Guess I'm joining this party....

Hi, arizonaboundgal! Sorry you have to join the party, but glad you reached out and posted. Totally understand the imploding head thing.

There's also a closed FB group for ILC gals which is pretty active, if you're interested.

Sorry you joined us but welcome. Was in your spot not that long ago. Similiar mess of crap in a 7mm tumor. Opted for a double..couldn't bear the thought of the anxiety going every 6mths would bring. Had hard enough time with the yearly mammo/sono plus my boobs always had something going on. I will say initiallly I didn't care if I had reconstruction or not. My surgeon set me up with an appt with a PS. I was in a fog when he spoke. it had only been 3days since diagnosis. I was not a candidate for DIEP..not enough fat and taking from the butt would have left some large scars he said. I didnt want to go through tissue expanders either. I wanted to be back to normal asap. He did offer direct to implants. Though not bigger than my tiny orig boobs,,they are boobs. My recovery was quick, out next day, drains out 5days later and had full range of movement back quick. I was lucky.

Just wanted to let you know that could be an option for you also.

Hey there arizonaboundgal, just wanted to welcome you to our special "party". I had a bilat because 1) ILC tends to be multifocal and hide from scans like mammos so I wanted all that tissue gone for good and 2) I had very dense breasts which also hides problems, and ILC grows in a way that it can hide from scans in non-dense breasts anyway.

I am small breasted so I had my BMX and immediate reconstruction, silicone implants (nipple sparing). Was in the hospital 2 nights, the PS and general surgeon did a great job, I had little to no pain and recovered just fine. They don't feel like breasts anymore, of course, but I wanted to look in the mirror and see "normal" even if I didn't "feel" normal, since I had the whole enchilada: 5 months chemo, bald, skinny, 6 weeks rads, etc. etc. Was tired of seeing someone I didn't recognize. My PS checks my implants regularly and I've had one MRI to make sure the integrity of the implants is good. It was.

You have absolutely the best dx of ILC, and you may be able to escape both rads and chemo and just have your surgery and take an anti-hormonal. Keep us posted!

I'm sorry you joined us, but bc.org has been the best site I ever found for reliable, credible, updated information.

Claire in AZ

Hi Arizonaboundgal,

I do live in AZ. You can PM me and we can chat about anything you'd like. For a long time I was pretty sure I didn't care about reconstruction, and then I found this terrific compassionate, skilled PS--and knew it would be okay. I had gotten an opinion from MD Anderson in Gilbert, AZ first, thinking because they were MD Anderson, they'd be awesome, but the surgeon there had only done about 20 surgeries over all (he was fresh out of residency/internship, I believe) and wouldn't do an immediate recon on my teeny 34A boobs! I think he simply didn't feel comfortable because he lacked experience. I went back to my local PS: no problem. The surgeon who did my lumpectomy did the tissue removal and my PS did the recon as well as the earlier nipple sparing. Both of them had worked together in these kinds of surgeries for years, so I kind of got lucky in that way.

I kept up with my hot yoga practice throughout surgery, chemo, rads and bmx/recon. It made me feel normal, and I had the support of my yoga community throughout. For 1.5 hours each practice I wasn't thinking about cancer, and that was a much needed break for my body and my psyche. I get your need to continue to ride.

Claire in AZ

Hi Arizonaboundgal!

Sorry you are joining us for such a crappy reason!

I made the BMX decision before I found out for sure that I had cancer on both sides. My boobs were also a hot mess of ILC, LCIS, DCIS, atypical stuff, etc. It was such a relief for the waiting to be over and to get them off. I'm 2 months out from surgery now and pretty much able to do anything, although I'm still weak in my arms from a lack of exercise.

I chose reconstruction and I'm happy so far with my TE's. I was totally flat after surgery and it was fine. I didn't feel uncomfortable and I walked around in normal Tshirts. I didn't love the shape of my chest, but it was not a huge deal.

I think I was flat for 2 weeks after surgery and then they did my first 100cc fill. I had these cute boob bumps and I liked them! It felt good to me to get that little bit of shape. Having a little bit of a chest looked nicer to me in the way my shirt hung. Not a big deal, just a personal preference.

And don't feel bad about anything! Just feel whatever you feel and know you are normal and we all felt the same way at some point in time!

Good luck in your journey!

Hi there Azbound, I'm about 25 miles north of Sedona, but I drove to Sedona for all my chemo because the treatment there at their Cancer center was much better than where I live. The plus was after I finished my Taxol infusions I got to hike in Sedona with my dog and hubby, and while I was getting infused I had some pretty gorgeous scenery to look at--they had big floor to ceiling windows in their infusion area.

Claire

Hi AZgal, well, I was stubborn. I had this great life that I thought was keeping me healthy and then the dx happened and I refused to stop my routine because of some stupid cancer. I refused to give it that much power. Frankly hiking and yoga and all that made me feel as though I was--would be--normal, and I felt powerful--it gave me a feeling of control, and that's why I dragged myself to yoga and up those trails. Sometimes it wasn't a picnic but it provided so much emotional and psychological comfort to me, and for some hours each week during hiking and practice I wasn't thinking about being terrified. That was huge.

Sadly the Cancer Center in Sedona (AZ Oncology) closed its doors end of April. I have to drive to Phoenix for follow up care these days.

You should talk to Claire_in_Seattle. She rode in races during chemo, I think.!