Reminder! Get a baseline ultrasound of uterus if you are taking Tamoxifen, Armidex, Anastrozole, or
Lots of Hugs,
Janelle
Comments
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According to my oncologist,
According to my oncologist, uterine ultrasounds or biopsies are not a protocol for postmenopausal use of aromatase inhibitors. They are a very different class of drugs from Tamoxifen. I took 5 years of Tamoxifen almost 20 years ago during which time I had an annal uterine biopsy due to the increased risk of uterine/cervical cancer. I will be starting Abastrozole (generic for Arimidex) next week. The primary concern of aromatase inhibitors is osteoporosis and other joint/bone issues so she is monitoring me closely for those but not for any uterine issues.0 -
Side Effect of Tamoxifen ...
Tamoxifen is well known for the side effect of a thickening endometrium (lining). I was on Tamoxifen for 4 years until a recurrence. A ct scan showed that I had a thickening of the lining 6 months after I started the drug. Three years into Tamo, I had did have a bleeding polyp which was removed and a endometrium biopsy which was negative.
After going off Tamoxifen, I went on Arimidex and 6 weeks into the drug I had a bleeding episode. For over 21 months, I went back and forth between my oncologist and my gynecologist with more endometrium biopsies than I care to count which all were negative.
After a very bad bleeding episode, I finally found a gynecologist that could help me. I did have a vaginal ultra sound that showed the lining to be in cm not mm. By this time I had endometrial hyperplasia and a D&C took care of the problem. My uterus was filled with polyps. The doctor told me it was Tamoxifen's last calling card. I was glad to have found this new gynecologist and I also found a new oncologist.
I have never heard that aromatase inhibitors causing this problem. I used this sort of drug from 1999 until this past March, not exclusively but pretty close.
I would recommend anyone on Tamoxifen to be aware to this side effect also and have an occasional ultra-sound. An ounce of precaution!
Hope all will be well with you, Janelle,
Doris0 -
Janelle, I completely agree that it's extremely important to talk with your gynecologist when starting Tamoxifen about the risks and side effects, and to get regular gynecological checkups. IMO, I don't think our oncologists are as knowledgeable as gynecologists about these issues.SIROD said:Side Effect of Tamoxifen ...
Tamoxifen is well known for the side effect of a thickening endometrium (lining). I was on Tamoxifen for 4 years until a recurrence. A ct scan showed that I had a thickening of the lining 6 months after I started the drug. Three years into Tamo, I had did have a bleeding polyp which was removed and a endometrium biopsy which was negative.
After going off Tamoxifen, I went on Arimidex and 6 weeks into the drug I had a bleeding episode. For over 21 months, I went back and forth between my oncologist and my gynecologist with more endometrium biopsies than I care to count which all were negative.
After a very bad bleeding episode, I finally found a gynecologist that could help me. I did have a vaginal ultra sound that showed the lining to be in cm not mm. By this time I had endometrial hyperplasia and a D&C took care of the problem. My uterus was filled with polyps. The doctor told me it was Tamoxifen's last calling card. I was glad to have found this new gynecologist and I also found a new oncologist.
I have never heard that aromatase inhibitors causing this problem. I used this sort of drug from 1999 until this past March, not exclusively but pretty close.
I would recommend anyone on Tamoxifen to be aware to this side effect also and have an occasional ultra-sound. An ounce of precaution!
Hope all will be well with you, Janelle,
Doris
However, I had a very long talk with my gynecologist when I started Tamoxifen, and she doesn't believe baseline uterine ultrasounds are necessary for most women. In my case, because my periods are so normal and regular (and Tamoxifen hasn't changed that), she feels I would easily notice any problems or changes.
I'm under strict orders to call her immediately if I ever have any spotting between periods, much heavier periods, or any unexplained pain or bloating -- but otherwise, she feels my annual pelvic exam and pap are enough for me.
Of course, all of our bodies and situations are different -- and each of us has a different attitude toward/tolerance for more tests, more scans, and the anxiety that comes with them. I think we each have to talk with our gynecologists about our own situations.
