Scared of side effects -- just need to cry

I understand the feeling of being scared when facing the start of tamoxifen or an AI. I read about all the side effects and saw the posts but--- there is a but here... First of all taking tamoxifen or an AI does not have to be an absolute commitment. I realized I could start taking the drug and if the side effects were too much - I had the option of switching to something else or stopping. I am the one who decides what does or does not go into my body. Know that everyone experiences these drugs differently.

I was also 54. I decided to start taking tamoxifen and see what happened. In my case what happened was --- basically nothing.... No hot flashes (not a single one) , no memory problems, no tamoxifen caused depression. The side effects I experienced: I lost weight on tamoxifen (just didn't feel as hungry) and had an occasional leg cramp (which seemed to decrease in frequency if I exercised more.) I did have an endometrial polyp that had to be dealt with. Know that negative side effects are not a done deal. Everyone experiences these drugs differently- some of us do have bad side effects others don't.

I was also concerned about tamoxifen caused cataracts. From what I have read it is a rare occurrence. I visited my opthamologist regularly and of course told him I was taking tamoxifen. My idea was that if there was a problem it could be caught quickly.

We are here and will support you. You have come to the right place.

I hear you sister. I have an appointment in a week and a half to discuss tamoxifen. I really don't want the SEs either. My RO doesn't think I need Tamoxifen but the MO did before I had rads. I'm going to give it a try though, if the MO says to do it. If I can't handle it then I'll stop. From what I read, fir DCIS at least, there is no shown increase in life expentency from tamoxifen. But I have a family hx so I need to weigh that.

I guess you really won't know how it will effect you until you try. I too had weight gain from SSRIs but for me I'd rather be overweight then crazy with anxiety to where I can't function.

Rad girl- I second, third, fourth that you are not alone. This whole journey is so very scary. I have been on tamox for over a month. My side effect...no appetite. I actually have to remind myself to eat. So you really never know until you try what it will be like. I just take it day by day

radgal, not everyone experiences SEs with Tamoxifen. I have been taking it since April and I have 0 side effects (except for the occasional hot flash which I had before due to chemopause). No one is going to tie you down and force you to take it. You can try it, and if the SEs are too much you can stop. Of all you've benn through, Tamoxifen will be a piece of cake.

Have you looked into a BC support group in your local area? Folks in the same boat as you tend to be more sympathetic. Good luck with everything

Radgal - You are not alone! I also need to start taking tamoxifen within the next few weeks, and am more terrified of it than anything else I've gone through (including a really brutal DIEP recon). I don't have any words of wisdom, just wanted to let you know that you've been heard, and there are people who care. I'm lucky to have a good group of friends right now, but it hasn't always been that way. There was a time in my life when I relied heavily on my Internet friends, and they got me through some really dark times. We are here for you.

I'm about to try my 3rd hormone therapy drug. Tamoxifen was first, then Fareston next Evista. I was a wreck and told my onco. I'd rather go through the cancer than experience the side effects from the Fareston. sorry to skate bad news.

I have other issues though. An autoimmune disease and digression along with thyroid. I have to admit I'm scared because it took 2 weeks for me to come out of the depression I was in after Fareston. I'm 49 and had stage 1 and double mastectomy and also single.

I'm very scared whether or not I'll be able to tolerate the hormone therapy.

I'm also 54, but I'm 5 years out from diagnosis. We might be twins! I'm also single, have social anxiety and feel much better talking to people online than in person. I started taking an antidepressant at diagnosis and immediately knew I should have been on one years ago. I started with Lexapro and am now on Cymbalta. I had suicidal ideation from my mid teens to mid 20s, but not since then. I have an addictive personality, so I really have to be aware of that. People have called me anal retentive, obsessive-compulsive, stuck in my ways, etc. And there's some truth in that.

I had a very aggressive cancer, so I really wasn't as worried about the SEs - I wanted to throw everything at it! After 6 mos of neoadjuvant chemo, bilateral mastectomy and radiation, I started on Tamoxifen and hated it. I gained weight (even got a fatty liver) as my blood lipids went thru the roof. After 9 mos, I told my onc I just couldn't take it anymore. Since my periods stopped immediately after chemo, he did a test that determined that I was post-menopausal and switched me to Aromasin. I ached in every joint and felt like I was 90. After complaining for months, I was ready to stop it all. I was in tears. He convinced me to try one more (Arimidex), telling me that SEs for any particular drug were very different from patient to patient, and that just because I'd had a bad experience with two did not mean they would all be like that.

I'm glad he talked me into it, because I've had no SEs on Arimidex other than mild bone loss, which is treated with Prolia.

I never had an Oncotype because my biopsy came back triple-negative. After surgery, however, the pathology came back as weakly ER+, so I get to do the AIs, too.

Scared of my SE's

I'm 49 with a history of depression that was successfully treated with thyroid med.s and stabilized the depression about 5 years. I also have an immune deficiency I'm treated for every 3 weeks successfully.

I've had double mastectomy. No positive nodes 1.5 on one side and 0 stage on other. They didn't even suggest chemo. as I wouldn't have tolerated it anyway.

I'm on my 3rd med. First Tamoxifen then Fareston- now 3rd day on Evista.

Both Tam. and Fareston caused depression. Fareston was severe. I also couldn't concentrate and could barely function. I asked my onco. about going without the hormone tx. She said it was necessary.

I just got a decent life back a few years ago and I'm trying to resume a music career that was interrupted by this and my immune deficiency.

I'm mortified that these SE's will prevent me from having a high quality of life.