Gynecological care while taking tamoxifen

jk1952
jk1952 Member Posts: 613
edited March 2014 in Breast Cancer #1
I've posted something like this a couple times in the past, but there are lots of new people considering taking Tamoxifen, so I thought that I'd repeat, since I feel very strongly about this topic.

I would like to encourage everyone to have consistent gynecological care before, during and after taking Tamoxifen. It's important for the doctor to have baseline test results and be able to follow you regularly.

In 2000, as soon as my primary care physician learned that I was going to start taking Tamoxifen, he immediately referred me to a Gynecologist (for a few years my PCP had done my annual exam and pap smear). In addition to the normal exam, the gyn ordered a baseline sonogram, so he would know how thick my uterine lining was before I started on the drug.

After six months, I had to stop taking Tamoxifen because I developed blood clots (probably totally unrelated to the drug). Since then, I’ve had several minor problems with bleeding, and the Gynecologist has done many tests to assure that all is well. Most of them (with the exception of a D&C) have been easy and haven’t been painful, and they add assurances that there isn’t anything wrong.

A few months ago, when I had my annual exam, and complained that I was still occasionally having a period (at 57), my doctor felt much more urgency about testing since I had taken Tamoxifen for a period of time (even though it was only six months). Long story short, he found polyps which have since been removed and were benign, so hopefully that's the end of the bleeding.

I would never discourage someone from taking Tamoxifen or a similar drug, because there are definite advantages. I might not have had a recurrence last year, if I'd been able to continue the Tamoxifen. But, the most important thing is to have good care that helps to diagnose any problem early.

Joyce

Comments

  • Marcia527
    Marcia527 Member Posts: 2,729
    #2
    Same here. I started
    Same here. I started spotting 9 months after starting Tamoxifen and ended up with a D&C because of polyps. They were benign. But because of family history he switched me to Aromasin. By that time he realised I was in chemo induced menopause.
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #3
    Very excellent advice.
    Very excellent advice. Thank you so much for sharing your experience and reminding us that we are all unique.

    I was a "guinea pig" because I was a premenopausal woman (33) taking tamoxifen back in 1987 when no one was sure if I should take it at all.

    Although it worked great for me, as you point out, it can have very serious side effects. Besides clots and strokes, uterine cancer risk increases (especially after 5 years). Because I was on the drug for 7 yrs (we didn't know how long I should take it back then), I had many endometrial biopsies. I hope I never have to have another! Luckily, all was fine with my uterus.

    I am on arimidex now. And of course it can have adverse effects too, but so far so good.

    How are you doing now? Are you on an aromatase inhibitor? Are you ER+?

    Hope you are fine! You are in my thoughts and prayers.
  • jk1952
    jk1952 Member Posts: 613
    #4
    CypressCynthia said:

    Very excellent advice.
    Very excellent advice. Thank you so much for sharing your experience and reminding us that we are all unique.

    I was a "guinea pig" because I was a premenopausal woman (33) taking tamoxifen back in 1987 when no one was sure if I should take it at all.

    Although it worked great for me, as you point out, it can have very serious side effects. Besides clots and strokes, uterine cancer risk increases (especially after 5 years). Because I was on the drug for 7 yrs (we didn't know how long I should take it back then), I had many endometrial biopsies. I hope I never have to have another! Luckily, all was fine with my uterus.

    I am on arimidex now. And of course it can have adverse effects too, but so far so good.

    How are you doing now? Are you on an aromatase inhibitor? Are you ER+?

    Hope you are fine! You are in my thoughts and prayers.

    Thanks for asking: I am
    Thanks for asking: I am doing well. I was ER+ and PR+. Last year, my recurrence was DCIS, not invasive cancer, and I had a bilateral mastectomy with DIEP reconstruciton. I do know now that I have Factor V Leiden, so I think my oncologist has been reluctant to prescribe any other medications.

    Joyce
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #5
    jk1952 said:

    Thanks for asking: I am
    Thanks for asking: I am doing well. I was ER+ and PR+. Last year, my recurrence was DCIS, not invasive cancer, and I had a bilateral mastectomy with DIEP reconstruciton. I do know now that I have Factor V Leiden, so I think my oncologist has been reluctant to prescribe any other medications.