Traci0 -
Femara
I can only say what I have been told by my Chemo Dr and it is backed up by my PA. I've been on Femara/letrozole for 2 1/2 yrs and have been told that all I need to do is anual PAPs (and mammo). I do not have a GYN - my PA is my only 'Dr' and has been for 16 yrs except for a few times when she sent me to a 'specialist' when needed. Actually other than having 2 C-sections I have never had any GYN issues - menopause was easy for me, no hot flashes/ nothing, never did HRT. The only thing I was warned about and being checked for is osteoporosis. I was already osteopenia when IBC
DX and now it has progressed on so on Fosamax. That may or may not have anything to do with the Femara as I have a huge family HX of osteoporosis and I was 44 when I went through natural menopause (18 yrs before IBC DX). I've also been told I will be on Femara/letrozole forever - not 5 yrs.
I have only been on Femara/letrozole as it was the first choice of my Chemo Dr so have never talked to my Drs about the other ones.
Winyan - The Power Within
Susan0 -
Hi Susan,Rague said:Femara
I can only say what I have been told by my Chemo Dr and it is backed up by my PA. I've been on Femara/letrozole for 2 1/2 yrs and have been told that all I need to do is anual PAPs (and mammo). I do not have a GYN - my PA is my only 'Dr' and has been for 16 yrs except for a few times when she sent me to a 'specialist' when needed. Actually other than having 2 C-sections I have never had any GYN issues - menopause was easy for me, no hot flashes/ nothing, never did HRT. The only thing I was warned about and being checked for is osteoporosis. I was already osteopenia when IBC
DX and now it has progressed on so on Fosamax. That may or may not have anything to do with the Femara as I have a huge family HX of osteoporosis and I was 44 when I went through natural menopause (18 yrs before IBC DX). I've also been told I will be on Femara/letrozole forever - not 5 yrs.
I have only been on Femara/letrozole as it was the first choice of my Chemo Dr so have never talked to my Drs about the other ones.
Winyan - The Power Within
Susan
Don't mean to
Hi Susan,
Don't mean to hijack this thread by getting too far off topic but since we have so much in common from a cancer standpoint, I wanted to share what my onc told me about aromatase inhibitors vs osteoporosis. She is putting me on anastrozole (generic for Arimidex). I asked her why that particular one and if there were any significant differences between different ones. She said she generally starts with anastrozole because it has been on the market the longest, meaning that there is the most clinical data available about effectiveness and side effects. It also means that is cheaper for patients who don't have drug insurance coverage or have high co-pays. But she says there is actually very little difference between aromatase inhibitors from a chemical standpoint.
I also have IBC and had osteopenia before my cancer DX and I also will probably need to be on an aromatase inhibitor indefinitely. My onc is monitoring with annual bone density scans (something I was already having done anyway)but at this point she isn't putting me on any bisphosphonate like Fosamax because of the GI side effects. She also referred me to an orthopedist (my appointment with him is on Monday) to evaluate a knee problem (whether it is age related osteo arthritis or something else). We might decide to go more of a physical rehab route rather than adding another long term drug with potential side effects to manage the osteopenia and joint/bone pain that anastrozole can cause and see how that does before going the bisphosphonate route.0 -
Dr T. told me his firstNancyJac said:Hi Susan,
Don't mean to
Hi Susan,
Don't mean to hijack this thread by getting too far off topic but since we have so much in common from a cancer standpoint, I wanted to share what my onc told me about aromatase inhibitors vs osteoporosis. She is putting me on anastrozole (generic for Arimidex). I asked her why that particular one and if there were any significant differences between different ones. She said she generally starts with anastrozole because it has been on the market the longest, meaning that there is the most clinical data available about effectiveness and side effects. It also means that is cheaper for patients who don't have drug insurance coverage or have high co-pays. But she says there is actually very little difference between aromatase inhibitors from a chemical standpoint.
I also have IBC and had osteopenia before my cancer DX and I also will probably need to be on an aromatase inhibitor indefinitely. My onc is monitoring with annual bone density scans (something I was already having done anyway)but at this point she isn't putting me on any bisphosphonate like Fosamax because of the GI side effects. She also referred me to an orthopedist (my appointment with him is on Monday) to evaluate a knee problem (whether it is age related osteo arthritis or something else). We might decide to go more of a physical rehab route rather than adding another long term drug with potential side effects to manage the osteopenia and joint/bone pain that anastrozole can cause and see how that does before going the bisphosphonate route.
Dr T. told me his first choice for me was Femara if VA had it - they did. (For me cost was not an issues.) At that time, Femara was not available in generic so I started on it. It became available generic in June 2011 so have been on letrozole since then.
