Is There Anyone Here That is NOT Taking Hormone Therapy?
Comments
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2%Jeanne D said:Undecided, Not Convinced and Not Sure
I wasn't going to post and then thought, why not. I am one of those that the percentage of hormone therapy reducing the chance of a recurrence is very, very small. Granted, I have had bc twice now, but, not a recurrence, a new cancer 23 years later. And, I may start taking hormone therapy, but, at this time, I am still not convinced that it is worth it for 2%.
Love, Jeanne ♥
Jeanne, can you clarify how you arrived at the 2%? What kind of cancer is this new one? DCIS? Thanks!
Connie0 -
Hi Sue, I'm on hormoneButterfly Grandma said:Hi there,
Hi there, Survivorbc09....thanks for your reply....just lots of questions going through my mind.....I have faith that all will turn out ok....just anxious to talk to my doctor!!!
Thanks for being there!!
Hugs to you!
Hi Sue, I'm on hormone therapy (Femara) and I kind of feel like Chen. Since I just take a tiny little pill at night I don't really regard it as therapy or treatment. I do have night sweats and some stiffness, but I'm finding the more I walk and exercise, the better I feel with it. My onc calls Femara hormone therapy. I've had a lot of people asking me when I'm going to start treatment so I tell them I am in treatment and its hormone treatment. Seems like people just can't believe you can take a pill and have your tumors shrink. In fact, I hardly believe it myself. I will have to take it for 5 years just like those who take Tamoxifen. You'll have to make your decision based on how you feel. Its been said, we're all different and we may not all react the same way to medications. Best wishes to you!
BTW, the big question for me tonight is, "Is Chen Claudia or is Claudia someone else"? I haven't been on here long enough to catch all the names. LOL0 -
Hormone Therapy
Hi I was put on 5 years of Arimidex after chemo and rads. I took it one year and quit because I had many of the bad side effects, ie high blood pressure, blood clots, dark depression, bone and joint pain, swollen legs and feet, falling asleep at work (never did this before in my life) weight loss and severe heartburn. I want to preface this by saying everyone reacts differently and until you try it you will not know how your body reacts. It is a very personal decision. When I quit Arimidex after a year I was told to go on Femera, I could not bring myself to do this so am currently not taking any of the hormone blockers. I will re address the issue next year with my oncologist. It took 6 weeks before all the side effects went away, but they did and for now, I do not regret my decision. I hope this helped and I wish you luck with whatever decision you make.
Hugs,
Ladydi10 -
Nopeladydi1 said:Hormone Therapy
Hi I was put on 5 years of Arimidex after chemo and rads. I took it one year and quit because I had many of the bad side effects, ie high blood pressure, blood clots, dark depression, bone and joint pain, swollen legs and feet, falling asleep at work (never did this before in my life) weight loss and severe heartburn. I want to preface this by saying everyone reacts differently and until you try it you will not know how your body reacts. It is a very personal decision. When I quit Arimidex after a year I was told to go on Femera, I could not bring myself to do this so am currently not taking any of the hormone blockers. I will re address the issue next year with my oncologist. It took 6 weeks before all the side effects went away, but they did and for now, I do not regret my decision. I hope this helped and I wish you luck with whatever decision you make.
Hugs,
Ladydi1
My oncologist said since I was double negative (if I remember her words correctly) I was not a candidate for hormone therapy. So when chemo and rads were done, so was I.
