Arimidex connected to uterine cancer?

bobbyesox
bobbyesox Member Posts: 2
edited March 2014 in Breast Cancer #1
I am a four year survivor of breast cancer. My markers have remained low, and all mammograms and tests have been normal. I've been on Arimidex for about 3 years.

I began spotting quite frequently and I asked my gynecologist if I should be alarmed. I told him it seemed to be linked to whether or not I'd taken my Arimidex on time. If I took it on schedule, no spotting. If I didn't... spotting to medium flow.

He shrugged and said he didn't see how it could be connected but he wasn't a gynecologist so I needed to talk to someone else about that. I went to a gynecologist and at first they weren't too concerned. Finally, after I told them I'd read about other breast cancer survivors on Arimidex that had developed uterine cancer, they did a sonogram. It showed thickened endometrial walls. By that time I had the gynecologist worried (he had never researched Arimidex or Tamoxifen) so he ordered a biopsy. I dreaded it terribly, remembering how horrible the breast biopsy was (and I still don't believe they do that without anesthesia!!!!). It was painful, but nothing like the breast biopsy. Like a really bad menstrual cramp.

The biopsy came back suspicious. My uterus was so enlarged he couldn't get a good specimen, but he said since it WAS so enlarged I should have a hysterectomy anyway so didn't want to put me through another biopsy or D&C. We scheduled a laproscopic robotic hysterectomy/salpingectomy/oophorectomy (which means they took everything... Fallopian tubes, ovaries, cervix, uterus)and my test results came back positive for cancer. Fast growing and dangerous. But, thank goodness, contained in the uterus with no visible signs of spreading. Fingers are crossed that subsequent testing remains the same.

Long story to ask if anyone else has had similar issues.

By the way, do NOT worry about a hysterectomy! I was terrified, but I walked in the house with no pain the day after my surgery. Five days later, I'm doing everything I want to do having taken no pain pills since the few hours after surgery. My worst side effect is the depression from being on my head for 3 hours during surgery, the anesthesia and of course the hormone issues. Still can 't lift anything for another 3 weeks, but I suggest that ANYONE who has had breast cancer and doesn't want children to have it done!! I'm happy to answer any questions, just ask :)

Bobbye

Comments

  • SIROD
    SIROD Member Posts: 2,194 Member
    #2
    Hi Bobbye,
    I know that
    Hi Bobbye,

    I know that Tamoxifen can cause endometrial cancer. Do you know what the cell make up the cancer in your uterus was. I have heard of women who have breast cancer cells in all those organs.

    Your oncologist should have known about Tamoxifen being able to cause endometrial cancer even if he isn't a gynecologist. That one is common knowledge. I was on Arimidex for 5 years without problem.
    I did have atypical cells after using Tamoxifen and needed a D&C.

    Make certain they check with the cellular make up is in the parts removed in the hysterectomy. Did you have lobular instead of ductal with your first dx pathology report. Lobular sort of goes downward in recurrence than ductal.

    Best to you,

    SIROD
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #3
    I always use epocrates to
    I always use epocrates to check on serious side effects and, I am sorry to say, endometrial cancer is listed as a serious adverse effect of arimidex and femara. I wish that I had had a hysterectomy years ago, but didn't want to fool with it when I had irregular bleeding and insurance would pay for it. Now, I'm afraid I'm back to watching and waiting. I didn't mind the first biopsy either, but by the 3rd I think my anticipation was making things worse. I remember wanting to stick that slim rod up my physician's penis withot anesthesia and asking him how it felt ;-)

    I am so happy that you are on the mend. I see my gyn in November and, since you are my inspiration, I will ask about having that hysterectomy again.

    Thanks so much for sharing.
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #4
    CypressCynthia said:

    I always use epocrates to
    I always use epocrates to check on serious side effects and, I am sorry to say, endometrial cancer is listed as a serious adverse effect of arimidex and femara. I wish that I had had a hysterectomy years ago, but didn't want to fool with it when I had irregular bleeding and insurance would pay for it. Now, I'm afraid I'm back to watching and waiting. I didn't mind the first biopsy either, but by the 3rd I think my anticipation was making things worse. I remember wanting to stick that slim rod up my physician's penis withot anesthesia and asking him how it felt ;-)

    I am so happy that you are on the mend. I see my gyn in November and, since you are my inspiration, I will ask about having that hysterectomy again.

    Thanks so much for sharing.

    P.S.
    The reason that I use epocrates and not the PDR is because it lists things in a very organized and succinct way. My sister is a physician so I use her account--not sure what it costs otherwise. My daughter, Katherine, is a PA student and says she has the epocrates free app for her phone, but I don't have a smart phone yet. But I really do recommend epocrates for cutting through the bs and giving you the info that you really need and I have no financial ties with them at all ;-)
  • Marcia527
    Marcia527 Member Posts: 2,729
    #5
    CypressCynthia said:

    I always use epocrates to
    I always use epocrates to check on serious side effects and, I am sorry to say, endometrial cancer is listed as a serious adverse effect of arimidex and femara. I wish that I had had a hysterectomy years ago, but didn't want to fool with it when I had irregular bleeding and insurance would pay for it. Now, I'm afraid I'm back to watching and waiting. I didn't mind the first biopsy either, but by the 3rd I think my anticipation was making things worse. I remember wanting to stick that slim rod up my physician's penis withot anesthesia and asking him how it felt ;-)

    I am so happy that you are on the mend. I see my gyn in November and, since you are my inspiration, I will ask about having that hysterectomy again.

    Thanks so much for sharing.

