Inflamatory Breast Cancer: Single or Double Masectomy???

Options
racergirl
racergirl Member Posts: 50
edited March 2014 in Breast Cancer #1
I am new here. I was Diagnosed in July with IBC, started Chemo in Aug, will be finished in Nov. I will then have surgery, then seven weeks of radiation, due to nodes against the chest wall and such. I need to decide if I just have a single or a bilateral Mastectomy. I undertsand the IBC is very aggresive and am leaning toward a bilateral, does anyone out there have any input? Thank you
«1

Comments

  • sea60
    sea60 Member Posts: 2,613
    #2
    Options
    Welcome! Nice to "virtually" meet you
    Racergirl, the way I looked at it...and it was MY decision was to have bilateral. Although we have 2 breasts, I just chose to see mine as 2 but made up of the SAME material. I just didn't want to chance it. At first I didn't want to, but it was highly recommended and the more I thought about it, the more it was the right decision for me.

    I don't regret it. I hope this was helpful to you.

    Blessings,

    Sylvia
  • Rague
    Rague Member Posts: 3,653 Member
    #3
    Options
    I'm IBC
    I was DX'd Aug 8, 2009. None of my Drs suggested bilateral mast. What I was told by them was that as aggressive as IBC is, it is more to spread to other parts of the body (colon, lungs, liver, brain or skin) than the other breast. I had 4 doses of A/C then a mod.rad. mast.last Oct 21st followed by 12 weekly Taxol and then 25 daily rads. I was also told that being IBC that reconstruction should not be thought about for a year (I see Surgeon in 2 weeks so am going to talk with him then and then think about and research before I make a decision - at this time I'm not sure which way I'm leaning.

    Talk to your Drs and go with 'your gut'. What is was 'right' for any of us personally is not necessarily 'right for anyone else. It is also important to remember that what is the 'right' protocol for some types of BC, is not 'right' for IBC - it is indeed a Monster.

    Thoughts and prayers!

    Susan
  • racergirl
    racergirl Member Posts: 50
    #4
    Options
    Rague said:

    I'm IBC
    I was DX'd Aug 8, 2009. None of my Drs suggested bilateral mast. What I was told by them was that as aggressive as IBC is, it is more to spread to other parts of the body (colon, lungs, liver, brain or skin) than the other breast. I had 4 doses of A/C then a mod.rad. mast.last Oct 21st followed by 12 weekly Taxol and then 25 daily rads. I was also told that being IBC that reconstruction should not be thought about for a year (I see Surgeon in 2 weeks so am going to talk with him then and then think about and research before I make a decision - at this time I'm not sure which way I'm leaning.

    Talk to your Drs and go with 'your gut'. What is was 'right' for any of us personally is not necessarily 'right for anyone else. It is also important to remember that what is the 'right' protocol for some types of BC, is not 'right' for IBC - it is indeed a Monster.

    Thoughts and prayers!

    Susan

    All good info...
    Susan, That sounds all so familiar. I have an appt on the 18th to talk to the surgeon. The rad. onc. basically said the same thing about any reconstruction, need to wiat it out and see. Thanks again
  • Rague
    Rague Member Posts: 3,653 Member
    #5
    Options
    racergirl said:

    All good info...
    Susan, That sounds all so familiar. I have an appt on the 18th to talk to the surgeon. The rad. onc. basically said the same thing about any reconstruction, need to wiat it out and see. Thanks again

    My rads Dr was as emphatic
    My rads Dr was as emphatic about waiting for reconstruction as surgeon and chemo Dr were - my PA was even very against it. He didn't want anything interfearing with what rads could do.
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    #6
    Options
    Such a similiar story, I'm
    Such a similiar story, I'm also IBC. Got my DX in early Aug, just finished treatment number 3 of 6 with TAC. Surgery will be next, then radiation, and I'm asking the same questions.

    So far I've asked the oncologist, he doesn't see a need for a bi-lateral. As Rague said, IF it comes back, it's likely to come back in other areas of the body. I see the surgeon this Friday for a consult.

    I also agree that you have to do what's best for you. We'll give you input and support, share our stories, but ultimately no one else can decide for you.

    Finally, you've made it this far. Celebrate that! And know that because you've had the strength to make it through this part, you also have the strength to make it through the next steps. (I've read over and over here that chemo is the hardest part.)

