Yep, it's been a LONG time. I keep thinking I'll update here, then something else comes up, and I think...I'll wait til I know more...and then I find out something else, and so on, and so on, etc., etc. So...I figured I'll just share what I've been through and know so far and you guys can tag along with me on the "unknowns".
OK, recap, since I can barely follow this mess, I know you all certainly will need a summary!:
9/20/11: had bilateral mastectomies with 1st stage reconstruction
10/11: 2nd opinion path showed cancer bilaterally (we thought right side was prophylactic going into surgery), with close margins bilaterally, positive margin L behind spared areola. Bilateral radiation recommended due to close margins. No signs of invasive cancer - all cancer staged 0 at this time (excellent prognosis)
11/10/11: had repeat mammo's and MRI prior surgery to remove L areola. Mammo on R showed one remaining suspicious calcification. Surgeon feels cannot localize it at this time well enough to biopsy - will wait and reassess in 6 months (3rd opinion facility feels I should have this done ASAP - but need to heal from 2nd recon surgery so likely will do this end of Feb/March)
11/15/11: had surgery to remove L areola due to positive margins. Pathology showed all clear afterwards.
12/23/11: 2nd stage reconstruction surgery...6 hour surgery - uggh! Rough at first, doing much better now.
1/9/12: 3rd opinion on bilateral radiation - most likely no on L, but they are staining more slides. Most likely no on R, but still awaiting final tumor board recommendation (they decided to do a tumor board on my case due to its complexity - so thankful).
1/10/12: 3rd opinion medical oncologist calls me. The tumor board did not like one small spot they saw on my slides on the left. They couldn't be sure, so they ordered more slides from my tissue block in Miami which they stained themselves (I didn't realize...not all of your tissue is looked at...initially they just take a random sample...can you believe that?).
Well, it came back as I actually had a small spot (3 mm) of invasive ductal cancer on the left side. This was stunning, shocking, completely shocking news. The oncologist reassured me that since it is small and my 3 nodes that were taken were clear, that my prognosis is still good. However, I have been moved up (or down, however you look at it) a stage (stage T1a, for those who care - it's still very early breast cancer with a good prognosis). I now will have to take a medicine called Tamoxifen for 5 years to reduce my risk of the cancer taking up residence somewhere else in my body. Scary, scary. She said although it is a very, very small risk, it is possible some cancer cells had escaped and gotten into my blood stream before mastectomy. Soooo, this is why I will take that medicine.
On to more crazy news...they are now obtaining the entire tissue block from Miami to look at. I suspect they are looking for more invasion and also are trying to get more tissue to test for certain factors and assess how aggressive this cancer is. I'm not sure if this is what they are doing, but I think so based upon my reading. I think they are trying to determine if I need chemo or not.
All I know is I now feel in extremely good hands and and SO unbelievably thankful I went for a 3rd opinion. They found something I wasn't looking for...but...my gosh - I want every fighting chance to beat this! I can't believe I've been walking around unprotected for 4 months already. It's pitiful, disgusting...I'm ANGRY. But the biggest thing I feel is thankfulness that I even found out and now can treat it appropriately.
So...we wait...again!