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Fri, Jun 7 10:18pm · 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 🙄.

Fri, Jun 7 5:05pm · 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.)

Sep 9, 2018 · Concerned about the side effects of anastrozole in Breast Cancer

I was stage III also. I did neoadjuvant chemo, then surgery, then rads, and finally, now, anastrozole. Originally I was told I’d be on anastrozole for 5 years (it’s been about 2 years so far), but research now makes it look like it’ll be for at least 10 years. It’s all good and I’m really enjoying my health now!

Sep 8, 2018 · Concerned about the side effects of anastrozole in Breast Cancer

Next month I will have been on anastrozole for two years. Side effects have been minimal… I’ve not experienced pain or joint pain like many women report. The first few months however I had very frequent hot flashes (much more intense than those I’d had through my natural menopause) which were often preceded by a sensation of “prickles” over my entire body. The prickly feeling is very rare now. I do still have hot flashes but they are not as frequent nor as intense— I guess my body’s adjusting. I take them as a sign that the anastrozole is still working! I also play havoc with our thermostat as I change the settings for my comfort, although I try to be somewhat thoughtful about the others who live in this house, too, LOL!

Jul 20, 2018 · Mastectomy and Reconstruction (or not) in Breast Cancer

I re-read your post and wanted to relate what kinds of sensations I was left with after my double mastectomy. (The mastectomy itself wasn’t hard, and not even particularly painful. After I was home I didn’t even need to take Tylenol. I did end up with one drain for six weeks, which was frustrating. The surgeon removed it only because six weeks was the cutoff for him and he said I would likely form a seroma— which I didn’t… I think the drain could have been removed a month earlier with no issues.) I have feelings over my entire chest area, including around my scars. There have been a few times I’ve had an itching on one or both sides, which I just gently rub because I never scratch that area anymore— I don’t want to damage the skin. Especially my irradiated side. I do have an area on my torso just under my armpit without much sensation on my right side, and on my left side (this is the side that had cancer, and I also had an axillary dissection with 20 lymph nodes removed), my arm pit, a little bit under my armpit, and the back side of my upper left arm have no feeling at all. I have to actually watch when I apply deodorant on that side to see if It’s getting where I want to put it LOL.

Jul 20, 2018 · Mastectomy and Reconstruction (or not) in Breast Cancer

I don’t have the same issues you are dealing with, but I have learned a lot about lymphedema since I developed it in my left arm due to my mastectomy/axillary dissection. You may have it in your torso/stomach region (very common after those surgeries) causing your swellings. It causes other problems too but swelling is what people see. Google “Lymphedema Education & Research Network” and “National Lymphedema Network” to find out more. It is manageable. I use active massage sleeves from SolideaUSA because they are more comfortable than traditional compression garments. They have items that would work for your torso/abdomen too. I can somewhat relate to your other issue because unrelated to cancer, but to fix pelvic floor prolapse, I had a hysterectomy (plus tubes and ovaries removed) last summer. The doctor who came in to do the reconstruction put in a mesh mid-urethral sling for stress incontinence prevention. He put it in too tight and I could not urinate at all. I had to learn to self-cath. A month later he went back in for a “revision” ( he cut the sling to loosen it). The reconstruction failed, and the “revision” only helped some. I could only urinate standing up while simultaneously leaning over! Six months later I had the reconstruction redone with a different doc at a nearby large teaching hospital. I still have issues with urinating. Things just don’t work/feel like they used to. Yes, I too have to really pay attention to things because the normal sensations are gone.
I did consider DIEP flap surgery, but I was too scared of any of the other surgeries that used muscle tissue to form the breast mound to even consider them. I kept thinking it would create a different set of problems, which is what seems to have happened to you.
Anyway, good luck. There are a lot of us out here! : )

Jul 9, 2018 · Mastectomy and Reconstruction (or not) in Breast Cancer

Last month was my two year anniversary for a double mastectomy. I have not re-constructed. I had gone on a women’s only tour group vacation a year before my diagnosis and met a lady whom I had known for three days before I realized she was “going flat”! The only reason I even realized it was because when we went to a spa she refused to take her camisole off. I was amazed that I hadn’t even noticed! So then when I had my diagnosis I remembered that, and my original intention was to not reconstruct at all. I asked my surgeon to make me as “flat as a 10-year-old boy” LOL. Anyway, I had chemo and radiation also, and the only reconstruction that I can have is the DIEP flap because of the radiation to my skin. There is a practice in my town of Fort Worth Texas that specializes in DIEP flap after mastectomy. They do a lot of them and have a high success rate. If you go that route, it is important to go somewhere that has a lot of experience because the procedure involves micro surgery. Last year I briefly reconsidered and thought about doing the DIEP flap, but then I ended up having three surgeries for pelvic floor prolapse (which had nothing to do with cancer) and after having all those surgeries I’m back to where I don’t want reconstruction— because I’m really tired of having surgery. I often go flat and it doesn’t bother me at all. I have prostheses, I call them my “foobs” (fake boobs), of all different kinds… foam, beads, silicone, fiberfill, and for swimsuits, those nylon net bath scrubber puffs work fantastic (they are light and drain the water out immediately). I find most of them to be a little awkward and uncomfortable to me, and don’t seem to sit at the place that looks natural (I’m 63, and high-up perky doesn’t look “right”!) One person told me that the Coobie slimmers with the built-in padded bra that you can slide the foobs into work well, and they do because they don’t ride up. But what I have found to be the best for me is to just wear a T-shirt or tank top that has built-in padded shelf bra. You can always stuff it if you want, but I find that wearing them “as is” works well for me. I will usually wear a vest or open shirt or something over the tank or T-shirt. It makes me look like I have some boobs and it’s OK if they are size A or small B.

After re-reading your original post I want to add that I had cancer in one breast, and my medical oncologist was not happy with my wanting both breasts removed. She fussed at me every time we discussed it. I was insistent (my surgeon gave me no flak about it al all) both so I wouldn’t have to go through everything again if I did develop cancer in the other breast, and also for symmetry. I don’t think I would feel as comfortable being seen without my “foob” if I still had a remaining natural breast.

Jul 7, 2018 · Concerned about the side effects of anastrozole in Breast Cancer

This isn’t directly related to anastrozole, but I developed hives during chemo. The doc had me take Zantac! I knew it just for stomach issues but it’s actually a type of antihistamine. Maybe you knew that already.