newly diagnosed s/p bilat mastectomy with complications may 2009

lmmo
lmmo Member Posts: 56
edited March 2014 in Breast Cancer #1
Hi all, I am really in need of support and can not find any locally...also no therapists, psychologists are taking new patients with my insurance in my area.
I was diagnosed with mod differentiated invasive ductal carcinoma of the left breast. I chose a bilat mastectomy based on the Ki 67 proliferator in the tumor making it very aggressive. I chose immediate reconstruction. Unfortunately, several inches of the flaps became necrotic and had to be removed as well as the reconstruction. The skin is tight and burning. I am now told I can only have abdominal tissue reconstruction in 6-12 months. This is so depressing, since there was such a promise of being somewhat normal in a few months. My husband and family is supportive, we went through this a few years ago with hubby and stg 3 colon ca. I will need chemo and ovaries removed. Fortunately the lymph nodes were negative, but Oncotype DX came back very high risk of recurrence.
Has anyone else had such complications? This started 20 May and after 3 surgeries, I still have 1 drain in. I need to go back to work. I feel it is therapeutic for me, but need physical therapy due to my inability to lift my left arm (lymph nodes removed there) above my shoulder and the risk of tearing the incisions. My scars will be horrific and the plastic surgeon said I may never be able to look as I was due to these complications...
My 17 yr old daughter is so scared for her health. I am 44 and my husband was 37 with colon ca. I am scared for my son as well (19).
Please share your thoughts with me/my daughter...
Also had an inferior infarct (heart attack) recently that was diagnosed when I had an EKG before surgery...
Lisa
«1

Comments

  • lolad
    lolad Member Posts: 670
    lisa
    First of all know that you came to the right site to get the support and courage you need. They have all helped me soooo much and even have put a smile on my face from time to time. I had a double mastectomy and developed an infection. Keeflex took care of the infection, but they had told if it didnt work that they would have to remove the inserts. I have ugle scares and cant help but feel very ugly and unattractive. This is all normal. I cant imagine having to help your husband through his dx and then finding out about yours. Its like how much more can you take right? We all can totally relate to your fears and sadness. Sense of hopelessness at times. Try to keep faith and pray and know you will always have this wonderful group on the site to turn to.

    laura
  • lmmo
    lmmo Member Posts: 56
    lolad said:

    lisa
    First of all know that you came to the right site to get the support and courage you need. They have all helped me soooo much and even have put a smile on my face from time to time. I had a double mastectomy and developed an infection. Keeflex took care of the infection, but they had told if it didnt work that they would have to remove the inserts. I have ugle scares and cant help but feel very ugly and unattractive. This is all normal. I cant imagine having to help your husband through his dx and then finding out about yours. Its like how much more can you take right? We all can totally relate to your fears and sadness. Sense of hopelessness at times. Try to keep faith and pray and know you will always have this wonderful group on the site to turn to.

    laura

    support
    Thanks Laura!
    I have been spending the day perusing the topics...So many wonderful people for support here it seems.
    I have been on Keflex for a month. I am glad u kept the implants :-)
    Lisa
  • aurora2009
    aurora2009 Member Posts: 544 Member
    Welcome Lisa
    I'm so sorry to hear about all that you and your family have been going through. I only had a lumpectomy, am going in for a re-incission tomorrow, I'm alittle scared, but it's a far cry from what is happening with you right now.

    Just know you came to the right place for support, information, and compassion though. There are so many strong women here, (old and new) who will be able to relate to what you're going through.

    I'm so glad you found us, please come often and let us know how you're doing and remember to take one day at a time that's all you can do for now.

    God Bless You
    Aurora
  • rjjj
    rjjj Member Posts: 1,822 Member
    lmmo said:

    support
    Thanks Laura!
    I have been spending the day perusing the topics...So many wonderful people for support here it seems.
    I have been on Keflex for a month. I am glad u kept the implants :-)
    Lisa

    Welcome Lisa
    I am glad you found us here although i am sorry for the reason. You will be in my thoughts and prayers for healing.
    Hugs, jackie
  • Akiss4me
    Akiss4me Member Posts: 2,188
    Welcome Lisa...
    My, you have been through a lot in your young life. So sorry to hear of your latest trouble with your implants. There are a couple women here that have been through your situation and who will hopefully post soon for you. I had a lumpectomy, so I am not able to share a similiar experience with you. Hang in there, come here often, we will do our best to walk beside you. I will keep you in my prayers. :) Pammy
  • Christmas Girl
    Christmas Girl Member Posts: 3,682 Member
    Welcome, Lisa/lmmo
    We're all here to support and encourage each other. Glad you found us, though sorry for all the health issues. Your journey so far has been incredibly difficult, with serious complications. My own surgery was lumpectomy - I cannot specifically address your situation.