    Hugs to you,

    Linda
  • Babysteps
    Babysteps Member Posts: 15
    #7
    Options
    Bilateral Mast
    Dx in April 10 with IBC Stage 4. For now I have had chemo and a left mast. No cancer was ever found in my rt breast. I recovered quickly from the surgery. Still it is a great trauma to the body. I decided to let my body heal from a known enemy amd hope to grow strong for future battles.I am now facing possible chemo for mets to the lungs.It would have been convenient to have an even chest.Convenience doesn't carry the status it used to. Good luck to you whatever decision.
  • racergirl
    racergirl Member Posts: 50
    #8
    Options
    Gabe N Abby Mom said:

    Such a similiar story, I'm
    Such a similiar story, I'm also IBC. Got my DX in early Aug, just finished treatment number 3 of 6 with TAC. Surgery will be next, then radiation, and I'm asking the same questions.

    So far I've asked the oncologist, he doesn't see a need for a bi-lateral. As Rague said, IF it comes back, it's likely to come back in other areas of the body. I see the surgeon this Friday for a consult.

    I also agree that you have to do what's best for you. We'll give you input and support, share our stories, but ultimately no one else can decide for you.

    Finally, you've made it this far. Celebrate that! And know that because you've had the strength to make it through this part, you also have the strength to make it through the next steps. (I've read over and over here that chemo is the hardest part.)

    Hugs to you,

    Linda

    Wednesday is 6 of 8 for me.
    Wednesday is 6 of 8 for me. I would be interested to hear back on how your consult goes on Friday. You are absolutely right about celebrating, I had a half way done party, just because I could.

    Thinking of you through the rest of this,
    Patti
  • cahjah75
    cahjah75 Member Posts: 2,631
    #9
    Options
    Racergirl
    welcome to the bc network although I'm sorry for the reason. By IBC I don't know whether you mean Inflammatory or Invasive. I was dx May 2010 with Invasive Lobular Carcinoma (6.1 cm) in rt breast and LCIS in left breast. Because I'm the 5th in family with bc I opted for bilateral mastectomy which I had June 22, 2010. I started chemo cocktail Taxotere/Cytoxan in Aug and don't know when I'll be done. I haven't met with rads onco yet so don't know if I'll have rads. Chemo #4 is tomorrow. I wish you the best in making a decision.
    {{hugs}} Char
  • webbwife50
    webbwife50 Member Posts: 394
    #10
    Options
    one or both?
    I was dx'ed with tnbc, for me, bilat. mast. was the right decision. I wasn't comfortable with keeping one. It is a very personal decision, but I have not regretted bilat. mast., I also avoided rads, kinda traded rads for surgery, if you want to look at it that way. Last dec. I had tram-flap reconstuction and am very happy with my little boobs. No nips yet, but I'm hoping to get those done the beginning of the year. And I don't have to wear a bra anymore, Gotta love that...Hugs Alison
  • Rague
    Rague Member Posts: 3,653 Member
    #11
    Options
    cahjah75 said:

    Racergirl
    welcome to the bc network although I'm sorry for the reason. By IBC I don't know whether you mean Inflammatory or Invasive. I was dx May 2010 with Invasive Lobular Carcinoma (6.1 cm) in rt breast and LCIS in left breast. Because I'm the 5th in family with bc I opted for bilateral mastectomy which I had June 22, 2010. I started chemo cocktail Taxotere/Cytoxan in Aug and don't know when I'll be done. I haven't met with rads onco yet so don't know if I'll have rads. Chemo #4 is tomorrow. I wish you the best in making a decision.
    {{hugs}} Char

    Inflammatory
    Per the title of this thread she's dealing with Inflammatory Breast Cancer (IBC) not an 'invasive' form.
  • cahjah75
    cahjah75 Member Posts: 2,631
    #12
    Options
    Rague said:

    Inflammatory
    Per the title of this thread she's dealing with Inflammatory Breast Cancer (IBC) not an 'invasive' form.

