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against tamoxifen
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luvmymammy posted:
Is there anyone out there w/stage 1 breast cancer that had a lumpectomy and radiation but chose not to do additional drug therapy/Tamoxifen? If so, what were your results? How long has it been? What other treatments did you try?
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kiwiallright responded:
Hi,

In 2001 I had a lumpectomy & Rad's and choose not to take Tamoxifen - I went eight years and was dianogised with a different primary cancer, would not have mattered if I had taken tamoxifen or not... If you choose not to take it it is your choice - I have tired three times to take aromasin but with all the ache pain that I have had the last few days, I truly have decided that I will take the chances and worry about it if I ever need to again. I am doing well and have always been happy with the choices that I have made.

Good luck with your decision
 
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1fernehall responded:
I choose not to do adjunctive hormone therapy after lumpectomy and radiation. Rads. ended May of 2010. However, prior to that I had colorectal cancer and elected surgery only - much to my surg. and onco. disapproval. But, I had read quite a bit of the hormone treatments and decided it wasn't for me. My quality of life would have been compromised to much to suit me. It's a good idea to get other's opinion, but do your research and decide what's right for you. My hope is for your greatest outcome. Blessings.
 
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rachael67 replied to 1fernehall's response:
I, too, opted out of anti-hormone trxs...For me the risks far outweighed the benefits. Time will tell if it was a wise choice, but it was the one I made at the time based on research and thought.

We each have to do this for ourselves...One size does not fit all.

Blessings.
Rachael
Just when the caterpillar thought her world was over, she became a butterfly! Don't give up five minutes before the miracle!!
 
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kiwiallright replied to rachael67's response:
Rachael

I am just wonder what anti-hormone trxs was offered and you chose not to take, just wondering thank you
 
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judyfams replied to kiwiallright's response:
Have any of you looked into the antiestrogen drug called Toremifene. It acts like Tamoxifen - but with fewer side effects?

I am considering taking this drug - check this link
http://www.medwire-news.md/46/87511/Oncology/Toremifene

My oncologist and I have discussed this drug. Has anyone taken this drug?

Judy
 
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rachael67 replied to kiwiallright's response:
Actually, both Tamoxifen and an aromatase inhibitor were suggested (each by different docs.) As I was past menopause and my research had shown me that Tamoxifen was primarily for those still in menopause, I discussed with the referring physician that this seemed counter-intuitive. She totally disagreeed with me saying that Tamoxifen had been developed exactly FOR post-menopausal women. Need I tell you what I then thought of this doctor? Or how quickly I exited her office???

Anyway, I discussed with several other doctors the aromatase inhibitor idea and a few disagreed with my choice, but the third didn't feel I was out of the ballpark with my accessment. My cancer had been DCIS. I had done both the lumpectomy along with rads. The minimal benefit I might gain from the meds were outweighed by the risks. As that physician pointed out, I coiuld always change my mind in the future. Thus far, I've not felt it a mistake. Tomorrow? Can't speak to that, but am continuing to cross my fingers.

Blessings.
Rachael
Just when the caterpillar thought her world was over, she became a butterfly! Don't give up five minutes before the miracle!!
 
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kiwiallright replied to rachael67's response:
Thank you Rachel I go to the oncologist next week with the news that I will not be taking aromasion, I took the last pill on Tuesday night and still waiting for all the aching to leave - never had this type of aching before. It has not been pleasnt.

Like you Tomorrow!! we can only hope right - so far I am nearly two years out from this 2nd round of BC not as friendly as the first round.

Thank you
 
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sadblossom responded:
Hello luv,
All the women who haved replied here are very wise women. I myself take what they all say very seriously. But may I ask what the other details are of your cancer? I had a stage 2 grade 2, 2cm tumor. Invasive Ductal. A hormone fed tumor. I had a lumpectomy and 30 rad treatments and am now on Arimidex for 5 years. I have been on this pill for 1 year now.I am post menopausal. I have had my share of aches/pains/muscle cramps/mood swings/wt gain/etc; My reasoning in taking this pill was that it cut my % or recurrance more than half. I felt that given my cancer stage/grade/size/type that it was a wise choice for 'me'. Especially sense it took 3 surgeries to get to clear margins and 8 nodes removed which 2 of them had cancer. My point being...........consider the chances of recurrance, the cancer type, your overall health and make a decision that will work for you. We are all different and the meds effect us all differently. You need to go with what feels 'right' to you and a decision that you can live with. I admire and respect the ladies that take the meds AND the ones that chose not to. It is a personal decision.We all share our experiences here and we learn a great deal. I know I have and I continue to. Read all the replies you get, do some of your own research and ask LOTS of questions.And above all do what is right for you.
Please let us know and the best of luck on your decisions.
God Bless!
Pat~sadblossom
 
