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Should I take tamoxifen?
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08-07-2007, 07:34 AM
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HysterSister
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Posts: 16
Hysterectomy: February 6th, 2007
Surgery Type: TAH
Ovaries: Removed both
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Should I take tamoxifen?
Diagnosed w/DCIS in 4/07. Had lumpectomy, SNB in May. No spread, clear margins. Finished external rads 7/07. Am 62 yrs. old. Hysterectomy/ovaries removed in 2/07 for endometrial cancer (1, 1b) No rads needed. Path from brst surgery shows moderate to hi grade tumor w/comedo necrosis. Oncologist recommends I take tamoxifen for 5 yrs. Am concerned about side effects altho uterine cancer is not one in my case. Is there a way I can find out my risk for recurrence/invasive cancer by taking tamox vs. not taking tamox. Tried using the tool in the NIH site, but women who have had DCIS can't use it. Thank you for any info you may have.
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08-08-2007, 03:28 AM
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Posts: 30,771
Hysterectomy: February 4th, 2002
Surgery Type: TVH
Ovaries: Removed both
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Should I take tamoxifen?
Hi joaniemac It's a little bit complicated, because you have to weigh the possible reduction in recurrence risk (which is imho relatively small) versus the potential side effects, which vary with the individual.
This article has some great information on the relative risk reduction for recurrence, both local and contralateral, in women who have had DCIS and taken or not taken Tamoxifen:
http://www.dcis.info/understanding_risk.html
While the %risk reduction appears significant, when they look at what the risks actually are, it's a difference between two relatively small numbers.
Also, sometimes it's hard to tell what's a recurrence and what is just growth of something that was there in the first place and just to small to see and missed during surgery.
The side effects of Tamoxifen can vary anywhere between none to severe. I fell on the severe side and could not tolerate Tamoxifen; there are other ladies who post here who have done fine on it. If you're not sure, you could always try it and see how you do - I think you'd know fairly quickly. I felt great the first 3 days and then started going downhill; by one week I couldn't walk unassisted and was in constant severe pain, and my DR told me to stop taking it immediately.
Since you've had a hysterectomy and ovary removal, you also have the option of taking Arimidex or other aromatase inhibitor instead of the Tamoxifen. Arimidex actually has a slightly better risk reduction rate, though again, nothing will reduce it to (or even close to) zero. And you already did the best thing you can do to reduce your risk - the radiation. Besides, if side effects are the concern, some of the side effects with Arimidex are the same if not stronger than on Tamoxifen, even though the two meds work differently. I don't take either drug, but I do take diindolylmethane (DIM), an OTC natural aromatase inhibitor; I am also on bio-identical HRTs.
Have you considered consulting a second oncologist for another opinion on whether or not you should be taking Tamoxifen (or Arimidex)?
Good luck with your decision, and remember, you can always change your mind.
s,
-Linda
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08-08-2007, 06:05 AM
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HysterSister
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Posts: 16
Hysterectomy: February 6th, 2007
Surgery Type: TAH
Ovaries: Removed both
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Should I take tamoxifen?
Thank u for yr input. Gave me a lot 2 think about. Onc. told me in spite of what I may read on internet, arimidex is only 4 women with invasive cancer, not apprvd by FDA for DCIS. I'm concerned about recurrence, new cancer since my path rept showed hi grade DCIS, ER,PR+. Maybe I'll call onc for more input. Yr. link was very helpful. Thank you.
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08-08-2007, 11:16 AM
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HysterSister
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Posts: 683
Hysterectomy: March 1st, 1990
Surgery Type: TAH/SAH
Ovaries: Removed both
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Should I take tamoxifen?
Hi Joanie, we are similar in diagnosis and treatment. I was 55 in November '02 when diagnosed with DCIS / stage 0, cribriform -- not comedo type, no necrosis. Lumpectomy with clean margins, rads, and tamoxifen. I have had very little side effects from the tamoxifen. Almost not noticeable. Only five months of the five years remaining. Really, had a very easy time with all treatments. The worst of it all was the "cancerhead". That took about two years to get over. I am fine now!
Mary D.
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08-08-2007, 07:47 PM
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Guest
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Posts: 89
Hysterectomy: April 24th, 2007
Surgery Type: TAH
Ovaries: Removed both
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Should I take tamoxifen?
