Inerstital cystitis and Arimidex

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KimPossible123
KimPossible123 Member Posts: 7
edited May 2021 in Hormonal Therapy - Before, During, and After

I just started in the hormone blocker. I am freaking because I have a history of inerstital cystitis ie chronic bladder pain. It was so bad at one point I was house bound and in bed for a year. Lost 40 lbs and wanted to die. The HRT helped me manage symptoms until I got cancer. After surgery I was put on the AI. Anastrozole...Also recommended radiation soon. My poor booby! What can I do to cope with the pain once my bladder and vagina tissues dry up and cause pain and suffering? Can Anybody relate ? Help please!

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  • flashlight
    flashlight Member Posts: 698
    edited May 2021

    KimPossible123, I would call your urologist that diagnosed you. Or possibly see a UroGyn. Is there a reason you had to start the AL before radiation?

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  • KimPossible123
    KimPossible123 Member Posts: 7
    edited May 2021

    my breast cancer is 96 hormone receptor positive. But after surgery my breast surgeon found cancer in 3 of my 5 lymph nodes she removed. She changed my treatment plan to return to oncologist and the oncologist prescribed the hormone blockers and then I am waiting to be scheduled for radiation. My urologist has not helped me at all only pushed elmiron which I could not tolerate. Inerstital is the most underrated under researched affliction most sufferers have to find their own way of rely on their own research and other sufferers to find their way also most helpful are the pelvic floor therapists for guidance and help.

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  • flashlight
    flashlight Member Posts: 698
    edited May 2021

    My urogyn had a flyer about their pelvic floor therapy. I found my first MO really wasn't that knowledgeable or paid that much attention to my medical history. When I saw my new MO she did a complete health history, but stated she would only take care of my cancer. Anything else I would have to talk to my PCP about. Thinking of you and sending best wishes.

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  • KimPossible123
    KimPossible123 Member Posts: 7
    edited May 2021

    I found Pelvic floor therapists are so different, but after I did some research found a really good therapist. They can make a huge difference in your recovery. Look up Nicole Cozean. Not sure I am spelling her name right. She wrote a book and has an online course that was very helpful for me. The right therapy and at home follow up csn be life changing. Sorry but what is MO?

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  • saltmarsh
    saltmarsh Member Posts: 227
    edited May 2021

    Following, as I also have had interstitial cystitis -- asymptomatic for a few years, now, but terrified of having flareups again -- and am about to find out what further treatment I need on Friday. And yes, it is so mis-diagnosed and not studied extensively enough. Ugh. Sorry I have no wisdom. Solidarity.

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  • KimPossible123
    KimPossible123 Member Posts: 7
    edited May 2021

    Yes! Indeed! “Terrified of flare ups” rules my life. I think if I was allowed to eat a more balanced non ic diet I would not have cancer today, maybe. My husband always wants me to branch out snd try to things and I am like the apple pie episodes Seinfeld . Shaking my head noooo. Not sure if you can relate but it was funny. But the low quality of life is horrible and sad! That is why I reached out to see how to manage the side effects of no estrogen hormone blockers.

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  • flashlight
    flashlight Member Posts: 698
    edited May 2021

    MO-medical oncologist. They really don't put the side effects of the medication with your current medical issues. Even with positive nodes, starting the AL prior to radiation is rough. Did you meet with the radiation oncologist before making that decision? Did you get your oncotype score when you saw your MO?

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  • KimPossible123
    KimPossible123 Member Posts: 7
    edited May 2021

    I am over 4 weeks since my surgery and trying to get in to Scripps radiology but their system has been down so now another week went by and I can’t get in locally to meet another doctor so I am afraid of going back the recommended weeks for the radiation.

    why do you say it’s rough to start the medication before the radiation. Does it make the radiation more reactive?

    The Rx is making me very scattered and forgetful and disorganized.. I hate it.

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  • flashlight
    flashlight Member Posts: 698
    edited May 2021

    KimPossible123, I had surgery mid Nov and started radiation the end of January. My MO had to wait for my oncotype score to come back to make sure I didn't need chemo. You have to have chemo before radiation. My sister had micromets in 3-nodes and her MO let her go through radiation first before the AL. Radiation affects everyone differently. Check out some of the post. It can wear you down. The side effects of the AL can drain you as well and it is a lot. I don't know what kind of BS you have. Most of us took a month off, to heal, before starting an AL. Before you start this med you have to have a bone density (DEXA scan) done. Because It can cause osteoporosis. I chose tamoxifen because I have osteoporosis and didn't want to add a bone building drug to my regime. There are a lot of good post on this site that you can search through. Are you within driving distance to another facility to get a second opinion? Is there anyone you can ask to get a name in your area? That is what my sister did. She didn't care for her MO and was able to find another for a second opinion. She is doing well on the AL.

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  • KimPossible123
    KimPossible123 Member Posts: 7
    edited May 2021

    Thank you for your reply. I updated my profile so it would be easier for other members to reply to me. Looking into alternative treatment.
    My dilemma is my 84-year-old mother has been diagnosed with breast cancer also just a couple weeks after mine she hast to go through chemo, surgery and more chemo. She has heart problems also. I’m afraid this is the beginning of the end. I have no one else to care for her it’s just me

    My oncotype came back negative so I don’t go through chemo. Estrogen blocking rx and radiation is in my treatment plan. I just don’t know if I can be there for her and go through the radiation and hormone treatment at the same time. it’s rather daunting. I read the 2015 posts on how to prepare for radiation and it was a little scary. I could do it if I had help and didn’t have mom relying on me. I have several autoimmune disorders so I’m pretty tired all the time already.

    I keep telling myself this too will pass. I sure don’t want a reoccurring cancer so i will do what I am told

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