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luvmymammy replied to sadblossom's response:
Thank you to everyone! The question was actually posted for my Mom. She has stage 1 ER/PR , HER2 neu neg breast cancer. She had a 6mm mass. Lumpectomy was done and 2 sentinal nodes removed. They believe they removed enough good tissue w/clear magins. Nodes were clear.
She was recommended for 20 radiation sessions and 5 yrs on Tamoxifen. The research she has done and the people she has spoken to who have taken it are making her lean towards not taking it. She has heard of some topical creams and was wanting to opt for that alone w/the radiation. Her hope was to find some kind of study that would show her the results of women who took the Tamoxifen vs. women who did not.
I have to tell you all that we are very grateful to have this resource and appreciate everyone's time and concern.
I wish all of you the best and will look forward to hearing any other thoughts, suggestions and information that any of you may have.
God Bless
 
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rachael67 replied to luvmymammy's response:
I'm wondering how old Mom is? Is she postmenopausal? If so, I am a little surprised they are recommending Tamoxifen and not an aromatase inhibitor.

Hope she is able to reach a decision which feels right for her.

Blessings.
Rachael
Just when the caterpillar thought her world was over, she became a butterfly! Don't give up five minutes before the miracle!!
 
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kiwiallright replied to sadblossom's response:
Hi,

My first cancer was Stage II Invasive & non invasive ductal carcinoma. (2001) This round I am stage IIIB Invasive Lobular and it involved the skin of my breast. My Oncologist - whom I struggled at first to agree with anything has surprised me my last two visits when he felt that the choice was mine and felt that it is not worth being miserable for five years then dying and live five quality fulled years and still die. I has suggested Tamoxifin, but I am waiting until all the ache pain that I have ceases - So far I have made it nearly two years if we take if from the date of diagnoised May 14, 2009 - - On June 14, 2011 it will be ten years for the first cancer - so I am looking at survival for 12 years. Apart from the aches the aromasin seems to have some affect on my brain - memory worsens, my head shakes all the time and I become real ornary.. So will wait a month then try the other - if the aches do not go then I have to wonder if something else is going on.

Good luck and thank you all for sharing your feelings
 
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judyfams replied to kiwiallright's response:
Read my earlier post in this thread about Toremifene. It acts like Tamoxifen except with fewer side effects and IS for post menopausal women.

The AI's aromatase, arimedex and femera have the same or very similar side effects.

Toremifene is worth looking into. i will begin it next wee after telling my onco that I would ot consider ant of the AI's. Check out the website in my earlier post.

Good luck,
Judy
 
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rachael67 replied to judyfams's response:
Aha! So glad you added the fact about being for post-menopausal ladies! I wasn't aware of the drug or that it, unlike Tamoxifen, is recommeneded for post-men. Question...Is it also for pre-manopausal?

Thanks.
Rachael
Just when the caterpillar thought her world was over, she became a butterfly! Don't give up five minutes before the miracle!!
 
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judyfams replied to rachael67's response:
Rachel,

Toremifene is used for post menopausal women and for women that have metastatic breast cancer. You can ask your oncologist if pre-menopausal can tae it - but my guess is that they would push Tamoxifen on you instead of the Toremifene. But you can do your own research and speak to your oncologist. When I told my oncologist that I would not consider the AI's due to my already having joint pain from the RA for over 30 years, and that the RA is now under control - he said I could keep switching the AI's to find one with less severe side effects. I finally got through to him that I would NOT have joint pain for one more minute in my life. He finally agreed to let me use Toremifene.

My guess is that not many of us have heard of it because of it's use for metastatic BC, and if you are post menopausal - you are automatically given one of the AI's. I also feel that the pharmecutical companies push their newest drugs on the doctors. My oncologist who has been a practicing onco for over 30 years in this area had samples of all the other antiestrogen drugs - but NOT Toremifene when I asked for samples!

I will get it from the mail order phaemacy and begin taking it and let you guys know what happens as I intend to keep a daily journal about how I am doing when on this drug.

Since my chance of recurrence (from the onco test) is 12% with taking an antiestrogen drugs (over the next 10 yrs.) and about 25% if I don't - I feel I really do have to be on one - and I did the research and FOR ME I think Toremifene is the way to go.

By the way I also use the BioResponse pills every day and have been on it for almost 3 months as I did not want to begin both BioResponse and antiestrogen the same time so I could be sure which one left me with bad side effects - that is why I am starting on the Torefimene now and not earlier. My onco was not happy about that and said he didn't now anything about BioResponse and saw the label of ingredients and didn't say anything negative - so now that I know I have no problems with the BioResponse I can begin the Torefimene.

The BioResponse is kind of mixing alternative therapy with traditional western therapy - but once again - it works FOR ME. It may not be the right path for anybody else.

Judy


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