ILC Is there more chance of bilateral?

I've researched ILC extensively now and found over and over that ILC has a greater chance of being multifocal (both breasts now or later). My breast cancer oncologist agrees. As Lily55 said, it's your call, but when I had my BMX year before last the pathology reported some hyperplasia in the "good" breast, not caught on scans etc because of course it was too small yet.

I'm glad I did both, for symmetry and other reasons like the above.

Hugs

Claire

i was refused bmx but had a reduction on good side and biopsied all tissue removed, all fine.......

I can totally relate to the feelings about your "good breast" and the BMX vs UMX - I had twinges and what I considered discomfort in my good breast (more so than ever in my cancerous one), which further made me set on the BMX. I knew that for me it would be a nagging concern if I did not do BMX. My BS said "not medically necessary", but confirmed that I had made a good decision for me. None of the medical professionals expected me to have cancer in the other breast. I sometimes wonder if they are too focused on lumping us with Ductal Hormone Positive cancers to consider the incidence of bilateral for Lobular?

I have spent a year without reconstruction and still have not decided about that - you can take lots of time to decide. I am considering the DIEP. (Saw a PS before and after my BMX to discuss options.) I am immune suppressed for the next 1 1/2 years on Palbociclib (trial); so, I will have to wait longer now if I choose reconstruction. If you swim, you should definitely consult a PS to get some sense of how the different reconstruction options would affect that. Both BMX and reconstruction would mess with your shoulder mobility, I believe. You should definitely search for a PT with experience treating breast cancer patients. (If you are able to see the PT before deciding on surgery/reconstruction, you might get valuable insight into the recovery process from the different surgeries.) I am glad that I delayed reconstruction. I felt like there were so many decisions rushing at me at once. I like my prostheses. (have several sets - different ones for exercise etc...) However, they are warm in the heat of summer... Psychologically, I think immediate reconstruction might help one to feel whole sooner? My husband has been very supportive so that has eased the loss. You will get to the right answer for you because you are weighing things carefully and considering others' experiences and your own needs. Just remember you are unique!

I was diagnosed with ILC in the left breast after biopsy. An MRI followed which showed a suspicious area in my right breast. Biopsy of right breast found ILCIS, which did not even appear on the mammogram that found the suspicious area in the left breast. I decided before I even met with my BS the first time, that I wanted a bilateral mastectomy. According to BS, the ILCIS was probably there first, and with that finding alone he would have recommended a bilateral mastectomy. As far whether or not to reconstruct, it is different for everyone. If you are not sure it does not have to be done right away. My surgery was this July and I chose not to reconstruct right away. I may not do it at all, not sure yet.

My insurance company did not object to the bilateral because my BS felt it was medically necessary. Best of luck with your surgery.

hello, I was diagnosed with ILC in my right breast and was adamant about having a BMX. I was concerned given that ILC is reported to have a higher rate of contralateral occurrence and I had greater concerns about symmetry for reconstruction. I also had an MRI before surgery that showed all clear on the left breast. The pathology however after surgery showed multifocal LCIS through the left prophylactic breast. This more than set my mind at ease that I had made the right decision for me. The thought of potentially facing treatment a second time also is a factor to consider.

Making the right decision for ourselves is a personal choice just as treatment following surgery. I had also considered choices made by BRAC + ve women long before I was ever diagnosed and had prospectively resolved to have a BMX if ever I was in that difficult position. Little did I know that I would have to make that choice but it made it easy for me!

I had multifocal ILC in my Left breast and I opted for BMX. Although the u/s, MRI and mammogram showed my good breast (rt) was all clear, the pathology from my BMX showed that my good breast in fact had ILC also. So glad I opted for BMX

I am another one who chose BMX, although only DXed with cancer in one breast (right side). Like several others here, path report showed extensive pre-cancer and LCIS in the "good" breast. None of it had shown on any of the imaging, except for a few tiny calcifications that all the docs swore were benign. I am very glad I did not leave it to fester.

As for recon, I was told to wait 2 years, which I did. I am still waiting, because the waiting period gave me time to research, and I am not really interested in any of the recon options. Flat does suck in certain ways, but having boobs also sucks, just in different ways (mine always hurt, for one thing). So I am usually not too bothered about it. The adjustment was a bit tricky - getting used to the new geography, figuring out what kind of fakes I liked, what kind of clothes to wear with or without the fakes etc. But for me it really was not traumatic at all, just a bit odd at times.

By the way, I swim in a speedo with "Modesty" shields sewn in. It gives a super-tiny bump, just enough that people can't decide what is going on exactly. Besides, if they realize you lost your breasts, so what? One hot summer night, I walked my dog without fakes and in a fairly tight T. Coming around a corner, I almost bumped into an older guy, also in a T, with an arm missing. I couldn't help grinning, then realized that might seem odd, so I made a gesture to indicate I was missing the boobs, smiled and shrugged. He gestured at the missing arm, smiled and shrugged, and then we each trundled on.

I opted for BMX after diagnosis of ILC in one breast. I was advised by my medical and surgical oncologist that ILC tends to show up in the other breast because breasts share genetic material. I am relieved with this decision because I will have no more mammograms in the future. However, the reconstruction road is a little bumpy...taking it one day at a time. I truly appreciate all the women who have shared openly here. I have few others I speak with and although I don't post a lot, I am so very supported by the members of this forum. I thank you.

Tabbies, that is why I am happy that recon exists. For you, it is obviously the right way to go.

I really thought the flat chest would bother me more, but it just doesn't. So I figure, why look a gift horse in the mouth. I do usually wear small fakes, just so my clothes hang right and I don't have to think about my effect on others when I am out and about.

read 2tabbies post. I also did not have the diep or tram option. I went with TE to implants. The results are not total symmetry, the radiated left is tighter, appears slightly smaller then right and the nipple reconstruction is slightly higher on the left side. Maybe the LD flap would have given a smoother, softer and more even appearance. I just did not want to go moving muscles around and cutting new areas of my body up unless that was the only choice. If these implants fail in the future, then I will need to consider that or no implants. Oh, I also had to have the right side revised to match the left a bit more (nice additional 5 inch L scar on side of boob).

Chloesmom, my doc said that the evidence for lobular being more likely to recur in the other breast is ambiguous. He also said that, statistically, a profy on the good breast does not improve survival. However, my path also showed a bunch ofpre-cancer, and my surgeon told me exactly what yours told you.

It does seem like a lot of women share our story, but I don't know what the actual stats are.

I was diagnosed in May with what the testing showed was a small 1.2 cm lump in my right breast.  After my lumpectomy, the doctor informed me that due to the "blue dye" they injected into the right breast that she was sure there was a mass "of significant proportion" in that breast.  Actually it was a 7+ cm mass in the right breast, which was never picked up on the mammogram, MRI or sonogram. The best part was that there were no lymph nodes involved (how lucky can I get).  After several more tests on my left breast, the doctor suggested a double mastectomy, due to the fact that the left breast had pre-cancer cells in there also and I would probably have cancer in the left breast and be back to do this again in three years or less.  NO THANKS, so I had a double mastectomy August 4 with no reconstruction and have never looked back. 

2Tabbies, we completely agree. The main motivation for me to have the BMX was the description I got of what the surveillance on the "good" breast would be. I realized that I would be smashed, prodded, poked and biopsied every 3 months pretty much, and this did NOT sound like a good time to me. I also had little confidence that I or the docs would necessarily catch it, given that my stage 3 cancer neatly evaded detection, stage 0-3. As it turned out, my intuition on that was more correct than I suspected, since there was LCIS etc in the supposedly healthy breast.

Besides, asymmetry really bothers me.