Reconstruction With IBC

modified radical mastectomy was what every medical professional told me needed to be done for ibc. I had rads after that & then needed to wait 6 mos for diep.

Thats right Akevia, so they dont recommend it, just be sure before you decide..

Love jess

I was told by all my Drs that with IBC, you have to wait at least a year before recon.  IF you are still NED (No Evidence of Disease) then it's fine to look into recon IF you still want to.  My Surgeon is "very good" and he NEVER told me that recon should never be done with IBC - just to wait at least a year and was NED - then go for it IF I wanted to.  My Chemo and Rads Drs said the same thing.  Different Drs have different ideas though.

I had initially been sure I wanted recon at the end of the year wait but when that time came I decided against it for several reasons.  During my adjuvant chemo, I had developed lymphedema and I had burned VERY bad after rads.  In that year, I had also found out that I was very comfortable who I Am and with my prosthesis - so why take a chance on possible issues developing from more surgery (that is not medically necessary) that might have a negative effect on my QOL?  Also when I made my decision to not do recon, when I told Hubby (of 34 yrs at the time) my decision, he really surprized me - he had never wanted me to do recon as he didn't want me having more surgery that was not necessary.  He had always been supportive about me doing it because as he said - it was my decision to make in the long run, not his.  Adult Son basically said the same thing and apparantely the 2 of them had talked but neither tried to influence me in what I should do and would have ' been there' for me no matter what.

Prosthesis can be ordered online or from catalogs but it is really a good idea to see a Certified Fitter(especially the first time) as there are so many different sizes, shapes, shades, weights, etc..  The 'right' pros. is just that - 'right for you'.  We are each slightly different in exactly how we are built.  Larger towns usually have Mastectomy Boutiques in them that will be well stocked with many pros. and mast. bras.  Where I live (in the 'Ole Wild West'), there is only one Certified Fitter in over 300 miles and she is at a local medical supply house that has a private mast. room.  They do not keep a lot of 'stuff' on hand except for the most 'usual' sizes (I'm 'smaller' - I wear between a 32 or 34 that's an A or B - different manufacturers and styles fit differently) so when it's time for me to get new bras (or pros), I call a couple of weeks ahead and she orders in ones that she thinks I'd like (after 4 yrs, she knows my 'likes') and that should be right for how I'm built.  I get the ones I like AND FIT good - rest get sent back.

Talk to your Drs - they are the ones who know you and your DX.  None of us here do, nor are we medical staff..  It's great tomask questions and get all the info you can.  We can each only relay our experiences - which differ from one to another.  There is no "One Size Fits All" when it comes to our individual journeys.

Akevia - You might want to talk with a plastic surgeon before your mast. to find out what would be suggested for you/your options for recon so you have plenty of time to research and think about what you'd be more comfortable with.  YUP - if I wasn't an 'Old Witch' , I'd probably have been scheduled for recon on the exact one year day after mast.

BC does not take from us what makes us the real woman we are!  Yes, our visual body does change but does not change the incredible woman of strength we are inside.

Dr do different TX plans for us but rather or not where we live comes into play I don't know.  I do know that my TX plan was different than almost every other IBCer I've seen.  I did 4 neoadjuvant A/C only before surgery.  I then did 12 adjuvant Taxol.  Most do both neoadjuvant.

akevia - you can look at my signature to see all of the treatment that I have had....  I wore a breast prosthesis for about 8 mos & hated it!  I was happy to have it because I looked "normal", but it bothered me knowing it was there.  I could not wait until I was given the go ahead for diep!  I researched and researched and had it done as soon as the dr allowed it.  I absolutely love my body now!  I am going for my nipple reconstruction next week - but I am thrilled with how I look!  

Donna, I'm also thrilled to know about someone who is happy with their reconstruction ! I will consider this a good inspiration, it gives a sense of hope. Did you need to have anything done to the remaining breast to even things out ? I'll be losing my left breast too. (Is it so often the left breast ?). They are so large and down pointing. Perhaps they will even things out, and  it will be an occasion to have upward pointing pert happy puppies ?

This is encouraging :-) Thanks for the details, Donna.