Gynelocological Care and Tamoxifen
In 2000, as soon as my primary care physician learned that I was going to start taking Tamoxifen, he immediately referred me to a Gynecologist (for a few years my PCP had done my annual exam and pap smear). In addition to the normal exam, the gyn ordered a baseline sonogram, so he would know how thick my uterine lining was before I started on the drug.
After six months, I had to stop taking Tamoxifen because I developed blood clots (probably totally unrelated to the drug). Since then, I’ve had several minor problems with bleeding, and the Gynecologist has done many tests to assure that all is well. Most of them (with the exception of a D&C) have been easy and haven’t been painful, and they add assurances that there isn’t anything wrong.
This past week, when I had my annual exam, and complained that I was still occasionally having a period (at 57), a relatively new ‘gold standard’ test was ordered. The primary reason the test was ordered was because I had taken Tamoxifen for six months. This test combines a sonogram, an endometrial biopsy and another scope that has proven to be as good for diagnosis as the D&C and hysteroscopy. The D&C is a half day in the surgery center, while this new series of tests is an hour in the doctor’s office (with no anesthesia). I’m so glad that testing has advanced so much that I don’t need to have a surgery for this.
I would never discourage someone from taking Tamoxifen or a similar drug, because there are definite advantages. I might not have had a recurrence this year, if I'd been able to continue the Tamoxifen. But, the most important thing is to have good care that helps to diagnose any problem early.
Joyce
Comments
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Tamoxifen and gyn care
Hi Joyce,
Thanks for your info. I did just being taking Tam. last Friday. One of the possible side effects are blood clots - what were your symptoms? I had my annual exam right before I was diagnosed and everything was fine in Feb. but after reading your story I might call my gyn and see if she recommends a baseline. Other possible side effects are uterine cancer and all the other issues you mentioned - bleeding, pain, etc. I know we are all different but when they note the side effects on the drug sheet before what the medication is for - it made me really nervous. I'm taking the Tam. and so far, just seem to be hot flashing like crazy. I would be interested to know how you knew about the blood clots if you'd like to share. I know most people are successful taking it so I'm being positive and trusting my Dr. But we do need to be proactive and ask alot of questions. I wish they could come up with a drug that kills cancer everywhere - not just one or two places with the possibility of it showing up somewhere else in our bodies. Thanks again for your info.
I hope you are doing well - you mentioned a reccurance this year - I hope you are doing OK with that and feel good about any treatment you are now in.
-Jenny0 -
Good Info
Thank you Joyce for your post. I found it very informative. I am suppose to take Tamoxifen after my radiation treatments are done, but, I am not for sure that I will. The percentage that it will help me is almost null, so, I don't know if it is even worth trying incase some of the horrible side effects would happen.
I am so sorry that you had a recurrence, but, I have read of several on here that had a recurrence even after taking Tamoxifen for years and while still on it. So, who knows.
You just take care of yourself and thank you again for your information.
Sue
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Hey Joyce,
I've been on Tamox for a little over a year now,and yes,I've heard how important it is to see your gynecologist . I am officially menopausel and my gyne told me that even if I am spotting,that I need to come in ASAP!
I've not been discouraged from taking Tamoxifen as I believe I am helping myself by taking it,but I am also very aware of the side effects!0 -
Great post, Joyce
Thanks for the detailed info, and for sharing this part of your own story with everyone. I took Tamoxifen for two years (before being switched to Arimidex, still taking) - at one point, my ob/gyne ordered a pelvic ultrasound which revealed "nothing" (thank goodness).
Tamoxifen is a potentially life-saving medication. And, the very first of its kind - an oral anti-BC med. All R&D was funded by the ACS - not a drug manufacturer. Of course there are some risks; however, they are considered rare. There are, after all, risks with basic OTCs like aspirin, too. We must each make the decision to take it, or not, for ourselves. Just like every other decision we make along the journey.
After BC, I did not return to my "regular guy" (20+ years as his patient) ob/gyne. Specifically asked my med onc for a recommendation - wanted a new ob/gyne with LOTS of BC patients and, therefore, experience. It's worked out great. She's also part of the same medical network - everything that happens under my med onc's direction gets forwarded to her, via computer (and vice versa). I never have to mess around with faxes, photocopies, none of that.
Best wishes to you, Joyce, for good results from your upcoming test.
Kind regards, Susan0 -
Hi JoyceChristmas Girl said:Great post, Joyce
Thanks for the detailed info, and for sharing this part of your own story with everyone. I took Tamoxifen for two years (before being switched to Arimidex, still taking) - at one point, my ob/gyne ordered a pelvic ultrasound which revealed "nothing" (thank goodness).
