Tamoxifen can cause ER and PR negative BC

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Balentine
Balentine Member Posts: 393
edited March 2014 in Breast Cancer #1
I have been doing some research on tamoxifen because I go back to the doctor on the 21st and know he is about to put me on tamoxifen for 5 years and found that it can actually cause ER and PR negative breast cancers because it only targets the ER and PR positive cells leaving the negative ones to grow somehow. Anyone else know more about this? I know the negative BC's are much harder to treat. Is it really worth taking the tamoxifen? I know there are risks and side effects with all of these drugs but we have to weight the benefits as well as the risk of the side effects. Thanks.
Lorrie

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  • pattimc
    pattimc Member Posts: 431
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    I hadn't heard that
    I'd be interested to hear what your doctor says. If this is true, for me, I would still take the Tamoxifen. There are side effects with every drug and I just feel Tamoxifen is giving me the best chance to stay cancer free.

    Report back, OK?
  • John_32
    John_32 Member Posts: 71
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    pattimc said:

    I hadn't heard that
    I'd be interested to hear what your doctor says. If this is true, for me, I would still take the Tamoxifen. There are side effects with every drug and I just feel Tamoxifen is giving me the best chance to stay cancer free.

    Report back, OK?

    Take It
    My mother was recently diagnosed with Stage IV breast cancer and the Tamoxifen has been like a miracle drug. My wife was also diagnosed with triple-negative breast cancer last year, so she can't take any of these drugs, and her prognosis has been far worse. Just because you might still get another form of breast cancer that isn't as treatable in the future, doesn't mean you shouldn't aggressively treat the very treatable cancer that you already have.
  • Balentine
    Balentine Member Posts: 393
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    John_32 said:

    Take It
    My mother was recently diagnosed with Stage IV breast cancer and the Tamoxifen has been like a miracle drug. My wife was also diagnosed with triple-negative breast cancer last year, so she can't take any of these drugs, and her prognosis has been far worse. Just because you might still get another form of breast cancer that isn't as treatable in the future, doesn't mean you shouldn't aggressively treat the very treatable cancer that you already have.

    Thanks for your advice
    It is so hard sometimes to know what to do because I know there are side effects with all these medications. I just don't want to take something that can potentially give me a cancer that is worse. I know now why people have told me not to do too much research on the internet because it can make you even more paranoid.

    John, I am so sorry to hear that you are having to go through this with your mother and your wife at the same time. It must be very trying for you to deal with and I will be praying for you. How old is your wife and your mother? What do they treat the triple negative cancer with and how long is the treatment? Do you have children? It has amazed me how many women at various age groups are being diagnosed with cancer. I just wish we all knew why it is increasing at such an alarming rate. We have to stay strong and do everything we can to recover, then try to do the things with diet and lifestyle to help keep us from any recurrences. God bless you and your family. My prayers are going out to you.
    Lorrie Balentine
  • carkris
    carkris Member Posts: 4,553 Member
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    Balentine said:

    Thanks for your advice
    It is so hard sometimes to know what to do because I know there are side effects with all these medications. I just don't want to take something that can potentially give me a cancer that is worse. I know now why people have told me not to do too much research on the internet because it can make you even more paranoid.

    John, I am so sorry to hear that you are having to go through this with your mother and your wife at the same time. It must be very trying for you to deal with and I will be praying for you. How old is your wife and your mother? What do they treat the triple negative cancer with and how long is the treatment? Do you have children? It has amazed me how many women at various age groups are being diagnosed with cancer. I just wish we all knew why it is increasing at such an alarming rate. We have to stay strong and do everything we can to recover, then try to do the things with diet and lifestyle to help keep us from any recurrences. God bless you and your family. My prayers are going out to you.
    Lorrie Balentine

    I dont think it makes ER -
    I dont think it makes ER - breast cancer grow, it just doesnt prevent or treat it if you have it. it should be interesting to get your docs take on it.
  • Balentine
    Balentine Member Posts: 393
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    carkris said:

    I dont think it makes ER -
    I dont think it makes ER - breast cancer grow, it just doesnt prevent or treat it if you have it. it should be interesting to get your docs take on it.

