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3 days ago · abdominal swelling/bloating after a double mastectomy in Breast Cancer

I am obsessive about no BP, blood draws etc. from my affected arm. I changed PCP docs once after her assistant ARGUED with me about BP cuffing that arm! (If it was a life-or-death matter and that was the only place they could draw blood or something, that would be different…). I wear a medical alert bracelet on that arm. I have had three surgeries, including total hysterectomy, for pelvic floor prolapse (unrelated to my BC, but it has been its own nightmare) and each time have worn a fluorescent pink “lymphedema alert— no needles, BP, etc” sleeve to surgery and during my hospital stay, with my doctors’ knowledge and consent. So far I’ve had no problems during surgeries.

https://www.tlcdirect.org/Lymphedema-Alert-Sleeve.html

4 days ago · abdominal swelling/bloating after a double mastectomy in Breast Cancer

Wow. Sounds like you are lucky enough to be treated at an enlightened center. I had one instance of cording early on that my therapist helped me work on and get past. I also have been through exercise/weight training/stretching programs which do help.

4 days ago · abdominal swelling/bloating after a double mastectomy in Breast Cancer

Thanks for the alert. I stay vigilant and will do my best to continue so. I am very aware of how my arm looks, how it feels (hard to explain to others who don’t have lymphedema but I call it “my arm bothering me”… kinda nebulous but it’s a real thing.) I stay on top of cuts, scratches, abrasions, cracks. I avoid sunburns. It’s just maddening that it was never medically discussed with me; when I asked, my surgeon said “only” about 30% of his patients develop LE. Thank goodness I was proactive about asking and helping myself. I applaud the actress Kathy Bates for trying to educate more people about it. Good luck with your situation. 👍

4 days ago · abdominal swelling/bloating after a double mastectomy in Breast Cancer

I have mild lymphedema in one arm after a bilateral mastectomy where seventeen lymph nodes were removed. I may have some in my abdominal area as well but I have been focused on my arm. I never was informed about the possibility of lymphedema at all by any medical person, but an acquaintance had it so at least I was aware. I proactively insisted on a referral to a lymphedema therapist (who incidentally was “awful”… I have since found a kind, caring, and helpful therapist. It’s like doctors— sometimes you have to search for one who is a good fit for your personality) because I was going to be flying on a vacation and I knew sometimes flying can be a trigger. My doctor was reluctant to admit lymphedema was a potential problem but finally relented and made the referral. My lymphedema is “mild” because I avoid triggers, practice MLD, have a Flexitouch pump system to use as needed, know what physical exercises to do to help, know how to short-stretch bandage if necessary, and finally wear a compression sleeve during exercise or exertion. (I don’t like regular lymphedema compression sleeves but I do like Solidea brand items, which my therapist recommended.) It’s frustrating that doctors don’t take lymphedema more seriously, but I guess they’re just focused on ridding us of the cancer.

4 days ago · CTS5 and Oncotype DX in Breast Cancer

I cannot answer most of your questions; I will be checking back frequently to see if others do as I am interested in finding these things out myself. I am four years out from having breast cancer. I had neoadjuvant chemotherapy, then a bilateral mastectomy (my choice, I didn’t want to only have the affected breast removed), then radiation therapy. I have been on anastrozole for four years now ( I do have some side effects but they are not debilitating). I just had a checkup and my medical oncologist says we will do this test in six months to see if I should continue with the anastrozole for another five years. She said they test the actual tissue from my tumor which evidently was saved from my surgery.

Dec 1, 2019 · Concerned about the side effects of anastrozole in Breast Cancer

I haven’t had that happen, but it is precisely the kind of problem that I’m on constant vigilance about. I am 3 years post-bilateral mastectomy— congratulations on your 4 years! My cancer surgeon only reluctantly signed a referral to a lymphedema therapist because he said only about 20% of his patients develop lymphedema. 🤨 And I changed primary care physicians because one of the people on her staff literally argued with me when I said “no BP cuff” on my affected arm!
I do work with my lymph therapist on risk reduction… for example, I wear (Solidea low compression) sleeves anytime I do anything that might stress my (also left) arm (and I keep spare sleeves in my purse and car for unexpected “opportunities“), I do MLD massage on myself, I carry antibiotic cream and bandages at all times to put on any little nick or cut. I had 20 lymph nodes removed. I am taking your struggle to heart. Good luck! I’ll keep thinking of you.

Jun 7, 2019 · Concerned about the side effects of anastrozole in Breast Cancer

My doc vetoed tamoxifen because she said the chance for blood clots was too great. (I’ve had a hysterectomy so the possibility of uterine cancer is nil.) I have not asked about another type of AI because these side effects seemed quite tolerable, and also because I don’t have a good rapport with my onc and don’t really desire to interact with her more than absolutely necessary 🙄.

Jun 7, 2019 · Concerned about the side effects of anastrozole in Breast Cancer

I too have been on anastrozole for 2 1/2 years. It is very tolerable, although I have the side effects you describe (minus the cystitis). Besides wrinkles (I aged ten years by the third month I had been taking it) my thin hair is most distressing. I finally had it cut into a pixie style, but it is thin and fine, hardly grows, and just “sticks to my head”. Biotin didn’t help. I am actually considering wearing a wig all the time— and I hate wigs; they remind me of chemo.
I would also be interested to hear if the hair situation rebounds after the anastrozole therapy is discontinued. Also, please post if you think the Rogaine is helping you. Thanks!
(In looking at my profile pic, you’d think I had a lot of hair. But this pic was taken just a couple of months after I had started the anastrozole. It actually was a little thicker, although it never bounced back to pre-chemo status.)