DCIS to ILC

KSil

Well I used to come to this wonderful forum eight years ago (age40) when I was diagnosed with DCIS, 3cm, grade 3 with comedo necrosis. clear margins, negative sentinal nodes, and prophylactic bilateral mastectomy in 2005 with immediate tram flap reconstruction. In February of this year i felt a lump-like area on the left breast where I had my DCIS. I read some posts where a lot of times the lump turns out to be scar tissue. I went to my BS who did an ultrasound and biopsy same day. Turned out that I had invasive lobular carcinoma in the reconstructed tram flap. PET/CT was clear, MRI showed possible enlarged lymph nodes in breast area. Had surgery on May 20th, got final pathology back yesterday. Radioactive tracer did not flow to any nodes and BS found three nodes positive for tumor during surgery (extracapsular extension) and did axillary node removal. Final path showed 6cm ILC, 1 sentinel node with extracapsular extension, and 3 axillary nodes with extracapsular extension. Lymph-vascular invasion- present, perineural invasion- present. Stage pT3 pN2a. Which I think comes down to stage 3a. Feeling depressed, yet strangely hopeful. Will be getting chemo, radiation and hormone therapy, as I am strongly ER andPR+ and HER2 negative, and KI 67 5% (favorable). Oh yes, and cancer was grade 2. I also did not test positive for BRCA 1 or 2 genes, but MammaPrint came back as high risk. I'm confused..

Momine

What the heck! That just ain't fair, and I am sorry you have to get back on the stupid choo-choo. Do the docs know how on earth that happened? It sounds like a 1 in a million thing.

Anyway, yes, T3 N2 is 3A. I had more nodes than you, but similar DX, including grade 2 and low Ki-67. I also had extensive treatment, as you can see in my signature. 

KSil

Thanks Momine. I have read a lot of your posts and I'm sorry that any of us have to go through this. I feel like a freak with this diagnosis since I am pretty sure I'm the only one here on these boards that has had a double mastectomy TWICE!! I had complete removal of my tram flap and now have expanders for implants.

Momine

Wow, you are brave. I am too much of a sissy for the expanders, lol. Have those doctor people given you any kind of good explanation of how this happened?

Bren58

KSil, I kind of get what you are going through and am so sorry you have to be back here. I had BMX in 2000 for DCIS and thought everything was ok, until I felt a lump under my arm last fall that 2 docs thought was scar tissue or a cyst. Turned out to be IDC. Apparently I was in the 1-2 % range that could get a recurrence. It certainly is not fun to have to go through all of this again! Hopefully you have a good team of doctors and you can beat this monster once again

KSil

Momine, I guess I just got lucky (sarcasm) lol. I think I'm one for the medical history books for sure. The ILC is a new primary, no ductal found, which is good. My ductal was grade 3 and this lobular is grade 2. I am not so brave, I had a pity party for myself yesterday and I balled my eyes out for about a half hour. I have to be strong for my little ones, two girls ages 9 and 11.

My whole story was 8 years ago I had breast reduction surgery ( PS did not do a mammogram) since I guess I had just turned 40... I did not think twice about that since Breast cancer doesn't run in my family. I was called in to take the drains out after 3-days and while I was in the office the PS said that when they did the pathology on the tissue they found cancer. I was stunned to say the least, didn't know anything about it, stage, grade etc. eventually learned about DCIS and was relieved that it wasn't invasive. A second opinion and new PS later and I had the double mastectomy because of the high grade, comedo necrosis and size. I do believe there was some LCIS in there too, but I don't think this is residual. My BS says the ILC has been in there for about 2 years. ? Plus, it wasn't in the skin, just the reconstructed tram on the side of the original DCIS and in the 4 nodes closest to the tumor, pretty much contained in the breast area. As scary as it is I am planning on living to a very old age. This crap is not going to bring me down, as much as it sucks to be having to go through it. Chemo scares the crap out of me, more so than radiation(I don't know why that is) maybe it's the hair loss...so that is my saga. Anyone who has any feedback, I would be really interested hearing your thoughts.

KSil

Bren, thank you for your response and YES, we are both in the 1-2 % group, but we will both beat this again!

Momine

Ksil, yes, you hit the jackpot  

Chemo scared the living daylights out of me too. I won't try to kid you that it is a great time or anything, but once I got through the first one, and I didn't really feel that bad, I decided to make the most of it. Meaning that I got a cleaning lady, gave up doing pretty much anything I did not feel like doing and focused on making myself feel as well as I possibly could. It worked for me. There were some bumps in the road, here and there, but for the most part I did quite well the whole way through (8 rounds, with BMX in the middle). Do stay hydrated and take some probiotics.

I had very long and thick hair. It was pretty much what everyone knew me by. I was one of those who took the bull by the horns and had it buzzed off when I started chemo. Now I am planning to keep it short and love it. Being bald does get old at some point, and most people can't wait to have hair again once they get done with the stupid chemo, but I bought myself fun hats and tried to have a good time with it.

The rads were more a drag than anything else, because it is every day and it makes you tired. I didn't feel bad really, just a tiny bit more tired every day.

Bren58

KSil, - As Momine said, Chemo is no picnic, but definitley doable. It's the rads that scare the daylights out of me and I chose not to do them. Because, like you, I am a "special" case the RO couldn't really give me a good idea of what the real benefit would be. In my case I felt the risks of doing rads far outweighed the possible benefit. We all have to make the choices that we are most comfortable with and can live with without looking back and second guessing.

KSil

Thank you for being so supportive. It's hard because I am such a private person and I shared this news with my cousin, sister and husband for a couple of months. I didn't want to stress my mom out so I told her on a Friday that I was having surgery on Monday. My mom takes care of my dad (who has dementia) and believe me, she does not need this stress. Anyway, I wanted to spare her the news and tell her at the last moment, hoping I wouldn't have any node involvement. Went from a clinical stage 1 or 2 to stage 3a. I still try to look at it as I'm 1 cm from stage 2 (I guess whatever works for this mind trip). Ugh!

KSil

Hi All,

I had my first chemo treatment yesterday and so far so good; no nausea. Got the neulastsa shot this afternoon,so I will see how it all goes. Thank you again for all you kind words. Hope all is well.

Karen

cascam12

ksil. Private messages u

KSil

Hi Cascam, I sent you a message.