Topic: Immediate reconstuction (DIEP) with IBC dx?

Faith, I had bi-lateral mastectomies - a Total on the left non-cancer breast with only one Sentinal Node removed and a Modified Radical in the right IBC breast with 18 lymph nodes removed (4 were positive).  I did not have reconstruction as recommended by my oncs due to the high risk of local recurrence with IBC.  Prayers & hugs, Bonnie

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 

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

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 

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.

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.

Faith, who is the doctor (onc) you see at MDA?

I'm in Phoenix now (my initial treatments were in Maryland).  I was searching the web last night and found that MDA is going to open in Gilbert Arizona in 2011.  I'm doing good now but need to keep followups.

Faith & Sarah, with ya'll being at MDA do you get PET/CT scans every 3 months?  Are you on Zometa every 6 months?  What is their followup plan?

Thanks for any info.  Prayers & hugs, Bonnie

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. 

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

There are women on the Stage IV forum that are living years beyond their breast cancer mets WITH treatments and that is encouraging and hopeful. 

My IBC sisters, please believe in your care and that we do have a chance at survival with recurrence of breast cancer.  We can fight this.  Hang in there all and try to ignore the negativity.  Prayers & hugs, Bonnie