HI, I had BC in 2003, ER/PR+, I asked for Arimidex rather than Tamoxifen. I have been on it for 4 years. I was diagnosed with UC in April. I thought that since I had a TAH that maybe I could stop Arimidex. My BC/onc told me to stay on it as estrogen is produced in other areas of the body, ie. adrenal gland and 'fat'. With my family history of 3rd generation BC survivor I want to do all I can to keep the best away. My side effets have been achy joints and trigger finger.
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08-10-2007, 09:36 PM
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Guest
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Posts: 242
Hysterectomy: August 1st, 2007
Surgery Type: TAH
Ovaries: Removed both
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Should I take tamoxifen?
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Quote: |
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Originally Posted by joaniemac
Diagnosed w/DCIS in 4/07. Had lumpectomy, SNB in May. No spread, clear margins. Finished external rads 7/07. Am 62 yrs. old. Hysterectomy/ovaries removed in 2/07 for endometrial cancer (1, 1b) No rads needed. Path from brst surgery shows moderate to hi grade tumor w/comedo necrosis. Oncologist recommends I take tamoxifen for 5 yrs. Am concerned about side effects altho uterine cancer is not one in my case. Is there a way I can find out my risk for recurrence/invasive cancer by taking tamox vs. not taking tamox. Tried using the tool in the NIH site, but women who have had DCIS can't use it. Thank you for any info you may have.
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I agree with the ladies here. Inquire about Arimidex, being that you are post-menopausal. Femara is also an option. It's working well for me.
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08-11-2007, 07:05 AM
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HysterSister
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Posts: 16
Hysterectomy: February 6th, 2007
Surgery Type: TAH
Ovaries: Removed both
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Should I take tamoxifen?
Hi Molly,
Thanks for your post but as to Arimidex or other AI's, onc told me they are for women w/invasive cancer, not FDA approved for DCIS. Since I originally posted here, I've read at breastcancer.org & at the Johns Hopkins Breast Center site that women w/history of endo cancer (me) should not take tamoxifen. The question is, who's right? I guess ultimately we have to make our own decisions based on what we feel is right for us, the "risk vs. reward" factor.
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08-11-2007, 07:22 AM
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Guest
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Posts: 242
Hysterectomy: August 1st, 2007
Surgery Type: TAH
Ovaries: Removed both
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Should I take tamoxifen?
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Quote: |
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Originally Posted by joaniemac
Hi Molly,
Thanks for your post but as to Arimidex or other AI's, onc told me they are for women w/invasive cancer, not FDA approved for DCIS. Since I originally posted here, I've read at breastcancer.org & at the Johns Hopkins Breast Center site that women w/history of endo cancer (me) should not take tamoxifen. The question is, who's right? I guess ultimately we have to make our own decisions based on what we feel is right for us, the "risk vs. reward" factor.
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Interesting. I worked for the Johns Hopkins Breast Center for 3 years, only leaving this past May, and I'm fortunate enough to know Marissa Weiss, creater of breastcancer.org and Living Beyond Breast Cancer. What a small world. I'm glad you're using these resources, especially breastcancer.org. It's a fantastic site!
Anywho, endo cancer IS a risk of Tamoxifen, so it would make sense that you aren't able to take it. How about Femara (letrozole), which works a little differently than the standard aromatase inhibitors? I'd love to hear what your doctor says. Please keep me posted.
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09-12-2007, 02:43 AM
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Guest
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Posts: 57
Hysterectomy: August 24th, 2007
Surgery Type: TAH/SAH
Ovaries: Removed both
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Should I take tamoxifen?
My doctors told me that Tamoxifen is only for pre-menopausal women. Since you are 60, I'm assuming you are past menopause, so Tamoxifen probably won't be something they give you.
Plus, I found out that the cancer drugs that they give to post-menopausal women are better than Tomoxifen. That was one of the reasons that I decided to get a full hysterectomy so that I could go on the stronger cancer drug after my chemo.
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09-12-2007, 11:55 AM
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Guest
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Posts: 242
Hysterectomy: August 1st, 2007
Surgery Type: TAH
Ovaries: Removed both
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Should I take tamoxifen?
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Quote: |
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Originally Posted by texpa
My doctors told me that Tamoxifen is only for pre-menopausal women. Since you are 60, I'm assuming you are past menopause, so Tamoxifen probably won't be something they give you.
Plus, I found out that the cancer drugs that they give to post-menopausal women are better than Tomoxifen. That was one of the reasons that I decided to get a full hysterectomy so that I could go on the stronger cancer drug after my chemo.
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Tamoxifen is sometimes used in post-menopausal women as well, but the side effects from Arimidex or Femara are easier to handle. Tamoxifen was a nightmare for me.
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