I have had to fiddle with the times I take tamoxifen as I didn’t want to be hot-flashing at night to keep me awake. Now I take it in the evening so I get a decent night’s sleep, but it does wake me up early. Then I can flash all day if need to.

I had absolutely no complications of any kind that I was aware of. No side effects.

I am taking Arimidex. I cannot take tamoxifen, because it raises the risk of blood clots, and I have a genetic marker for blood clotting. Recently my body started producing estrogen again, so I will be having an ovariectomy (also called oophorectomy).
(Dawn, Victoria, BC)

Minor side effect: Hot flashes—wait a minute... it will pass.

My major side effect is joint pain, I feel so old suddenly. And the hot flashes, wow!
(Linda Bryngelson, New Brighton, MN)

One side affect is the cessation of menstruation (boy, that’s a tough one) and weight gain.
(Carolyn S. Olson, diagnosed at age 37)

My system began producing more insulin than my body could handle. This resulted in Type II diabetes for which I take a mild medication, not insulin, and with proper diet I have managed to get that under control. Previously I had been diagnosed with osteoarthritis, and the tamoxifen has increased the pain and swelling in my joints. It is frustrating at times, but I keep mobile and that helps. A tamoxifen positive for me has been lowered cholesterol.
(Virginia, diagnosed in 2001 at age 57)

Hot flashes are miserable. I have them sometimes every hour, 24 hours a day, worse at night. I can only suggest natural fabrics, layers, portable fans and any kind of stress reduction
activities you can find. I have had two menstrual periods since my 2nd chemotherapy and my family MD makes sure I have endometrial
biopsies once a year.

Not all tamoxifens are exactly the same. Once my pharmacist could not find me my usual generic tamoxifen and I started experiencing such huge hot flashes that they came out of my ears! I went to see the pharmacist and she said that it was impossible because the recipe was just the same. I insisted on having my old generic brand back and when I got it, everything was fine. I mentioned this to other women with the same symptoms and sometimes they realize that their generic tamoxifen was changed as well.

Tamoxifen caused weight gain. I have decided it is better to be alive and chunky than skinny and dead.
(Jennifer, diagnosed in 2001 at age 27)

I have a lot of hot flashes but, as one of my friends said, “Enjoy the heat!” When I was in my tent in Argentina on a mountain climbing expedition, and my feet were frozen, I waited for my hot flashes and enjoyed them. But, as my friends say, I am not normal. (An international team of seven women with breast cancer past climbed Mount Aconcagua in Chili-Argentina in 2004; please see http://www.BeyondTheWhiteGuard.org)
(Karen Lisa Hilsted, Denmark)

After a lot of research I decided that I wanted to take Arimidex instead. Because of the risk of bone density loss, I am also on Fosamax. I have had no side effects or problems with either pill.
(Sharron, diagnosed in 2002 at age 62)

I take Nolvadex for the fifth and last year. Since the operation, I am menopausal. This is something that is difficult to accept. There is a step in your life missing. From being a woman with regular menses you become a woman without any. Never more. No transition period. Strange. I’m sometimes very embarrassed with the flushes I have. They come unexpectedly, mostly in situations that you really don’t want them to appear (a face-to-face discussion, for instance). And I know that it is very, very visible. I’m as red as a lobster!

I refused tamoxifen. I may regret it. But I’d had enough of medicine, and reading lots of studies didn’t convince me it was any safer than the risks of recurrence I already faced.
(Judith Quinlan, diagnosed in 2001 at age 52)

I took tamoxifen for over eleven years and was told in 1997 that I should have taken it only five years. The doctors believe that this length of time contributed to my cervical cancer in 1990. Today I am happy to be a survivor.

Possibly it is making me moodier, but I can’t tell for sure if it is the tamoxifen or just the moving on after a year of cancer treatment that is causing my emotional seesaw. No hot flashes.
(Dikla, North Hollywood, CA)

No adverse side effects. I have gained weight, but I’m also four years older and think it comes sometimes with the territory.

Hot flashes were a real pain, but they have mitigated since going off tamoxifen after five years. I also experienced some shortness of breath, a less common side effect. Tamoxifen is a known bone-builder, which was important in my case because I have a family history of osteoporosis. That was why I had taken estrogen for all those years. I have lost bone density even though I drink lots of milk and have plenty of calcium. So now I take a bone-builder once a week and increased calcium.

I took tamoxifen for seven months and had all kinds of complications. I finally asked my GP to send me to the Cancer Agency for a second opinion and went off it.

I have been on it since four and a half years, and I still have heat/cold intolerance. It does give me an increased appetite. I have no solutions but to go off it which I certainly will not do, since it is keeping me alive.

I took tamoxifen and then Femara for about a year. Then the cancer stopped reacting to these estrogen blockers and found another source. At that time my oncologist took me off these drugs. I don’t feel I experienced side effects with these drugs. I underwent a full hysterectomy in May 2001 as the cancer had spread to my uterus, cervix, and ovaries. Estrogen blocking was not needed after this surgery.
(Kathy Reeve, North Vancouver BC, diagnosed in 2000 at age 32)

I took tamoxifen for 15 months and didn’t like what it was doing to me. Under the supervision of the new oncologist I discontinued it.

