Anastrozole and bladder pain

Posted by virginiae @virginiae, Feb 28 11:10am

I have been on Anastrozole for 3 years and bladder pain has become my top issue. Feels like a UTI, but when I have my PCP test my urine there is no UTI. Went to a urogyn who said this is a result of the tissues thinning from lack of estrogen. With approval from my oncologist and urogyn, I use a small amount of estrogen cream vaginally 2x week, and the urogyn prescribed another medicine for pain flareups. I've been able to get by this way for a time, but it's been getting worse and harder to control the flareups. Next week I'm going back to the urogyn so she can look inside my bladder and make sure there's no cancer. Assuming there isn't (fingers crossed), if I cannot control the pain it's going to be a deal breaker for me and I will stop the anastrozole. I have been managing through the joint pain and other side effects, but it's very hard to function with bladder pain and I have to be able to support myself for a little longer. Anyone else struggling with this? Thanks…

Liked by trixie1313

@virginiae
By any chance, have you thought of changing your aromatase inhibitor? I had problems with extreme joint pain and headaches with anastrozole and letrozole and the symptoms are much less on my current exemestane. I could barely walk with the first two meds. So sorry you are experiencing all that bladder pain – hoping it gets better for you.

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I agree with Trixie, @virginiae. I think a conversation with your doctor about switching AIs immediately is in order. Exemestane might be a good choice

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@virginiae
Such an interesting question. I have an estrogen-related issue which may or may not be in the same boat, but may further enlighten the discussion.

Six years ago, as a clearly postmenopausal woman, I began having horrendous UTIs each month (something my mother and older sister also were plagued with). My PCP would give me antibiotics to which I would have strong adverse effects, and sent me to a urologist who said my bladder and kidneys were in great shape. After several months of the UTIs, I went to a gyno-oncologist on another issue and mentioned the UTIs. He said the solution to that was easy and prescribed 10 mcg. vaginal estradiol tablets twice a week (a tiny, tiny amount)… and the UTIs stopped. I haven't had one since. (I had no idea there was a connection, and apparently, neither did my PCP nor the urologist.)

When menopause occurs, estrogen production is reduced, which is the major cause of urogenital atrophy. Atrophy means a wasting away of muscle mass, and urogenital atrophy involves atrophy of the vagina as well as atrophy of the urinary tract. Potential issues include UTIs, stress and urge incontinence, pelvic organ prolapse, vaginal bleeding, etc. There are various lifestyle changes (like reducing caffeine, specific exercises, maintaining a healthy weight, etc.) and medical procedures which can address these. Topical estradiol also is one.

As you likely know, anastrozole is a double-whammy for postmenopausal women… our ovaries are no longer making estrogen, and now the anastrozole is blocking the estrogen from our fat cells and adrenals.

At one time, it was thought that topical vaginal estradiol was contraindicated for HR+ breast cancer patients, as systemic estradiol (HRT) certainly is. More recently, however, studies indicate that postmenopausal breast cancer women who use vaginal estrogen have the same risks (for invasive breast cancer, stroke, blood clots, endometrial cancer, and colorectal cancer) as women who do not use vaginal estrogen.
https://www.breastcancer.org/research-news/vaginal-estrogen-not-linked-to-high-risk
https://www.acog.org/Clinical-Guidance-and-Publications/Committee-Opinions/Committee-on-Gynecologic-Practice/The-Use-of-Vaginal-Estrogen-in-Women-With-a-History-of-Estrogen-Dependent-Breast-Cancer?IsMobileSet=false
https://www.medpagetoday.com/obgyn/breastcancer/56449
The controversy now is whether the tiny amounts of estradiol (10 mcg taken twice a week = 20 mcg.) which breast cancer survivors use for urogenital issues is enough to interfere with the work of anastrozole (1 mg. = 1,000 mcg. taken daily = 7,000 mcg) as to make it substantially less efficacious. The use of estradiol therefore becomes an informed decision as the experts have not come to a conclusion.

Here's hoping that your uro-gyn can assess what's going on with your bladder (due to a prolapsed uterus, for example) and that s/he can provide the relief you need and deserve.

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Thank you all. I will ask my onc about Exemestane, though I have read on this forum it is very expensive and doubt my insurance would cover it for more than a month or two. It is worth a try though. The tiny amount of estrogen I use definitely helps, even though my PCP shames me for using it. It’s the only thing keeping me on the Anastrozole. Your support is so helpful.

Liked by trixie1313

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@virginiae

Thank you all. I will ask my onc about Exemestane, though I have read on this forum it is very expensive and doubt my insurance would cover it for more than a month or two. It is worth a try though. The tiny amount of estrogen I use definitely helps, even though my PCP shames me for using it. It’s the only thing keeping me on the Anastrozole. Your support is so helpful.

