Time for me to fess up

ME TOO!

I was on tamoxifen, then Arimidex, got permission from my oncologist back in March to go on a medication vacation for a month, well here it is May and I haven't gone back on the arimidex and don't plan to.

I see my oncologist in a few weeks, don't know what she's going to say, but I don't think she'll change my mind. I'm 2 and a half yrs from diagnosis and I really agree, if it does come back I don't believe that taking or not taking hormone therapy will make any difference at this point. It's not only the side effects, intellectually I still can't wrap my mind around the whole concept or wisdom of estrogen depletion.

A lot of women say "I thank God for these meds that are keeping me alive."  Well, I'm a very spiritual person too, and the thing I know is that God didn't give us these meds, the drug companies did. What God or Nature gave women was estrogen, and bulldozing it out of our bodies results in devastating effects. To believe that depleting our bodies of estrogen will prevent cancer, one would have to believe that God made a mistake putting it there in the first place. I don't buy it.

So good luck to all who have made this decision.

Scorpio

I've been dragging my feet on getting the tamoxifen metabolizing test.  It was supposed to be done when I had my genetic testing in February, but the lab screwed up and didn't take enough blood.  I have still not gone back to get the test.

Tried Femera and Arimidex and the SE's were too debilitating. I don't know if I am doing the right thing, but sometimes look at the lab mess up as divine providence.

I have stepped up my already very healthy routine since dx, almost a year ago.  So far so good, but I do fear if it comes back, I will kick myself.

Tender,

I also had the racing heart, and nervousness, and headache when I FIRST started taking Synthroid.  BUT, even though my drs. were idiots, and they were NO help at all, I hung in there, and started cutting my pills into about 8 pieces, and taking 1/8 of a pill every morning...  after a couple of weeks, I would take 2 of those little pieces every morning, and on and on, until I think my body got 'used' to having thyroid hormone.  See, I believe that if we go for years without it, our bodies need to get used to having it again.

This is JMHO, but it worked for me. 

I STILL have my moments with fatigue, and I'm going back to see my pcp for another check at the end of May.  Who knows what they will find?  I think they will refer me to another endocrinologist, and I really hope they don't, since I had SO much trouble when I was first dx'd...  they were just a bunch of idiots!

Hugs

Harley 

Tender, Oh, I am so sorry your drs. are not listening to you!

I had a nurse practitioner who first dx'd me with Hashimotos...

but, the endocrinologist told me that I must be 'subclinical', and I didn't even need to take thyroid hormone at all!  Well, you can bet that I went home and LOOKED that up!!!   I KNEW I needed to take thyroid hormone, but the drs. were just a bunch of goofs!  I really have trouble trusting drs., because of this, and another instance, when I was mis-diagnosed with another condition... 

I also have found that if these auto immune conditions run in your family, you are very likely to have one, too.  AND my drs. did tell me that they like to appear in groups of two or more, so I not only had the thyroid condition, but also I was dx'd with Premature Ovarian Failure, at age 35... 

Gee, please make sure that your dr. checks your neck, to make sure that you don't have any nodules!!  My drs. are not doing that, either.  I haven't made a fuss, since I've had all the bc stuff to deal with, but I guess I'll have to remind them to do that.

Let me know how that goes...I'll be thinking of you, and praying that your dr. can get your thyroid on track!  For me, chemo seemed to HELP my thyroid, 'cause I needed LESS after my tx were done!   

Hugs to you!

Harley

Thank you ladies.  If I hear one more person get on their soapbox and tell me how selfish I am being for not wanting to take the tamoxifin or another hormone, I am going to smack them in their tushy. 

I just finished chemo last week and this thurs. have a meeting with my onc. to discuss hormone ther.  I am not very interetested in anymore drugs, anything.  Just want to exercise, take vitiams, eat healthy and live my life to the best I can spiritually, physically, and mentally.  My husband supports me either way as he has the same concerns I have.

I have a neighbor who is in her 70's, had a mastecomy, no chemo, no drugs and is more limber now then me.  For the amount of people I know who go on tamox.I also know some that don't.   I feel with the mastecomy and chemo, I feel comfortable for now. 

Thank you for posting this thread.  Its actually what I needed to read.  I thought I was the only one out there who felt this way. 