I’m on tamoxifen now after the recurrence three years ago. I have occasional leg cramps, but otherwise no problems.
(Bev Parker, Naperville, IL, diagnosed in 1985 at age 40, recurrence in 2001)

I took Zoladex for 2 years and tamoxifen for 3.5 years. The hardest and worst part was vaginal dryness and decreased sex drive especially since I was a newlywed. The worst thing you can do is stop having intercourse, because when you are that dry you “shrink” and then intercourse is painful. It puts you in a vicious circle that leads you to not having sex. I wish someone had told me that ahead of time. Still difficult for me physically and emotionally. You and your body get used to not having intercourse, and it’s tough to start again.
(Julie, diagnosed at age 26)

Tamoxifen may save my life, but the drug side effects suck. I’m 44 years old, and for the last 4 years I’ve suffered the effects of menopause without actually going through it. Night sweats, hot flashes, emotional instability. And to think that a tiny little pill is making me feel like an alien. There has to be a better alternative for premenopausal women.

Since four years. No major side effects or complications. Makes you very hungry, must fill up on fruits and veggies. I suspect that it is responsible for my loss of libido, but will not know until I finish.

After being on tamoxifen a year, I had a routine eye exam and had developed cataracts. The doctor consulted her medical books and found out that cataracts can be a side effect of tamoxifen.
(Leslie, Springfield, VA)

Make sure you tell your oncologist exactly how you feel, since they don’t know unless we tell them.
(Peggy Scott, Waldorf, MD, diagnosed in 2002 at age 46)

I took tamoxifen unhappily. Hot flashes and feeling like I was going crazy inside my own skin didn’t sit well with me. Extreme self-care and wellness is my therapy.
(Janel Dolan Jones, Forth Worth, TX)

I was prescribed an antidepressant that some use for hot flashes. It doesn’t help so it’s just sweater on, sweater off! Also, it causes constipation for me, but it’s something I have to live with.
(Joan Fox, Victoria, BC)

The only side effect I experienced for the first six months was hot flashes. My friend called it my own personal summer. They didn’t bother me because I am always cold anyway.

I was 46 when I was diagnosed and had already begun menopause with hot flashes. I don’t really know how much or how little the tamoxifen contributed to them. When I got a really bad hot flash I would either go outside or stick my head in the freezer depending on the time of year.
(Sherry Gaffney, diagnosed in 1989 at age 47)

I hate it as much as the chemo treatments. It gives me wicked hot flashes and night sweats and there’s many a day when I’m cranky. These hot flashes are a lot worse than the menopausal ones I went through. I also get leg and foot cramps, but I find that if I eat bananas most days, I don’t get them. Due to the tamoxifen stopping the production of estrogen in my body, I have atrophic vaginitis and intercourse is very painful. Definitely a complication, I’d say. The flashes catch you when you’re either in a meeting, in the car with the heat turned up and it’s minus 40°C outside, and the passengers don’t understand that I’m burning inside while they aren’t. Great conversation piece! A couple of ladies at my support group don’t have the flashes (Chinooks we call them), although one had had them for about 4-6 months, then nothing. Lucky her.
(Cheryl Otting, Elkford, BC, diagnosed in 2002 at age 52)

Unfortunately, Arimidex gave me joint and bone pain so I returned to tamoxifen. Hot flashes, mood swings, and body fatigue. But I have not found an alternative.
(Lorraine Zakaib, Kirkland, QC, diagnosed in 2002 at age 49)

No complications. Side effects: initially extreme sweats—at night, in the middle of the day, every 45 minutes or so. Also, weight gain and a strange sense of euphoria—situations at work that ordinarily would have had me being upset about, I found myself laughing over especially if my boss was fussing at me for something. I am taking prescription drug for hot flashes, and it helps a lot.

I couldn’t take tamoxifen because I have a history of deep vein
thrombosis. The doctor prescribed Femara instead. The side effects
include depression and hot flashes, but I am just relieved I can take something to help prevent recurrence.
(Marilyn R. Prasow, Long Beach, CA, diagnosed in 2001 ate age 60)

I did not have to take tamoxifen. If I wanted to I could have, but it was not a recommendation for my regime. If someone wants to do everything possible and would feel better psychologically doing everything available you could. We really can make our own choices. I felt personally for me the risks outweighed the benefits.

Antidepressants help with the flashes and my ability to function and cope with daily life.
(Deborah, diagnosed in 2002 at age 46)

Five years of tamoxifen. I can’t remember any side effects.
(Esther Matsubuchi, North Vancouver, B.C. )

I originally refused Tamoxifen b/c I was uncomfortable with the risks. This year my tumor marker was very high, so my oncologist recommended I think about it again to bring the marker down. In just a few weeks on tamoxifen I've had leg cramps, severe shortness of breath (like a panic attack) and mood swings. My hot flashes are more intense but not more frequent than before. Has anyone else experienced the panic attack/short breath? Its very scary, and I'm worried about heart problems after taking Herceptin for a year.

If my marker goes back down to normal, I will stop taking it again. I hate being on drugs.

I'm 3 weeks out from unilateral mastectomy for DCIS. I'm scheduled to see an oncologist next week to get on tamoxifin. I'm terrified of the side effects, and have read about some natural alternatives: Indole 3 carbinol, estriol, lignans, red clover and progesterone cream. Has anyone out there refused tamoxifin and tried any of these natrual suppliments instead?