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@virginiae I don't know if this will help, but I found this on a search: https://www.pfizer.com/products/product-detail/aromasin

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@trixie1313

@virginiae I don't know if this will help, but I found this on a search: https://www.pfizer.com/products/product-detail/aromasin

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OOOOO! Financial support from Pfizer! Let me know if they really are willing to help significantly. I have Kaiser, so I don't need the help, but soooo many others do.

Liked by trixie1313

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@sparklegram I have Kaiser also so only pay $5 for a 3-month supply. I'm hoping this will help though for virginiae.

Liked by sparklegram

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@trixie1313

@sparklegram I have Kaiser also so only pay $5 for a 3-month supply. I'm hoping this will help though for virginiae.

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Yes, It's the same for me. I'm currently taking Tamoxifen, but all the ones I've tried have been the same price. I DO hope Pfizer's discount is substantial.

Liked by trixie1313

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@trixie1313

@sparklegram I have Kaiser also so only pay $5 for a 3-month supply. I'm hoping this will help though for virginiae.

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Thank you!

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@virginiae

Thank you all. I will ask my onc about Exemestane, though I have read on this forum it is very expensive and doubt my insurance would cover it for more than a month or two. It is worth a try though. The tiny amount of estrogen I use definitely helps, even though my PCP shames me for using it. It’s the only thing keeping me on the Anastrozole. Your support is so helpful.

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"even though my PCP shames me for using it." The shame is on your PCP. Johns Hopkins and Mayo both recommend vaginal estrogen for breast cancer patients dealing with urogenital issues. Your PCP is uninformed and if "shaming" is a tactic, then s/he is also uncompassionate. Best wishes to you. I do know what you are going through and it is important to find relief to be able to get through each day.

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Went back to the Urogyn today for a cystoscopy (where they look inside your bladder). The good news, no cancer. The not so good news, it is very inflamed (I saw it on the screen) and she officially diagnosed Interstitial Cystitis. Once my Oncologist gets the result I can get her assessment and ask about other AIs. Since it is right now under control, I will continue what I've been doing and look at other dietary changes I can make that might help. In 3 weeks the Urogyn will relook at bladder function (which won't require a cystoscopy). If another major flareup happens, there is Elmiron, a drug for IC. So that's something that could be tried if I reach that point. Maybe I will or won't. At least I have some next steps – sometimes that's all you need to power through another week or month. All the best.

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I got hemmoragic cytstis during treatment. It was like a UTI but worse. The discomfort continued after treatment. I had two bladder biopsies both negative. I had a an ultrasound both internal and external. They found my bladder wall thickened. I have incontinence too. I take Vesicare for that. They said the bladder wall thickness come with age. I am 72. The biggest issue I have is intercourse but that too seems to be getting better. The cystitis is from my chemo. My do said that the cytocin is probably the cause.

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@lucillem72

I got hemmoragic cytstis during treatment. It was like a UTI but worse. The discomfort continued after treatment. I had two bladder biopsies both negative. I had a an ultrasound both internal and external. They found my bladder wall thickened. I have incontinence too. I take Vesicare for that. They said the bladder wall thickness come with age. I am 72. The biggest issue I have is intercourse but that too seems to be getting better. The cystitis is from my chemo. My do said that the cytocin is probably the cause.

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@lucillem72 Thank you, this is helpful. I had 4 rounds of Cytoxan as part of my treatment 3.5 years ago, but the bladder pain came on mostly in the past year. I'll have to ask my doctor about this. I'm sorry you've suffered from it too. How recent was your treatment? And have any meds (or anything) worked for the bladder pain? Best, Virginia

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The hemmoragic cytstis started after my chemo and cytocin. I did antibiotics and my Urologist did a treatment where a catheter with saline solution was inserted in the bladder and you rolled on all 4 sides of your body. It was for 20 mins 5 mins on each side. It helped a little. I have had 2 biopsies and all is okay. I am better now but being 72 it's aging that has also thickened the bladder wall. Anastrozole also also gives you some menopausal effects. I will see the urologist Tuesday to see how it is. I do use a non- estrogen vaginal suppository which is helping. It was from a company called Bonafide. I wish you luck with yours.💕🙏
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Funny you should post this. I recently went toy urologist and my urine sole was cloudy. I had suffered from hemmoragic cytstis during cancer treatment. The sole came back negative. I asked her about Anastrozole she said it wasn't a cause but I have blood in my urine, pain in my groin and feel uncomfortable. I am not sure who to go to next.

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