    I knew about Tamoxifen being
    I knew about Tamoxifen being a problem but never heard about Arimidex! Wow! I learn something every day! Thanks!
  • cookie97
    cookie97 Member Posts: 200
    #6
    Marcia527 said:

    I knew about Tamoxifen being
    I knew about Tamoxifen being a problem but never heard about Arimidex! Wow! I learn something every day! Thanks!

    I'm so glad I read here....
    I did not know that there was correaltion between Arimidex and uterine cancer. I will begin taking it next month, glad you all warned me.

    Peace and Love,
    Edie
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #7
    Bobbye, for the rest of us, please report this possible adverse effect with the FDA. You can report it by downloading a form or by phone. See:
    http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm
  • cahjah75
    cahjah75 Member Posts: 2,631
    #8
    Bobbye
    so sorry that this has happened and the results were cancer of the uterus. For some unknown reason I started to spot shortly after I was dx with bc. I spotted for 2 weeks. I am 11 years post menopause so my gyn did an endometrial biopsy that did not hurt. I also had an ovarian ultrasound. Both showed nothing amiss. I was relieved. I have one sister who was 49 when she was dx with bc and she took Tamoxifen for 5 years. She had one polyp removed from her uterus a couple years after starting Tamoxifen but nothing since. Another sister took Arimidex for years but she had a hysterectomy 11 months before she was dx with bc. I don't know yet what pill I will be taking since I'm still getting chemo. I have severe osteoarthritis and would prefer not to take Arimidex because of bone loss and pain. Sometimes I want to scream because of the side effects.
    Char
  • New Flower
    New Flower Member Posts: 4,294
    #9
    cahjah75 said:

    Bobbye
    so sorry that this has happened and the results were cancer of the uterus. For some unknown reason I started to spot shortly after I was dx with bc. I spotted for 2 weeks. I am 11 years post menopause so my gyn did an endometrial biopsy that did not hurt. I also had an ovarian ultrasound. Both showed nothing amiss. I was relieved. I have one sister who was 49 when she was dx with bc and she took Tamoxifen for 5 years. She had one polyp removed from her uterus a couple years after starting Tamoxifen but nothing since. Another sister took Arimidex for years but she had a hysterectomy 11 months before she was dx with bc. I don't know yet what pill I will be taking since I'm still getting chemo. I have severe osteoarthritis and would prefer not to take Arimidex because of bone loss and pain. Sometimes I want to scream because of the side effects.
    Char

    I never heard about Arimidex
    causing cancer. Usually when oncologists switch patients from Tamoxifen to Arimidex everyone thinks that Arimidex could not cause cancer. When I was advised to transition from Tamoxifen to Arimidex I read side by side comparison and could not recall it. Tamoxifen cause endometrial cancer in 1% of patients Arimidex much low. Everyone should be under care of gynecologist for sure, probably having ultrasound every 6 months.
  • carkris
    carkris Member Posts: 4,553 Member
    #10
    New Flower said:

    I never heard about Arimidex
    causing cancer. Usually when oncologists switch patients from Tamoxifen to Arimidex everyone thinks that Arimidex could not cause cancer. When I was advised to transition from Tamoxifen to Arimidex I read side by side comparison and could not recall it. Tamoxifen cause endometrial cancer in 1% of patients Arimidex much low. Everyone should be under care of gynecologist for sure, probably having ultrasound every 6 months.

    Thank you for sharing your
    Thank you for sharing your story, one hears and reads about the side effects. However it is hard to think they will happen. that you wont be the one. When you hear from someone it has happened to it makes it more real, and you will pay more attention. so glad that your cancer was caught in time.
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #11
    Breast and Endometrial cancers
    I was diagnosed with both less than a week apart. I've been told that it is not unusual for women to have both breast cancer and endometrial cancer in their lifetime - I'm just special to have them both at once. The risk factors for both cancers are actually very similar, primarily the estrogen component. I, too, had Davinci robotic assisted hysterectomy and my recovery was amazing. I have heard about Tamoxifen and endometrial cancer, but not Arimidex.

    Bobbye, when will you know about your final pathology? I have a good friend who just completed chemo for endometrial cancer and while not fun, it was doable. Luckily my endo cancer was Stage 1, grade 1 and I just need follow up exams - no chemo or radiation. Just finished chemo for my breast cancer and see the radiation oncologist tomorrow. That's enough to deal with at one time!

    Suzanne
  • DianeBC
    DianeBC Member Posts: 3,881 Member
    #12
    Marcia527 said:

    I knew about Tamoxifen being
    I knew about Tamoxifen being a problem but never heard about Arimidex! Wow! I learn something every day! Thanks!

    Like you Marcia, I knew
    Like you Marcia, I knew Tamoxifen could create bad problems. I didn't know that Arimidex could too. Thanks for letting me know.


    Good luck to you!
  • SIROD
    SIROD Member Posts: 2,194 Member
    #13
    New Flower said:

    I never heard about Arimidex
    causing cancer. Usually when oncologists switch patients from Tamoxifen to Arimidex everyone thinks that Arimidex could not cause cancer. When I was advised to transition from Tamoxifen to Arimidex I read side by side comparison and could not recall it. Tamoxifen cause endometrial cancer in 1% of patients Arimidex much low. Everyone should be under care of gynecologist for sure, probably having ultrasound every 6 months.

    Hormonal Therapies
    Dear Flower,

    I never heard of Arimidex causing endometrial cancer. However, I never read the fine print either on side effects. This is the reason I scan a lot of online boards. One always learns something new.

    A good gynecologist when dealing with hormonal therapy is the only way to go.

    Best to you,

    SIROD

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