I have seen some saying since Femara went generic they have issues with some manufacturers but I can't see any difference in the original and generic I have. No SE's with either.0 -
Thanks for that info, SusanRague said:Dr T. told me his first
Dr T. told me his first choice for me was Femara if VA had it - they did. (For me cost was not an issues.) At that time, Femara was not available in generic so I started on it. It became available generic in June 2011 so have been on letrozole since then.
I have seen some saying since Femara went generic they have issues with some manufacturers but I can't see any difference in the original and generic I have. No SE's with either.
I am a bit apprehensive about going on an aromatase inhibitor and I don't know why. Seems like after chemo, surgery, and radiation, taking a tiny pill once a day shouldn't be a big deal.0 -
My personal biasNancyJac said:Thanks for that info, Susan
I am a bit apprehensive about going on an aromatase inhibitor and I don't know why. Seems like after chemo, surgery, and radiation, taking a tiny pill once a day shouldn't be a big deal.
Endometrial cancer is a known side effect of Tamoxifen. And, it isn't always the "garden variety" type - it can be UPSC which is very aggressive.
Like breast cancer, endometrial cancer can be successfully treated (they even use the word "cured" in the endometrial cancer world) by surgery alone IF it is confined to the endometrium, has not penetrated the myometrium more than 50%, lymph nodes and pelvic wash are clear. After that, you really don't want to mess with it. It is usually caught early because symptoms are usually present in early stage. Usually.
And - regardless of breast cancer hormone therapies - many of the risk factors for endometrial cancer are the same as breast cancer. My gynecologic oncologist told me it is not unusual for a woman to experience both breast and endometrial cancers over the course of her lifetime.
My endometrial cancer was merrily growing in a polyp. It had grown into the myometrium 1/3 of the way (whew, that's under 1/2). I had no symptoms. I was very lucky because a routine Pap smear picked up some normal endometrial cells which is simply not normal for postmenopausal women. That was very fortuitous for me. I had not yet been diagnosed with breast cancer (that was 4 days later) so I was absolutely not on either an aromotase inhibitor or Tamoxifen.
Personally, I'd push for that baseline ultrasound. And no matter what, go for your routine gyn exams, but don't count on a Pap smear screening or pelvic exam to pick up endo cancer. An ultrasound will show endometrial thickening, but only a biopsy or D & C can confirm the presence of cancer..
Suzanne0 -
Had a total hysterectomyDouble Whammy said:My personal bias
Endometrial cancer is a known side effect of Tamoxifen. And, it isn't always the "garden variety" type - it can be UPSC which is very aggressive.
Like breast cancer, endometrial cancer can be successfully treated (they even use the word "cured" in the endometrial cancer world) by surgery alone IF it is confined to the endometrium, has not penetrated the myometrium more than 50%, lymph nodes and pelvic wash are clear. After that, you really don't want to mess with it. It is usually caught early because symptoms are usually present in early stage. Usually.
And - regardless of breast cancer hormone therapies - many of the risk factors for endometrial cancer are the same as breast cancer. My gynecologic oncologist told me it is not unusual for a woman to experience both breast and endometrial cancers over the course of her lifetime.
My endometrial cancer was merrily growing in a polyp. It had grown into the myometrium 1/3 of the way (whew, that's under 1/2). I had no symptoms. I was very lucky because a routine Pap smear picked up some normal endometrial cells which is simply not normal for postmenopausal women. That was very fortuitous for me. I had not yet been diagnosed with breast cancer (that was 4 days later) so I was absolutely not on either an aromotase inhibitor or Tamoxifen.
Personally, I'd push for that baseline ultrasound. And no matter what, go for your routine gyn exams, but don't count on a Pap smear screening or pelvic exam to pick up endo cancer. An ultrasound will show endometrial thickening, but only a biopsy or D & C can confirm the presence of cancer..
Suzanne
because after 2 1/2 years of Tamoxifen (which a do believe was the culprit), and after 4 years of no periods, I had a massive bleed out of the blue. Sure enough, my lining had thickened and I had signs of dysplasia after I had a D&C.
I just didn't want to chance it so I opted to have a total hysterectomy. I was so ticked I told them to remove my appendix as well!
