What problems have you had with Tamoxifen?

If it's any consolation, radiation is light-years better than it was even 10 years ago. I know five people who've had external beam radiation, for example, without damage or bad side effects or regrets. I think my concern would be whether a facility was using state-of-the-art equipment operated by very well-trained people. If it would help, consult first with the radiologist (M.D.) who would be doing it.

As to drugs, none of them are virtually without possible side effects. But tamoxifen has been used for a long time and the possible side-effects arebwell-known and can be watched for. I worry more about new drugs with glossy ad campaigns and teeny weeny print listing (only so far known!) side effects. Or TV commercials where they are stated at 200 times the ability of the human ear to understand.

But, yes, we still need some bad guys to fight a bad guy (cancer) but if aspirin alone would do the trick...well, science isn't there yet. A friend of mine pointed out that the only reason I had breast cancer is because I didn't die first as I would have in a previous century or a place without medicine to treat stuff that came before it. I have a darker sense of humor or just appreciate irony but it gave welcome perspective at the time.

Thanks for this information. It makes me feel a whole lot better about the radiation part of the treatments. I will go into it with a better outlook now. I had the appointment with my medical oncologist yesterday. It is a teaching hospital, so all the appointments I have had so far involve much more time with the students than with the Doctors themselves! The student I had yesterday was a very kind young man and I think he will make an excellent oncologist when he is done. The actual oncologist did not seem to have as much empathy although she comes highly recommended. She wants to put me on anastrozole - an aromatase inhibitor - instead of Tamoxifen. The side effect list is very scary. I am wondering how many people have taken it without side effects or little side effects? Anyway, thanks for your input, it has definitely helped ease my mind about the radiation.

I also had problems with Anastrozole, my doctor switched me to Tomoxifin. I broke out in severe hives. I must be allergic to something in the Tomoxifin. My doctor took me off everything until the hives subsided. Then she put me on Exemestane. I’ve been on that for two years now and it’s ok. I don’t think any of these drugs are free from side effects. However, I certainly don’t want breast cancer to return so I put up with the inconvenience of annoying side effects. It’s like permanently being in menopause!

I so understand your fears. I had a lumpectomy last Friday and my surgeon breezily told me next is radiation five days a week for six weeks and then anti-hormone meds for 7-10 years. I’m 67! I don’t want the next ten years of my life to be miserable. I have degenerative disk disease and had a fusion 10 months ago. I really don’t know what to do.

Glad that you're less worried about the radiation. Anastrozole and the other aromatase inhibitors have some side effects, the one that is pretty much a given is accelerated loss of bone density from the depletion of estrogen in the body. The actual rate acceleration differs among people due to body chemistry, age, existing bone density and other factors. I'd try to get a DEXA scan if you don't have a current one so you have a baseline pre-anastrozole picture to measure future DEXA scans against. And be prepared to explore drugs to prevent or treat osteoporosis if that is an issue. (That might sound onerous but the regrets of people who weren't adequately informed about anti-osteoporosis strategies when on aromatase inhibitors is a major cautionary tale. I'd also tell my cardiologist so s/he will keep a more-frequent watch for any change in cholesterol levels at a minimum. I regret if that sounds discouraging buy tamoxifen is harder on the body (risk of DVT and related cardiac events) so anastrozole is a gentler drug in many ways though be prepared for some arthaligia. If you don't encounter it, great.

If you didn't get genetic testing using the excised tissue, it's likely not too late. I had the OncotypeDX test (of 21 genes) and the result was a 3% 'risk of loco-regional recurrence within 9 years' if I took an aromatase inhibitor or tamoxifen. That translates to a 5% risk if I do not using the current thinking about estrogen-positive breast cancer that adjuvant therapy can reduce the risk of recurrence by about 42%. In a case, I didn't think that the risk of faster bone loss or possible change to endothelial was worth the 2 percentage point reduction in risk. But that's a very personal quality of life decision as I'm older and not from a family of people who routinely lived into their 90s. And most died of heart disease so elevating cholesterol when mine cannot be controlled by statins got my attention.

In mid-2000, I was diagnosed with an estrogen-positive breast cancer. I had a lumpectomy for a very small tumor, chemotherapy (my oncologist recommended because I was "young"—only 45 and he thought it would be in my best interest) and in 2001, started Tamoxifen and 6.5 weeks of radiation. About 10 weeks into taking Tamoxifen, I started having minute-to-minute, intense sensations of freezing, then burning up—the Tamoxifen was doing its job and binding to the estrogen in my system and putting me into a chemically induced menopause. I was put on 25mg, regular-release Effexor (venlafaxine) to control these "hot flashes."

In late March 2004, I woke up on a Sunday thinking I had a "charlie horse" in my right calf. Nothing eased it and by Wednesday noon, I was at my regular doctor's for muscle relaxers. He knew I was on Tamoxifen and even though my leg was NOT red, NOT hot, NOT swollen, he sent me to the local hospital for a sonagram. Within minutes of the test, I was whisked to the ER and was given several shots of Lovenox (a blood-thinner) and admitted. I spent 8.5 days in the hospital, getting Lovenox shots twice a day as well as oral warfarin (another blood thinner). ). I was on warfarin for a year and had blood taken weekly to monitor and adjust the dose.

While there, they discovered that I had anemia—I had been having HEAVY periods for several months with little, or no pause between. I had a vaginal exam and some uterine biopsies taken. I had developed uterine cancer and needed a hysterectomy. Fortunately, all cancer was contained within the uterus.

Both the leg blood clot and uterine cancer were attributed to my Tamoxifen use. As soon as I was admitted to the hospital for the DVT, my oncologist took me off Tamoxifen.

Sometime after the hysterectomy, I was put on Aromasin (after all, I was now post-menopausal). I stayed on that for another 5 years until my oncologist said no further benefit would come from taking it any longer. The only real problem I had on Aromasin was that from the VERY FIRST dose, I would "urp, urp, urp" all night long after going to bed—no acid reflux, or burning in the throat, just "urp." Careful reading of the teeny print on the multi-page drug info sheet that came with the Aromasin did show “dyspepsia” as a possible side effect. That side effect went away about three months after discontinuing Aromasin.

Thank you so much for this information. I have read about the oncotype testing and plan to ask my surgeon on Monday when I go for my follow-up. I appreciate you sharing your perspective. I, too, am older and while I want to live a long life, I don’t want it to be a miserable life, either. Thank you again

There are other genetic tests for breast cancer. I don't know much about them but others might post about them. I think the OncotypeDX is the most-widely used. It's basically used to predict recurrence of the cancers that fit its criteria as a basis for determining whether chemo would be of benefit. [In a sense if the risk/reward ratio favored chemo.] Getting a low risk was good news and the two oncologists I saw both think it reliable.

I am going to be 72 this coming June. My sister just died last Friday of triple negative breast cancer. Monday would be the one year anniversary of when she was diagnosed. My mom died of breast cancer at the age of 77. My sister was 77. If I am only slated to live another 5 years, which would make me 77, I don't want to spend my time in pain and being a sick person trying to fight side effects from drugs. So, I will likely take the radiation, but I am going to probably skip the Anastrozole or the Tamoxifen because I don't need to be fighting against the side effects. I am still thinking about, and am going to explore Artemisinin to see if it has less side effects. I don't really care if it is not yet proven by a whole pile of studies - at some point Tamoxifen and all the AI's were in the testing phase also. I guess my outlook is different than a lot of younger people - If I were 20 years younger I might feel differently.