    Sorry
    I guess I didn't pay attention. Either way it's not fun!
    Char
  • ladybug22
    ladybug22 Member Posts: 646
    #13
    Options
    I b c
    I was dx with ibc in aug of 07. None of my Drs suggested bilateral mast. I just had mast.on the left side in jan of 08. I am happy the way i am. Personaly i dont want to have any surgery right now. I am clean. Hang in there try to take one day at a time.what ever you decide do it for your self.hugs and love comming your way
  • heidijez
    heidijez Member Posts: 441
    #14
    Options
    inflammatory breast cancer and triple negative here
    like susan (rague) none of my doctors ever considered taking both breasts. they agree that ibc is more likely to appear in another part of my body than in the right breast. only three weeks out from the mastectomy, with a lot of lymph node involvement - surgery was not bad. unfortunately, pathology report was.

    but so far so good.

    good luck to you.
  • heidijez
    heidijez Member Posts: 441
    #15
    Options
    Rague said:

    My rads Dr was as emphatic
    My rads Dr was as emphatic about waiting for reconstruction as surgeon and chemo Dr were - my PA was even very against it. He didn't want anything interfearing with what rads could do.

    ditto what rague said!
    ditto what rague said!
  • fauxma
    fauxma Member Posts: 3,577 Member
    #16
    Options
    heidijez said:

    inflammatory breast cancer and triple negative here
    like susan (rague) none of my doctors ever considered taking both breasts. they agree that ibc is more likely to appear in another part of my body than in the right breast. only three weeks out from the mastectomy, with a lot of lymph node involvement - surgery was not bad. unfortunately, pathology report was.

    but so far so good.

    good luck to you.

    I did not have the same
    I did not have the same diagnosis as you so I cannot speak to your choices, but I want to let you know that you are in the right place for support, care and prayers. I will keep you in my prayers and kind thoughts. There are many ladies here who will give you advice and guidance.
    Stef
  • seof
    seof Member Posts: 819 Member
    #17
    Options
    What I did
    I did double to reduce the chance of coming back on the other side, even though Drs. said I had 10% risk of that. It may come back somewhere else, but not there. I found a book on ACS online bookstore called "A Breast Cancer Journey" and another called "The breast Reconstruction Guidebook". Both are very informative and helped me make my decisions. You might try them out.

    seof
  • SamuraiMom
    SamuraiMom Member Posts: 295
    #18
    Options
    Rolling Out the Pink Carpet for You!
    Hi Racergirl,

    The day of my diagnosis I came to this website and asked that exact question.

    With DCIS in my right side I opted for a double mastectomy and never looked back.

    Doing both did a couple of things for me:

    -put my mind at rest about going through this twice (although nothing is ever guarnateed even with mastectomy but it definitely decreases your chances)
    -my reconstruction results were even and more matched. I opted for expanders then silicone implants, then nipple reconstruction. My chest looks good.

    Good luck with your decision. I know it's a big one.

    You can view my photos from start to where I am now at www.mymastectomyonline.com if you think that might help you in any way.

    xxoo,

    SamuraiMom
  • racergirl
    racergirl Member Posts: 50
    #19
    Options
    ladybug22 said:

    I b c
    I was dx with ibc in aug of 07. None of my Drs suggested bilateral mast. I just had mast.on the left side in jan of 08. I am happy the way i am. Personaly i dont want to have any surgery right now. I am clean. Hang in there try to take one day at a time.what ever you decide do it for your self.hugs and love comming your way

    One Day at a time
    One Day at a time is exactly how I have been handling this whole thing. If I think too far ahead it can get a bit overwhelming.
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    #20
    Options
    racergirl said:

    Wednesday is 6 of 8 for me.
    Wednesday is 6 of 8 for me. I would be interested to hear back on how your consult goes on Friday. You are absolutely right about celebrating, I had a half way done party, just because I could.

    Thinking of you through the rest of this,
    Patti

    I'll let you know. I hope
    I'll let you know. I hope number 6 goes smoothly!

    Linda
  • meena1
    meena1 Member Posts: 1,003
    #21
    Options
    SamuraiMom said:

    Rolling Out the Pink Carpet for You!
    Hi Racergirl,

    The day of my diagnosis I came to this website and asked that exact question.

    With DCIS in my right side I opted for a double mastectomy and never looked back.

    Doing both did a couple of things for me:

    -put my mind at rest about going through this twice (although nothing is ever guarnateed even with mastectomy but it definitely decreases your chances)
    -my reconstruction results were even and more matched. I opted for expanders then silicone implants, then nipple reconstruction. My chest looks good.

    Good luck with your decision. I know it's a big one.

    You can view my photos from start to where I am now at www.mymastectomyonline.com if you think that might help you in any way.

    xxoo,

    SamuraiMom

    I have IBC and i went with a
    I have IBC and i went with a single. That is what my doc recommended, he said that IBC does not go to the next breast. I only wanted to do one due to the whole pain and recovery thing. It would be too hard for both and i do not have much family help

Discussion Boards