    Joyce

    Yes the Factor V Leiden
    Yes the Factor V Leiden situation would certainly complicate your care! Sounds like you are doing well anyway? My oldest sis had DCIS and had a bilateral mastectomy and nothing else. So far so good and I believe she is about 18-20 yrs out! Who can remember? My little sister and I are in a different position as she had early invasive and I had stage 3. I now have stage 4 (mets to bone) but have been dealing with this for 23 years. I expect to be dealing with it for at least 23 more!
  • cahjah75
    cahjah75 Member Posts: 2,631
    #6
    Thanks for
    Thanks for bringing up this subject. I had one sister age 49 with DCIS who had lumpectomy and rads. She took Tamoxifen for 5 years. Her gyn had her get an ultrasound and a polyp was found and removed. She had no other side effects but now has osteoporosis. Another sister (53) had lumpectomy and 7 lymph nodes tested positive. She had chemo, rads and took Arimidex for 5 years with no side effects. However, she had a hysterectomy 11 months before dx with breast cancer. I had BLM June 22 and see my oncologist July 19. My lymph nodes tested negative so my surgeon thinks I do not need chemo or rads as he had first thought. The interesting thing is a week after I was dx I started to spot. I'm 61 and 11 years post menopause. I had just had my annual so to be on the safe side my gyn did an endometrial biopsy and I also had an ovarian ultrasound. All was ok and my spotting actually stopped 2 weeks later. I plan on asking the oncologist a lot of questions about side effects. I already suffer from osteoarthritis and have had several surgeries. I don't want to add to my already distressed body.
    Char
  • jk1952
    jk1952 Member Posts: 613
    #7
    CypressCynthia said:

    Yes the Factor V Leiden
    Yes the Factor V Leiden situation would certainly complicate your care! Sounds like you are doing well anyway? My oldest sis had DCIS and had a bilateral mastectomy and nothing else. So far so good and I believe she is about 18-20 yrs out! Who can remember? My little sister and I are in a different position as she had early invasive and I had stage 3. I now have stage 4 (mets to bone) but have been dealing with this for 23 years. I expect to be dealing with it for at least 23 more!

    CypressCynthia,
    I pray for
    CypressCynthia,

    I pray for wisdom for your doctors and that they can find the right treatment for you. 23 years is a long time to deal with cancer, but I can tell that you know that a positive attitude makes a huge difference and is very important in your treatments and in healing. I, too, plan to have a long productive life!

    Joyce
  • jk1952
    jk1952 Member Posts: 613
    #8
    Marcia527 said:

    Same here. I started
    Same here. I started spotting 9 months after starting Tamoxifen and ended up with a D&C because of polyps. They were benign. But because of family history he switched me to Aromasin. By that time he realised I was in chemo induced menopause.

    Marcia, I remember your
    Marcia, I remember your saying you had polyps, and that everything has been OK snce those were treated. It helped me when I first learned that I had them, to know that you have done so well.

    Joyce
  • jk1952
    jk1952 Member Posts: 613
    #9
    cahjah75 said:

    Thanks for
    Thanks for bringing up this subject. I had one sister age 49 with DCIS who had lumpectomy and rads. She took Tamoxifen for 5 years. Her gyn had her get an ultrasound and a polyp was found and removed. She had no other side effects but now has osteoporosis. Another sister (53) had lumpectomy and 7 lymph nodes tested positive. She had chemo, rads and took Arimidex for 5 years with no side effects. However, she had a hysterectomy 11 months before dx with breast cancer. I had BLM June 22 and see my oncologist July 19. My lymph nodes tested negative so my surgeon thinks I do not need chemo or rads as he had first thought. The interesting thing is a week after I was dx I started to spot. I'm 61 and 11 years post menopause. I had just had my annual so to be on the safe side my gyn did an endometrial biopsy and I also had an ovarian ultrasound. All was ok and my spotting actually stopped 2 weeks later. I plan on asking the oncologist a lot of questions about side effects. I already suffer from osteoarthritis and have had several surgeries. I don't want to add to my already distressed body.
    Char

    Char, glad to hear that you
    Char, glad to hear that you might not have to have chemo or radiation. I didn't find radiation to be too bad, and I've never had chemo. I am very thankful that my doctors haven't felt that chemo has been necessary for my battle. I'm hoping that everyone who reads this isn't frightened by it; I just hope they all take proper precautions.

    Joyce
  • lolad
    lolad Member Posts: 670
    #10
    Joyce
    I totally didnt want to take tamoxifen and asked my onc why it was necessary for me to take it. He told me very important. Had to take it. I started it in October and almost instantly it affected me with bleeding constantly and problems. Ive never had a problem before, but had to have a total hysterectomy five weeks ago. The onc gyno said the tamoxifen was causing my issues and i had developed cervical cancer in that short of a time. So, what do you do, take the chance and not take the tamoxifen and its highly likely you get a bc reaccurance or take the tamoxifen and have a high chance of getting cervical cancer and develope other gyno problems? At least its all gone now and i dont have to worry about cancer there.
  • cathyp
    cathyp Member Posts: 376 Member
    #11
    lolad said:

    Joyce
    I totally didnt want to take tamoxifen and asked my onc why it was necessary for me to take it. He told me very important. Had to take it. I started it in October and almost instantly it affected me with bleeding constantly and problems. Ive never had a problem before, but had to have a total hysterectomy five weeks ago. The onc gyno said the tamoxifen was causing my issues and i had developed cervical cancer in that short of a time. So, what do you do, take the chance and not take the tamoxifen and its highly likely you get a bc reaccurance or take the tamoxifen and have a high chance of getting cervical cancer and develope other gyno problems? At least its all gone now and i dont have to worry about cancer there.

