reoccurence of IBC 2 yrs. after mastecomy

lynneoj

In 2009 I had IBC and had chemo and a mastecomy.   Now it's reoccrred in the scar area where the breast was.  My oncologist said surgery is the only positive answer.  Has anyone been treated for IBC reoccurence!!

 Today I saw my regular surgeon, a thoracic surgeon (chest doc) and the plastic surgeon (who will re-sect the chest area).  It requires a big, huge, major operation 3-6 hours.   In addition to taking out the cancer they'll also take out some pectoral major & minor muscles.  Then do some rearranging of muscles to replace what they removed.  My right arm muscles and chest muscles will be weaker.  And skin has to be grafted probably from my stomach - more scars and recovery.  Hospitalization is 7-10 days.  And recovery is several months.  The Kaiser tumor board will meet and discuss treatment on Thurs.   I'm waiting to hear if they'll get all the cancer before hopping on the cutting board. 

Sure want to hear from anyone.  thanks much. 

Lynne 

ibcmets

Lynne,

I'm sorry to hear that it's reoccured even after mastectomy.  There is a site called www.ibcsupport.org where you may be able to get more info on reoccurences.  I'm doing my BMX for ibc this Thurs.  Best Wishes with your options.

Terri

lewima

Please tell me what your symptoms are.  I am 48 and am 3 1/2 years since initial dx.  Originally I had itching and pain in my left breast.  Was told by MD that it was probably fibrocystic disease.  Cancer did not itch or hurt.  3 mo. later I had an inverted red area.  Saw a NP and I knew it was cancer.  I did not take antibiotics that she tried to encourage me to take, instead insisted on a diagnostic mammo and diagnostic ultrasound.  This was done a day and a half later.   It was positive. Within 3 weeks, what had been 2 mm of affected area became over 7 cm. of affected area.  I started chemo, dose dense ac-th, herceptin x 1 yr., bil. mastectomies, aromasin and radiation.  I had 3 lymph nodes positive even after all the chemo.  I have periodically had mild itching in the same area as the IBC. Now the itching won't stop.  It is driving me crazy today.  It is Friday, and I am worried.  I can't find any information about symptoms of 'local' recurrence of IBC.  I am really sorry for everything that you have to go through - Again.  Local recurrence though does have a percentage of 'cures'.  I pray you are one of them.  God Bless. 

Leslie

SaraN

Before you submit to another surgery it might be best to visit a comprehensive cancer center with a great deal of experience with IBC, such as MDAnderson or Fox Chase to make sure that is the correct procedure. You don't mention having had radiation with your prior chemo and mastectomy. That is a huge part of treating IBC. Not having had it doesn't make it sound like you were treated by the state of the art protocol for IBC.

 MDAnderson (Houston) Fox Chase (Philadelphia) have 2 of the best clinics for IBC in this country and have the most experience dealing with this rare disease.

It might be well worth your life to get an opinion from them regarding your current best options for treatment.

Best wishes,

Sara

diagnosed 7/9, IBC stage IIIB, finished treatment 3/10 and doing well so far

mrsnjband

Hi Lynne,

I am curious as to you reoccurance symptoms? I am still having problems in my scar area of th IBC side.

I tried to go to MD Anderson IBC clinic but they wouldn't take me at the time.  My skin issues don't look like skin mets but I've had rash issues & LE problems since last summer. I did have a biopsy but came back negative this time. 

I don't think it's IBC mets, but it does worry me.

Thanks for any advice. NJ