    Here is the website about it
    Here is the website about it.

    http://www.naturalnews.com/026931_cancer_Tamoxifen_brst_cancer.html
  • TraciInLA
    TraciInLA Member Posts: 1,994 Member
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    Balentine said:

    Thanks for your advice
    It is so hard sometimes to know what to do because I know there are side effects with all these medications. I just don't want to take something that can potentially give me a cancer that is worse. I know now why people have told me not to do too much research on the internet because it can make you even more paranoid.

    John, I am so sorry to hear that you are having to go through this with your mother and your wife at the same time. It must be very trying for you to deal with and I will be praying for you. How old is your wife and your mother? What do they treat the triple negative cancer with and how long is the treatment? Do you have children? It has amazed me how many women at various age groups are being diagnosed with cancer. I just wish we all knew why it is increasing at such an alarming rate. We have to stay strong and do everything we can to recover, then try to do the things with diet and lifestyle to help keep us from any recurrences. God bless you and your family. My prayers are going out to you.
    Lorrie Balentine

    Preach it, Brother John
    What John said. Times 10. I'm ER+, so I already know my body knows how to make ER+ cancer, and I have many estrogen-filled years ahead of me until menopause, so I'm gonna trust my doctors and take my Tamoxifen every morning for 5 years.

    I consulted with two oncologists after my diagnosis, and both told me that Tamoxifen would probably be the MOST important for me of all the treatment I had (chemo, radiation & Tamoxifen).

    I also take a lot of comfort in the fact that Tamoxifen is quite an old drug -- it was discovered in 1962, and major research studies have been done on it since the 80s, so I and my doctors have decades of research to rely upon.

    And yes, Lorrie, please be very careful about what sites you look at, because you can scare yourself to death. I think it's best to stay with well-known, reputable sites, such as the ACS, Mayo Clinic, Susan G. Komen, etc.

    Traci
  • Hubby
    Hubby Member Posts: 325
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    Balentine said:

    Here is the website about it
    Here is the website about it.

    http://www.naturalnews.com/026931_cancer_Tamoxifen_brst_cancer.html

    This is a section from the
    This is a section from the link you posted:

    "Many question the report and its methodology, which is the typical reaction from the medical community to bad news. And this is especially bad news, as tamoxifen is a staple in the fight against cancer.

    The report about tamoxifen was not based on a research study, but only on observation."

    I wouldn't take this article too seriously. They have there own agenda to push. It seems more likely that some tumors contain both + and - cells, and the ER/PR- cells aren't being treated and are more likely to come back.
  • KathiM
    KathiM Member Posts: 8,028 Member
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    When I was treated, more than 4 years ago....
    There was nothing to even treat 'triple negative' breast cancer...

    Herceptin and a chemo used first for colon cancer at least gives some hope for these warriors...

    I agree with others, anybody can say anything they want. And a point can be argued both ways...evidence can be used to support either one...

    Can I get er/pr- BC? Of course! But I am less likely to get er+ returning because of the Tamoxifen? OF COURSE!!!

    Thanks for keeping your ear to the news!

    Hugs, Kathi
  • Balentine
    Balentine Member Posts: 393
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    KathiM said:

    When I was treated, more than 4 years ago....
    There was nothing to even treat 'triple negative' breast cancer...

    Herceptin and a chemo used first for colon cancer at least gives some hope for these warriors...

    I agree with others, anybody can say anything they want. And a point can be argued both ways...evidence can be used to support either one...

    Can I get er/pr- BC? Of course! But I am less likely to get er+ returning because of the Tamoxifen? OF COURSE!!!

    Thanks for keeping your ear to the news!

