Immediate reconstuction (DIEP) with IBC dx?

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Faith316
Faith316 Member Posts: 2,431
Immediate reconstuction (DIEP) with IBC dx?

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  • Faith316
    Faith316 Member Posts: 2,431
    edited October 2009

    I posted this on the surgery forum, but thought I'd try here to see if I can get more response.

    I was originally dx with IDC in April 2008.  Had lumpectomy, axillary node dissection, chemo, radiation.  During the chemo and radiation, I had this rash that wouldn't go away.  I was then dx with IBC in June of 2009 and am now on different chemo.  The plan is to continue the chemo for a few more rounds and then have mastectomy.

     My question is, did any of you IBC girls have immediate reconstruction after mastectomy?  If not, why not.  Just trying to research my options.  Thanks in advance for any replies.

  • Caseysmom
    Caseysmom Member Posts: 507
    edited October 2009

    Faith316:

    After my A/C and Taxol chemo treatment I had my mastectomy along with a Tram Flap.  I have had no problems.  I am 4 years out of treatment.

    Good Luck

    Hugs

    Laura 

  • germangal
    germangal Member Posts: 97
    edited October 2009

    Faith, like Bonnie, I had bilateral mastectomies. I had a Total on the right non-cancer breast and a Modified Radical in the left IBC breast with 11 lymph nodes removed (4 were positive).  That was followed by 35 rounds of radiation to the upper left quadrant of my chest & shoulder area. When talking with docs re reconstruction, they encouraged me to wait until after radiation because of the potential skin damage ... I got 2nd degree burns from radiation which left some scars. Reconstruction would now take care of those, but I still don't want it because of my personal concern with the high risk of local recurrence in skin or chest walls.  My oncologist is totally in agreement with my decision, although she can't recommend one way or the other. Besides - it's fun having different size prosthetics for different activities! One of my IBC buds had Tram-Flap at time of mastectomy, her radiation didn't bother it (but she's olive-skinned).   Karen

  • TammyLou
    TammyLou Member Posts: 740
    edited October 2009

    http://www.breastcancer.org/treatment/surgery/reconstruction/ask_expert/2007_05/question_12.jsp

    (I followed you over here, Faith!  :))

    I think the question is very interesting.  I read the history you presented (over here) and now understand that you cannot radiate your cancered side because you had a new cancer in the same side.

    It's not exactly the same thing, but I (personally) had an aggressive (regionally) advanced cancer at diagnosis (Stage 3C); and, I was successfully reconstructed after intense radiation treatments.  However, I was at no time offered immediate reconstruction.  At no time was reconstruction discussed at all until I completed cancer treatments.

    My best understanding = IF your oncologist is agreeable, there's no reason that I know of why you could not be immediately reconstructed.

    A concern/question would be about the (previously) radiated skin (and underlying blood supply...rads affects that, too.)  I don't know if skin-sparing would (necessarily) be the way to go because of skin recurrance issues.  (above my pay grade!)

    At this particular point in my "cancer career," I have annual scans (CAT, Bone)...my onc is more concerned about bc in my organs.  I also have a high risk of recurrance (chest wall, also...fixed, matted cancered lymph nodes stuck to it at diagnosis.)

    The PROBLEM / issue is probably going to be that there is no way to know how effective the chemo is until the surgery.  Very often, scanning is not as accurate as it should be in showing the extent for IBC in general.

    If you need more chemo after mastectomy, the doctor is probably not going to want you to reconstruct.  Reconstruction = possible donor site healing issues and my guess is that the onc is likely to vote for less holes if there's more chemo in the works. 

    What does the doctor (onc) say?

    tl 

  • Faith316
    Faith316 Member Posts: 2,431
    edited October 2009

    I will not have skin-sparing mastectomy on my IBC side.  As far as not knowing if the chemo has been effective ------------- that is one reason my oncologist did not want me to have immediate mastectomy.  By leaving the breast and the "indicator" which was the rash, we could tell if the chemo was working by whether or not the rash was going away.  My response to my new chemo drugs was incredible!  It was almost immediate.  After one day on the two new chemo drugs (Tykerb and Xeloda) I could see some slight improvement in the very nasty rash.  After three weeks on the new drugs, the rash was totally gone, so we were visually able to see  how effective the chemo was.  In addition, my mammograms since then have showed decreased skin thickening and the orange-peel skin and swelling have gone away.  So, even before surgery, we know that the chemo has been extremely effective.

    As far as what do my doctors say?  I get diffent opinions from each of them.

    Thanks for the link.  I'll have to explore on that page.  I appreciate your reply.

