First, let me say that I've been very fortunate to have a great team -- MO, RO, SO. The CNP in my RO's office may be one of my favorite medical personnel in the entire world -- compassionate, extraordinarily competent -- I think the world of her. I'm so glad that I spent a lot of time choosing my team, though looking back I'm amazed I did it while I was in a state of shock. I guess all my professional training pre-retirement kicked in ;-) .Second, sorry in advance for the long and detailed email, but it takes as long as it takes to tell the story.
Okay, so about 2 months ago on 8/10, I see MO for my 6-week check, and he comments during my physical exam that I have edema in my L breast (the one that had the lumpectomy in 2014, and the axillary node residual or recurrence in 2017, radiation both times (16 days first time, 5 weeks 2nd time, but not to the same areas). He did not refer me to anyone. [I do plan to ask him when I see him in November why he didn't refer me to someone when he noticed the edema.] Then 10 days ago, on 10/9, I see my wonderful CNP in Radiology for my annual check, and she also says that I have edema in that breast, and that it's the result of the trauma of surgery and radiation. She refers me to the Lymphedema Clinic at the Breast Center at the Johns Hopkins campus where I had my surgery, which is also closest to my home (only a 45 min drive instead of an hour). I like staying w/ Hopkins team when I can, as it makes communications among my MO, RO, surgeon, so much easier, and my PCP also has easy access to some of their records as well, even though he's no longer on their faculty. When I spoke with one of the PTs by phone (after I set up the initial consult), she seemed puzzled, and said it sounds like it's lymphedema, not edema. She opined that maybe they're just used to thinking of lymphedema in the arms, and edema elsewhere. I finally got an appointment for an evaluation for 10/25. I couldn't find the PT's name listed to look her up, but I will be inquiring about her credentials when I see her ;-) . My BC surgeon is the Director of the Breast Center at that hospital, and one of her primary interests is preventing lymphedema, which was one of the reasons I chose her (in addition to her other stellar credentials, rec from my PCP, etc.). I cannot imagine that she would hire someone less than well qualified, but I intend to do my own due diligence. I spoke with her (the PT) about bringing my DH along to learn the various PT techniques, and she said to bring him to the 2nd visit, as the first one would be for evaluation only.
So I've been reading the various forums (fora? fori?) here like mad, as well as looking at other on-line sites, and just got the Lymphedema book by Burt and White (thank you Amazon for fast delivery). I'd been wearing Amoena Frances bras since this last surgery - they are just sooooo comfortable. I had kept the Amoenas I used in 2014 just in case I wanted sports bras, and wound up using them in 2017-2018. I many have gotten a few new ones as well. They do have some compression, I think about 8%; I'd have to check. They'd gotten stretched out about an inch, so I just ordered 4 more to tide me over until I find out what's going on, and whether or not I have to wear more serious compression garments 24/7, or even less, yada, yada. The PT suggested I try one of my older bras (they were underwire) to see if they gave me more support. I tried one for about 8 hours. It felt really snug (I'd gained about 10-15 pounds), but it had so much more structure than the Amoena), and when I took it off, I realized that my left breast felt like it had been in a vise! The areola was flattened and more orange peel than it had ever been. Two days later it finally looked more normal (but still not quite like the right breast). There endeth that experiment with me old bras. I put them back in a bag on the top of my closet shelf to await their fate. Maybe if my weight came back down 10 -15 pounds?
Anything else I should be doing/not doing?
10/24/2014, IDC, Left, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- (FISH)
12/18/2014 Lumpectomy: Left; Lymph node removal: Sentinel
3/10/2015 Whole-breast: Breast
4/14/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
11/3/2017, IDC, Left, 1cm, Stage IA, 1/1 nodes, ER+/PR+, HER2- (FISH)
12/15/2017 Lymph node removal: Left
2/19/2018 External: Lymph nodes
5/18/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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