    I will encourage you to keep going, one step at a time. And will be hoping for the best for you.
  • Noel
    Noel Member Posts: 3,095 Member
    rjjj said:

    Welcome Lisa
    I am glad you found us here although i am sorry for the reason. You will be in my thoughts and prayers for healing.
    Hugs, jackie

    Just want to say hi and to
    Just want to say hi and to welcome you to the site also Lisa. I am so sorry for all that you have been thru and all that you still have ahead of you.

    I had a lumpectomy, so, I can't address your questions.

    But, just know that we are here for you. And, I will keep you in my prayers!

    Hugs, Noel
  • lmmo
    lmmo Member Posts: 56

    Welcome, Lisa/lmmo
    We're all here to support and encourage each other. Glad you found us, though sorry for all the health issues. Your journey so far has been incredibly difficult, with serious complications. My own surgery was lumpectomy - I cannot specifically address your situation.

    I will encourage you to keep going, one step at a time. And will be hoping for the best for you.

    Thanks

    First I want to say thank you!
    Second, this is my daughter's horse that may be better called a big puppy dog :-)
    My daughter is 17 and driving, so I do not see him often, but when I am at the barn I feel peace.

    I had an incisional biopsy the size of a golf ball originally removed on 2 June. Unfortunately the rays from the spiculated mass went beyond the margin of the lumpectomy so we knew I needed more surgery. My Ki 67 was 85%, so very high recurrence (this was before we got Oncotype DX back), so we chose a bilat mastectomy. Of course, if I knew how hard it would be I may have done breast sparing surgery, but I did not want radiation (an hour away from here) or anxiety that it would return.

    Please share with me and help me I am so frustrated.
  • Kylez
    Kylez Member Posts: 3,761 Member
    lmmo said:

    Thanks

    First I want to say thank you!
    Second, this is my daughter's horse that may be better called a big puppy dog :-)
    My daughter is 17 and driving, so I do not see him often, but when I am at the barn I feel peace.

    I had an incisional biopsy the size of a golf ball originally removed on 2 June. Unfortunately the rays from the spiculated mass went beyond the margin of the lumpectomy so we knew I needed more surgery. My Ki 67 was 85%, so very high recurrence (this was before we got Oncotype DX back), so we chose a bilat mastectomy. Of course, if I knew how hard it would be I may have done breast sparing surgery, but I did not want radiation (an hour away from here) or anxiety that it would return.

    Please share with me and help me I am so frustrated.

    I am so sorry Lisa. I had a
    I am so sorry Lisa. I had a lumpectomy, as, my tumor was very small. I had radiation treatments too. The cancer center for my rads was an hour and a half one way for me, but, it wasn't that big of a deal to save my breast and my life. And, the recurrence and life expectancy, as far as I know, is the same for a mastectomy as it is with a lumpectomy, as they can't possibly get all of the breast tissue even with a mastectomy.

    I will pray for you. I am so sorry that you have to go thru this!

    And, your daughter's horse is beautiful!
  • lmmo
    lmmo Member Posts: 56
    Kylez said:

    I am so sorry Lisa. I had a
    I am so sorry Lisa. I had a lumpectomy, as, my tumor was very small. I had radiation treatments too. The cancer center for my rads was an hour and a half one way for me, but, it wasn't that big of a deal to save my breast and my life. And, the recurrence and life expectancy, as far as I know, is the same for a mastectomy as it is with a lumpectomy, as they can't possibly get all of the breast tissue even with a mastectomy.

    I will pray for you. I am so sorry that you have to go thru this!

    And, your daughter's horse is beautiful!

    lumpectomy
    I am happy that you chose this route. My recurrence was too high so I chose mastectomies and I am not driving because I am unable to raise my arms above my shoulders because the skin is so tight.
    Thanks for the prayers!
  • dbs1673
    dbs1673 Member Posts: 203
    lmmo said:

    lumpectomy
    I am happy that you chose this route. My recurrence was too high so I chose mastectomies and I am not driving because I am unable to raise my arms above my shoulders because the skin is so tight.
    Thanks for the prayers!

