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Is There Anyone Here That is NOT Taking Hormone Therapy?

Ritzy's picture
Ritzy
Posts: 4384
Joined: Aug 2009

I was just wondering if some of you bc survivors have decided to not take tamoxifen or any of the other hormone therapy pills that are prescribed for our treatment, if we are ER and PR+. And, if you aren't taking it, what made you come to that decision? And, how many of you started it, and, then stopped because of side effects? And, what were those side effects? I know this is a lot of questions, but, my oncologist brought the hormone therapy up to me, and, I just am not for sure if I want to take it or not. Thank you!

Sue :)

chenheart's picture
chenheart
Posts: 5182
Joined: Apr 2003

It's so funny~ I thought of my 5 years of Arimidex as NOT taking hormones~ rather they were blocking the production of estrogen, as my BC was estrogen Positive. If anyone were to ask me, I would say I have never taken hormones! This isn't exactly what you were asking, but when I saw the title of your post, I thought it applied to me! LOL But I see now that it isn't what you meant! :-)

Hugs,
Chen♥

DianeBC's picture
DianeBC
Posts: 3888
Joined: Jun 2009

I am confused. Isn't that what they call it? Hormone therapy? Tamoxifen and the Aromatase inhibitors? That is what I was told and what all of my literature says.

And, I have delayed taking it myself.

Hugs, Diane ♥

chenheart's picture
chenheart
Posts: 5182
Joined: Apr 2003

I suppose it is 6 of 1 half a dozen of the other~ Estrogen IS a hormone, and Tamox and Arimidex are blockers, that's why I say I have not taken any hormones! It is indeed "hormone therapy" but only in the sense that this therapy blocks hormones.

When I otherwise think of Hormone Therapy, I think of "HRT",or Hormone Replacement Therapy. Which of course most of us avoid not just like the plague, but like CANCER!!! :-)

Are we all confused now?????

Hugs,
Chen♥

survivorbc09
Posts: 4378
Joined: Jun 2009

I think that is why it is called Hormone Therapy, and, not Hormone Replacement Therapy. There is a huge difference. I don't think anyone was confused but you Claudia. lol But, you get it now. lol

And, I am not on any yet.

chenheart's picture
chenheart
Posts: 5182
Joined: Apr 2003

Well, there ya go! If I had only paid more attention to my very own words, I would not have been confused! LOL Thanks for unscrambling my brain!

HAHAHAHAHAHA!

Chen♥

Ritzy's picture
Ritzy
Posts: 4384
Joined: Aug 2009

Poor Chen. Want a cookie?

Sue :)

Marcia527's picture
Marcia527
Posts: 2731
Joined: Jul 2006

OK. I confess. I'm not taking the pills. But you have to remember that every person is different and I was told they weren't helping me that much anyway. I started with Tamoxifen in 2004. After nine months the onc took a blood test to determine that I was in menopause. I was spotting and after different tests had to have a D&C. The Tamoxifen might not have contributed but just in case switched me to Aromasin because I also had a sister with uterin cancer. So I stayed on the Aromasin 2 1/2 years and started having trouble with rashes and foot sores. The onc didn't think the medication had any thing to do with it and she was right. She took me off the meds for 3 months and the problems continued but switched me to Arimidex anyway. I took it for a couple of weeks and stopped because it was so expensive and by that time no prescription insurance. The worse side effect for me was the meds turned my body into a raging furnace. Don't be afraid to try the medication. If you have problems you can always stop. Most everything I blamed on the meds wasn't caused by it. I also have Parkinson's diagnosed in 2006 and some day may have to take meds for that. So for now just decided I didn't want to. But that's me.

jk1952's picture
jk1952
Posts: 613
Joined: May 2009

I thought the same as Claudia, that the estrogen was being blocked or sent somewhere other than my breast (I think that's the way it was explained 9 years ago when I went on Tamoxifen). I felt that I needed to do whatever I could to protect myself from the beast returning. I wasn't bothered much by the minor side effects (a couple hot flashes), but I did develop blood clots after I had taken it for six months. I also had a nasty insect bite at the same time, so it's hard to tell whether the clots had anything to do with the Tamoxifen, or if they were due to something else. I'm glad that I tried it, so I could know that I had done whatever I could, but I wasn't too disappointed to have to stop, either.

Joyce

taleena's picture
taleena
Posts: 1612
Joined: May 2009

I must confess that I have been considering not taking part in hormone therapy... at first I was told I would be on Tamoxifen... I am premenopausal, and receptor + bc... I will just be starting seven weeks of rads on Tuesday.. afterward my onco wants me to start the RX.. however a blood test revealed that I am a poor metabolizer of Tamoxifen, so he wants me to take Zoladex injections (monthly) to put me into a forced menopause... then have me take Femera... I have done a lot of research on the Zoladex, and the thought of those injections makes me more anxious than the thought of rads... so.... my husband is insistant that I do it... however, I am not so convinced... still teetering back and forth...

