procedure to remove excess skin and probably have to do a little bit of fat grafting taking fat cells from my stomach. I was larger chested prior to my double mastectomy so implants didn't quite fill the space that my own boobs left. I too carry large scars in the shape of an upside down T on each breast. I guess none of us will be completely satisfied with our end appearance, but with the love and support here you grow to love your body and the battle scars that go with it. Life is so precious...

    Keep in touch with us ... we are here for you always.

    Lorrie
  • minusonebobby
    minusonebobby Member Posts: 6
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    Thank you to all who took
    Thank you to all who took the time to respond. It's funny sometimes I never even think about it, but at other times not being "complete" really bother me.l I guess it depends on what's on my plate at the time. All in all, I agree with what everyone has said. LOL, it's weird that we can have so many different emotions. I still am undecided as to what's next when it comes to reconstruction. I do hope that one day I will come to a decision, but right now I'm busy looking for job, and daycare, and dealing with life. Sometimes it's a welcome distraction. : )
  • Rague
    Rague Member Posts: 3,653 Member
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    Thank you to all who took
    Thank you to all who took the time to respond. It's funny sometimes I never even think about it, but at other times not being "complete" really bother me.l I guess it depends on what's on my plate at the time. All in all, I agree with what everyone has said. LOL, it's weird that we can have so many different emotions. I still am undecided as to what's next when it comes to reconstruction. I do hope that one day I will come to a decision, but right now I'm busy looking for job, and daycare, and dealing with life. Sometimes it's a welcome distraction. : )

    "and dealing with life"
    That says it all - you are alive and living it - not in the ideal BUT still alive and living it. Nobody ever said all of life is exactly what we want but to me I'll take every day however it comes rather than the alternative.

    Thoughts and prayers.

    Susan
  • nandit61
    nandit61 Member Posts: 1
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    You know, sometimes I also
    You know, sometimes I also get so tired of being strong all the time. So its ok to feel low and really talk about your fears. I signed in to this society today because I have just been daignosed ...with another malignant tumour. Had an MRM and operation on the left side 2 years ago. Going in for the removal of the second breast in anohter 10 days. While I cannot help you with your problem, I just wanted to let you know that I understand your pain and feelings. I havent had any reconstructive surgery, and use a prosthetic. I do have the support of my family, so that helps. My daughter is a pillar of strength, and comes up with the most simple common sense pieces of advice, that tend to help me focus on the positive. I guess thats what the person who told you to be thankful to be alive meant. My fav saying.."I had no shoes and I complained and then I met a man with no feet."
    As for changing the hospital, well, that too is something I am doing this time...as I had sort of started losing confidenc e in the hospital I went to for the last one...not in the treatment, but in the follow up care. I underwent the PET scan on my own, and found the present tumour. They had kept on postponing it saying they would check out with a mammogram in the next check up. I also met a woman, who had religiously kept up her appointments and check ups for 4 years, and yesterday, a PET scan revealed that the cancer had spread beyond help...the whole body! So a change in hospital , in my case has brought me a lot of relief mentally. I dont know if I'm helping you...Sometimes asking somebody may be a good idea. Perhaps your insurance will support you.
  • Alexis F
    Alexis F Member Posts: 3,598
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    Thank you to all who took
    Thank you to all who took the time to respond. It's funny sometimes I never even think about it, but at other times not being "complete" really bother me.l I guess it depends on what's on my plate at the time. All in all, I agree with what everyone has said. LOL, it's weird that we can have so many different emotions. I still am undecided as to what's next when it comes to reconstruction. I do hope that one day I will come to a decision, but right now I'm busy looking for job, and daycare, and dealing with life. Sometimes it's a welcome distraction. : )

    When or if you are ready,
    When or if you are ready, you will do what's best for you. We're here to support you!


    Hugs, Lex
  • mamolady
    mamolady Member Posts: 796 Member
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    thank you so much for
    thank you so much for sharing your story with me. like I said, I don't know if I have the fight left in me, I am still putting my life together in so many ways. I am incomplete everywhere. There is so much that I need to do. I definately want to complete the surgery, but there is more pressing issues right now. I hope when I am ready, I will be able to find a more competent surgeon. I was wondering if maybe a female plastic surgeon would be more sympathetic to my plight. Any thoughts on this? I would also appreciate more input on other reconstructive whoas, and if anyone has gone through what I have, and gotten it "fixed" . Like I said, I have completely stopped everything. I was supposed to go through several more steps. I just can't see me going back to the other surgeon. But I would love to hear other success stories. And, what about the horrific scarring, is there anything to be done with that? I was told that it is just how I healed, and it would take time. It has been over a year. When I had the mastectomy done, it seemed to heal much better and after a year, it looked much better than what my scars look like now, way over a year later. I feel like a Tim Burton character. oddly out of proportion, with jagged ugly etchings everywhere.

    new surgeon
    Irene is right. There is a huge difference in surgeons. I would hope you would be able to get a second opinion. Since you are still going to that clinic for the onc part, if you just say you want a second opinion, it shouldn't ruffle any feathers. If possible, find personal referrals. The social worker in our oncology department suggested I go to the BC support group and ask about the surgeons.
    A really good surgeon should be able to help with the scars too.

    Cindy
  • lolad
    lolad Member Posts: 670
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    Your story is so simular to mine!!
    I am sorry that you are having these struggles that we have to face with breast cancer. I also had a double mastectomy. It first started with having tissue expanders placed in at the same time i had my mastectomy. So i went through the process of getting the "fills" to stretch my skin to prepare for implants. I developed an infection on the left breast that ended up having to have the left expander removed. They kept the right expander in and i went around like that for three months. I then had implants placed in and my body decided to not like the left one again. So they removed the left implant and took the dorsal muscle from my back on the left side and used that as a breast replacement for the left. So i had lopsided and unmatched sizes. The left hung low and the right high and round. I ended up with sepsus after that surgery and was in ICU for five days. I had to go to a new surgeon and wish that i would have done so sooner. I ended up having to have the right implant removed as well and using the doral muscle on the right side of my back to get it to where it looks a little better. I have a scare across my whole back and the front part of my breasts have skin flaps that are oval like and pretty big. Im still not done and i started with all of this in July of 2009. I know how you feel when you say you are suffering from your self esteem, have had weight gain and just want it over with. Im going through all of it too sister. I am also a single mom of three. Just keep coming here and getting advice and support and stay with your friend that you met. Keep your head up and keep faith. My faith is how i have made it this far. Know that you are a warrior and a fighter. I will be praying for you.
    take care
    Laura