    trot not race
    Hi Lisa, Not sure if I got this right but if your surgery was in May you are just in the recovering stages. I had bilateral mas in June 08 and expanders put in at that time. As it turned out I also ended up needing radiation. That ended in Oct 08. It took until April for the expanders out and the implants in. I've got some rippling issues that will need to have the implants done again. I was not prepared for how long this journey is. The tightness, the burning is everything that I also experienced. Gentle expercises, not heavy lifting, is important in getting proper healing. Massaging your breasts can also help with the tightness. Of course your daughter is scared, so are you and aren't we all. Understanding what can be expected will help. As far as your surgeon telling you you won't look like you did before, he's probably right...none of us can or will look exactly the same. It's breast reconstruction, not enhancement. Please don't dispare. This is unfortunately a very long journey but please take it one step at a time. There are many "tour guides" here to offer support.

    dawn
  • lmmo
    lmmo Member Posts: 56
    dawn
    The burning is coming from the lack of skin left after several inches of dead tissue was removed because the flaps did not heal after my mastectomy. Along with this, the plastic surgeon had to remove the expanders and neoform tissue for reconstruction or he was not able to close my flaps w/o skin grafts. This why he says I may never look the same. His only idea/option is to send me in DC to have the abdominal reconstruction.
    I am sorry you have had to endure a longer recovery too:-(
    I just had no idea, and I had talked with many around me that survived this and no one really had this set back or could really tell me everything. I live in an area where BC is one of the highest in the country...lots of young women to chat with.
  • Alexis F
    Alexis F Member Posts: 3,598
    lmmo said:

    dawn
    The burning is coming from the lack of skin left after several inches of dead tissue was removed because the flaps did not heal after my mastectomy. Along with this, the plastic surgeon had to remove the expanders and neoform tissue for reconstruction or he was not able to close my flaps w/o skin grafts. This why he says I may never look the same. His only idea/option is to send me in DC to have the abdominal reconstruction.
    I am sorry you have had to endure a longer recovery too:-(
    I just had no idea, and I had talked with many around me that survived this and no one really had this set back or could really tell me everything. I live in an area where BC is one of the highest in the country...lots of young women to chat with.

    So sorry for everything that
    So sorry for everything that has happened to you. You have been thru so much.

    I am wishing you good luck in your future treatment and surgery!

    Hugs, Lex
  • mlmjt1
    mlmjt1 Member Posts: 537
    Hi Immo
    I had bilateral mastectomy with expanders placed in May 2009 and developed a wound on the r side where the cancer was. The plastic surgeon removed the expander on the right locally in the or which was the most traumatizing experience ever. That was 4 weeks after my surgery. He put the drain back in and i waa off of work for about 7 wks total. The physical therapist will get your range of motion back and will probably do lymphedema massage as well. As for me, I have 6 more chemo treatments then 1 year of herceptin with reconstruction sometime next year. As for your home situation with your husband colon ca and you guys are so young I cant imagine how you cope. We are all here for you and for each other. Hang in there


    Hugs

    Linda t
  • lmmo
    lmmo Member Posts: 56
    similar experience
    I am so sorry, I can not imagine!
    I thought having the drains pulled was horrible awake.
    I went Thursday because where the drains were pulled I can hear sloshing like a hot water bottle...evidently not enough fluid to worry about. So, still one to go, hopefully on Monday.
    I had my first visit with a therapist and it has been a very emotional day.
    I am so appreciative of the replies and am trying to read everything.
    Lisa
  • bfbear
    bfbear Member Posts: 380
    lmmo said:

    similar experience
    I am so sorry, I can not imagine!
    I thought having the drains pulled was horrible awake.
    I went Thursday because where the drains were pulled I can hear sloshing like a hot water bottle...evidently not enough fluid to worry about. So, still one to go, hopefully on Monday.
    I had my first visit with a therapist and it has been a very emotional day.
    I am so appreciative of the replies and am trying to read everything.
    Lisa

    Geez, Lisa...
    I am so sorry for all the complications and challenges you are facing. I had a dbl. mastectomy w/immediate reconstruction on May 6th, and even without complications there is still pain and tightness now (but not nearly as much as a few months ago). Scars or no, the "foobs" will never look normal. As another woman said, and my plastic surgeon reiterated, it's reconstruction, not enhancement. (And I agree with you about the drains...I was NOT expecting the pain that occurred). Looking in the mirror was very hard for quite awhile, but I'm getting used to "them" slowly.

    But, obviously I have nothing to complain about compared to your situation, and believe me, you have all my empathy, along with good wishes, prayers, positive energy, and anything else good that I can send over these internet-lines!

    Hang in there, and try to take each day as it comes. Take lots of deep breaths. And hang with the horse, if it brings you peace.