  • TammyLou
    TammyLou Member Posts: 740
    edited October 2009

    I am very happy to hear that you're doing so well.  GO TEAM!  :)

    Generally speaking, your oncologist is the tie breaker.  Very likely, the other doctors will be reluctant to go against him/her.

    On the other hand, my oncologist was not enthused about certain aspects of my cancer treatment, but he was willing to be "persuaded."

    The exclusive fact that the cancer is Stage 3 is no longer a war stopper for reconstruction.  In fact, reconstruction is being offered by some to Stage 4 ladies with stable disease. 

    Please let us know how you're doing.

    tl

  • TammyLou
    TammyLou Member Posts: 740
    edited October 2009

    (I'm still diggin')

    The kicker may be "the biopsy of the removed tissue establishes clear margins"...at some facilities, it may take up to a week to completely examine the tissue.  My best understanding is that if the margins are not clear, the solution is re-excision (or rads...no rads for you.)

    There is no doubt in my mind that re-excision would complicate / possibly compromise the reconstruction.  I am not a microsurgeon..I got my non-existent medical degree at Screw U.

    Having personally had 2 flap surgeries (my first attempt failed), I assure you, m'am...it's not something you would want to do twice.

    The balance to the kicker may hinge on what facility you are treated at.  (University type hospitals tend to have faster labs.  I seem to wait much less time than many of my cancer friends.)

    tl 

  • TammyLou
    TammyLou Member Posts: 740
    edited October 2009

    Miss Faith, 

    I have mulled over your question extensively.

    Have you considered a second opinion?

    There is a specialty center at MD Anderson that is focused on the treatment of IBC.

    What may be in question (at least it is in my mind) is whether mastectomy is the best treatment for you. Generally, it is a good idea for IBC patients because that flat chest wall is easier to radiate. 

    There's pretty good evidence that high dose rads are beneficial to patients with locally advanced disease and that flat chest wall is (traditionally) considered to be desirable.

    Since you've already been extensively radiated, what is the rationale for the mastectomy?

    (Enquiring minds want to know.)

    Skin removal could be desirable?

    tl 

  • lbrewer
    lbrewer Member Posts: 766
    edited October 2009

    Faith,

    I also had immediate reconstruction.  I think its fairly common now.  I had mine at MD Anderson in Orlando.  Go to diepsisters.com and there is some good info plus a list of diep docs.  Make sure your surgeon is experienced in the procdedure as it is a complicated microsurgery.  PS who specialize in breast augmentation are NOT the same!

  • Faith316
    Faith316 Member Posts: 2,431
    edited October 2009

    Tammy,

    Thanks for all your replies!  I actually am being treated at MD Anderson.  I was referred there by my local oncologist because of the uniqueness of my case.  Typical treatment for IBC is chemo followed by mastectomy.  Even though it appears that my cancer is in remission (finally, after 18 months of surgeries, multiple types of chemo and radiation!), the fact that I have now had cancer twice in the same breast means that it has to go.  Maybe it really is gone for good this time, but it is too big a risk to take to not remove the breast.  And, yes, since IBC is a type of cancer where the dermal lymphatics are involved, it is necessary to remove the skin.  That is why a skin-sparing mastectomy is not an option.

    lbrewer -- I have consulted with a PS who is an expert in DIEP at NOLA.  I also am insisting on a surgical oncologist for the mastectomy part of the surgery instead of just a general breast surgeon. Although of course I want a good cosmetic result, the cancer treatment of this takes top billing!

    I also had a consult with a surgeon at MDA, but did not care for him or his attitude.  I really like my oncologist at MDA, but it is a HUGE place and doesn't feel right to me for the surgery.  I will still go there for my oncology followup appointments, scans, etc., but it is unlikely that I will end up having my surgery there.  Thanks for your reply as well.

  • TammyLou
    TammyLou Member Posts: 740
    edited October 2009

    Well, HALLALUJAH!  (I am so happy to hear that you are being treated at one of the top facilities in the country, Miss Faith.  :))  I know that worrying about the ladies on the breast cancer pages is not what I should be doin'...but, sometimes, I just can't help myself.  :)  Glad to know that you are in good hands.

    Whereas aggressive locally advanced disease is a bugger to treat, I think it is possible to clean it up...at least, that's what I got my own money riddin' on.

    It does "make sense" to me that you are having the mastectomy as a "preventive" measure...not that you need my approval...just sayin'...plus the dermal lymphatics thing stacked on top of it tends to make it a done deal.

    That is actually what I chose for myself.  (In the odd event that I should actually survive this crap...I don't want a new one, and that is absolutely positively for certain.)

    Please keep us posted.