Pat0 -
I am about to finish chemo
I am about to finish chemo and then will go on to radiation. I am 38 years old and have IDC, Stage I. At first we talked about putting me on Tamoxifen, but my mother just died of a rare uterine sarcoma, so there are risks with me taking Tamoxifen. Even though it only leads to uterine cancer in 2% of its users, my family health history puts me at higher risk. Therefore, we are looking at a clinical trial that would require my doctors to go ahead and remove my ovaries, thus putting me into menopause. I would then start taking Aromasin, an aromatase inhibitor that is reserved for post-menopausal women. It actually has a higher success rate of warding off cancer recurrence than the Tamoxifen. I'm getting more information about it tomorrow and will certainly share it with you all once I have it in hand. I think this is the way I plan to go...for now. Good luck! Pitt0 -
It's back lolpitt said:I am about to finish chemo
I am about to finish chemo and then will go on to radiation. I am 38 years old and have IDC, Stage I. At first we talked about putting me on Tamoxifen, but my mother just died of a rare uterine sarcoma, so there are risks with me taking Tamoxifen. Even though it only leads to uterine cancer in 2% of its users, my family health history puts me at higher risk. Therefore, we are looking at a clinical trial that would require my doctors to go ahead and remove my ovaries, thus putting me into menopause. I would then start taking Aromasin, an aromatase inhibitor that is reserved for post-menopausal women. It actually has a higher success rate of warding off cancer recurrence than the Tamoxifen. I'm getting more information about it tomorrow and will certainly share it with you all once I have it in hand. I think this is the way I plan to go...for now. Good luck! Pitt
Where did this come from? lol I asked this question months ago. But, glad to see it back. I love all of the information you have posted here. Hormone therapy is as individual a decision as any other part of our treatment. Some of us decide to try it and some don't want any part of it. My big plan is to keep praying for a CURE for bc. Then, the only decisions we will need to make is what color or type of bra do we want to buy!
Sue
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Not on it yetRitzy said:It's back lol
Where did this come from? lol I asked this question months ago. But, glad to see it back. I love all of the information you have posted here. Hormone therapy is as individual a decision as any other part of our treatment. Some of us decide to try it and some don't want any part of it. My big plan is to keep praying for a CURE for bc. Then, the only decisions we will need to make is what color or type of bra do we want to buy!
Sue
I still am not taking tamoxifen. My oncologist of course, wants me to, but, I don't know if I will ever take it. My percentage of help with it wasn't that big as some of the rest of you said too. So, I don't see risking a possible horrible side effect for a couple of percentages. I might try it someday, and, I might not. Like you said Ritzy, it is an individual decision. I wish everyone the best of luck that are on it. I wish there was a cure too so that we wouldn't even have to make a decision on it.
KYLEZ ♥0 -
I am glad this discussion is backKylez said:Not on it yet
I still am not taking tamoxifen. My oncologist of course, wants me to, but, I don't know if I will ever take it. My percentage of help with it wasn't that big as some of the rest of you said too. So, I don't see risking a possible horrible side effect for a couple of percentages. I might try it someday, and, I might not. Like you said Ritzy, it is an individual decision. I wish everyone the best of luck that are on it. I wish there was a cure too so that we wouldn't even have to make a decision on it.
KYLEZ ♥
This question should be always on the top.0 -
I feel like I have an unsound mind over tamoxifenNew Flower said:I am glad this discussion is back
This question should be always on the top.
My prescription is still zipped away in my purse. do I or dont' I. I have never had a blood clot. How do you know if you have one, does it hurt real bad? One of the reasons I am concerned about taking it is we are going to Cost Rica for a month to volunteer for some very underprivledged kids, anyway, been there and the hospital i went to wasn't anything like ours, plus my spanish is pretty much acting out charades. My concern if I decide to start taking tamoxifen and get a blood clot while i am down there does that require immediate medical attention and will I know I have one? Maybe i should consider taking it when I come back. I am having a hard to time thinking about considering. I read and re-read every post on this suject. I dont' want to ramble on all over the block about it. Thanks again0 -
answersmarywest said:I feel like I have an unsound mind over tamoxifen
My prescription is still zipped away in my purse. do I or dont' I. I have never had a blood clot. How do you know if you have one, does it hurt real bad? One of the reasons I am concerned about taking it is we are going to Cost Rica for a month to volunteer for some very underprivledged kids, anyway, been there and the hospital i went to wasn't anything like ours, plus my spanish is pretty much acting out charades. My concern if I decide to start taking tamoxifen and get a blood clot while i am down there does that require immediate medical attention and will I know I have one? Maybe i should consider taking it when I come back. I am having a hard to time thinking about considering. I read and re-read every post on this suject. I dont' want to ramble on all over the block about it. Thanks again
Wish we had crytalballs and could know our futures. That would make this decision easier. I held my prescription for 2 months, trying to decide. With your trip out of the country, you need some serious advice. Please call your oncologist and explain this to him/her and get answers there. When my oncologist said he recommends to stop taking Tamoxifen before I fly (4.5 hours east to west) and maybe even take a baby aspirin before sitting a long time (which can lead to clots in the legs), I was very surprised to hear that one can go off and back on it again and again, and still be OK. So, my suggestion is to call your oncologist to talk this over with him/her once again. You raise some serious questions!
