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Stage 1A, released from treatment and concerned

Hi, I was diagnosed early 2020 with Stage 1A IDC with ITC’s in one node, HR+ IDC. I had a DMX, and 3 years of zoladex and letrozole. I was having really bad bone pain and tried different AI’s. They were worse. My MO felt it was ok to try tamoxifen. That was unbearable for me. I was happy to go back to the AI but my dr released me from having to take anything (2 years early) since it was very early and labs have been great for a while. I was OK about it but since then, I’ve had a couple of recurrence scares that turned out to be benign. And today, for the first time since my first zoladex shot, I got my period. Now I’m scared that I stopped treatment early and with this estrogen running through my body, something may start up again. I literally was in my MO office today and asking when will I get my period and it showed up 2 hours later. I feel like my MO thinks I was over treated as it was. But with a few scares and now my cycle coming back, I feel anxious :/

Comments

  • orangeflower
    orangeflower Member Posts: 92

    Hi kringle. I'm sorry to hear that you had so much trouble with the meds and had to stop taking them. Have you thought about getting a second opinion? My doctors were aggressive with me even though I was early stage. I ended up having to stop taking the meds because they were all so intolerable. I've decided to just accept fate for whatever it's going to be, and I keep reminding myself that my risk of recurrence is low.

  • anne333
    anne333 Member Posts: 6

    Hi @kringle12 . I wouldn't be afraid to get a second opinion. It could help with the anxiety to either get reassurance that you're on a good plan or to see if there's a better option out there. I was always scared to get a second opinion because I didn't want my MO to find out and get angry with me. In hindsight, I feel like that was the wrong course of action. If I had it all to do over again, I wouldn't worry about what anyone thought about anything. I'm sending you lots of love.

  • brutersmom
    brutersmom Member Posts: 877

    I was released early after 1 and ½ years on arimidex. I found the side effects unbearable. I had back pain so bad I walked bent over. I slept two hours a night. I was angry and want to hurt othersnor myself. I started having crazy thoughts. I ask for help but my oncologist said I needed to learn to live with it. I decided to commit suicide. Didn't really think it through and realized it wasn't going to work anyway. I sat in my garage with the car running. I stopped the meds that day and started to feel better. Went back to the MO. He told me if I wasn't going to take the meds he wouldn't see me any more. Don't bother stopping at the desk, I will turn in your paperwork. I realize now I should have seen another MO in a different facility but at the time I didn't know where to go. I also should have turned in my own paperwork because he lied about why i stopped my meds. 7.5 years later I had a distant recurrence. The 3 MO I have seen don't feel it would have made a difference and it allows me more treatment options. Sometimes I think everything is just the luck of the draw. There is a lot of cancer in my family and yet there is no known genetic connection of the 47 genes that they look for. Get Second opinion from a well established hospital with a good reputation. Don't be afraid to travel an hour or two.

  • kringle12
    kringle12 Member Posts: 14
    edited March 12

    Thank you all for your responses- I didn’t get any notifications, so I figured no one answered. Sorry I missed these!

    I found a tiny lump on my BC side this week incidentally after scratching an itch I had. After reading these, I should've pushed for a second opinion. I am now seeing my breast surgeon Friday for her to take a look and get an ultrasound. I am going to voice all my concerns after that appointment to my MO.

  • kringle12
    kringle12 Member Posts: 14

    For those with a recurrence and you have implants, how do you check for lumps? How do you know if if feel something and what does it feel like? My new lump is about pea sized at the top edges of my implant and I can push it down into the implant. Can’t tell if it’s of concern or something else.

  • snm
    snm Member Posts: 73

    Great question Kringle12- I was wondering the same. Also would be good to hear what initial symptoms occurred in those with distant Mets?

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    moderators Posts: 7,888

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