TAMOXIFIN vs. Ovaries Removal. Opinions?

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LoveBabyJesus
LoveBabyJesus Member Posts: 1,679 Member
in Breast Cancer #1
Hello sisters!

Happy Mother's Day to ALL MOMS! :)

Ok- here I come. I am somewhat frustrated about this pill, tamoxifin.

First of all, I am upset that it wasn't communicated to me about all the side effects about this pill, but only that it was as part of my my cancer treatment. My tumor was 99% estrogen dependent so it was suggested I go on it after I am done with chemo and Rad. After doing research and learning about side effects, I am considering removing my ovaries and taking a different drug/pill. Here is why.

I harvested my eggs. I am 33 years old. If I go on this pill - not to sound negative - and I have to remove my uterus later, because of the pill, how am I going to use those eggs? It's VERY costly to harvest eggs as insurance does not cover it.

Since I was diagnosed with this cancer, there is also a risk on ovarian cancer. So I thought removing the ovaries will not only help me not take the pill, but will also help with preventing this type of cancer later in life.

The removal of the ovaries is a simpler surgery than removing the uterus.

I have learned that many women after taking tamoxifin need to go for vaginal ultrasounds, and often do biopsies of the uterus. I personally have an issue with this because I am not a mom yet. :( What if I need to remove it? I can't afford to pay another woman to carry my child - it can cost at least $100K, plus insurance cost, etc... :(...this makes me frustrated.

I want to be a mom. And though I know staying healthy is VERY important, I am also a woman with a desire to be a good mom - like my mom was to me.

I know this pill helps for estrogen positive cancers, BUT do I have options here? Can I remove the ovaries and not go on it, and choose a different pill? Has any of you done this as an option? Refused to take the pill for any particular reason? I guess my concern is about not being a mom - though I don't mind adopting. But why would my doctors suggest to save my eggs IF they already knew the form of treatment they were using and the side effects?

Ok, I am done. I just have an issue with this pill, that's all. I am also somewhat bothered that science is still hasn't come up with something better by now! I mean, these pharmaceuticals are making a lot of money from this illness. I know, I know, some are trying...but come on. Please? There is a lot of money been invested here - it just makes me wonder. Yet, all these treatments still seem very risky. Yes, cancer is worse - but I guess I am just frustrated about this and I needed to let it all out, because you sisters listen.

Thanks for listening and for being here.

Comments

  • 4slurpee
    4slurpee Member Posts: 41
    #2
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    Talk to your dr.
    Hello,

    I have agonized over the same decision for over a year and I have other issues with my ovaries to boot. I finally resolved it with my gyn. this past month. My doctors had differing opinions but my gyn. knew the most about the subject and I trust him. However, you need to do what is comfortable for you. I just remember them telling me to make sure I do not get pregnant while taking Tamoxifen - reiterated a few times - so there is five years. I have been on Tamoxifen for a year, and luckily, have few side effects to date.

    I have discovered removing the ovaries is not a no problems option, as you already know I am sure. First, from what I understand natural menopause is a trip, but surgical menopause is worse because it is not gradual, more like hitting a brick wall. Secondly, I am not sure if I am wording this correctly, but you cannot have hormone replacement, estrogen, due to being ER+, therefore you will not be able to control the menopause symptoms well for you will not be able to take many of the drugs to care for these symptoms - estrogen replacement. Thirdly, look up length of life between natural menopause and surgical menopause, made me nervous. Every year I have an ultrasound to measure the thickness of my uterus and the size of my remaining ovary (I only have one due to torsion) and this is how we are monitoring the situation. My gyn. has told me the signs to look for mainly bleeding and thickening of the uterus and he is cautious. My gyn. thinks the negatives outweigh the positives on this one.

    From my understanding the risk of ovarian cancer is small ( I have read there is also no proven relationship between breast cancer and ovarian cancer ) . . . yeah but who thought we would get cancer in the first place. I also understand the risk of uterine cancer is small due to breast cancer. Unless you have the BRCA gene, then the risks are small.

