Does anyone say no to Tamoxifen

My first post!  So, how much green tea do I need to drink to get benefits from it?  I have said no to Tamoxifen, but it's never that easy, is it?  After 3.5 months on the drug with less and less sleep every day, and more and more bleeding, I stopped.  My onc had said I could take it or leave it, having DCIS.  So I had decided to give it a try.  Well, I stopped mid August, and can now sleep.  I had my first mammogram post lumpectomies at the beginning of September, and guess what?  Faint calcifications, and according to the letter from the radiology group, "probably benign" lolz.  Recommended mammogram in 6 months.  I have an appointment with my onc Monday to discuss the Tamoxifen, but sheesh, I can't bear the not sleeping at this stage of my cancer journey. 

Of course I know that you have to look at the whole picture, and I am, and I have made some adjustments to my diet/vitamin intake.  Just curious about how much tea, what kind of tea, how can you know that the green tea you buy has the antioxidants or whatever that provides benefits.  I will inquire about thermography, thanks for that tip.

How does one go about finding a very good GYN?

I am concerned about other cancers and the ONC said they don't test to make sure everything is clear.  So I think I need to find an exceptional GYN.  How do I go about doing that?

I'm just worried about what could happen. Ovarian cancer doesn't really have any side effects until its to late.  I don't understand not checking at least with ultrasound once in a while to make sure nothing is going on.

Well said Fairy 49!!

I had a BM with TE on 9/14 and still have my 4 drains.  I've met with my breast surgeon and oncologist today to confirm the final pathology results.  I am free of breast cancer and my sentinel node is clean.  The type of cancer they found was cribriform carcinoma.  It is very unique but the kind that has good prognosis.  Not a lot of study about it.  Stage 1, 1.5 cm on the right breast but I elected to do a phophylactic mast on the left breast too.  I don't need rads or chemo.  The oncologist told me I don't need further test.  I didn't even get an oncotype score.  It didn't seem important to the oncologist.  However, he was prescribing that I take Tamoxipen for 5 years and for me to think about it.  I asked him to write a presciption and I picked up a bottle but I don't really want to take it.  I'm not comfortable with the idea because I don't see the value outweighs the risk of taking it everyday for 5 years.  I am more inclined to continuing my healthy habits consisting of regular exercise and this time really observe "clean eating" (although I've already been eating healthy but his time avoid processed food).  I want to hear your opinion.  Anybody have tips on natural, healthier and "cleaner" approach for prevention?

Bermuda-head on over to the  natural girls thread. We have so many ideas, your head will spin. Just think of it like reading a book because that is how long it will take! We are a bit chatty and get off on all kinds of tangents. But I learn something new every day!

Dawnn-Keep looking for the answers. When it feels right, you will know that your decision is the right one. And thinking out loud is great too!

"admitting?"  The possibility of clots has never been a secret.  For many of us the benefit far outweighs the risks, but I don't think anyone has ever claimed there are no risks.

Merilee, I agree with you.  The article you shared with us is spot-on.

I started Tamox in the beginning of July - 20 mgs daily.  Developed nearly every s/e listed - including the debilitating depression. suicidal ideations, and weepies and in my case, agoraphoia.  I met with my med onco and she suggested cutting the dosage in half to take that daily.  So I did so.  Side effects were actually worse this time.  So now, with my med onc's blessing, I am off the Tamox.  She ordered a "menopause test" for Monday to see if I can now perhaps take Evista.  But I told her in no uncertain terms that I will not continue to take Tamox.

And for those of you who are happy with taking your Tamox with no debiliating s/es, then that is wonderful and we are all pleased for you.  But you do not belong on this thread.  Please stop interfering with those of us who have decided not to take Tamox, or to stop taking Tamox, for our own personal reasons.  Each individual has a different reaction to this drug.  Although some of you may mean well, and that is appreciated, there are some of you who seem to be rather militant  towards us about starting or continuing to take the Tamox.  In that case, please remain on your Tamox thread.  Please leave us alone.  Our decisions  to not to take this drug or to discontinue it were prompted by a great deal of research. We are not on your thread trying to convince you to stop taking Tamox . . . so please accord us the same respect for our decisions.

You all know who you are.  And in the spirit of tolerance and respect for each other's decisions, I am submitting this post.

Maria

Thank you, Vivre.  I did not mean to offend anyone, but I just wanted to point this out.

Hi everyone i have decided to join this group i have read some post . i also have just finished chemo .my onco wants me to take tomoxafen. how is everyone doing taking this....i have read some things lately that seem scary ......

awesome Britt!!!!

L

ox

For some of us the risk of tamoxifen or an AI override the benefits.  I am one of those people and while it does give me concern not to have one or the other, it is not a safe option for me (and I was told this by an oncologist at a major medical center with whom I consulted).  So these dangerous side effects can be truly dangerous for some of us.  I would hope that those, who can take these drugs, would not denigrate the dangers and problems for those of us who cannot. 

Thank you, Mandy. Your post stated it all, quite lucidly and beautifully.

Mandy - your low-estrogen diet sounds very interesting - I am going to discuss that with my onc soon - I am having a biopsy of my left (non-BC) breast on Thursday due to a "questionable" mammo that I had on Monday - my first follow-up one - they saw a lot of calcifications - so of course I will be seeing my onc afterwards for the results.  She is a firm believer in alternative treatments and proper nutrition.  Thank you so much for your information and your explanation re Tamox and AIs -

Maria

Member-there are plenty of threads where people can go to to talk about the wonders of tamox and arimidex and all the other drugs. This one is titled "Does anyone say NO". So we are just saying that we would like to be able to discuss this topic without having to argue with those who want to follow the standard. Some of us just cannot or do not want to be on drugs. I for one fear the side effects of taking a drug more than I fear the return of breast cancer. Actually, I do not even fear the return of breast cancer, because I have learned there is a lot I can do to prevent it that I did not do before. I am happier and healthier than before and I believe this is the best prevention for me. For those of us in this mindset, we would like to be able to learn from each other and share our experiences beyond the standard. We respect the fact that doctors have to prescribe drugs like tamox. They do not have much of a choice. If they do not follow standard protocols, they can be sued. We, however, do have a choice. There are other ways that are proven to be just as effective, but do not have millions of $$$ in studies behind them, so they are not adopted as "standard of care", yet. Someday, I believe they will be, as more and more of us have good outcomes going this route. I respect your right to choose the drugs and I am happy it is working out for you. Please respect our right to explore other avenues.