~T

phoenixrising's picture
phoenixrising
Posts: 1509
Joined: Feb 2007

I am so glad you had that test done. I know it puts you into a quandary about what to do but it's still good to know. To think a few years ago you'd take that Tamoxifen for 5 yrs and perhaps suffer horrific se only to find out it didn't work. If you are done having children perhaps undergo an oophorectomy?? None of this is easy is it?? My best to you......
hugs
jan

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

I haven't taken anything. My oncologist is still trying to convince me. I am just not enthused about the side effects of any of the hormone therapy drugs.

♥ Kylez ♥

chenheart's picture
chenheart
Posts: 5182
Joined: Apr 2003

For what it's worth, I finished the entire 5 years of Arimidex in March ( or was it February??) and I had NO noticable side-effects. During those 5 years, I continued to walk 5 miles 3X a week, and go to Jazzercise classes 3X a week as well. I did 5 and 10K's, a half-marathon, zip-lined in Mexico, went to the Inauguration with 2 million ppl in the freezing cold,was in a ping pong tournament ( a semi-finalist, if I may say so!). I also go camping with 200 friends every year, at home I of course do the house keeping, cooking, laundry, love-making, and everything everyone else who lives/loves life does!!! I am not bragging at all, I am doing nothng extraordinary...but I lived before, during and after Cancer treatment, including Hormone Therapy. I hope all of your experiences with therapy keep you as healthy and active too.

Hugs,
Chen♥

Jeanne D's picture
Jeanne D
Posts: 1867
Joined: Mar 2009

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 ♥

chenheart's picture
chenheart
Posts: 5182
Joined: Apr 2003

I hope you didn't think I was trying to sway you ( or anyone) into making a decision not in their best interest, be it physical or emotional! I was simply weighing in on my personal experience with the side effects of Arimidex, as I know there are horror stories! Just that mine was thankfully not one of them, and I hope that fear alone, as opposed to research and a personal decision based on fact is not keeping someone from hormone ( or any!) therapy!

Hugs,
Chen♥

crselby's picture
crselby
Posts: 379
Joined: Oct 2009

Jeanne, can you clarify how you arrived at the 2%? What kind of cancer is this new one? DCIS? Thanks!
Connie

lanie940's picture
lanie940
Posts: 492
Joined: Jul 2009

I just asked the Breast Care Center nurse about Arimidex and how many of the patients had problems with it, and she said only a few compared to most who had none to only mild. So, if my Medical Oncologist recomends it, I guess I will try it. I want to continue taking my Wellbutrin. I have taken it for probably 10 years. I had very few problems with going through menepause. Only an occasional asking "Is it me, or is it hot in here" LOL. It wasn't horrondus as it was for one of my older co-workers at the time, she would get a huge flush on her neck and face and be sweating profusley. My lymph node biopsy was painful, i just hope the results are that they are cancer-free. I should know by Tuesday.

Ritzy's picture
Ritzy
Posts: 4384
Joined: Aug 2009

Jan, you are right. That test is very important to have. I hope everyone who is suppose to go on tamox has it done. Good information!

Sue :)

Alexis F's picture
Alexis F
Posts: 3604
Joined: May 2009

Welllllllllllllllll

Bella Luna's picture
Bella Luna
Posts: 1571
Joined: Aug 2009

Good question Ritz. Will definitely follow this thread as Tamoxifen was prescribed for me. Am curious to hear what others have to say as I'm a tad bit nervous about the drug. Thanks for posting your question.

Bella Luna

dbs1673
Posts: 205
Joined: Sep 2008

I was actually on tamoxifen for nearly 3 years BEFORE I was diagnosed. I had several biopsies and an abnormal reading but not BC. My mother had breast cancer at age 48. Trying to prevent the breast I started on the Tamoxifen at age 45. I am fortunate that I had absolutely no side effects. During that time I also had the BRCA testing done and it was neg. Hello age 48 when life wasn't great and the beast arrived. My pathology report had a "borderline" HR reading. I had double mast. After consulting with the oncologist we both agreed there really was not any benefit for me to continue. I will say that when I stopped the tamoxifen, I had some of the heaviest periods ever. A year later things have normaled out considering I'm now pre-menapausal. I know it's a lot to think about but I wanted all the artillery I could get.

dawn

tasha_111's picture
tasha_111
Posts: 2042
Joined: Oct 2008

I stopped taking Tamoxifen last week, I am just too scared by the horror stories about it, all from reputable sources. I have an appointment with my oncologist (Dr. Charisma-Bypass) on wednesday to try to get some REAL answers.......I am also on a contradictory med 'Zoloft' so I want to know what to do about that too.........I recently tried stopping the zoloft, with very negative effects...... I know this won't help you at all, but I will be back with SOME answers on wednesday night........

