Reconstruction With IBC

Akevia

I wanted to ask all the ladies who have done reconstruction that was diagnosis with inflammatory breast cancer. Is the modified racial mastectomy our only option? Also do we can to wait for reconstruction or can we do it at the same time as the mastectomy?

Thank you!

Donna2012

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.

amarantha

Akevia, I'll be interested in the answers to this question as well. My surgery is scheduled for the 20th of May, after the radiation and chemo will be all finished. I don't know how long a wait it will be or what kind of reconstruction it will be, but I only know, I do hope to do it. So maybe we will do this journey together.

Akevia

Thanks Donna and Amarantha my surgery is schedule for May 27th a week after yours and yes we can do this together. This is the first time I have cried about the whole breast cancer crap. I don't want to lose my breast, we shouldn't have to go through this !!! 

purplemom1982

Modified radical mastectomy was what I was told I had to have done. I had tissue expanders placed at surgery however they are pretty much flat until after radiation. Apparently it isn't common to have immediate reconstruction with IBC.  My surgeon had to talk to the radiation dr. about it and got him to agree to it after he explained that the tissue expanders were going behind the chest wall.

Akevia

Purplemom1982 thank you. I guess this is the only option we have. I don't know what I'm going to do with one boob, so do you just use a fake one for now? 

Faith316

IBC was my second dx.  (You can see my history in my signature below.)  I had hoped to have immediate reconstruction at the time of my mastectomy but all of my doctors said no.  So, I thought I would do it a year or so later.  But...... as time went on, I decided I didn't want to go through yet another surgery.  I am comfortable with my prosthesis.  It looks normal in clothes and it is comfortable.  I put it on when I get dressed and I don't give it another thought all day until I take it off at night.  

Good luck to you.

Akevia

Thanks faith316, and where did you get your  prosthesis from? Did insurance cover it!

Faith316

I wanted to be able to try on and feel various ones so I went to a local shop to get my prosthesis.  I chose an Amoena Light prosthesis.  It really is very comfortable and I don't even notice it at all during the day.  The texture of it is soft and if someone mashed on it and on your natural breast, it honestly doesn't feel too much different.  Insurance did pay on it but after this long, I don't remember how much. 

Akevia

Thanks for the info faith316, I will look into it.

purplemom1982

I am not currently using anything... I had bilateral mastectomy so both sides are flat for now.

Akevia

purplemom if I was having a bilateral mastectomy I would do the same and just wear nothing. I'm going to need something in place of my right breast

jessozzie

Reconstuction is not advised with IBC, any good surgeon will tell you that..i wont go into it, but ask a professional before you do it..

Jess

Akevia

Jessozzie really? I never heard of that, I wish you would explain but I will look into it. Thanks for the info.

Akevia

Jessozzie I read where you should wait a year or not do it at all because of the high chance of recurrence. Thanks for the info !

jessozzie

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

Love jess

Akevia

Thanks Jessozzie!! :-) I will think about it and won't do anything for a while anyway to make sure. After reading info about it, it makes me a little nervous about doing it to soon.

Kicks

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

Thanks for the info Kicks and all they are is just questions no harm in that. Just wanted to know the difference in the opinion of other Drs in other places. I'm still young and not married and I will have reconstruction but will wait a while to do so. Im just sad I have to lose a piece of me one of the things that makes me a women. I found where they do the prosthesis where I live after doing some research. 

Kicks

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

I wasn't talking about treatment, I was talking about reconstruction. I wanted to know what other Drs have said about the options and I see every Doc has said something different. I have talk to the surgeon and we talked about the DEIP flap being that most if the skin is taking with IBC. Pretty much everyone gets the same treatment rather it's before or after chemo it's ACT. I agree with cancer doesn't take the strength of being a real women and I know everyone tries to see the good but I rather have my boob. Anywho, this is the hand I was dealt so I have to play it. :-)

Donna2012

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!  

Akevia

Thank you Donna2012 and letting me know you had both and having the DEIP flap made you feel whole again is encouraging and that's all I'm asking for.

:-)

amarantha

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 ?

Faith316

I posted above that although I had hoped to have immediate DEIP but my doctors wanted me to wait.  And, then over time I decided I didn't want to go through another surgery so decided to not do it.  I actually even went to a consult at NOLA to meet with the drs there to discuss my possible DEIP.  They suggested doing a lift on the non-mastectomy side.  But, I did some research and also asked here on this forum and discovered that many women lose the sensation in their nipples when they have a lift.  So, that was another reason I decided not to have any reconstruction.  I'm comfortable with my prosthesis and I decided that I would rather have sensation in one breast than have reconstruction and a lift and lose all sensation.  Not all women do lose it, but from what I learned many and I think probably most do.  Just some more info for you to consider.

Akevia

Faith316 thanks and that is something to consider. 

Donna2012

amarantha -  I had a lift and very small reduction on the "good" breast.  It looks great.

Amebiasis -  I have sensation in my lifted breast.  

I am very happy with my reconstruction decision & never thought I'd look as good as I do.  My boobs are perky and lifted & my stomach is super flat.

amarantha

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

bride

I really don't have any answers, just to acknowledge that age, relational status, and your docs thoughts all change as we age. I'm older and have a partner of decades who thinks reconstruction is unneeded -- millions of people have relationships with those who have no breasts. 

And my RAD doc doesn't  want a skin expander in her way during radiation. So it finally came as an easy decision for me:  I'm having bi-later surgery. But I don't know if I would make the same choices if I was as young as you. 

Just know that whatever you decide, I've found nothing but good advice and tons of support here. And there are basically no right or wrong choices; each of us knows what we need for our best QOL. Trust your own feelings but and don't rush your decisions -- in short, keep doing exactly what you're doing!

Best,

bride

Akevia

Thank you bride for the very positive comment !! :-)

bride

Akevia,

I just realized that you and I were DXed within a few days of each other. That increased my surprise at how well you're handling all of this. So thanks for the thank you, from you it means much, especially as I lack the perspective Jess and Kicks have. 

bride