    :)

     tl 

  • TammyLou
    TammyLou Member Posts: 740
    edited October 2009

    P.S.  I am also familiar with Treatment Facility as "Mall"  :)  It does have its plusses and minuses.  UAB patient - Birmingham Alabama = closer for me than MD.

  • sadiesue
    sadiesue Member Posts: 6
    edited March 2010

    Hi Faith-  I had my initial dx and staging done at MD Anderson. Have IBC.  I had a modified radical mastectomy.  The MD Anderson docs all advised to wait one year before doing any reconstruction due to the high rate of recurrence. I had most of my treatment locally, including surgery.  My local docs all said just wait until your skin has healed from radiation, at least six months.  Hard to know what to do.  

  • Faith316
    Faith316 Member Posts: 2,431
    edited October 2009

    Bonnie,

    I see Dr. Valero at MDA.  I like him very much.  So far, I get PET/CT everytime I go.  I had one in July, August and I will have another one next Monday, Nov. 2.  I do not take Zometa.  I am on Xeloda and Tykerb.  

  • sadiesue
    sadiesue Member Posts: 6
    edited October 2009

    Hi Bonnie-  If I win the lottery I will be at MDA every 3 months.  I'm trying to determine how frequently I can make it down there. My local oncologist doesn't do any scans unless symptoms.  He seems pretty hard core with that.  He's told me why and it sounds so logical and reasonable while I'm in his office.  And then I get home and  I cannot wrap my head around that concept.  Dr. Cristofanilli would do PET/CT scan at least every six months and some sort of a brain scan within a year.  A radiologist would argue that the sooner we find a brain met, the better chance we have of zapping it and you getting on with your life.  I guess I'll see if it is harder to go without scans or actually harder to have the scans and be freaking out waiting for results.  Neither option sounds like a fun time to me.  I am not on Zometa.  (I'm thinking I should be. I've had a bruise like feeling on my spine since the same time of my dx but according to PET/CT and bone scan, not cancerous.  xray showed beginnings of osteoarthritis.  This is so weird, I'm 39 and perfectly healthy other than this cancer.)  I think I need a new local oncologist.  I have spent time researching different things lately and don't feel like I can really talk to my oncologist in any meaningful way about what I've learned and what I think I might want, but need the guidance of an oncologist to help me sort it out. It would save me a lot of money to get a better fit with a local oncologist than to keep flying down to Texas, but if I ever get a recurrence, I really don't want anyone else to draw up my treatment plan other than one of the major cancer centers, period. 

  • TammyLou
    TammyLou Member Posts: 740
    edited November 2009

    IBCSunny...I do not have IBC.  I did have a regionally advanced aggressive IDC...3C and it eats lymph nodes for breakfast...fixed matted exceeding 8cm lymph node involvement invading my chest wall...so, our treatment is similar.

    Whereas, statistically scanning does not improve survival time, it may prevent finding out you have breast cancer in a more traumatic (and perhaps, life-threatening way.)  It is traumatic to find out you have bc, but I think it could be worse if you are in the hospital and you can't breath...or you break your femur, etc.

     So, what I'm saying is that even though it does not prolong our survival to find it early / scan, it may be a more humane route.

    There are other patients who really, REALLY don't want to know...they refuse scanning.

    There are merits to this strategy also.  In advanced stage, the treatment objective is to reduce symptoms.  If you don't have any symptoms, what are we treating?

    However, it may be possible to allow patient's time to explore their options, perhaps find clinical trials or time surgical interventions.  This could be accomplished by scanning (early detection)...rather than allow a potential health crisis to be the method of discovery.

    I consider myself to be a well-educated layperson patient.  Increased survival time is not a reasonable goal for scanning.  My quality of life is.  I personally want the "little cushion"...the time that early detection would give me to come to terms with my situation and deal with my family and my life (my job) before being forced by my symptoms to begin cancer treatment again.

    I think you should talk to your doctor.  If he will not offer you annual scans, find someone who will. 

    tl

  • TammyLou
    TammyLou Member Posts: 740
    edited November 2009

    Correction:  Early detection does not improve survival time for mets; it may, however, improve survival in the event of a new primary.

    http://cme.medscape.com/viewarticle/590039;meddomainjsession=m7B6KwhQ1L9yCT1NRT5BVXrjL8KR3hj3L4hGFZRCJP4xxQJmRLyX!2000943616

    "Detection of second breast cancers in the asymptomatic phase leads to detection of early-stage cancer and improves relative survival by between 27% and 47%," the study authors write.

  • atheist
    atheist Member Posts: 11
    edited November 2009

    hi Gg08 and all.  Docs won't talk recon with me till one year after mastectomy, so March 2010 for me, due to possible recurrence, tho I had zero nodes positive out of 12.  Age 51.

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