My oncologist never mentioned anything about monitoring me. I think if stats start indicating it happening more and more, than they should monitor it. But I think a red flag would be something unusual or out of the ordinary...see your doctor ASAP.0 -
For TraciinLATraciInLA said:Janelle, I completely agree that it's extremely important to talk with your gynecologist when starting Tamoxifen about the risks and side effects, and to get regular gynecological checkups. IMO, I don't think our oncologists are as knowledgeable as gynecologists about these issues.
However, I had a very long talk with my gynecologist when I started Tamoxifen, and she doesn't believe baseline uterine ultrasounds are necessary for most women. In my case, because my periods are so normal and regular (and Tamoxifen hasn't changed that), she feels I would easily notice any problems or changes.
I'm under strict orders to call her immediately if I ever have any spotting between periods, much heavier periods, or any unexplained pain or bloating -- but otherwise, she feels my annual pelvic exam and pap are enough for me.
Of course, all of our bodies and situations are different -- and each of us has a different attitude toward/tolerance for more tests, more scans, and the anxiety that comes with them. I think we each have to talk with our gynecologists about our own situations.
Traci
Hi Traci,
I believe the ultra sound business is meant for post menopausal women. Your still pre and in your case and those women who are in that category I believe your oncologist is correct. You don't need any other test unless something unusual happens which you already where advise.
I had several FSH test to see where I was and it continued to show I was post menopausal. When women are in doubt a simple blood test will show where they are.
Best,
Doris0 -
For SuzanneDouble Whammy said:My personal bias
Endometrial cancer is a known side effect of Tamoxifen. And, it isn't always the "garden variety" type - it can be UPSC which is very aggressive.
Like breast cancer, endometrial cancer can be successfully treated (they even use the word "cured" in the endometrial cancer world) by surgery alone IF it is confined to the endometrium, has not penetrated the myometrium more than 50%, lymph nodes and pelvic wash are clear. After that, you really don't want to mess with it. It is usually caught early because symptoms are usually present in early stage. Usually.
And - regardless of breast cancer hormone therapies - many of the risk factors for endometrial cancer are the same as breast cancer. My gynecologic oncologist told me it is not unusual for a woman to experience both breast and endometrial cancers over the course of her lifetime.
My endometrial cancer was merrily growing in a polyp. It had grown into the myometrium 1/3 of the way (whew, that's under 1/2). I had no symptoms. I was very lucky because a routine Pap smear picked up some normal endometrial cells which is simply not normal for postmenopausal women. That was very fortuitous for me. I had not yet been diagnosed with breast cancer (that was 4 days later) so I was absolutely not on either an aromotase inhibitor or Tamoxifen.
Personally, I'd push for that baseline ultrasound. And no matter what, go for your routine gyn exams, but don't count on a Pap smear screening or pelvic exam to pick up endo cancer. An ultrasound will show endometrial thickening, but only a biopsy or D & C can confirm the presence of cancer..
Suzanne
Hi Suzanne,
You were lucky to have a pap smear pick up abnormal endometrial cells. I had so many endometrial biopsies that were negative.
It was a ct scan that picked up 6 months into Tamoxifen that I had a thickening in the uterus. I was having abdominal pain and the ct scan was ordered. The pain was from a torn hernia mesh. My gynecologist knew but had no real interest in any of it. The ct scan was in 1995 and the D&C was in 2001. A long time which could have had terrible results for me had my cells not been slow growing.
I was happy for a D&C that for me worked. At the time, I had enough of tests, procedures and knowing that I had rib lesions. Arimidex took care of quieting things down. My gynecologist was also on obstetrician. I loved him as he delivered both my babies. He was not a good gynecologist after seeing the vaginal ultra sound showing how thick my lining was, I never so my original gynecologist. I was so happy to find the gynecologist who had an interest in the drugs used with breast cancer. He didn't know much about Arimidex at my first appointment with him. He did his homework and knew all about it by my second appointment. It was a new drug at the time with not a lot of data.
I also knew that endometrial cancer was often part of breast cancer. On the breast cancer forum I posted to at the time, several women did have endometrial cancer along with their bc diagnose.
All menopausal and post menopausal women should have a gynecologist who knows something about the drugs used with breast cancer.
Best,
Doris0 -
Janelle,
Great advice, I think. I wish I had known to have this done. All of my Drs are only connected by me - I have to request at every visit that reports get forwarded on to the next guy. And, therefore, I believe that they just look at their specific field.