Tamoxifen is a potentially life-saving medication. And, the very first of its kind - an oral anti-BC med. All R&D was funded by the ACS - not a drug manufacturer. Of course there are some risks; however, they are considered rare. There are, after all, risks with basic OTCs like aspirin, too. We must each make the decision to take it, or not, for ourselves. Just like every other decision we make along the journey.
After BC, I did not return to my "regular guy" (20+ years as his patient) ob/gyne. Specifically asked my med onc for a recommendation - wanted a new ob/gyne with LOTS of BC patients and, therefore, experience. It's worked out great. She's also part of the same medical network - everything that happens under my med onc's direction gets forwarded to her, via computer (and vice versa). I never have to mess around with faxes, photocopies, none of that.
Best wishes to you, Joyce, for good results from your upcoming test.
Kind regards, Susan
I want to wish you good luck Joyce! Please keep us updated on how you are doing!
Kristin ♥0 -
Yet another...Kristin N said:Hi Joyce
I want to wish you good luck Joyce! Please keep us updated on how you are doing!
Kristin ♥
Yet Another thing that I would never have heard from my wonderful onco! Why don't they tell us this stuff? I swear, If I wasn't on this site I would be either crazy or worse by now.
Thanks for all the info. Hugs jxxxxxxxxxxxxxxxxx0 -
thank youtasha_111 said:Yet another...
Yet Another thing that I would never have heard from my wonderful onco! Why don't they tell us this stuff? I swear, If I wasn't on this site I would be either crazy or worse by now.
Thanks for all the info. Hugs jxxxxxxxxxxxxxxxxx
joyce for the valuable info. Im supposed to be starting on tamoxifen soon and didnt even think about having a gyn check. I will now.
laura0 -
Susan,Christmas Girl said:Great post, Joyce
Thanks for the detailed info, and for sharing this part of your own story with everyone. I took Tamoxifen for two years (before being switched to Arimidex, still taking) - at one point, my ob/gyne ordered a pelvic ultrasound which revealed "nothing" (thank goodness).
Tamoxifen is a potentially life-saving medication. And, the very first of its kind - an oral anti-BC med. All R&D was funded by the ACS - not a drug manufacturer. Of course there are some risks; however, they are considered rare. There are, after all, risks with basic OTCs like aspirin, too. We must each make the decision to take it, or not, for ourselves. Just like every other decision we make along the journey.
After BC, I did not return to my "regular guy" (20+ years as his patient) ob/gyne. Specifically asked my med onc for a recommendation - wanted a new ob/gyne with LOTS of BC patients and, therefore, experience. It's worked out great. She's also part of the same medical network - everything that happens under my med onc's direction gets forwarded to her, via computer (and vice versa). I never have to mess around with faxes, photocopies, none of that.
Best wishes to you, Joyce, for good results from your upcoming test.
Kind regards, Susan
my doctors are all part of the same medical network too-made it easy for me,I didn't have to pick any out of the phone book or call a 1-800 doctor's number-thank goodness!And it's nice to not have to mess with any of that passing around info-I SO agree!!
And all my doctors know of course about my being a bc survivor so they try to be"in tune" to everything and are very thorough!0 -
Hey Tasha, How are you? Mytasha_111 said:Yet another...
Yet Another thing that I would never have heard from my wonderful onco! Why don't they tell us this stuff? I swear, If I wasn't on this site I would be either crazy or worse by now.
Thanks for all the info. Hugs jxxxxxxxxxxxxxxxxx
Hey Tasha, How are you? My medical oncologist is puting me on Arimidex, I think he was hoping to push Femara, but I said I would try Arimidex first, I'm post menepausal, almost 60. He told me stiffness in the joints is a common side affect most of his patients complained of and vaginal dryness(which I already have both! He said blood clots were not as common with Arimidex. So, sheesh, every drug has some side affects.0 -
Blood Clotsjennytwist said:Tamoxifen and gyn care
Hi Joyce,
Thanks for your info. I did just being taking Tam. last Friday. One of the possible side effects are blood clots - what were your symptoms? I had my annual exam right before I was diagnosed and everything was fine in Feb. but after reading your story I might call my gyn and see if she recommends a baseline. Other possible side effects are uterine cancer and all the other issues you mentioned - bleeding, pain, etc. I know we are all different but when they note the side effects on the drug sheet before what the medication is for - it made me really nervous. I'm taking the Tam. and so far, just seem to be hot flashing like crazy. I would be interested to know how you knew about the blood clots if you'd like to share. I know most people are successful taking it so I'm being positive and trusting my Dr. But we do need to be proactive and ask alot of questions. I wish they could come up with a drug that kills cancer everywhere - not just one or two places with the possibility of it showing up somewhere else in our bodies. Thanks again for your info.
