true confession struggling with hormone therapy

Ask your MO to tell you what he/she believes your overall benefit is by completing endocrine therapy. My best guess is it will be around 5%. I base this on checking your numbers with Cancermath website http://www.lifemath.net/cancer/breastcancer/therap...

I just plugged in the numbers in your signature line & guessed at your age. Look at the graph in pictogram form. Plug in chemo only & then chemo+AI. It shows about 4 women out of 100% will be helped by adding the AI.

I'm in a different predicament. My numbers are similar to yours, but I declined chemo. The percentages I was given by my MO, were that endocrine therapy alone would help me more than chemo alone. Adding chemo to the mix would only give me an additional 5-6% benefit. Even if my cancer comes back, there is no way of knowing if the additional therapy would have helped. My MO used Adjuvant online, a program that was intended for doctor use only. Many of us here at BCO, found a way to log in & look at stats. They put a stop to that.

Since I didn't do chemo, I really feel I need to try to complete 5 years. I'm 4 years into Tamoxifen. It's going to be a long year for me.

Others will be along to disagree with me, but I don't think I'd continue with an AI in your shoes.

No you are not alone!!! I stopped letrozole after a year due to severe side effects (I needed help out of a chair I was so stiff) including breathlessness, exhaustion and all sorts. I took a break and started Exemestane. Took that for 18 months but stopped it in July due to side effects,same as on letrozole but with active lung probem, now resolved. My hip joints feel worse since before I took any AI´s but better than when taking them and I at least get some sleep now so I feel rested. Sleep disruption, mood disruption, mobility disruption were all badly affected...... Have now been given Tamoxifen but have decided I am not going to take it, I will try Arimidex if I can get back to a doctor to start it............so please don´t feel alone. The benefit I might get from hormone blocking is either 35% or 15%, I am not sure which ...........if I knew it was 15% I would stop the meds for good as quality of life matters......not just surviving

I feel like a bad patient but i refuse to feel guilty because I am not doing what the doctors want. I could not sleep on tamoxifen, felt awful and quit. My PCP pursuaded me to try Effexor generic to help me go back on tamoxifen although hot flashes was not the issue. Exhaustion was. Effexor was the worst decision. I had gotten back to the gym 3 times a week after quitting tamoxifen and just went completely down hill on Effexor. Could barely get out of bed. Lost all motivation. Quit that and went through withdrawal side effects for longer than I actually took it. Finally feeling a bit better and new ONC asked me to give Arimidex generic a try. Bone density test showed me to be osteopeonic but I started the Arimidex and although I could sleep on it I have been constantly tired, with stiff tingling hands and feet , weakness generally and especially legs after the first month. My brain felt foggy too. The required exersize for my boned instantly went out the window.

I finally stopped everything 2 weeks ago and I am not taking anything more. I joked to somebody at work that I felt like half a brain sitting on top of a lump of lead. I felt like I was taking meds because the docs want me to live as long as possible, regardless of if I am actually living. I am 60 and QOL is everything. I started doing my bucket list, just in case. On the meds it would never get done.

Have been told my chance of recurrence is around16% without meds,8% with. Chance of me enjoying life on meds 0%. From now on whatever happens, happens and I am not going to beat myself up if the cancer comes back. All I want is to feel well enough to do some things I enjoy. I would take a year or 2 of that over years of taking pills to extend a life I don't look forward to. Just me...Not usually so gloomy LOL

The truth of the matter is only 50 percent of women take anti hormones for the whole 5 years due to SE. This statistic was confirmed by my MO. She also had the nerve to tell me there are NO side effects from them!! Are you kidding me?? I think its really sad that any doc would make you feel like these SE aren't real. Its the standard treatment and thats all they care about. QOL doesn't seem to matter to most of them. Well it matters to me! I have been looking into alternatives with great promise. I invite anyone who is interested to PM me. Im not sure why we can't have an honest discussion about the anti hormones on the public forum, but I have learned that we can't! Good luck to all of you....

I posted a similar topic awhile back.....I just can't do it. I stopped taking tamoxifen in july after depression got so bad I was in bed crying to my husband that wanted to slip away. I knew it was the tamoxifen and it was a horrible feeling. I've dealt with insomnia, fatigue, aches and pains, brain fog and mood problems. Oh and ears ringing like crazy.

I finally went to a new MO this month and I "confessed" the truth became I felt scared. He is looking at alternatives for me.

This stuff is hard to take, and I'm no whiner either.

I don't know the answer it sucks.