    Hugs, Kathi

    Thanks for all of your advice
    I appreciate all your advice and put many of my fears to rest. I am over my chemo now and physically getting my strength back but my emotions have been terrible and as many others have stated, fear of recurrences are our biggest hurdle to overcome after chemo. Getting to a place where you just stop worrying about it is my goal right now. I have to keep positive thoughts and when negative ones come, I have to replace them with positive ones and the promises of God so that quality of life trumps all the worrying I do. Thanks and God bless!
    Lorrie
  • John_32
    John_32 Member Posts: 71
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    Balentine said:

    Thanks for all of your advice
    I appreciate all your advice and put many of my fears to rest. I am over my chemo now and physically getting my strength back but my emotions have been terrible and as many others have stated, fear of recurrences are our biggest hurdle to overcome after chemo. Getting to a place where you just stop worrying about it is my goal right now. I have to keep positive thoughts and when negative ones come, I have to replace them with positive ones and the promises of God so that quality of life trumps all the worrying I do. Thanks and God bless!
    Lorrie

    Balentine
    My wife was diagnosed last year at age 39 with Stage 0 triple negative breast cancer. The diagnosis led my mother (age 56) to check out a lump she had been feeling in her breast as well, and after a series of tests she was told not only that she had breast cancer, but that she was already Stage IV, e.g., too late for surgery or chemotherapy. It was really terrible, and almost surreal, to have the wife that I had just married, and my mother, get cancer diagnoses within a month of each other. Fast forward about a year, and my mother, who has only been taking tamoxifen, seems very healthy, and all the indicators suggest that the cancer is being treated successfully. My wife, who has had two lumpectomies and breast radiation, has also been doing well despite the fact that, because she is triple negative, she cannot take any of the drugs available to my mother. And unfortunately, after a series of minor seizures, it was discovered in April that my wife's breast cancer has spread to her brain. She has undergone brain radiation and is recovering well and we remain hopeful. If there had been drugs developed for patients with triple negative breast cancer we probably would not be in this situation right now. Which is why you should consider yourself forunate-odd as that may sound-that your cancer can be treated with tamoxifen. Like I said, my mother has been taking it daily, and she is Stage IV, and you would not even think she has cancer at all.
  • Balentine
    Balentine Member Posts: 393
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    John_32 said:

    Balentine
    My wife was diagnosed last year at age 39 with Stage 0 triple negative breast cancer. The diagnosis led my mother (age 56) to check out a lump she had been feeling in her breast as well, and after a series of tests she was told not only that she had breast cancer, but that she was already Stage IV, e.g., too late for surgery or chemotherapy. It was really terrible, and almost surreal, to have the wife that I had just married, and my mother, get cancer diagnoses within a month of each other. Fast forward about a year, and my mother, who has only been taking tamoxifen, seems very healthy, and all the indicators suggest that the cancer is being treated successfully. My wife, who has had two lumpectomies and breast radiation, has also been doing well despite the fact that, because she is triple negative, she cannot take any of the drugs available to my mother. And unfortunately, after a series of minor seizures, it was discovered in April that my wife's breast cancer has spread to her brain. She has undergone brain radiation and is recovering well and we remain hopeful. If there had been drugs developed for patients with triple negative breast cancer we probably would not be in this situation right now. Which is why you should consider yourself forunate-odd as that may sound-that your cancer can be treated with tamoxifen. Like I said, my mother has been taking it daily, and she is Stage IV, and you would not even think she has cancer at all.

    Your strength and support are a blessing to those around you
    I do know and believe that I am fortunate to have a cancer that is so treatable. I am just concerned about the side effects and post effects of the tamoxifen with the negative cancers as I stated but I do understand I have to treat what I have at the given time and not worry about what I do not currently have or may not have to worry about.
    How many radiation treatments does your wife have to have? Do they feel the tamoxifen will be enough to cure your mothers' cancer? I pray that all goes well with your wife and mother and that you can receive some encouragement and support from others in your family and also from this support network to help you deal with such difficult news. Please continue to let us all know how they are doing and their treatments go along and I pray that God will strengthen you to be there for them and give you some peace and comfort to know He is there with you as a refuge.
    Lorrie
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
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    Balentine said:

    Thanks for your advice
    It is so hard sometimes to know what to do because I know there are side effects with all these medications. I just don't want to take something that can potentially give me a cancer that is worse. I know now why people have told me not to do too much research on the internet because it can make you even more paranoid.