Be well -

I certainly understand your choice not to take hormone therapy.  However, for any new women reading this thread who haven't tried it, I recommend you at least give it a shot.  It has been proven in studies to reduce the risk of recurrence by 40 to 50%, more so than chemo.  If you are at a higher risk, your reduction is more substantial.  I have taken Tamoxifen, then had an ooph and took Arimidex and now Femara.  My body is getting use to the depletion of estrogen and my side effects are subsiding after 2 yrs on hormone therapy.  I also believe in living a very healthy lifestyle with good diet and exercise and plenty of rest but for hormone responsive breast cancer, reducing or blocking estrogen which causes our breast cancer to grow unfortunately seems to be the most effective treatment. 

What a pleasure to see that I'm not alone in my decision NOT to take Tamox. The prescription is on my bedside table and I wonder daily if I'm making the right decision but I think Scorpio's post says it all! I've got appts next week for diagnostic mammo (1st ever) and breast MRI. If those puppies come back OK I'll stay with my present decision. Preacher said last night, if you trust God for something as big as salvation, can you not trust Him to take care of your everyday worries? Hang on to me now please, God! It's in your hands. Again, God bless you all.

I placed a sticky note by my kitchen sink and wrote on it "circulating tumor cells" so that I can remember why I am taking a medication that has the potential to cause me so much misery.  I have to remind myself that the misery from the SEs of AIs (I am starting Femara) is ~nothing~ compared to the misery and life sentence I would be facing after a diagnosed of distant mets. 

I recall during my first meet at the ACS, a woman at my table told me her story, that she had Stage 1 BC and that she had not been offered tamoxifen and now she had bone mets.  I recall how angry she was, she looked like she was in shock and terribly frightened.  I never forgot that look on her face of disbelief. 

It is a personal decision but I had to add this as I too was ambivalent.  What I am doing is taking an Aleve each day, a Zantac and am going to do everything I can to try to get an Rx for Provigil in hopes of taking away this tired feeling I am experiencing.  I just felt so vulnerable without taking it and now at least my mind is at ease. 

AmayaM, you said it so perfectly, to "want to live, and live fully, not just survive and be miserable". I also opted for the non-tamox, non-AI route for the same reason.

After months of agonising over the decision I am now so glad I have done so. Sure, I am scared this thing will come back but there are no guarantees with BC and while tamoxifen may slow down recurrence by impeding the "growth promoter" that is estrogen, it can't actually prevent recurrence.

There are no rights and wrongs in this, only what we can each live with individually, and that varies as widely as we do as indivuals. What i wouldn't give not to have been faced with this decision. 

Louise

I'm 45 years old an I was diagnosed in january 2006. Chemo and radiation. I take tamoxifeno since september 06. I was also put into menopause by the chemo and zoladex. I know as you feel. For 4 ó 5 months I was so upset and depressed; sometimes, when I was alone, I broke in cry. But step to step (sorry my English is not very good) my body was feeling better. Now I only have joint paint, no often. Be patient with tamox, maybe no always but gennerally is good for us.    Take care,   Clara from Spain

Thanks for all of the helpful information and comments.  I am about to start radiation after a lumpectomy and then am supposed to take tamoxifen, as I am perimenopausal.  I hate to take medications, and the thought of having the effects from it that I've read about makes me leery.  I'm also afraid not to take it and then regret my decision if my cancer comes back.  I realize I still have time to find out more, and even to take it for a while and then stop, or any number of decisions that are still mine to make.  It's so easy to forget you own your own body once something like this happens.  I appreciate the opportunity to know how others are handling it.  I hope to come back to these sites regularly. 

Thanks for all of the helpful information and comments.  I am about to start radiation after a lumpectomy and then am supposed to take tamoxifen, as I am perimenopausal.  I hate to take medications, and the thought of having the effects from it that I've read about makes me leery.  I'm also afraid not to take it and then regret my decision if my cancer comes back.  I realize I still have time to find out more, and even to take it for a while and then stop, or any number of decisions that are still mine to make.  It's so easy to forget you own your own body once something like this happens.  I appreciate the opportunity to know how others are handling it.  I hope to come back to these sites regularly. 

althea and all,



I am fully supportive of every individual's personal decision with regard to hormonal therapy, including Tamoxifen in the presence of ER/PR+ breast cancer. These are tough drugs in a tough, far too often deadly disease. So, with your understanding, I hope I might address the 2 or 3 vs 5 year and beyond issue of Tamoxifen, so newbies, middies and oldies weighing the pros and cons for themselves can read what I read too, should they wish.