I'm not nearly as far along the hormonal path but I am really struggling. Tamoxifen made me very sick. I am scared to tell my MO because he said he thinks the SE are all in women's head! I may need a new MO.

I am having a really hard time justifying feeling so bad for 5 years. I only had DCIS and I've had a hysterectomy. I was on estrogen which I'm not anymore. I'm 100% convinced the estrogen caused the DCIS or caused it to grow rapidly. The Drs say the tamoxifen is for my other breast not the treated one since I did lx plus rads. From what I've read my risk of contra lateral BC after DCIS is .5% a year and tamoxifen lowers it to .25% a year

Also if my risk of contra lateral BC is so low it doesn't warrant a bmx, then why do I have to take tamoxifen?

I'm really struggling....

marijen,

I congratulated the surgeon on being able to do that and he said it wasn't him really, it was that I had amble tissue to work with. You can hardly tell I had something the size of a bar of soap removed.

What is with these MOs? My MO seems relieved every time I tell her that hormone therapy is going OK. She knows that many of her patients struggle with Tamoxifen and AIs.

jen1 -- does your MO have a nurse? When I was having problems with moodiness from Aromasin, I called MO's nurse. She was very sympathetic and talked to MO about possible solutions. She set me up with some Celexa, which does the trick. By the way, my report said that I'm 95% ER+, so I have a little extra motivation to keep up with the program.

I've been on three AIs and had terrible se's on them all - I've had people on here try to tell me and others not to tell the truth because it would scare the "newbies" that's why every time someone gets on the Arimidex thread to complain or ask for help they get inundated with the message that they need to stay on the meds no matter what, etc., etc. I am now Stage IV and I am o.k. with that as are my onc and my PCP because I am soon to be 70 years old and QOL is everything. I must say that any drs. who say the se's are all in our heads need to be fired by us - that is just so offputting and frustrating!!!!!

I must admit...I used to come on here after I started taking tamox and think what is everyone complaining about this isn't so bad. I truly have been ok on tam - bad hot flashes and menopausal symptoms mainly. My onc wanted me to switch to AI plus Lupron due to SOFT study results. I was on Femara for a few days and I seriously thought WTH just happened????? I had vertigo, nausea, bone and join pain so bad I could barely walk...Aromasin was no better. the AIs are truly horrible for me. I am struggling now and feeling guilty being back on tamox as I know the AI gives me a slight advantage. Its such a hard decision and until you experience what its like you cant appreciate how hard it is to live this way. I will give it another go but Im seriously dreading it

hoping this road gets easier for all of us..

I do have a hard time on arimidex. I also get a Zoladex injection every month. I'm a stay at home mom so I get my naps! I'm 44 and have been on it almost 2 years. I lost a lot of bone density, too. You can see from my history that ... I'm pretty desperate to do what ever it takes. I finally decided that if I need to feel fairly miserable in my 40s to be around for my 50s and 60s, I'll do it. My MOs are good to me; I do not feel dismissed. I hate that there are MOs that say there are no side effects! What jerks. I don't blame anyone for carefully analyzing the benefit of a diminished QOL

kayb did you have surgery? i don't see it? Yes, I wanted to think my Femara was working because of the sides. There goes my theory

Hi Jen,

I am coming up on 5 years and I must say that the worst part was the first year. I am not saying that you should follow my course of action - we all have to make our own decisions and we are all on our own journey. I just want to offer a couple of thoughts. First, if your onc is not acknowledging your side effects, that is demeaning and demoralizing. Consider firing her/him. The onc that got me through chemo was very good- very respected, but he was not for me when I was post chemo. He just dismissed me and had his staff deal with me, who, in turn, dismissed me. I moved on to an onc that worked with me through all the side effects.

In retrospect, I cannot say how much of my first year of hell was caused by post chemo side effects and the need for my body to regenerate and how much the Arimidex contributed to it. I do know that I had classic symptoms from carpel tunnel, major arthiritis to depression. I wanted to quit but was scared to do so. I had two young kids (they are teenagers now) so I worked with my onc to manage the side effects - took, and still take, but to lesser degree, pain killers and anti-anxiety meds. I work out a lot which keeps me sane. I have gained weight, so that is the way it is for me.

After a year and a half, I switched from Arimidex to Exemestane and found the journey easier - not easy but not as much pain. I think if you consider the whole 5 years, it depresses you. Consider 3 months at a time. That is how I talked myself into the first 2 years.After that, my memory is so bad, I can't remember.

Whatever you decide, I know that it will be the right one for you.

Best,

Beau