    With very gentle hugs,
    Debi
  • Alexis F
    Alexis F Member Posts: 3,598
    bfbear said:

    Geez, Lisa...
    I am so sorry for all the complications and challenges you are facing. I had a dbl. mastectomy w/immediate reconstruction on May 6th, and even without complications there is still pain and tightness now (but not nearly as much as a few months ago). Scars or no, the "foobs" will never look normal. As another woman said, and my plastic surgeon reiterated, it's reconstruction, not enhancement. (And I agree with you about the drains...I was NOT expecting the pain that occurred). Looking in the mirror was very hard for quite awhile, but I'm getting used to "them" slowly.

    But, obviously I have nothing to complain about compared to your situation, and believe me, you have all my empathy, along with good wishes, prayers, positive energy, and anything else good that I can send over these internet-lines!

    Hang in there, and try to take each day as it comes. Take lots of deep breaths. And hang with the horse, if it brings you peace.

    With very gentle hugs,
    Debi

    I am so sorry too Lisa for
    I am so sorry too Lisa for all that you have gone thru.

    Praying for you and sending you good positive thoughts!

    Hugs, Lex
  • jk1952
    jk1952 Member Posts: 613
    Alexis F said:

    I am so sorry too Lisa for
    I am so sorry too Lisa for all that you have gone thru.

    Praying for you and sending you good positive thoughts!

    Hugs, Lex

    Lisa, you and your husband

    Lisa, you and your husband have had more to deal with than any couple should, and all at such an early age! I am so sorry that you have had to go through all of this.

    I had a bilateral mastectomy and DIEP reconstruction (tummy tuck) in April. DIEP was one of only a few alternatives that I had, since my right breast had been radiated in 2000, and implants are not recommended for previously-radiated breasts. I would encourage you to consider this reconstruction: I think that it is what your surgeon is suggesting. The tissue that is discarded in a tuumy tuck is used to create the breast, and the blood supply is disconnected in the abdomin and reconnected under the arm. It is vastly different from a TRAM flap, where they tunnel the tissue up through a 'cage' to your breast area. The plastic surgeons here have stopped doing the TRAM in favor of the DIEP.

    The major thing is to have a plastic surgeon who is well-trained and experienced in this surgery, since it is a very delicate, long surgery. There are only about 150 doctors who are considered to be skilled in this procedure in the US. The doctor, and the post-surgery care are definitely the key to the success of the surgery.

    Although I have not had the struggles with the implant reconstruction that you have, the doctor did find that the blood supply under my arm had been damaged by the radiation, but they were able to do the reconstruction in spite of that. I'm hoping that the same will be true for you.

    I hope that everyone's responses have given you encouragement and courage.

    Joyce
  • aurora2009
    aurora2009 Member Posts: 544 Member
    jk1952 said:

    Lisa, you and your husband

    Lisa, you and your husband have had more to deal with than any couple should, and all at such an early age! I am so sorry that you have had to go through all of this.

    I had a bilateral mastectomy and DIEP reconstruction (tummy tuck) in April. DIEP was one of only a few alternatives that I had, since my right breast had been radiated in 2000, and implants are not recommended for previously-radiated breasts. I would encourage you to consider this reconstruction: I think that it is what your surgeon is suggesting. The tissue that is discarded in a tuumy tuck is used to create the breast, and the blood supply is disconnected in the abdomin and reconnected under the arm. It is vastly different from a TRAM flap, where they tunnel the tissue up through a 'cage' to your breast area. The plastic surgeons here have stopped doing the TRAM in favor of the DIEP.

    The major thing is to have a plastic surgeon who is well-trained and experienced in this surgery, since it is a very delicate, long surgery. There are only about 150 doctors who are considered to be skilled in this procedure in the US. The doctor, and the post-surgery care are definitely the key to the success of the surgery.

    Although I have not had the struggles with the implant reconstruction that you have, the doctor did find that the blood supply under my arm had been damaged by the radiation, but they were able to do the reconstruction in spite of that. I'm hoping that the same will be true for you.

    I hope that everyone's responses have given you encouragement and courage.

    Joyce

    Glad you pet scan came out Okay
    I just wanted to send you some more postive thoughts and prayers.........my situation in not as complicated, and I'm sorry to hear that you and your family has been through so much, just know that we're always here for you 24/7.

    You please keep us posted, and I hope you're feeling better soon.

    God Bless You

    Aurora
  • lmmo
    lmmo Member Posts: 56
    Thanks for more good wishes.

    I am most afraid that I do not have enough tissue to re-create breasts since so much was cut away when my flaps died.

    Do they do skin grafts with tummy skin when the use the abdominal tissue?

    Apparently, the doc in DC teaches this kind of reconstruction and there will be 2 surgeons working at one time.

    I know I should not care about this as much as health, but I do not feel like a woman and am reminded every time I take my bandages off. I want to be desirable to my husband when I am well since we are still young ang both teens will be off to college in 2010.