I hope you are doing well - you mentioned a reccurance this year - I hope you are doing OK with that and feel good about any treatment you are now in.
-Jenny
Jenny, blood clots aren't always easy to diagnose. In fact, I had what we thought was an infected insect bite. My pain started the night after I had been bitten by a 'monster' bug. It was extreme pain in the calf of my leg, particularly when walking, but there can be many symptoms. The good news was that I had clots only in the superficial veins (ones closest to the skin) and not in the deep veins, in my leg. I took a blood thinner for six months and haven't been bothered with them since (eight years). Normally, only people who have a 'mutant' gene, Factor V Leiden, are susceptible to blood clots, and you don't normally know that you have this until you have genetic testing, or suspect that you have it because you have relatives with it. I was only able to take birth-control pills for about a year because I started having pains in my legs: today was the very first time I ever connected the two (slow learner, I guess).
The baseline sonogram is primarily to help detect any uterine cancer in the future.
I did have a recurrence this year, and had a bilateral mastectomy and DIEP reconstruction in April. I've been back to work since June and am doing well. I really am a poster child for early detection and good medical care. The first time it was DCIS, LCIS and a small invasive lobular carcinoma found by mammogram. This time it was only DCIS but in the same breast, so I decided to take the route of a bilateral mastectomy.
Joyce0 -
Sue, back when I wasRitzy said:Good Info
Thank you Joyce for your post. I found it very informative. I am suppose to take Tamoxifen after my radiation treatments are done, but, I am not for sure that I will. The percentage that it will help me is almost null, so, I don't know if it is even worth trying incase some of the horrible side effects would happen.
I am so sorry that you had a recurrence, but, I have read of several on here that had a recurrence even after taking Tamoxifen for years and while still on it. So, who knows.
You just take care of yourself and thank you again for your information.
Sue
Sue, back when I was originally diagnosed, there hadn't been enough studies to know how well Tamoxifen might help. We only learned things like ER, PR, and her-tu, no staging information or oncotype. Thankfully, we keep advancing and are able to design our treatments for what is likely to help the most.
Joyce0 -
Thanks, Susan. I've alsoChristmas Girl said:Great post, Joyce
Thanks for the detailed info, and for sharing this part of your own story with everyone. I took Tamoxifen for two years (before being switched to Arimidex, still taking) - at one point, my ob/gyne ordered a pelvic ultrasound which revealed "nothing" (thank goodness).
Tamoxifen is a potentially life-saving medication. And, the very first of its kind - an oral anti-BC med. All R&D was funded by the ACS - not a drug manufacturer. Of course there are some risks; however, they are considered rare. There are, after all, risks with basic OTCs like aspirin, too. We must each make the decision to take it, or not, for ourselves. Just like every other decision we make along the journey.
After BC, I did not return to my "regular guy" (20+ years as his patient) ob/gyne. Specifically asked my med onc for a recommendation - wanted a new ob/gyne with LOTS of BC patients and, therefore, experience. It's worked out great. She's also part of the same medical network - everything that happens under my med onc's direction gets forwarded to her, via computer (and vice versa). I never have to mess around with faxes, photocopies, none of that.
Best wishes to you, Joyce, for good results from your upcoming test.
Kind regards, Susan
Thanks, Susan. I've also had a great team of doctors, although they aren't in a network. I found them all by recommendations from my primary care physician. I've been so fortunate to have a PCP who is very involved in the medical community and does lots of reading to make sure he's up-to-date on all the new studies. And, he cares a great deal about his patients...
Joyce0 -
Julia,tasha_111 said:Yet another...
Yet Another thing that I would never have heard from my wonderful onco! Why don't they tell us this stuff? I swear, If I wasn't on this site I would be either crazy or worse by now.
Thanks for all the info. Hugs jxxxxxxxxxxxxxxxxx
I don't remember
Julia,
I don't remember hearing much of this from the oncologist, either. I was so fortunate to have a great primary care physician who I've stayed very close to. Most times, when a specialist recommends something, I go to my PCP and talk it over with him first, to get his insight.
Glad to see you posting...hope things are looking up for you.
