Caught between two valid different view points on tamoxifen

cinnamonsmile
cinnamonsmile Member Posts: 1,187 Member
edited March 2014 in Breast Cancer #1
I recently had a double mastectomy with SNB. i had DCIS. path report comes back, of course, cancer is clear. as a side note, i was on hormones for abnormal periods with pain, blood clots,severe fatigue,etc. oncologist reccomends ovary removal. the oncologist said that there is no need for tamoxifen since all my milk ducts have been removed (makes sense). my surgeon says that i should take tamoxifen just in case there is a cell or two or three, etc, floating around after surgery. i really didtn believe this until i found two cases of women with dcis mastectomy who had reoccurrence in the remaining breast tissue. i am at a quandry, and a lady i have been talking to suggested i see a obgyn oncologist. has anyone else been in this situation? it seems rare that dcis would come back with no milk ducts left, but do i want to take the chance ( i have very bad luck in medical matters).i realize that stats on reoccurence with or without tamoxifen, the oncologist was very thurough (sp?)i sit here and wonder are the possible side effect worth the little help it might give? thanks ladies and any men out there in advance for any insight from your situations.

Comments

  • dbhadra
    dbhadra Member Posts: 344 Member
    #2
    different views
    I'm not yet at that decision point (still another six months to go with chemo/recovery) but am also wondering. Most likely I would have a double and then ovaries also removed...I know there would be still SOME estrogen floating around but....how much? Any other thoughts?
  • Ann2800103
    Ann2800103 Member Posts: 31
    #3
    A very big supporter of Tamoxifen
    I was diagnosed in 1998 with left breast cancer lob and ductal. It was in the entire left breast in each quandrant. I had double both removed. Did chemo and Rad. I went on Tamoxifen...every year for 11 years I was clean. I was fearful to go off tamoxifen so my onc humored me and I was on the drug for 10 years.
    I guess I got a little brave and wanted to lose the weight and told my doc I wanted to go off the drug. One year later I had mets to Hip and femur bone. They replaced both.
    I am now on Femara and Lupron which again seems to be working. bones clean as of 4 months ago.
    I still wonder...about going off Tamoxifen. I think its a great drug.

    Blessings to you
    Annie
  • KathiM
    KathiM Member Posts: 8,028 Member
    #4
    One question...did you have the oophorectomy?
    The ovaries are the largest producers of estrogen. There are other places, as well, but they are the biggest...I had mine removed as part of my gastric surgery for the rectal cancer.

    I think it's more a matter of decision whether to take Tami or not as to the type of breast cancer you had, not so much if you have milk ducts remaining...judging by what your surgeon said, it sounds like it was ER positive. But, you need to ask your oncologist again...he/she says something different. Breast cancer can, sadly, reoccur in places other than the breast...and Tamoxifen, or one of the AI's like Arimidex, reduces the risk of that happening.

    I chose Tami for a number of reasons, even though I had my pick. I have osteoporosis and relatively high cholesterol. Both of these can be made worse by the AI's. I don't have a uterus (read above), so one of the biggest threats of Tami, uterine cancer, is not a worry for me....

    Tami, research has shown, does this wierd thing at 5 years, though. It can actually INcrease the chance of reoccurance at that point. So, at 5 years (July, 2011, for me), one needs to either switch to another, or stop taking anything. My plan now is to go 'without a net'. I don't like the list of sides (read above) that I would need to add MORE drugs to combat, just for 1%. Also, I am VERY careful about eating soy...there is a natural estrogen hiding in some of these foods, as well.

    I may somewhere down the road regret that decision, but that is mine to make...just like this is yours to make now...

    Dutch hugs, Kathi
  • charlottemrx
    charlottemrx Member Posts: 2
    #5
    Ann2800103 said:

    A very big supporter of Tamoxifen
    I was diagnosed in 1998 with left breast cancer lob and ductal. It was in the entire left breast in each quandrant. I had double both removed. Did chemo and Rad. I went on Tamoxifen...every year for 11 years I was clean. I was fearful to go off tamoxifen so my onc humored me and I was on the drug for 10 years.
    I guess I got a little brave and wanted to lose the weight and told my doc I wanted to go off the drug. One year later I had mets to Hip and femur bone. They replaced both.
    I am now on Femara and Lupron which again seems to be working. bones clean as of 4 months ago.
    I still wonder...about going off Tamoxifen. I think its a great drug.

    Blessings to you
    Annie

    Tamoxifen
    Hi Ann i am new year see you are a good supporter of Tamox.Well my modified Radical Mastectomy was done April 2009,finish Chemo,Rads and is on Tamox for 5years,only 9 months i am taking this tablet,i know Tamox is the best but oh my with alot of side effects.This leg cramps is terrible and all my teeth are loose and full of infection,first we thought it was late side effects but oncon doc.say no it can be from Tamox but i am next week set for operation to pull all the teeth out.It is wonderful to hear that you have been on Tamox for 11years did you not experiance any side effects.So sorry that it recur.My oncon did said that Tamox help only for 5 years,after that it is still in your system for a long time.Then Femara is next.I am Est,and Prog positive and Her2 Neg.Was stage11 IDC.
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #6
    lumpectomy and 8 wks radiation and now taxmoxifen 18mths
    someone just asked me yesterday why I take tamoxifen if side effects and if i knew how much it really help reoccurance.

    I do not have many side effects as of yet-other then leg cramps, can't sleep & thickening of uterus.

    just this week I started bleeding after almost 4 yrs of not (menopuase) I am waiting for test results (I am not worried since i just had ultra sound followed by D & C 5 wks ago and 6 mths ago and all ok) so I am thinking it has to be side effect!

    I have read about onocolgoist gyno but not sure if any in my area-never checked into it yet. My oncolo & GYN do speak on the phone...

    So I never thought NO I am not taking tamoxifen...i was told that risks outweigh the good! I know many who have taken and did ok!

Discussion Boards