In answer to your question of the value of Tamoxifen in decreasing recurrence being the same in 2 or 3 years vs 5 years, I believe Tamoxifen has been clearly shown to be maximally useful in suppressing recurrence (same side, opposite side, and distant recurrence) if taken for a minimum of five years.



It's always best (except for the pharmaceuticals companies as you validly point out) for us to take the lowest dose of medicines for the shortest period of time. I agree with you too, there is far too much marketing, even on these hormonals. Too much woman beautification of the issue for me, not enough detail on how to deal with the side effects, in a tough subject. It turns knowledgeable, hurting and sometimes scared women off, and may make them somewhat cynical. I posted somewhere on this duration of use issue, 2 or 3 years vs 5 years a long time ago (I think on its low but present risk of uterine cancer) and recall being struck with the fact at the time that you gain the best deterrence of disease with 5 years of Tamoxifen.



Here is a National Cancer Institute 2001 Monograph on Tamoxifen duration, pointing to the determined value of 5 years and encouraging open mindedness for beyond five years:



J Natl Cancer Inst Monogr. 2001;(30):56-61. Links



Duration of adjuvant tamoxifen therapy.



Bryant J, Fisher B, Dignam J.

National Surgical Adjuvant Breast and Bowel Project (NSABP) Biostatistical Center, 1 Sterling Plaza, 230 N. Craig St., Pittsburgh, PA 15213, USA. bryant@asabp.pitt.edu



"The benefit of using adjuvant tamoxifen to treat breast cancer has been firmly established for patients with estrogen receptor (ER)-positive tumors, regardless of age, lymph node status, or menopausal status. Uncertainty remains, however, regarding the optimal duration of tamoxifen therapy. We reviewed the findings of randomized clinical trials that directly compared alternative treatment durations. Trials comparing short-term adjuvant treatment with tamoxifen (i.e., 1-3 years) with treatments having durations of about 5 years consistently have demonstrated additional benefits stemming from the longer therapy. Trials testing 5 years of treatment with longer durations have, in the aggregate, suggested no additional benefit for the patient. Nevertheless, the number of recurrences reported to date in these trials is not large, and the results of the individual trials are heterogeneous. Furthermore, as a result of tamoxifen's "carryover" effect, duration trials require considerable follow-up before definitive results can be established. Until more definitive data become available, adjuvant treatment with tamoxifen should be limited to 5 years outside the clinical trials setting. Continued accrual of ER-positive patients to ongoing tamoxifen duration trials, including the Adjuvant Tamoxifen Treatment Offer More (aTTom) and Adjuvant Tamoxifen Longer Against Shorter (ATLAS) trials, is appropriate. Alternatively, patients who remain disease free after 5 years of tamoxifen therapy should be encouraged to participate in trials testing crossover to other hormonal interventions, including selective ER modulators or aromatase inhibitors."



Of late, Sir Richard Peto, Oxford, England, where the original Tamoxifen studies were performed as part of the Oxford Trial, referenced preliminary results of the now 10 year old ATLAS Trial (1998-2008). He mentions the study head, Dr. Christina Davies, reports results clearly demonstrating a "further reduction in recurrence is achieved by continuing Tamoxifen beyond 5 years" [http://www.breastcancerupdate.com/medonc/2008/2/peto.asp].



This of course is new data that is going to be formally released. Currently in the US, five years is maximally recommended for safety reasons and perhaps this stance will be reviewed with time.



These drugs are very hard on we women and men with breast cancer. Not all get side effects, yet I think you're lucky if you escape at least one. Tamoxifen is a great hormonal if it works for you and not great if it doesn't work for you. Of course I recommend checking CYP2D6 blood work first, but thats because I'm an individual advocate for maximizing what I perceive as cutting edge successful outcome in breast cancer treatment; however there is always a choice there too.



I wish there was an easier route with hormone positive breast cancer. Perhaps the new clinical studies of 3 months on, one month off or so will prove fruitful in reducing both disease recurrence and side effects, adverse effects. Would not that be simply wonderful!



I believe there is great hope here yet, and I thank you for your insights,

tender