Joyce0 -
I was only on Tamoxifen for
I was only on Tamoxifen for 9 months. I started spotting and the onc sent me to the gyn. I ended up with the hysteroscopy and D&C also. Turned out I had polyps. My onc changed my medication just in case but not sure if the Tamoxifen had anything to do with it. I think I had the polyps for a long time.0 -
This site isn't letting meChristmas Girl said:Great post, Joyce
Thanks for the detailed info, and for sharing this part of your own story with everyone. I took Tamoxifen for two years (before being switched to Arimidex, still taking) - at one point, my ob/gyne ordered a pelvic ultrasound which revealed "nothing" (thank goodness).
Tamoxifen is a potentially life-saving medication. And, the very first of its kind - an oral anti-BC med. All R&D was funded by the ACS - not a drug manufacturer. Of course there are some risks; however, they are considered rare. There are, after all, risks with basic OTCs like aspirin, too. We must each make the decision to take it, or not, for ourselves. Just like every other decision we make along the journey.
After BC, I did not return to my "regular guy" (20+ years as his patient) ob/gyne. Specifically asked my med onc for a recommendation - wanted a new ob/gyne with LOTS of BC patients and, therefore, experience. It's worked out great. She's also part of the same medical network - everything that happens under my med onc's direction gets forwarded to her, via computer (and vice versa). I never have to mess around with faxes, photocopies, none of that.
Best wishes to you, Joyce, for good results from your upcoming test.
Kind regards, Susan
This site isn't letting me post where I want it to go. Naughty site!
Joyce0 -
My "team" of doctors are allChristmas Girl said:Great post, Joyce
Thanks for the detailed info, and for sharing this part of your own story with everyone. I took Tamoxifen for two years (before being switched to Arimidex, still taking) - at one point, my ob/gyne ordered a pelvic ultrasound which revealed "nothing" (thank goodness).
Tamoxifen is a potentially life-saving medication. And, the very first of its kind - an oral anti-BC med. All R&D was funded by the ACS - not a drug manufacturer. Of course there are some risks; however, they are considered rare. There are, after all, risks with basic OTCs like aspirin, too. We must each make the decision to take it, or not, for ourselves. Just like every other decision we make along the journey.
After BC, I did not return to my "regular guy" (20+ years as his patient) ob/gyne. Specifically asked my med onc for a recommendation - wanted a new ob/gyne with LOTS of BC patients and, therefore, experience. It's worked out great. She's also part of the same medical network - everything that happens under my med onc's direction gets forwarded to her, via computer (and vice versa). I never have to mess around with faxes, photocopies, none of that.
Best wishes to you, Joyce, for good results from your upcoming test.
Kind regards, Susan
My "team" of doctors are all in the same cancer center, and to me, they are the best ever! They all specialize in some way in cancer. It is so important to feel confident with your doctors. So, they all have instant access to anything that is going on with me. I guess I assumed everyone was like that. I just wish everyone the best no matter where their doctors are.
I am praying for you Joyce and keeping you in my thoughts!
♠♣ Susie ♠♣0 -
Long-term tamoxifen use increases the risk ....
Not good news...
Long-term tamoxifen use increases the risk of an aggressive, difficult to treat type of second breast cancer
Study finds a more than four-fold increased risk of ER negative second cancers
SEATTLE—While long-term tamoxifen use among breast cancer survivors decreases their risk of developing the most common, less aggressive type of second breast cancer, such use is associated with a more than four-fold increased risk of a more aggressive, difficult-to-treat type of cancer in the breast opposite, or contralateral, to the initial tumor. These findings by Christopher Li, M.D., Ph.D., and colleagues at Fred Hutchinson Cancer Research Center were published online Aug. 25 in the journal Cancer Research.
http://www.fhcrc.org/about/ne/news/2009/08/25/tamoxifen.html0 -
JKjk1952 said:Julia,
I don't remember
Julia,
I don't remember hearing much of this from the oncologist, either. I was so fortunate to have a great primary care physician who I've stayed very close to. Most times, when a specialist recommends something, I go to my PCP and talk it over with him first, to get his insight.
Glad to see you posting...hope things are looking up for you.
Joyce
Thanks........ This is the first I have heard of this........ain't that just typical?.. I tell ya, I learn a heck of a lot more here than I do from all of my so called health team.
I havn't had a gyn appointment in over 8 years. Oh well.
Hugs to you all JXxxxxxxxxxx (sorry for being such a miserable sod past 3 weeks, things have been hard) Luv Jxx0
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