New and very hesitant to start hormone therapy

This is my personal experience with Arimidex. I bit the bullet and decided to try it. I was fearful that in myown way I was outsmarting myself by not taking what every medical professional told me I needed. One pill, that's all I took. I decided to try it at night, before I went to sleep. I was calm and actually thinking it would be a good thing. I  took a bath and went to bed. I fell asleep shortly after. Then I woke up. And went back to sleep. This repeated itself through the night interspersed with bouts of explosive diarreah. I woke up (for tenth time) and got ready for work feeling like I was on the worst kind of speed. I skipped my vitamins as I did not want any extra enhancements adding to the mix. One pill, the night before. I got to work and was hyper and of course tired, from the lack of sleep. But felt like, ok, if this is the worst, I will just take the pill very very early in the morning and then I will be able to sleep. Maybe the diarreah was stress or something. That was fine until about 1pm in the afternoon, I was standing outside talking to a friend and my left arm went numb. Like I had just woken up after sleeping on it. I shook it and commented how odd it felt. Then she looked at me and said how glassy my eyes were and I said not much sleep last night. I sat down and then my left leg was tingling. I said this is ridiculous, it must be from me being scared or something, one pill could not do this that quick. So I got up and laughed it off and went back upstairs to the office. By the time i got back my eyes were watering and I felt my head was pounding,my eyes were burning and red.I shook it off, again, saying this is CRAZY, I must be getting sick. My brain was completely spinning. My sister came over and asked me what was wrong as my eyes were so red and glassy and I was holding my arm funny. I said I did not know. I hadnever felt this bad in my life...inclduing when I go the BMX...at least when I woke up from that I anticipated something would hurt. But this was weird. Like nothing before. I called my husband and said I didn't know if I could drive home so to hang in case I needed to call him. I made it home crying the whole way. By the time I got home I was convinced it was not the pill but that I had undergone a small stroke. My neck was was sore and the left side was weirding out. My husband got home and sat withme and got me to take a hot bath. Once I sat back in the tub I got really really MAD! I said I must be nuts honey...because one pill could not do this to a person. He corrected me and said I knew better than that. He reminded me of the two times in his life when he had violent side effects following the first or second dose of two different drugs. He reminded me of the drugs back in high school that people (him and his friends,not goody two shoes me:) took and how one little pill did an awful lot. I started crying harder. I sadi what if it doesn't get better? My arm and leg are numb and I have shooting spur type feelings in my foot. My neck hurts and I my stomach is rumbling loud enough for him to hear it. I turned on the jets in the tub to massage my hold body ...and kept crying. I was too scared to take a tylonel or an ativan because I did not know if it would make &it& worse...he told me to get mad so I would not be scared...(he knows me well) so i did. I went on to say not only would I not ever take a FRIGGIN AI of any kind again but I damn well would quit smoking without adding more drugs to the mix. Somehow I had slowly started to buy intoit all...the big name hospitals and the big name docs telling me I NEEDED THIS STUFF. Now don't get me wrong...i am not a fool and if I had a more agressive cancer I damn well would do what was neccessary. BUT...this is why I had a BMX, this is why I started a regimen to suppress the estrogen naturally based on clinical trials...this is why I changed my diet, this is why I decided to stop smoking...to battle the BC so I could live a good life. So I got good and mad. Mad atmyself for not trusting my gut which has led me right since all of this began. I was mad that there untold women suffering horrific side effects so they can make some magical 5year mark while their life is compromised in so many other ways along the path to get there. NO. My sister called as she was worried about me and said she had never been so scared in her life when she saw me that afternoon. And let me tell you my sister is no alarmist and in fact would be the first one to tell me it was inmy head. She said you know, maybe that is why so manypeople can't believe you have gone through all of this...as you are healing so well and have generally been getting stronger and healthier...maybe if you had taken the AIs right after surgery like they wanted you to you might have been sicker like everyone seemed to expect you to be. And maybe you would not haveknown the difference thinking it was all part of the process of breast cancer. That you were supposed to feel like &hit. And I thought about that and I have to agree. Don'tget me wrong, I have had some rough days since the BMX but not anything like what happened to me yesterday. But if I hadnot had eight weeks of healing before trying this poison how would I know how to feel? I had never had breast cancer andsurgery before...all of the symptoms would have gotten swept up in the general Bc aftermath....Let me say this,  Ivcould never have dreamed it would hit me that hardvthat fast. I stayed home from work today and rested. As the day has gone on most feeling returned with just my upper arm and elbow and knee and heel tingling/feeling weird still. My stomach is racked. A little gross aside...I went to the restroom and after wiping...there was blood. Now I know where I wiped and have neverhad blood from my rear before in 54 years. I start screaming a bit ago for my husband and we looked it up...yep, one of the rare side effects...I missed that one in my reading..I am hoping that I had a hemi I did not know abotu suddenly decide to bleed (dont they do that? soemtimes) from all the diarreah....If it continues until tomorrow I will go to doc. But i am sick of docs rightnow. Pissed at docs right now. So here it is almost 24 hours following one dose  of arimidex. My story, my experience. No wonder so many write of their pains, I will never glossover those plaintive writings again when reading them. I truly believe none of them are exagerrating and they must feel like theya re going nuts to have that stuff start popping off in their bodies. My case might be unique and the effects extreme. I can only liken it to a poison that my body is trying to get rid of. The bitch is the drug can linger in your system for 50-60 hours. I will stick with that and not pay attention to someone who called astrazeneca and was told each dose can actually remain active within for 10-11 days. Nope. In this case I will use mind over matter to get over this mini catastrophe. And be grateful that now I do not have to play the what if game. I don't care what brand or formulation, I will not put it in my body again. It scared me and I hope I don't have lingering anything from it. God bless all of you who can handle it. I cannot.