    John, I am so sorry to hear that you are having to go through this with your mother and your wife at the same time. It must be very trying for you to deal with and I will be praying for you. How old is your wife and your mother? What do they treat the triple negative cancer with and how long is the treatment? Do you have children? It has amazed me how many women at various age groups are being diagnosed with cancer. I just wish we all knew why it is increasing at such an alarming rate. We have to stay strong and do everything we can to recover, then try to do the things with diet and lifestyle to help keep us from any recurrences. God bless you and your family. My prayers are going out to you.
    Lorrie Balentine

    I didn't know this. Thanks
    I didn't know this. Thanks for telling us.

    And, prayers to you John and your family.
  • carkris
    carkris Member Posts: 4,553 Member
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    Balentine said:

    Your strength and support are a blessing to those around you
    I do know and believe that I am fortunate to have a cancer that is so treatable. I am just concerned about the side effects and post effects of the tamoxifen with the negative cancers as I stated but I do understand I have to treat what I have at the given time and not worry about what I do not currently have or may not have to worry about.
    How many radiation treatments does your wife have to have? Do they feel the tamoxifen will be enough to cure your mothers' cancer? I pray that all goes well with your wife and mother and that you can receive some encouragement and support from others in your family and also from this support network to help you deal with such difficult news. Please continue to let us all know how they are doing and their treatments go along and I pray that God will strengthen you to be there for them and give you some peace and comfort to know He is there with you as a refuge.
    Lorrie

    It is important to research
    It is important to research and ask about all the drugs you take for sure. I was told also by my rads onc that tamoxifen is most important as it is a targeted therapy. I hate the idea of taking meds but I have/had cancer and I have to do it. I am also going to be taking zometa twice a year IV it has been shown to decrease mets not just to bone but also all other places the beast likes to go by close to 40 percent. many women including triple negative are being put on it. John perhaps you can inquire about this. hugs to you all
  • Alexis F
    Alexis F Member Posts: 3,598
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    Balentine said:

    Here is the website about it
    Here is the website about it.

    http://www.naturalnews.com/026931_cancer_Tamoxifen_brst_cancer.html

    Thanks for the website.
    Thanks for the website. This is news to me!
  • DianeBC
    DianeBC Member Posts: 3,881 Member
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    TraciInLA said:

    Preach it, Brother John
    What John said. Times 10. I'm ER+, so I already know my body knows how to make ER+ cancer, and I have many estrogen-filled years ahead of me until menopause, so I'm gonna trust my doctors and take my Tamoxifen every morning for 5 years.

    I consulted with two oncologists after my diagnosis, and both told me that Tamoxifen would probably be the MOST important for me of all the treatment I had (chemo, radiation & Tamoxifen).

    I also take a lot of comfort in the fact that Tamoxifen is quite an old drug -- it was discovered in 1962, and major research studies have been done on it since the 80s, so I and my doctors have decades of research to rely upon.

    And yes, Lorrie, please be very careful about what sites you look at, because you can scare yourself to death. I think it's best to stay with well-known, reputable sites, such as the ACS, Mayo Clinic, Susan G. Komen, etc.

    Traci

    I agree with John and Traci,
    I agree with John and Traci, you shouldn't take a lot of sites too seriously. There are some that do have good information and some that are writing untruths.

    The sites Traci mentioned are the best.
  • wendybia
    wendybia Member Posts: 73
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    carkris said:

    It is important to research
    It is important to research and ask about all the drugs you take for sure. I was told also by my rads onc that tamoxifen is most important as it is a targeted therapy. I hate the idea of taking meds but I have/had cancer and I have to do it. I am also going to be taking zometa twice a year IV it has been shown to decrease mets not just to bone but also all other places the beast likes to go by close to 40 percent. many women including triple negative are being put on it. John perhaps you can inquire about this. hugs to you all

    zometa
    have you had the zometa yet ? i'm on femara and will have my first zometa in sept., my onc says you get very sick from the first one and only the first one...flu like symtoms for three days...wendy