I was told by my oncologist that I needed to be on tamoxifen for 5 years. I started 2/20/2008. I have had minimal side effects and only one sort-of period since then. I have seen my onc once since then and she drew blood and said to make sure I get a clinical BE every 3 mos (alternating gyno, breast surgeon and onc) and alternating mammo and MRI every 6 months. I was never told and it isn't on any of my path reports that I was ER+, however my onc said "LCIS almost always is" after also not finding it on my path report. So how do I know if the tamoxifen is working for me? Are there tests? I am extremely high risk with a strong family history and the LCIS diagnosis. My gyno recommended PBM's. I know nobody has a crystal ball, but how are they so certain tamoxifen protects you? Because the drug companies say so? And I don't understand why my path report included no hormone status or any other information. I'm very confused. I want to be proactive, and I am not sure the tamox is enough...
Thanks for letting me rant.
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jpann39 Joined: Dec 2006 Posts: 2513 |
May 14, 2008 11:33 am
jpann39 wrote:
Kimber my path shows that Im 95% er positive and 55% pr+ so mine was very clear in that regard... I to wonder how we will know if the tamox is working or not and have asked exactly that question to my onco and primary doctors....they both said there is a test they can have ran to see if my body metabolizes the tamox.....neither of them really knew to much about the test but are looking into it for me...I have another appt with my primary doc in July and she plans to run the test. My fear really climbed when I heard that not all woman metabolize tamox....I have what they call pernicious anemia(basically my stomach no longer obsorbs b-12) and have to take high dosages of it to keep it at a normal level....so it concerns me that I might not be obsorbing the tamox so in turn not getting any benefit from taking it. Ive also seen lots of ladies here talking about this test but Im not sure what it is called. It will be interesting to see how this comes out and what information I will get from it...although it is a little scarey too. 'Life may not be the party we hoped for...but while we're here we might as well dance!!!!"
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Member_of_t… Joined: Sep 2004 Posts: 4417 |
May 14, 2008 01:48 pm
Member_of_the_Club wrote:
Kimber, it sounds like you are taking tamoxifen to prevent a possible new cancer because of your very high risk. LCIS is technically precancer, not cancer (I know there is a lot of debate about whether DCIS is cancer, but my understanding is that LCIS is different and considered to be not cancer.) Tamoxifen does have a long record of helping prevent new tumors. Its not a guarantee, of course, which is why it is a good idea for you to do all the other screenings that were recommended. Dx 9/30/2004, IDC, 3cm, Stage IIb, Grade 2, 1/17 nodes, ER+/PR+, HER2- |
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Nico1012 Joined: Apr 2008 Posts: 145 |
May 14, 2008 05:09 pm
Nico1012 wrote:
Kimber, The test is called CYP2D6 genotype and it determines whether or not you are metabolizing the Tomoxifen. If you enter this in the search box you will find a good description of the test here at breastcancer.org. Nico |
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Coltsneck Joined: May 2006 Posts: 244 |
May 20, 2008 09:42 pm
Coltsneck wrote:
The tamoxifen is working - i.e., doing its job to suppress estrogen; however, that does not mean for certain that it will prevent a recurrence. That's why our doctors never tell us we are 'cured'. The will say, "there's no evidence of disease", meaning it could be there but they can't see it and diagnostic tests are not revealing it. |
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