@christylv
When I first started taking it I noticed my periods were lighter and shorter, but then I had a couple months where I had it twice a month and that was when I went to see the gynecologist and then ended up having the full hysterectomy.
So it seemed like it was going away, but then it started becoming irregular.
Oh ok I see. I am sorry you had to go through that. Yes, mine definitely seem lighter and shorter . Did you have a full hysterectomy because of the tamoxifen? My gynecologist told me to watch out for abnormal bleeding because the tamoxifen can cause uterine polyps . And said those have to be removed.
Thanks for the info regarding the 'Signatera' test, for I am really interested in this test. Could you please let us know whether we should contact that company directly or via our medical oncologist? If our medical oncologist does not want us to do this test, how do we contact "them" directly to do this special blood test?
Thanks in advance for your help:) Best wishes to everybody in this journey going forward!
The company is Natera based in California. You can contact them directly for information. I believe any doc can issue a script but they will need tissue sample from wherever your surgery was performed so … usually the oncologist makes the referral.
I believe they cannot yet charge if insurance declines.
Oh ok I see. I am sorry you had to go through that. Yes, mine definitely seem lighter and shorter . Did you have a full hysterectomy because of the tamoxifen? My gynecologist told me to watch out for abnormal bleeding because the tamoxifen can cause uterine polyps . And said those have to be removed.
@christylv
I’m not sure it was because of the tamoxifen or not but due to the abnormal bleeding they did a transvaginal ultrasound and I had a uterine fibroid and a large cyst on my ovary and with the abnormal bleeding, they thought it was a good idea to do the hysterectomy since they couldn’t put me on birth control to see if that would help, due to the breast cancer.
When they biopsied everything afterwards, it showed I also had endometriosis and adenomyosis. So it was definitely good I had it done. But, my gyno did say that any abnormal bleeding while on Tamoxifen calls for a transvaginal ultrasound. So watch for that.
@christylv
I’m not sure it was because of the tamoxifen or not but due to the abnormal bleeding they did a transvaginal ultrasound and I had a uterine fibroid and a large cyst on my ovary and with the abnormal bleeding, they thought it was a good idea to do the hysterectomy since they couldn’t put me on birth control to see if that would help, due to the breast cancer.
When they biopsied everything afterwards, it showed I also had endometriosis and adenomyosis. So it was definitely good I had it done. But, my gyno did say that any abnormal bleeding while on Tamoxifen calls for a transvaginal ultrasound. So watch for that.
Oh ok . Yes that does make sense! Yeah my gynecologist told me if I have any kind of irregular bleeding, spotting, etc. to call her asap and she will do the trans ultrasound. So far so good but like I said, I am only two months out and on 10mg instead of the full 20mg. I wish you luck! 🙂
Oh ok . Yes that does make sense! Yeah my gynecologist told me if I have any kind of irregular bleeding, spotting, etc. to call her asap and she will do the trans ultrasound. So far so good but like I said, I am only two months out and on 10mg instead of the full 20mg. I wish you luck! 🙂
I was put on Anastrozole that ruined my back!! I was on it for 2 years and I was changed to Exemestane last year. I got my 3 year clear mammogram last May x
I read somewhere in this forum that after 5 years of AI, she found out the cancer metastasized. So I did some research and came across this article. It's an old one (2017) and I don't see any recent update. I decided not to scare myself by doing further research. I'm taking Exemestane and hope it works. https://www.imperial.ac.uk/news/177133/breast-cancer-drugs-stop-working-when/
I was tested for the ESR-1 mutation which would indicate a resistance to AI. I was negative … no resistance. Still I had a recurrence, albeit smaller and downgraded significantly in % of cell proliferation ( dividing) from 22 to 3%.
That said my onco considers this a failure of AI!
Two things going on here… well, 3.
1- I am starting radiation Monday
Which I declined originally ( and now regret). Still concerned with possible negative side effects but need to kill any other rogue cells if present!
