Question about tamoxifen

judyd
judyd Member Posts: 124
edited March 2014 in Breast Cancer #1
Hi everyone, hope you are all having a good day. I had an appointment with the oncologist yesterday. I will not need any treatment as far as following my mastectomy. There were no cancer cells in the tissue or lymph nodes. He said that does put me at higher risk for developing cancer in the other side though, which I knew. He recommended that I take tamoxifen. I know there are possible side effects from taking it. Any of you that have taken it or are currently taking it what are your thoughts on it? I figure that I need to do whatever I can to prevent having to go through this again. I know that prayers have been answered as far as my cancer is concerned. I am truly thankful for that. You just wonder about this dreadful disease. The oncologist did tell me that it puts our daughter at higher risk for getting breast cancer. He said she should start having a mammogram at age 30. She turned 30 in November so I told her that yesterday. What a terrible thing to think you could pass on to your daughter. I will just trust that God will watch over her & protect her from it. Thanks for your input on this. Have a great day everyone. Judy

Comments

  • pamtriggs
    pamtriggs Member Posts: 386
    #2
    Hi Judy. Pam here. Well your story sounds so familiar. I too was told I needed no treatment after mastectomy for BC & for 19 years that proved to be the case. Despite negative nodes some of the sneaky little buggers got into my system & now I am in recurrance. If I'd had Tamoxifen after original operation I probably would be OK now. So go for it. There are very few side effects especially for post menopausal women. Pre-menopausal women could have early menopause & are at a higher risk for ovarian cancer from it. As you have a 30 + daughter I presume you are post menopause like me. (I'm 54) My daughter is 28 & she has been advised she has an increased risk for BC too. She has been advised to start having mammograms at age 30. So it would be a good idea for your daughter to start now. My daughter is especially keen to start at 30 as I was only 35 when I first had BC.Pleased to answer any more questions you may have. The Tamoxifen is working well for me & all my many, many mets are shrinking - some more than others - but the lung one is being a bit stubborn. Good luck with your decision whichever way you go. Keep in touch. Love & hugs. Pam.
  • judyd
    judyd Member Posts: 124
    #3
    pamtriggs said:

    Hi Judy. Pam here. Well your story sounds so familiar. I too was told I needed no treatment after mastectomy for BC & for 19 years that proved to be the case. Despite negative nodes some of the sneaky little buggers got into my system & now I am in recurrance. If I'd had Tamoxifen after original operation I probably would be OK now. So go for it. There are very few side effects especially for post menopausal women. Pre-menopausal women could have early menopause & are at a higher risk for ovarian cancer from it. As you have a 30 + daughter I presume you are post menopause like me. (I'm 54) My daughter is 28 & she has been advised she has an increased risk for BC too. She has been advised to start having mammograms at age 30. So it would be a good idea for your daughter to start now. My daughter is especially keen to start at 30 as I was only 35 when I first had BC.Pleased to answer any more questions you may have. The Tamoxifen is working well for me & all my many, many mets are shrinking - some more than others - but the lung one is being a bit stubborn. Good luck with your decision whichever way you go. Keep in touch. Love & hugs. Pam.

    Hi Pam, thanks for you input. As far as the side effects. I had a hysterectomy in '87 so I don't have to worry about uterin cancer. The doctor thought then I was going through early menopause. I had been put on Premarin & later switched to estrogen patches so I had been taking those for probably 12 years. Of course now I can't use that ever again. So many things so deal with at once. My husband was wondering what was going to happen there, as he puts it to keep me from getting grouchy. HA!HA! I have been off of them since the end of Nov. so we'll see that happens. I had a lot of other things going on in my life right then so now I look back & wonder if that is really what was going on. You never know. As far as my daughter I told her she needed to start with the mammograms. I am 46, started a family young,very young. We just kind of all grew up together but it has been a great. Now we are still young enough to enjoy a lot of good years. Good luck in your treatment, I wish you well. I really think positive thinking is such a key element here. Judy
  • mjdp2
    mjdp2 Member Posts: 133
    #4
    judyd said:

