Mastectomy on Reconstructed Breast

Booblet

Hi ladies!

I am hoping to find someone who has gone through something similar to what I am going through but am concerned there may not be a lot of us out there.  I was diagnosed with Invasive Ductal Carcinoma earlier this year, had a mastectomy and reconstruction.  I am presently undergoing chemo.  A rash showed up on my reconstructed breast that they biopsied and it turned out to be Inflamatory Breast Cancer.  Although I had some symptoms before my mastectomy, the doctor did no recongnize it as IBC.   I am also Triple Negative.  My oncologist is now recommending a mastectomy to the reconstructed breast and then more chemo and radiation.  Wondering if there is anyone else out there with a similar situation. 

Linda (Booblet)

Faith316

I was dx with IDC in 4/08.  Had lumpectomy, axillary node dissection (2 out of 8 nodes malignant), 4 rounds AC, 12 Weekly Taxol and Herceptin.  Then after the 12 weeks, continued with Herceptin every 3 wks.  Had 30 radiation treatments.  Near the end of radiation (1/09) starting developing a rash.  Since I was so burnt and blistered, i wasn't suspicious of a rash.  Just assumed it was a side effect from all the radiation.  It wasn't growing very fast like IBC typically does.  Nobody thought it was IBC.  Not my medical onc, not my surgeon, not my radiation onc.  But, when it wouldn't go away, I had a punch biopsy and an excisional biopsy in 6/09 which both were positive for IBC. None of my doctors had ever had a patient who while still in active treatment presented with IBC.  I was in the midst of radiation and still on Herceptin when that rash started.  They think that perhaps the fact that I was on Herceptin caused it to grow slowly unlike IBC usually does which typically spreads really fast.

i have been on Tykerb and Xeloda since July 10th (less than a month) and the rash is already gone and has been gone for a week.  I live in WV, but my local onc. referred me to MD Anderson in Houston, TX in early July.  I go back to Texas in another week for him to check me and to discuss the surgery.  I am stopping in NOLA on the way back home to WV for a consult with Dr. Dellacroce to discuss DIEP.  Not sure yet that is where I will end up having my surgery, but leaning towards it.  BTW -- I am ER-, PR-, HER2/neu positive with both the IDC and also the IBC.

cwrightrn

HI there...I'm not in your situation but asked my plastic surgeon about it.  I have inflammatory breast cancer and had my mastectomy 6 weeks ago.  Radiation and more chemo are next and then I can look to reconstruction in 6 months if I wish.  I asked my plastic surgeon what would happen if the IBC came back in the reconstructed breast and he said that first they would do radiation and then look at mastectomy.  That was the info given me by the plastic surgeon, not the oncologist...hope it helps.  Hang in there

Booblet

Hi Faith,

Sounds like quite a journey for you too and I feel for you.  My IBC faded quite a bit after my first chemo treatment but came back again by the time I had my second.  I'd be really interested in continuiing to hear from you and what you decide with surgery and further treatment. 12 of 12 nodes tested positive for me.  When it comes to DIEP keep in mind that it is a big surgery and challenging recovery.  Make sure you pick someone very experienced and qualified to do it.  I am from little old Manitoba Canada and we are lucky enough to have someone who used to practice at Mayo in our area.

I wish you well.

God Bless,

Linda (Booblet)

Booblet

Thanks for sharing your experience.  Did the surgeon give you any indication of the likelyhood of the IBC coming back after mastectomy/reconstruction?  It feels like such a waste to have gone through the ordeal of reconstruction, only to have it removed so soon.  I am also curious that the surgeon mention more radiation if the IBC came back.  I was under the impression that you can't do radiation a second time on the same area.  Would be interested in continuing to hear about your journey as well. 

Take care,

God bless,

Linda (Booblet)

cwrightrn

HI Faith and LInda.....just wondering if you have checked out the IBC portion of the forum?  There are a great many women with lots of advice/experience.

 As for your question Linda, because my initial diagnosis was IBC, the risk of local recurrence is high.  After radiation we will see if it got everything.  There is one lady on the IBC forum whose skin basically exploded with cancer AFTER the radiation was over!  Everyone's case is so individualized that I don't know that there are any easy answers. Chemo totally wiped out my breast tumor and my skin looked almost totally normal but the path report at the time of surgery showed there was still skin cancer and the hope is that radiation will hit all of it (they are talking about doing chemo with the radiation to really attack those cells).

Thanks for your advice about a good surgeon....and I have a great plastic surgeon who is a microvascular surgeon and is well known.  We already went for a consult, saw before and after pix, etc....  I was a triple D pre mastectomy but only have enough fat for probably a C cup (using DIEP) so we'll see. It is an 11 hour surgery and I'm a nurse and have seen the recovery.... Right now I'm focused on FIGHTING this thing and LIVING.  Statistics for IBC are sobering...survival of 2-5 years. BUT we have HUGE faith and hope that we will whip this and move on with our lives.

Blessings to you both