I will ask for an ultrasound at my next GYN visit, since I will have been on Arimidex (or generic) for over two years by then and am post-menopausal.
Thank you! for sharing. An ounce of prevention....
Sue0 -
Dorissbmly53 said:Janelle,
Great advice, I think. I wish I had known to have this done. All of my Drs are only connected by me - I have to request at every visit that reports get forwarded on to the next guy. And, therefore, I believe that they just look at their specific field.
I will ask for an ultrasound at my next GYN visit, since I will have been on Arimidex (or generic) for over two years by then and am post-menopausal.
Thank you! for sharing. An ounce of prevention....
Sue
Did you also have endo cancer? There are quite a few women on the uterine cancer board and on Hystersisters board who had breast cancer. It is truly concerning (at least to me).
Indeed I was very lucky. Both my endometrial and breast cancers were picked up on routine well woman exams (pap and mammogram). I never had a symptom of either. And this is why I'm such a zealot about these inconvenient things we do as women
My pap was about a year overdue and I'd been procrastinating about getting that doggone mammogram scheduled too.0 -
Thanks Janelle for your goodsea60 said:Had a total hysterectomy
because after 2 1/2 years of Tamoxifen (which a do believe was the culprit), and after 4 years of no periods, I had a massive bleed out of the blue. Sure enough, my lining had thickened and I had signs of dysplasia after I had a D&C.
I just didn't want to chance it so I opted to have a total hysterectomy. I was so ticked I told them to remove my appendix as well!
My oncologist never mentioned anything about monitoring me. I think if stats start indicating it happening more and more, than they should monitor it. But I think a red flag would be something unusual or out of the ordinary...see your doctor ASAP.
Thanks Janelle for your good advice!0 -
Thanks Janelle.Rague said:Dr T. told me his first
Dr T. told me his first choice for me was Femara if VA had it - they did. (For me cost was not an issues.) At that time, Femara was not available in generic so I started on it. It became available generic in June 2011 so have been on letrozole since then.
I have seen some saying since Femara went generic they have issues with some manufacturers but I can't see any difference in the original and generic I have. No SE's with either.
Thanks Janelle.0 -
I started differnt post on
I started differnt post on this...MY gyno which I have had for 20 yrs...said he does not do them "rule of thumb" if taking tamoxifen. MY Oncologist instisted. (@ 3-6 mths followefd by D & C) I ended up havint total hysterctomy a year ago (3 yr into tamoxifen) and happy my onologist insisted!
Denise0 -
Thanks!sbmly53 said:Janelle,
Great advice, I think. I wish I had known to have this done. All of my Drs are only connected by me - I have to request at every visit that reports get forwarded on to the next guy. And, therefore, I believe that they just look at their specific field.
I will ask for an ultrasound at my next GYN visit, since I will have been on Arimidex (or generic) for over two years by then and am post-menopausal.
Thank you! for sharing. An ounce of prevention....
Sue
Always good information on here for all of us. Thanks!0 -
Vaginal ultra sounddisneyfan2008 said:I started differnt post on
I started differnt post on this...MY gyno which I have had for 20 yrs...said he does not do them "rule of thumb" if taking tamoxifen. MY Oncologist instisted. (@ 3-6 mths followefd by D & C) I ended up havint total hysterctomy a year ago (3 yr into tamoxifen) and happy my onologist insisted!
Denise
Is this the same thing as a vaginal ultrasound? because I've had one each year since diagnosed with breast cancer so far so good.~~MollyZ~~0 -
Hi Mollyz -- I get thosemollyz said:Vaginal ultra sound
Is this the same thing as a vaginal ultrasound? because I've had one each year since diagnosed with breast cancer so far so good.~~MollyZ~~
Hi Mollyz -- I get those done often too (every 5 months). These are vaginal ultrasounds, yes. they are very annoying, but they seem to help detect certain issues.0 -
I had mine EACH 4 mths of soLoveBabyJesus said:Hi Mollyz -- I get those
Hi Mollyz -- I get those done often too (every 5 months). These are vaginal ultrasounds, yes. they are very annoying, but they seem to help detect certain issues.
I had mine EACH 4 mths of so and each time followed by D & C..(that got old after awhile)
Denise0
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