2- my former onco who was on leave for a year is back and I will get her opinion early November.
3- I have a consultation with an MSK NY breast oncologist who is doing cutting edge research and trials on the new meds coming down the pike ( the “ next “ treatment so to speak since Ai came on the scene.
These are oral SERDS ( selective estrogen receptor degrades) which as stated degrade the receptor or dock that estrogen would use to feed an ER+ breast cancer cell. She presented a brilliant paper at ASCO IN June and I happily discovered that she’s in my neighborhood so to speak.
I meet with her tomorrow for another opinion. These drugs are approved in the metastatic setting but making their way down to early breast cancer arena.
This journey is not for the faint of heart. But I am hopeful.
I was tested for the ESR-1 mutation which would indicate a resistance to AI. I was negative … no resistance. Still I had a recurrence, albeit smaller and downgraded significantly in % of cell proliferation ( dividing) from 22 to 3%.
That said my onco considers this a failure of AI!
Two things going on here… well, 3.
1- I am starting radiation Monday
Which I declined originally ( and now regret). Still concerned with possible negative side effects but need to kill any other rogue cells if present!
2- my former onco who was on leave for a year is back and I will get her opinion early November.
3- I have a consultation with an MSK NY breast oncologist who is doing cutting edge research and trials on the new meds coming down the pike ( the “ next “ treatment so to speak since Ai came on the scene.
These are oral SERDS ( selective estrogen receptor degrades) which as stated degrade the receptor or dock that estrogen would use to feed an ER+ breast cancer cell. She presented a brilliant paper at ASCO IN June and I happily discovered that she’s in my neighborhood so to speak.
I meet with her tomorrow for another opinion. These drugs are approved in the metastatic setting but making their way down to early breast cancer arena.
This journey is not for the faint of heart. But I am hopeful.
Thank you for coming back with lots of helpful information. Now that the onco considers AI fabled in your case, does the onco still put you on exemestane?
Regarding radiation, make sure you apply protective cream right after the session. I applied fresh Aloe Vera while in the changing room before I left. Use it several times a day and at least 2 weeks after the treatment completes. I stopped too early and got blister few days after the last session. Make sure you wash it out before treatment since it can affect the effectiveness of radiation. If you prefer prescription cream, make sure you follow the same routine.
Lots of us don’t have side effects, long term or short term, so don’t worry about it much. Please come back to let us know how your treatment goes and the progress of SERDs for early stage bc.
Interesting that at the bc awareness talk sponsored by Kaiser Permanente, the presenter mentioned that self breast exam doesn’t prove to be helpful (or something like that). I found my lump by self exam. The mammo still didn’t show it! Hugs.
Thank you for coming back with lots of helpful information. Now that the onco considers AI fabled in your case, does the onco still put you on exemestane?
Regarding radiation, make sure you apply protective cream right after the session. I applied fresh Aloe Vera while in the changing room before I left. Use it several times a day and at least 2 weeks after the treatment completes. I stopped too early and got blister few days after the last session. Make sure you wash it out before treatment since it can affect the effectiveness of radiation. If you prefer prescription cream, make sure you follow the same routine.
Lots of us don’t have side effects, long term or short term, so don’t worry about it much. Please come back to let us know how your treatment goes and the progress of SERDs for early stage bc.
Interesting that at the bc awareness talk sponsored by Kaiser Permanente, the presenter mentioned that self breast exam doesn’t prove to be helpful (or something like that). I found my lump by self exam. The mammo still didn’t show it! Hugs.
Thank you for the rad protection tips… I will update but the sub onco suggests fluvestrant not an AI! It’s a SERD injection that is not readily bio available so requires more to get the effect needed. The oral SERDS are bio available and less is required ( so less side effects presumably) but not yet approved in early BC arena. Ugh! Hoping
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Oh ok I see. I am sorry you had to go through that. Yes, mine definitely seem lighter and shorter . Did you have a full hysterectomy because of the tamoxifen? My gynecologist told me to watch out for abnormal bleeding because the tamoxifen can cause uterine polyps . And said those have to be removed.
