ILC Is there more chance of bilateral?

Tabbies, I know what you mean about the uncertainty, but my main focus is to live as well as possible while I am living. Being free of constant surveillance of a uni-boob contributes to that, for me.

i am 60 and did BMX 9/25/14 with immediate reconstruction. I was told by Surgeon and Ps that a much greater chance of going to other side. I felt the same, only want to do this once! Very happy with my decision.

Wow, I am kind of awestruck by this topic. My BS (who is about to probably not be my BS anymore) certainly never mentioned ANY of this to me. I feel like I am missing a big step here somehow. You have the surgery not having this important information and possibly make the wrong choice, THEN go the MO? Are people going to a MO before surgery? Some BS's are telling you this is more likely to be in both breasts and some are not?

I saw 2 MO's, 2 surgeons, and 2 RO's (one set was second opinion) before surgery. They all said that BMX was "not medically necessary". As Chloesmom experienced, I had mammograms, ultrasounds, and an MRI, all of which did not reveal the cancer in my left breast - just a fibroadenoma there. The MRI indicated that my nodes were clear as well. I chose BMX hoping for symmetry. Due to dense breasts, I could not be certain that any cancer in a remaining breast would be picked up, since my original cancer in the right breast was not seen on mammogram. I read ILC threads on BCO before my surgery and learned about its bilateral tendencies here. My surgeon, who earnestly tried to convince me not to do the BMX, told me after receiving the pathology,"You made a good decision for yourself." I knew before the surgery that I had made the right decision for myself! It is a very personal decision.

Thank you for the information, Momine.

Annette, that was exactly my motivation as well. It just turned out that what we thought was prophylactic wasn't. When my surgeon and I went over the path report, I asked "I would have been back within a year if we hadn't removed it, right?" and he just nodded gravely. It upset him, because he is a perfectionist and very careful about pre-surgery testing etc. You saw the list of tests I had, so it is not that the poor guy didn't try.

Again, I find this interesting; Traveller's quote says the risk is about similar in IDC to ILC. ???

Anyway, don't forget that a dx of dense breasts--and I had VERY dense breasts--can skew scans and hide stuff.

That's what happened to me. So I had the BMX. I wanted symmetry, too, and of course--the pathology showed in my "good" breast post BMX that I had dysplasia/ILC type that could have gone bad and not been detected. I just didn't want the worry of scans, because I simply don't trust them (any of them) 100% any longer.

Claire in AZ

Hi All- I had Stage 1b ILC 7 years ago, and every single doctor I saw said the same thing: I needed a BMX because ILC is more likely to return in the other breast. I didn't question it, because it's tough to spot ILC, I had dense breasts, BC is hereditary in my family, and I felt a BMX would give me a more symmetrical reconstruction anyway. I had a BMX with clear sentinel node and immediate reconstruction (TEs). Like many of you, my surgeon walked into my hospital room the next day and told me, "Never was a better decision made than to remove both. Your healthy breast was completely full of precancerous tissue. I'd have been operating on you again in a year or two." I was very thankful. A few months later, my plastic surgeon replaced my expanders with 410 implants, and after a couple of little tweaks, I've been thrilled with the symmetry and shape ever since.

However, having a BMX didn't prevent my cancer from returning. I know none of you think a BMX is a 100% sure way to prevent recurrence, but I wanted to mention it all the same. Almost 7 years later, my ILC came back in a tiny bit of remaining breast tissue in EXACTLY the same place as the original tumor (between my skin and implant... I guess it goes to show it's impossible to remove all breast tissue) and 11 of 19 axillary and clavicular nodes. ALSO, my MO told me only a week ago that ILC actually IS NOT more likely to return to the other breast than other breast cancers. This is something he said they used to believe but don't now, though convincing their patients of this after so long is challenging. I was completely caught off guard when he said this, because it's what I've always been told.

p.s. One unexpected positive to having a recurrence with a 7yr old BMX and reconstruction is I have a better chance of my foobs coming out of radiation looking ok than a newer reconstruction (I'll take any positives I can find!).

Hi ladies, I am one of those gals who opted for a lumpectomy despite having ILC and my first surgical consultation recommending a BMX. However much I was leaning that way (I think our first reaction is that we want our offending boobs off asap) , my husband was concerned about the surgery and all the possible complications so he asked me to please see another surgeon....get another opinion. The second surgeon who was a breast cancer specialist told me that 1) I did not have dense breasts 2) I had a small breast cancer and as long as my cancer was not multifocal or multcentric via an MRI or I was not BRCA positive, there was no reason to have mastectomy. So we decided to have the extra testing before we made the surgical decision. I have no regrets about my decision and I think that is the most important thing for all of us.

MsP

Texas, all I can say is that it really sucks that you had a recurrence after a mastectomy. Did you have a skin sparing mastectomy? It seems like a lot of us have or had very dense breasts. Mine were. Every time I had a mammogram, they'd always tell me they couldn't see anything because the tissue was so dense. Between that, the difficulty of detecting ILC which resulted in a 5 x 8 cm tumor, and my history of 2 other cancers, I opted for a BMX. None of my docs suggested it before I brought it up, but the hospital tumor board thought it was a reasonable choice. Also, my MO did tell me that ILC is more likely to occur in the opposite breast. He's supposed to be brilliant and really keeps up with the latest developments, but it sounds like there's some difference of opinion in the medical community. I'm not sorry I had the BMX. My only regret is that I didn't seek a second opinion from a different plastic surgeon before my mastectomy. I might have been told about the problems radiation causes if you try to get implants afterward instead of being told I "could have any procedure" I wanted "at any time."

Trvler, I'm glad you found my post helpful. The radiation might not as much of a problem as you're afraid of. I have sensitive skin too. I'm constantly battling one rash or another. I also sunburn easily so I was afraid the radiation would fry me to a crisp. It turns out that sunburning easily doesn't correlate with getting a bad burn from the radiation. Maybe it's the same for sensitive skin. Who knew? It seems counter-intuitive. My RO said that the people who really have trouble with skin breakdown, etc. from radiation are smokers. I didn't even start turning red until halfway through the treatments. The only spot where I had skin breakdown was a blister under my arm right where the skin folds. We got that under control pretty quickly. HOWEVER, the radiation does cause permanent damage to the skin and underlying tissues. Nobody told me this beforehand. (I guess they figure why bother because I really had no choice about whether or not I got the treatment.) The irradiated skin and muscle become thinner and have reduced circulation. The skin also shrinks. I had a flap of skin on each side that the breast surgeon left to help with reconstruction. The one on the irradiated side shrunk down to nothing. The damage to the skin and other tissues is why there are so many complications and such a high rate of failure with implants after radiation, and why those of us in this boat are stuck with getting a flap procedure. This may not be an issue for you if you're having a relatively small lumpectomy and won't need any reconstruction. The other thing is that the radiation darkens the skin. In my case that's resolving, and it no longer looks much darker than the other side. I just wish I'd have had all the information up front when I was making decisions. Hang in there, and good luck! Always remember to breathe! One thing I liked about radiation therapy was the technicians. They were some of the most kind caring people I've ever met. I miss them.