    Tamoxifen
    When it was decided I shouldn't take Tamoxifen, my onco told me the following: A good diet w/exercise would give you the same benefits. Let's hope so!
  • jk1952
    jk1952 Member Posts: 613
    #12
    lolad said:

    Joyce
    I totally didnt want to take tamoxifen and asked my onc why it was necessary for me to take it. He told me very important. Had to take it. I started it in October and almost instantly it affected me with bleeding constantly and problems. Ive never had a problem before, but had to have a total hysterectomy five weeks ago. The onc gyno said the tamoxifen was causing my issues and i had developed cervical cancer in that short of a time. So, what do you do, take the chance and not take the tamoxifen and its highly likely you get a bc reaccurance or take the tamoxifen and have a high chance of getting cervical cancer and develope other gyno problems? At least its all gone now and i dont have to worry about cancer there.

    Lolad
    Lolad, I'm so sorry to hear about your cervical cancer. You've really had a long road to recovery: I hope that you are doing well now.

    When I took Tamoxifen (in 2000), doctors were less insistent about taking it, and there were no other alternatives. I asked all of my doctors whether they felt it was the right thing to do; not just my oncologist. I finally did decide to try it, but was not really disappointed when I was told to stop.

    You are right, in medicine, often there are two alternatives, and the risks and benefits always have to be weighed. I can't imagine being a doctor who has to make these decisions every day about drugs that may help a patient but may have side effects. I can often see my PCP going through the problems and allergies I have in order to determine the right drug to prescribe, or if any are appropriate.

    Joyce
  • jk1952
    jk1952 Member Posts: 613
    #13
    jk1952 said:

    Lolad
    Lolad, I'm so sorry to hear about your cervical cancer. You've really had a long road to recovery: I hope that you are doing well now.

    When I took Tamoxifen (in 2000), doctors were less insistent about taking it, and there were no other alternatives. I asked all of my doctors whether they felt it was the right thing to do; not just my oncologist. I finally did decide to try it, but was not really disappointed when I was told to stop.

    You are right, in medicine, often there are two alternatives, and the risks and benefits always have to be weighed. I can't imagine being a doctor who has to make these decisions every day about drugs that may help a patient but may have side effects. I can often see my PCP going through the problems and allergies I have in order to determine the right drug to prescribe, or if any are appropriate.

    Joyce

    Cathy, were there particular
    Cathy, were there particular things your doctor told you to avoid; or other things that were necessary in a good diet?

    Joyce
  • cathyp
    cathyp Member Posts: 376 Member
    #14
    jk1952 said:

    Cathy, were there particular
    Cathy, were there particular things your doctor told you to avoid; or other things that were necessary in a good diet?

    Joyce

    Diet
    Sorry Joyce,

    We didn't get specific about it other than low fat, whole grains, fruits and vegies, no sugar. I haven't asked about soy products. My rad oncologist has a nutristionist on staff so I should set up an appointment with her.

    Cathy
  • faith_trust_and_a_little_bit_of_chemotherapy
    faith_trust_and_a_little_bit_of_chemotherapy Member Posts: 319 Member
    #15
    cathyp said:

    Diet
    Sorry Joyce,

    We didn't get specific about it other than low fat, whole grains, fruits and vegies, no sugar. I haven't asked about soy products. My rad oncologist has a nutristionist on staff so I should set up an appointment with her.

    Cathy

    Thank you...
    I will not be on Tamoxifen, but I do know of one survivor and supporter for me that is. She mentioned to me the other day that she keeps forgetting and has been missing her pap appointments.

    Rest assured, I will be encouraging her to go...even if it means I take her myself.
  • JuJuBeez
    JuJuBeez Member Posts: 332
    #16
    jk1952 said:

    Lolad
    Lolad, I'm so sorry to hear about your cervical cancer. You've really had a long road to recovery: I hope that you are doing well now.

    When I took Tamoxifen (in 2000), doctors were less insistent about taking it, and there were no other alternatives. I asked all of my doctors whether they felt it was the right thing to do; not just my oncologist. I finally did decide to try it, but was not really disappointed when I was told to stop.

    You are right, in medicine, often there are two alternatives, and the risks and benefits always have to be weighed. I can't imagine being a doctor who has to make these decisions every day about drugs that may help a patient but may have side effects. I can often see my PCP going through the problems and allergies I have in order to determine the right drug to prescribe, or if any are appropriate.

    Joyce

    Wow, thank you for the
    Wow, thank you for the advice. I am 43, premenopausal, and due to start Tamoxifen soon. I had no idea about the gyn side effects... I was just expecting the hot flashes, mood swings, and weight gain.. (aren't those enough???)

    I appreciate the 'heads-up' and will have more questions for the doc. I would much rather have a way to get the positive effects without medication.

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