And for all our benefits, please let us know what answers you get, OK?!0 -
marywest, I'd wait to startcrselby said:answers
Wish we had crytalballs and could know our futures. That would make this decision easier. I held my prescription for 2 months, trying to decide. With your trip out of the country, you need some serious advice. Please call your oncologist and explain this to him/her and get answers there. When my oncologist said he recommends to stop taking Tamoxifen before I fly (4.5 hours east to west) and maybe even take a baby aspirin before sitting a long time (which can lead to clots in the legs), I was very surprised to hear that one can go off and back on it again and again, and still be OK. So, my suggestion is to call your oncologist to talk this over with him/her once again. You raise some serious questions!
And for all our benefits, please let us know what answers you get, OK?!
marywest, I'd wait to start taking it after you get back from your trip. As I said earlier in this thread, I had blood clots, and you do not want to be in Costa Rica if this side effect occurs. You also probably want to be home when you start it, so you can get used to how it affects you. I really didn't have any of the other side effects until the blood clots six months after I started. My leg hurt so much I could hardly walk on it, and it was red and swollen. It was very obvious that something was wrong, but I'm not sure that everyone has the symptoms that I had.
The good news is that most people do not have the Factor V Leiden gene that greatly increases the risk of blood clots. In fact, my PCP has said that studies have shown that only people with Factor V Leiden will develop blood clots.
Joyce0 -
awsomejk1952 said:marywest, I'd wait to start
marywest, I'd wait to start taking it after you get back from your trip. As I said earlier in this thread, I had blood clots, and you do not want to be in Costa Rica if this side effect occurs. You also probably want to be home when you start it, so you can get used to how it affects you. I really didn't have any of the other side effects until the blood clots six months after I started. My leg hurt so much I could hardly walk on it, and it was red and swollen. It was very obvious that something was wrong, but I'm not sure that everyone has the symptoms that I had.
The good news is that most people do not have the Factor V Leiden gene that greatly increases the risk of blood clots. In fact, my PCP has said that studies have shown that only people with Factor V Leiden will develop blood clots.
Joyce
I am calling my oncologist today, and it sounds to me like I will wait until I get back. Thankyou so much, and will find out what my doctor has to say. I am grateful for you ladies and your advise.0 -
definitely not while traveling abroadmarywest said:awsome
I am calling my oncologist today, and it sounds to me like I will wait until I get back. Thankyou so much, and will find out what my doctor has to say. I am grateful for you ladies and your advise.
and long flight itself could be a problem.
Good luck with your trip0 -
I haven't seen this threadNew Flower said:definitely not while traveling abroad
and long flight itself could be a problem.
Good luck with your trip
I haven't seen this thread for a long time, but, it is an interesting one. I am still not taking tamox. I got the prescription filled, but, can't bring myself to take one. I hope that everyone is doing well that is on it.
Lex♥0 -
this question never goes awayAlexis F said:I haven't seen this thread
I haven't seen this thread for a long time, but, it is an interesting one. I am still not taking tamox. I got the prescription filled, but, can't bring myself to take one. I hope that everyone is doing well that is on it.
Lex♥
I posted a Tamoxifen question at Uterine Cancer board so we can continue discussion there:
http://csn.cancer.org/node/181214#comment-749592
If are interested in this topic you can take a look at "Victim of Tamoxifen" discussion.
I am still taking it.0 -
Tamoxifen s/e
New Flower, thanks for alerting us to the discussion thread on Uterine Cancer board. That poor victim could be any of us.
I think I'm not happy with my medical oncologist. I've only seen him twice. Maybe he thinks my cancer (DCIS) is insignificant to the others he sees and deals with (frankly, it is). At first he wanted me to take an AI but I mentioned the cost difference between those and Tamoxifen. He said just take it and if you don't like it, you can stop. At that first meeting I left saying I would not take anything due to risk of s/e not outweighing the risk of recurrance of breast cancer.
