% of reoccurance and possible preventative masectomy

Nel,

I had a BMX at the time of surgery.  My BS was willing to do the other side if I wanted it done.  I stated that with the high rate of recurrence  of IBC to the other side I wanted to prevent having to do chemo & rads again. She agreed with my reasons.  I truely thinks it's out choice as to whether we get  Uni or Bi- mastectomies.  

Are you have chemo before you surgery? That is usually the correct order for treatment of IBC, chemo, surgery, rads.  If you are not confident in you doctor don't be afraid to look for a new one.  The one thing I have learned the last 4 years is to trust your gut.

MD Anderson is a good place & I know there are others.  I know treat IBC can be a fast tract but you want to be sure to get the proper treatment.

Sending you love & support. NJ 

Nel,

I chose to have a BMX since I had IDC on the left and a benign calcification cluster on the right. My theory was I only wanted to suck up & do this once if at all possible and my doctors supported me wholeheartedly. At my initial onc visit, he asked why I did bilateral mx and I told him because I felt in my heart that if I didn't, that calcification cluster would have me doing this again in 5-10 years. He simply smiled and said "And you would have."  Hence, go with whatever feels right to you. Your doctors should support you regardless. 

I agree with Phila, you don't want to do it twice.

My questioning is; why do they think it is a lesser form of bc then ibc? Was it a bad bx? I was dx with a skin punch done in the office. IBC is in the lymphatics of the skin and they should be able to know pre op what kind it is. How does your skin look? Do you have a dimply rash?

Chemo is supposed to be first, that is very important in IBC as it can be spread by having the surgery because it is in the skin and chemo will help kill and micro mets in the lymph system.

I hope I am not asking too many questions, but just don't understand their reasoning.

Forgive me, but I'm going to write a few things that directly contradict what your Team has said.  My oncologist is an editor of the best Oncology textbook out there. I guess, if you're not up for entertaining other opinons right now (which I really do fully understand), I wouldn't read on.

When we started talking surgery, I said I wanted a BMX.  Not once did one single practitioner say one thing to discourage me.

Infection?  A second surgery under general anesthesia is by FAR a greater risk.  My BMX delayed nothing, my schedule of starting rads was identical. 

To me, this is the important part: we IBCers are actually living, now, much more than ever before in history.  They do NOT understand what will happen to significant numbers of IBCers as we age, because we've never aged before - we just died.  My primary reason was - IBC is a killer, and fast.  Here is my chance to remove as much breast tissue as humanly possible from my body.  ***NO ONE REALLY KNOWS*** what will happen as larger and larger numbers of us start actually hitting 5, 10, 25 yr marks.  Not I, not my doctor, not your doctor, not even Dr. C.

And there is the cosmetic issue, as well.  Unless you are extremely small-breasted, you are going to have to wear a prosthetic with clothes or draw attention to yourself.  Many, many women are flat-chested naturally.  As an IBCer, you are usually not given the option of reconstruction for a year after being cancer-free because a) radiation works better on a flat chest and b) our risk of recurrance is so high.  Now, many of us do have local recurrances, have that treated, and go on to live.  But, that puts off reconstruction for that much longer.  You will have the breast "situation" that you have after mastectomy, possibly for several years.  

I cannot wear my prosthesis.  I have lymphedema on my cancer side,  and it hurts too much.  I grit my teeth and do it sometimes, but it really does hurt.  Also, consider that possibility.  You had cancer in your lymph nodes, or you wouldn't have IBC....so your risk of lymphedema will be significant.

Anyway, those were my reasons for BMX.  I am very, very glad that I did it and I am approaching a year of being entirely cancer free, despite our bad-ass diagnosis.  People absolutely DO get recurrances of IBC in the other breast, because I've talked with them.  There *are* special considerations for IBCers, but obviously the medical community disagrees with what those are.

Best of luck in your treatment, regardless of what you decide!!  

Hugs,

Pam 

You're absolutely right, Jenny.  The risk of infection IS essentially equivalent, as removing your "good" breast is not a long procedure.  To my mind, it is an unacceptable reason to say "no bmx".  There may be very many good reasons not to have a BMX, but infection is just not one of them - it's not a matter of surgery or not, you're having the surgery anyway.  Any microbes that are going to be on the surgeon's hands or instruments or in the air will as easily cause infection on one side, than both sides. 

It is concerning that your doctors aren't properly responding to your feelings and opinions, Nel.   What will they say if you have a recurrance in your other breast....oops? 

And...we IBCers can't afford an additional 8-10% chance.  We just can't.  And the "lesser cancer" thing?  Women die every day of those "lesser" breast cancers.

I'm really very sorry for beating what is probably a dead horse, and the last thing I want to do is upset you.  But you should have what you want - in this case, there is simply no clinically sound reason not to.  

I  had a lumpectomy on my left breast with bad margins on 8/2 and a BMX on 9/8. My BS was clear that there was no medical indication for a BMX but it needed to be a personal decision. It was hard to know what to do but a friend, who has been through this breast cancer journey, suggested I get all my mammogram records as that had helped  her in making her decision. I did that and realized that over the past 20 years, I've  had a number of problems on both breasts (bleeding, cysts, etc.), each time the problems were found to be benign and I never thought about it again. What helped me the most was a fact sheet from the National Cancer Institute (NCI). Here's the link: http://www.cancer.gov/cancertopics/factsheet/Therapy/preventive-mastectomy. NCI listed six reasons a woman might consider a BMX. I had three of the six! I circled them as my husband and I went over the fact sheet together. It was an easy decision after seeing those circles so clearly on the NCI list. We also saw an ACS Cancer Navigator that helped us talk through the options and helped us know we had left no stone unturned in making our decision. My pathology report showed "flat atypia" in the other breast and both the BS and MO told me that "I'd made a good decision". I already knew I'd made a good decision irregardless of what the pathology report showed! What I know is that the decision on what kind of surgery to have was a really hard one and I had to take a  little time and really consider the options so that I wouldn't second guess myself down the road.