    I wish you the best and I wish you peace with whatever decision you think is best for you.

    If anyone knows different information from above, please let me know. I would be thrilled if it was more positive.

    Take care!
  • LoveBabyJesus
    LoveBabyJesus Member Posts: 1,679 Member
    #3
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    4slurpee said:

    Talk to your dr.
    Hello,

    I have agonized over the same decision for over a year and I have other issues with my ovaries to boot. I finally resolved it with my gyn. this past month. My doctors had differing opinions but my gyn. knew the most about the subject and I trust him. However, you need to do what is comfortable for you. I just remember them telling me to make sure I do not get pregnant while taking Tamoxifen - reiterated a few times - so there is five years. I have been on Tamoxifen for a year, and luckily, have few side effects to date.

    I have discovered removing the ovaries is not a no problems option, as you already know I am sure. First, from what I understand natural menopause is a trip, but surgical menopause is worse because it is not gradual, more like hitting a brick wall. Secondly, I am not sure if I am wording this correctly, but you cannot have hormone replacement, estrogen, due to being ER+, therefore you will not be able to control the menopause symptoms well for you will not be able to take many of the drugs to care for these symptoms - estrogen replacement. Thirdly, look up length of life between natural menopause and surgical menopause, made me nervous. Every year I have an ultrasound to measure the thickness of my uterus and the size of my remaining ovary (I only have one due to torsion) and this is how we are monitoring the situation. My gyn. has told me the signs to look for mainly bleeding and thickening of the uterus and he is cautious. My gyn. thinks the negatives outweigh the positives on this one.

    From my understanding the risk of ovarian cancer is small ( I have read there is also no proven relationship between breast cancer and ovarian cancer ) . . . yeah but who thought we would get cancer in the first place. I also understand the risk of uterine cancer is small due to breast cancer. Unless you have the BRCA gene, then the risks are small.

    I wish you the best and I wish you peace with whatever decision you think is best for you.

    If anyone knows different information from above, please let me know. I would be thrilled if it was more positive.

    Take care!

    Thank you for your response!
    Thank you for your response! I will need to research more about ovaries removal too. I guess this isn't easy no matter which way we go. But let's keep our faith! :)

    God bless you.
  • New Flower
    New Flower Member Posts: 4,294
    #4
    Options
    4slurpee said:

    Talk to your dr.
    Hello,

    I have agonized over the same decision for over a year and I have other issues with my ovaries to boot. I finally resolved it with my gyn. this past month. My doctors had differing opinions but my gyn. knew the most about the subject and I trust him. However, you need to do what is comfortable for you. I just remember them telling me to make sure I do not get pregnant while taking Tamoxifen - reiterated a few times - so there is five years. I have been on Tamoxifen for a year, and luckily, have few side effects to date.

    I have discovered removing the ovaries is not a no problems option, as you already know I am sure. First, from what I understand natural menopause is a trip, but surgical menopause is worse because it is not gradual, more like hitting a brick wall. Secondly, I am not sure if I am wording this correctly, but you cannot have hormone replacement, estrogen, due to being ER+, therefore you will not be able to control the menopause symptoms well for you will not be able to take many of the drugs to care for these symptoms - estrogen replacement. Thirdly, look up length of life between natural menopause and surgical menopause, made me nervous. Every year I have an ultrasound to measure the thickness of my uterus and the size of my remaining ovary (I only have one due to torsion) and this is how we are monitoring the situation. My gyn. has told me the signs to look for mainly bleeding and thickening of the uterus and he is cautious. My gyn. thinks the negatives outweigh the positives on this one.

    From my understanding the risk of ovarian cancer is small ( I have read there is also no proven relationship between breast cancer and ovarian cancer ) . . . yeah but who thought we would get cancer in the first place. I also understand the risk of uterine cancer is small due to breast cancer. Unless you have the BRCA gene, then the risks are small.

    I wish you the best and I wish you peace with whatever decision you think is best for you.

    If anyone knows different information from above, please let me know. I would be thrilled if it was more positive.

    Take care!