    Hi Pam, thanks for you input. As far as the side effects. I had a hysterectomy in '87 so I don't have to worry about uterin cancer. The doctor thought then I was going through early menopause. I had been put on Premarin & later switched to estrogen patches so I had been taking those for probably 12 years. Of course now I can't use that ever again. So many things so deal with at once. My husband was wondering what was going to happen there, as he puts it to keep me from getting grouchy. HA!HA! I have been off of them since the end of Nov. so we'll see that happens. I had a lot of other things going on in my life right then so now I look back & wonder if that is really what was going on. You never know. As far as my daughter I told her she needed to start with the mammograms. I am 46, started a family young,very young. We just kind of all grew up together but it has been a great. Now we are still young enough to enjoy a lot of good years. Good luck in your treatment, I wish you well. I really think positive thinking is such a key element here. Judy

    My surgeon said that my daughter should start mammograms 10 years earlier than my age of diagnosis. If you are 46 then your daughter should start at age 36 instead of waiting to age 40, the recommended age for screening for the general female population. Breasts are much denser at a younger age so it is hard for the cancer to be seen in the mammograms. It is recommended that all women start BSE, Breast Self Exams at age 20. This is done every month.
    I have been on Tamoxifen for 2 years. Hot flashes occured in the beginning but are now not bothersome. I will stay on it for 3 more years. Hope this info helps. Margaret
  • deecaf1
    deecaf1 Member Posts: 56
    #5
    Hi Judy, This is my first time here so bear with me....I also had a mastectomy this past December and was told no follow up was needed other than five years of Tomoxifen. I have been very afraid to take it as I still have my uterus and ovaries. When I approach my surgeon (breast specialist) with questions about the risks he is very upset that I would question his treatment. I just do not want to trade one cancer for another. My gyn doctor seemed to be against my taking tomoxifen at first due to the fact I have lupus and other problems....however, after this surgeon spoke to her she changed her mind. I kind of feel he may have intimidated her...I dunno? It is scary...Did your doctor tell you why there was a higher risk of developing cancer in your other breast if your lymph nodes had been clear?
  • cruf
    cruf Member Posts: 908
    #6
    deecaf1 said:

    Hi Judy, This is my first time here so bear with me....I also had a mastectomy this past December and was told no follow up was needed other than five years of Tomoxifen. I have been very afraid to take it as I still have my uterus and ovaries. When I approach my surgeon (breast specialist) with questions about the risks he is very upset that I would question his treatment. I just do not want to trade one cancer for another. My gyn doctor seemed to be against my taking tomoxifen at first due to the fact I have lupus and other problems....however, after this surgeon spoke to her she changed her mind. I kind of feel he may have intimidated her...I dunno? It is scary...Did your doctor tell you why there was a higher risk of developing cancer in your other breast if your lymph nodes had been clear?

    Hi, I'm Cathy. I too had DCIS with mastectomy and reconstruction. I have been taking Tamoxifin since Oct. I'm going to my GYN next week for my 1st check since Tamox. She felt the risks of uterine cancer are far less than breast cancer. She says with regular internal ultrasounds, any change in uterous can be picked up early and tamox. stopped till uterus returns to normal. Evedentally, breast cancer is a much greater risk than uterine Ca. You do what's best for you. Good luck.
  • tcbangels
    tcbangels Member Posts: 111
    #7
    Hello Judy: It sounds like what I went through I'm 6yrs cancer -free but I'm new to internet I just bought a computer I wish I would of had this when I got sick, it makes me feel good to be able to talk to people that went through what I did.I'll tell you this much a lot of people talk about the tamoxifen ,when I took it was when it was just on the clinical trial,I didn't feel it was bad but a lot do,I broke out with a rash & my legs would itch a lot. The problemn I had was the weight gain I gain 75lbs in a year.My Doctor said it effects people different & the weight gain is the percentage that is low very likely to do but it was not one of the bad side affects, wwell to me it was all that weight I was carry.I went off tamoxifen in Oct-2000 & I have lost a lot of weight I lost 60lbs since than.I will tell you this as long as I was on it for the 5yrs I never grew hair on my legs since I'm off I got to rememberr to shave my legs now a little joke ha!ha!,the other problemn about your daughter I understand that to mine is 31 yrs old.When I develope it she was just 25yrs old she has a fibroid mass in her breast & they say its nothing to worry about but I do because they won't do a mammogram on her every year because of her age.Good-Luck & may God be with you
    cheryl

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