Well, then I got to thinking how my DCIS was high grade (3). It was small because we caught it early on an annual mammogram. But it was a bunch of "bad boy" cells so who knows how long before it MIGHT have become invasive? Ugly thought. So I had another chat with my onc. Mostly he tells me to take a pill, then listens to my list of questions and only answers the ones that have statistics behind them. Then he just looks at me, waiting, for I don't know what. More questions? I don't know. I just want more information. He will not do any testing.
When I edhim about uterine cancer occuring, he says, it's no big deal, just have your uterus removed. I'm sorry. That's a BIG deal to me! Taking out a major organ, even if it's not going to be carrying anymore babies, is like leaving out eggs in a cake recipe. You'll still get a cake, but the lack of an ingredient affects the whole chemisty of the cake. Not to mention what if the cancer is metastisized? I surely wouldn't have a hysterectomy prophylactically, just to take Tamoxifen!!! I have consoled myself with the statistics that show only 1 out of 1000 women on Tamoxifen have uterine cancer issues after taking Tamoxifen.
Crap! Today I am beginning my second month of Tamoxifen and I am again having second thoughts. I suppose if I stop taking it, I will have second thoughts about breast cancer recurrance. What to do?0 -
CR, I know how you feelcrselby said:Tamoxifen s/e
New Flower, thanks for alerting us to the discussion thread on Uterine Cancer board. That poor victim could be any of us.
I think I'm not happy with my medical oncologist. I've only seen him twice. Maybe he thinks my cancer (DCIS) is insignificant to the others he sees and deals with (frankly, it is). At first he wanted me to take an AI but I mentioned the cost difference between those and Tamoxifen. He said just take it and if you don't like it, you can stop. At that first meeting I left saying I would not take anything due to risk of s/e not outweighing the risk of recurrance of breast cancer.
Well, then I got to thinking how my DCIS was high grade (3). It was small because we caught it early on an annual mammogram. But it was a bunch of "bad boy" cells so who knows how long before it MIGHT have become invasive? Ugly thought. So I had another chat with my onc. Mostly he tells me to take a pill, then listens to my list of questions and only answers the ones that have statistics behind them. Then he just looks at me, waiting, for I don't know what. More questions? I don't know. I just want more information. He will not do any testing.
When I edhim about uterine cancer occuring, he says, it's no big deal, just have your uterus removed. I'm sorry. That's a BIG deal to me! Taking out a major organ, even if it's not going to be carrying anymore babies, is like leaving out eggs in a cake recipe. You'll still get a cake, but the lack of an ingredient affects the whole chemisty of the cake. Not to mention what if the cancer is metastisized? I surely wouldn't have a hysterectomy prophylactically, just to take Tamoxifen!!! I have consoled myself with the statistics that show only 1 out of 1000 women on Tamoxifen have uterine cancer issues after taking Tamoxifen.
Crap! Today I am beginning my second month of Tamoxifen and I am again having second thoughts. I suppose if I stop taking it, I will have second thoughts about breast cancer recurrance. What to do?
CR, I know how you feel about having surgery just because you might have a side effect from some meds. I think one of the reasons my onc decided that I could handle Femara was that I had already had a hysterectomy so ovarian and uterine cancer would not be a concern. My question is should I have my second breast removed just because my other one has tumors. I need a good discussion with my onc and surgeon before I'm convinced on what I need to do. I know there are many opinions on that question but we all have to make our own decisions. I hope we all find the right answers for ourselves.0 -
Any cancer is significant.crselby said:Tamoxifen s/e
New Flower, thanks for alerting us to the discussion thread on Uterine Cancer board. That poor victim could be any of us.
I think I'm not happy with my medical oncologist. I've only seen him twice. Maybe he thinks my cancer (DCIS) is insignificant to the others he sees and deals with (frankly, it is). At first he wanted me to take an AI but I mentioned the cost difference between those and Tamoxifen. He said just take it and if you don't like it, you can stop. At that first meeting I left saying I would not take anything due to risk of s/e not outweighing the risk of recurrance of breast cancer.
Well, then I got to thinking how my DCIS was high grade (3). It was small because we caught it early on an annual mammogram. But it was a bunch of "bad boy" cells so who knows how long before it MIGHT have become invasive? Ugly thought. So I had another chat with my onc. Mostly he tells me to take a pill, then listens to my list of questions and only answers the ones that have statistics behind them. Then he just looks at me, waiting, for I don't know what. More questions? I don't know. I just want more information. He will not do any testing.