    Sorry guys
    I understand your pain being a 99% estrogen relatively young mother who decided to keep ovaries.
    1. not everyone has to remove uterus after Tamoxifen. You need to be under care of gynecologist while taking Tamoxifen (regular check up 3-4 times a year). 2. After ovaries removal according to the standard protocol you have to take another pill- aromatase inhibitor. 3. There is an alternative to Tamoxifen for pre-menoausal women such as Zoladex or Lipron shots, which are not fun but double.
    I was on Tamoxifen for 15 months and Zoladex for 10 months.

    Talk to your doctor and genetic counselor. I am sure you will be able use your eggs and have your baby. Please stay positive your future will be bright.
    New Flower
  • Lynn Smith
    Lynn Smith Member Posts: 1,264 Member
    #5
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    New Flower said:

    Sorry guys
    I understand your pain being a 99% estrogen relatively young mother who decided to keep ovaries.
    1. not everyone has to remove uterus after Tamoxifen. You need to be under care of gynecologist while taking Tamoxifen (regular check up 3-4 times a year). 2. After ovaries removal according to the standard protocol you have to take another pill- aromatase inhibitor. 3. There is an alternative to Tamoxifen for pre-menoausal women such as Zoladex or Lipron shots, which are not fun but double.
    I was on Tamoxifen for 15 months and Zoladex for 10 months.

    Talk to your doctor and genetic counselor. I am sure you will be able use your eggs and have your baby. Please stay positive your future will be bright.
    New Flower

    I am older
    I am much older than you but I am glad I can take tamox so far without serious side effects.Two of my friends took it also. I had a total hysteroctomy so no worries there. My friends didn't. They still had their female organs. They had No problems that were serious.The one has some slight bleeding but all tests have been run and nothing found. It is common for women to have bleeding. My urologist told me this after he ran tests on my kidneys and bladder. He said the stones are likely my cause for bleeding but many women have no cause.

    I will continue the tamox for the next 3 1/2 years unless there are problems. I won't have female problems since it is all GONE.My breast surgeon had a serious talk with and said it was important to take the tamox.I had put it off 6 weeks.He said even though my cancer was non invasive I can get other types of cancer.I want to be protected so I took the tamox.

    Talk to your doctor.You have other concerns you need to talk to him/her about. I wish you the best after your cancer treatments.I also Hope you have a baby when all this is over.That would be a miracle.

    Lynn Smith
  • sal314
    sal314 Member Posts: 599 Member
    #6
    Options
    Not An Easy Decision to Make
    I remember driving myself crazy with the same decision. That was 91/2 years ago (I was fairly young, 35). I tried the pill for about 6 months, quit it because I couldn't take the side effects, tried it again, stopped again, didn't do anything for about 3 years, got pregnant, had kid, tried it again and stuck with it for 41/2 years. Just ended last August!

    Ugh. I know the pill has some POSSIBLE serious side effects, but that doesn't mean they will happen to you. I never had any issues with my uterus.

    I'd have to agree with 4Slurpee(?) and all she said. After numerous chats with both my oncologist and ob-gyne they convinced me that the Tamoxifen and the benefits it would give me out weighed any side effects I could MAYBE have.

    It's a very personal decision, but IMO I think your too young and there are too many long-term side effects of going into full-blown menapause. At least with the Tamoxifen, you can get off of it anytime you want and your body will slowly regulate back to how nature intended it to work. Where as once you take your ovaries out, there's no turning back. That always made me nervous.

    Anyway, not sure how much this helps, but know, there are those of us that went through the 5 years of Tamoxifen and came out the other end just fine! :)

    Best,
    Sally
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #7
    Options
    I have had serveral
    interanal ultra sounds followed by D & C and then office visit biopies..today we decdied to take it ALL OUT..overies etc...

    once all done I must go back on med most likely back on Tamoxifen...I have been off for 2 mths due to bleeding (after more then 4 yrs no period) and uterus very Enlarge (can't be taken vaginally)

    I am sorry for what you are going through...

    Denise

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