The company is Natera based in California. You can contact them directly for information. I believe any doc can issue a script but they will need tissue sample from wherever your surgery was performed so … usually the oncologist makes the referral.
I believe they cannot yet charge if insurance declines.
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1 Reaction@christylv
I’m not sure it was because of the tamoxifen or not but due to the abnormal bleeding they did a transvaginal ultrasound and I had a uterine fibroid and a large cyst on my ovary and with the abnormal bleeding, they thought it was a good idea to do the hysterectomy since they couldn’t put me on birth control to see if that would help, due to the breast cancer.
When they biopsied everything afterwards, it showed I also had endometriosis and adenomyosis. So it was definitely good I had it done. But, my gyno did say that any abnormal bleeding while on Tamoxifen calls for a transvaginal ultrasound. So watch for that.
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1 ReactionOh ok . Yes that does make sense! Yeah my gynecologist told me if I have any kind of irregular bleeding, spotting, etc. to call her asap and she will do the trans ultrasound. So far so good but like I said, I am only two months out and on 10mg instead of the full 20mg. I wish you luck! 🙂
@christylv
Best of luck to you too!
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1 ReactionI was put on Anastrozole that ruined my back!! I was on it for 2 years and I was changed to Exemestane last year. I got my 3 year clear mammogram last May x
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Hug
3 ReactionsI am also taking Exemestane. I agree with you...............I don't want to know anymore. However, I will be asking my Dr. at my next appointment!!
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1 ReactionI was tested for the ESR-1 mutation which would indicate a resistance to AI. I was negative … no resistance. Still I had a recurrence, albeit smaller and downgraded significantly in % of cell proliferation ( dividing) from 22 to 3%.
That said my onco considers this a failure of AI!
Two things going on here… well, 3.
1- I am starting radiation Monday
Which I declined originally ( and now regret). Still concerned with possible negative side effects but need to kill any other rogue cells if present!
2- my former onco who was on leave for a year is back and I will get her opinion early November.
3- I have a consultation with an MSK NY breast oncologist who is doing cutting edge research and trials on the new meds coming down the pike ( the “ next “ treatment so to speak since Ai came on the scene.
These are oral SERDS ( selective estrogen receptor degrades) which as stated degrade the receptor or dock that estrogen would use to feed an ER+ breast cancer cell. She presented a brilliant paper at ASCO IN June and I happily discovered that she’s in my neighborhood so to speak.
I meet with her tomorrow for another opinion. These drugs are approved in the metastatic setting but making their way down to early breast cancer arena.
This journey is not for the faint of heart. But I am hopeful.
-
Like -
Helpful -
Hug
7 ReactionsThank you for coming back with lots of helpful information. Now that the onco considers AI fabled in your case, does the onco still put you on exemestane?
Regarding radiation, make sure you apply protective cream right after the session. I applied fresh Aloe Vera while in the changing room before I left. Use it several times a day and at least 2 weeks after the treatment completes. I stopped too early and got blister few days after the last session. Make sure you wash it out before treatment since it can affect the effectiveness of radiation. If you prefer prescription cream, make sure you follow the same routine.
Lots of us don’t have side effects, long term or short term, so don’t worry about it much. Please come back to let us know how your treatment goes and the progress of SERDs for early stage bc.
Interesting that at the bc awareness talk sponsored by Kaiser Permanente, the presenter mentioned that self breast exam doesn’t prove to be helpful (or something like that). I found my lump by self exam. The mammo still didn’t show it! Hugs.
-
Like -
Helpful -
Hug
1 ReactionThank you for the rad protection tips… I will update but the sub onco suggests fluvestrant not an AI! It’s a SERD injection that is not readily bio available so requires more to get the effect needed. The oral SERDS are bio available and less is required ( so less side effects presumably) but not yet approved in early BC arena. Ugh! Hoping
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Like -
Helpful -
Hug
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