Hugs Jxxxxxxxxx

jnl's picture
jnl
Posts: 3873
Joined: May 2009

This thread is interesting. Some have taken it, some won't and some aren't sure. I look forward to seeing more replies. And, I love your picture Sue. Very funny lol

Leeza

lanie940's picture
lanie940
Posts: 492
Joined: Jul 2009

ARRGH! I tried Zoloft before anything else when I was DXed with depression. It gave me abdominal crampiness. I was switched to Prozac. I was on that for 3 yrs. It wrecked my libido, so I was switched to Wellbutrin. My cousin in Calif. who is not doing well at all took Tamoxafen for 5 yrs. she was taking Wellbutrin at the time, now she has mets to her bones. So, it's possible those yrs on the Tamox were not helping her. this info only came out recently. God, I hate cancer. why does everything have side effects!

lanie940's picture
lanie940
Posts: 492
Joined: Jul 2009

I was getting some very heavy periods in my mid-late 40's then it tapered off. Had my last period in May of 2000, a week after I had major neurosurgery. I was hoping to never go through another surgery!OH, WELL!

Noel's picture
Noel
Posts: 3101
Joined: Apr 2009

Not taking any hormone therapy pills yet!

♥ Noel

creampuff91344's picture
creampuff91344
Posts: 989
Joined: Nov 2008

WELL.....my experience with hormone theraphy has been repeated time and time again on this board, and I still don't have a definitive answer as to whether it is something I should or shouldn't do. After chemo, my onc started me on Femera, which I started the same day as rads. (I have heard that this drug should not be used while taking radiation treatment, but that is what my onc suggested.) After three months on Femera, I looked like an old lady trying to get out of a chair, or walk across the floor. I would first have to stand up, and stay still for about two to three minutes before I trusted my left hip to function well enough to keep me from falling. There were other joints that ached, but mostly my left hip. I stayed on the drug for four months, and then had my three month follow up visit with the onc. We decided to switch me to Tamoxifen, which is a different type of hormone theraphy than the AI's (Femara, Aromisin or Arimidex). I hesitated to try this, as I had so much trouble with Femara, and finally gave in to my husband to at least try it. I started taking 10mg per day (rather than the prescribed 20mg), and didn't notice much of anything. After a month a started taking 10mg twice a day. Well, after about four months on Tamoxifen, I started having side effects (hot flashes almost constantly, nausea, knots in my legs and arms which were at first diagnosed as clots, and several other small se's). I cut back to 10mg per day for another month, and about three weeks ago I finally stopped the Tamoxifen altogether. Here it is three weeks later, and I feel more like myself than I have in months. The onc was disappointed because I had stopped the med, but I think my body is squealing for a break from meds. I trust my own judgement as much as anyone does, and feel that I know my body much better than anyone at all. Therefore, for now, I am just watching my diet, exercising, taking vitamins (Calcium + D, D3, Omega Fish Oil and B6), and hoping for the best. I had no lymph node involvement, and feel that this may give me an edge on not taking Tamoxifen, and at least I know I have made a decision, and must live with it, no matter what happens. Quality of life is so important, and I am happy to be where I am today. Hugs to all trying to work through this decision. It is a tough one, but a decision only the individual can make. Good luck to all, whichever way you sway. Hugs.

Judy

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

Judy, I so agree with you. Quality of life is important! Glad you are feeling better!

Kylez ♥

karaokelorie
Posts: 33
Joined: Aug 2009

Started taking Femara 8/09. So far so good
Lorie

RE's picture
RE
Posts: 4606
Joined: Feb 2004

My sister took Tamoxifen for 5 years had no problems and hated to have to get off of it. I took it for 5 months had a recurrence and quit because obviously it did not work for me. It is different for each of us I think.

Hugs to all,

RE

Ritzy's picture
Ritzy
Posts: 4384
Joined: Aug 2009

It seems some are still on the hormone therapy, some had recurrence's on it, and, some have stopped it totally. It is good to see the different range of answers on here. Thank you everyone!

Sue

Christmas Girl's picture
Christmas Girl
Posts: 3644
Joined: Apr 2009

I took Tamoxifen for 2 years, then was switched to Arimidex - now 3+ years and still counting...