When I edhim about uterine cancer occuring, he says, it's no big deal, just have your uterus removed. I'm sorry. That's a BIG deal to me! Taking out a major organ, even if it's not going to be carrying anymore babies, is like leaving out eggs in a cake recipe. You'll still get a cake, but the lack of an ingredient affects the whole chemisty of the cake. Not to mention what if the cancer is metastisized? I surely wouldn't have a hysterectomy prophylactically, just to take Tamoxifen!!! I have consoled myself with the statistics that show only 1 out of 1000 women on Tamoxifen have uterine cancer issues after taking Tamoxifen.
Crap! Today I am beginning my second month of Tamoxifen and I am again having second thoughts. I suppose if I stop taking it, I will have second thoughts about breast cancer recurrance. What to do?
Any cancer is significant. Talking about degrees is just quibbling. There are too many unknowns, including the chance of micrometastases. I agree with your philosophy that anything you do to a part (hysterectomy, for instance) affects the whole...often in unpredictable ways; we don't know all the variables and their relative significance. So many of us start out with DCIS, only to have a significant recurrence down the road.
Here's a thought: While you are well is a good time to shop for a medical oncologist with whom you can communicate, instead of having to bounce your thoughts off of a wall.
xoxoxox Lynn0 -
Another thing about tamoxlynn1950 said:Any cancer is significant.
Any cancer is significant. Talking about degrees is just quibbling. There are too many unknowns, including the chance of micrometastases. I agree with your philosophy that anything you do to a part (hysterectomy, for instance) affects the whole...often in unpredictable ways; we don't know all the variables and their relative significance. So many of us start out with DCIS, only to have a significant recurrence down the road.
Here's a thought: While you are well is a good time to shop for a medical oncologist with whom you can communicate, instead of having to bounce your thoughts off of a wall.
xoxoxox Lynn
Another thing about tamox that bothers me is that even with it, and, even if you remove your ovaries, your body still produces estrogen.
Leeza0 -
Your oncologist sounds as minecrselby said:Tamoxifen s/e
New Flower, thanks for alerting us to the discussion thread on Uterine Cancer board. That poor victim could be any of us.
I think I'm not happy with my medical oncologist. I've only seen him twice. Maybe he thinks my cancer (DCIS) is insignificant to the others he sees and deals with (frankly, it is). At first he wanted me to take an AI but I mentioned the cost difference between those and Tamoxifen. He said just take it and if you don't like it, you can stop. At that first meeting I left saying I would not take anything due to risk of s/e not outweighing the risk of recurrance of breast cancer.
Well, then I got to thinking how my DCIS was high grade (3). It was small because we caught it early on an annual mammogram. But it was a bunch of "bad boy" cells so who knows how long before it MIGHT have become invasive? Ugly thought. So I had another chat with my onc. Mostly he tells me to take a pill, then listens to my list of questions and only answers the ones that have statistics behind them. Then he just looks at me, waiting, for I don't know what. More questions? I don't know. I just want more information. He will not do any testing.
When I edhim about uterine cancer occuring, he says, it's no big deal, just have your uterus removed. I'm sorry. That's a BIG deal to me! Taking out a major organ, even if it's not going to be carrying anymore babies, is like leaving out eggs in a cake recipe. You'll still get a cake, but the lack of an ingredient affects the whole chemisty of the cake. Not to mention what if the cancer is metastisized? I surely wouldn't have a hysterectomy prophylactically, just to take Tamoxifen!!! I have consoled myself with the statistics that show only 1 out of 1000 women on Tamoxifen have uterine cancer issues after taking Tamoxifen.
Crap! Today I am beginning my second month of Tamoxifen and I am again having second thoughts. I suppose if I stop taking it, I will have second thoughts about breast cancer recurrance. What to do?
CRSELBY, I was reading your post and it reminds me my last visit with my doctor.
As I said I have been on Tamoxifen for 9 months now. It seems like we have been seeing the same person or his twin brother. And yes, I am shopping around, but did not find anybody better yet. i am going to have an appointment with my gynecologist next week and will ask him about hormonal therapy as well.0
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