I decided not to take Tamoxifen. On the stats my onc gave me, my risk of recurrence after chemo and rads was 18% without Tamoxifen and 12% with Tamoxifen. So two thirds of the recurrence risk would remain. If I had already had my children and was focussed only on survival I think I would have taken the pills however small the benefit. But 5 years without being able to conceive would have effectively meant no children ever for me, and that felt like too high a price to pay for a 6% real reduction in risk. 

 I also felt strongly that rather than artificially block excess estrogen I would prefer to balance my hormones naturally through diet and exercise (though if I am honest that good intention has waxed and waned, as have my hips and thighs as a result!). I am firmly convinced that estrogen dominence made the tumour I had grow. Dr John Lee's book really spoke to me - I recognised years and years of myself in his descriptions of estrogen dominance.

 So I didn't take it - the onc argued with me for a while but accepted my decision.

For a while before I fell pregnant I took I3C - it made me a bit achy and creaky but otherwise was fine, and if I were not pregnant I would still be taking it and I intend to start again after breast feeding etc is done.

It is such a personal decision. I wish you well making yours.

Sakura, I also applaud your decision.  I've seen some young women who gave up their dreams of becoming pregnant by the treatment decisions they made, all out of fear of cancer coming back.  

You are not letting the cancer control your life.  You are living your life the way you want.  I think that's the whole point of beating cancer, to be able to do things to reduce recurrence risk, but also to be able to live your life and do the things that are important to you.

And there are studies out there showing that pregnancy and breastfeeding can reduce risk as well.

Annette - So sorry for all that!!! Hear hear though and thanks for telling your story!!!

I decided not to take it.  I was not IDC like most of you, DCIS here.  The Onc backed me up completely though and said I could always try it if I wanted.  One thing she said stuck in my head forever though - the mild side effects that most people get are reversable when you stop taking it.  The rare major ones, like blood clots or cancer, you will have to treat and deal with forver.  OUCH.

So its diet, exercise and screening for me.  There was a lot more that went into my decision than I stated here, but most of the other posters touched on those.

I'll ask next time I order. I would feel a bit better about Israel but knowing I'm getting them from Walgreens I bet they are getting the cheap stuff from India.

Lago,

I watched the video, but now we're talking about criminals. I guess we never can be sure if we getting the 'real" meds.

Thank you! Regarding Zoladex, I had it during chemo as there is some evidence that having things already shut down reduces the risk of permanent infertility from chemo. My oncologist was scornful but the fertility doctor thought it worth doing so I did it. I stopped as soon as chemo stopped. Good luck with your fertility doctor.

I am new here also, and am grateful to find that there are other women who are as hesitant as I to take these drugs. I got 3 opinions, and suprisingly, despite the fact that I have scoliosis, a history of spine surgery and osteopenia, all preferred that I take Arimidex. There is no way I that I am going to sacrifice the health of my bones and fragile spine by taking something that would could put me into osteoperosis at the age of 54. No way.

I was considering tamoxifen, and asked my med onc about the risk of recurrence (based on oncotype) with and without the drug. He quoted me a 3% increased risk without the drug. I am still on the fence about this, but quite frankly, I don't think that a 3% risk reduction is worth the potential side effects and risk of gyn cancer.

IMHO, if more of us early stagers refused these drugs, the powers that would be would be more inclined to develop therapies that did not turn us into old women before our time, or force us to live a not so great quality of life!

jersey-  Like you, I am very hesitant to start hormone therapy.  Every one of our BC is unique and has different stats of recurrence.  Given your medical history and apparently good BC prognosis, I totally understand your not wanting to put yourself at added risk for osteoporosis or bone issues.  There are lots of ladies using DIM, a natural supplement that seems to function as an aromatase inhibitor.  I believe it is even in trials now.  Rather than do nothing, it might be something  to consider.  Lots of the ladies on the "natural girl" thread in the alternative forum are taking it.  Best of luck.