Just like with every other possible/recommended step along the BC journey - we each decide for ourselves. No one can force us to have surgery, chemotherapy, radiation, mammograms, ultrasounds, MRIs, scans... The list goes on and on. We agree, or refuse.

I always simply advise that you specifically ask your own onc about your own risk of recurrence percentage, and exactly what benefit the meds - and/or anything else - provides.

For me, the meds "hold" my risk @ 20% - which is where surgery/chemo/rads got me, over five years ago, and where my risk level will remain until I hit ten years.

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

The idea of taking hormone therapy is as individual as each of us are. There is no right or wrong answer. It is just up to us to decide what is best for us. It is interesting to read all of the answers.

Kylez ♥

Kristin N's picture
Kristin N
Posts: 1969
Joined: Mar 2009

NOT!

Kristin ♥

Angie2U's picture
Angie2U
Posts: 2993
Joined: Sep 2009

My oncologist said he wants me on hormone therapy, probably Tamoxifen, after I have my radiation treatments. But, I am not sure if I will or not. Guess I will just have to keep educating myself on Tamoxifen and make my own choice.

Angie

roseann4
Posts: 994
Joined: Sep 2009

I agree with Christmas Girl. We are faced with choices several times during this frightening journey. My first was the type of surgery (had breast conserving aka partial mastectomy). Then if I should have preventive chemo (I decided no based on my Onco test). Radiation was a given with a partial mastectomy. Finally, would I take hormone theropy. I opted for Arimidex because my tumor was highly estrogen receptive. I was VERY concerned about how the SEs would affect the quality of my life. Fortunately, I haven't had any so far. Yipee!

I listened to the opinions of my docs, my family, my friends and whatever I read on the subjects. In the end, I made my decision based on what I felt was right for me.

I hate that we have BC but we are blessed to have so many choices today to assist us in our healing. Good luck with your decisions. God Bless you, my sisters.

Roseann

Alexis F's picture
Alexis F
Posts: 3604
Joined: May 2009

Just a note. Some reports have stated that if you have no side effects, especially with tamoxifen, that you are not metabolizing it, which means it isn't working for you at all.

Lex♥

Ritzy's picture
Ritzy
Posts: 4384
Joined: Aug 2009

Tamoxifen is scary stuff. Some of the side effects are blood clots and uterine cancer. I just got rid of one cancer, why take a drug that might give me another? Just a question.

Sue :)

Calleen's picture
Calleen
Posts: 414
Joined: Jul 2009

I know my Doc is going to recomend it for my treatment and after all I've read I have to wonder does it really really help prevent recurrance? I am scared of medicine anyway and reading that it can casue strokes, blood clots and yet another type of cancer then really we are just taking chances with whatever we decide. is it safe ?? is it not safe??? Honestly it all scares me!!!

Butterfly Grandma
Posts: 2
Joined: Sep 2009

Hi everyone....this is my first time on here....I was diagnosed with BC in March of 2009 and had a mastechtomy...Because I had a blood clot in my calf in the past, my doctor said it was nothing to worry about, it was not the kind that causes you problems, it would dissolve and just go away....it did. I told my oncologist about this and she said no Tomoxifen or any other drug for me, because all of them cause blood clots....My surgeon and I really do think I should have this. I worry and get concerned about the cancer returning. I do go in on the 21st of Sept. to have my first mammogram on my remaining breast...Prayerfully it will be clear. During the biopsy, the tech hit bone, as there was bone in the results of the biopsy. Is that a reason to worry about bone cancer? Forgive me, I am so new at this and have many questions and concerns. Thanks for all your input!! Butterfly Grandma

survivorbc09
Posts: 4378
Joined: Jun 2009

Hi Butterfly Grandma! Just want to welcome you to the site. Good luck with your mammogram. I think we all worry about bc returning, but, we have to trust our doctors and have faith that we have beat it and it won't come back. Post again!

Hugs

Butterfly Grandma
Posts: 2
Joined: Sep 2009

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!

Sunrae's picture
Sunrae
Posts: 808
Joined: Oct 2009

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. LOL

ladydi1's picture
ladydi1
Posts: 130
Joined: Jul 2008

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

padee6339's picture
padee6339
Posts: 765
Joined: Jun 2009

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.
Pat

pitt's picture
pitt
Posts: 388
Joined: Aug 2009

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

Ritzy's picture
Ritzy
Posts: 4384
Joined: Aug 2009

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 :)

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

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 ♥

New Flower
Posts: 3996
Joined: Aug 2009

This question should be always on the top.

marywest's picture
marywest
Posts: 135
Joined: Sep 2009

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

crselby's picture
crselby
Posts: 379
Joined: Oct 2009

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?!

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