Topic: deciding whether or not to do hormone therapy

Hormone therapy not only helps prevent a cancer from occuring in the other breast, but helps prevent distant recurrence as well. Our risk is low with negative nodes. But, there is always a chance that a few cancer cells got into the bloodstream (or an undiagnosed lymph node) and decide to take up shop elsewhere. Hormonal therapy helps to nip those in the bud. 

My doctor has tried to teach me that doing Hormone therapy (for me, an AI) is the most important part of my treatment plan.   i am not afraid of another breast tumor... been there - done that ... I am taking it because I do not want mets!

Any side effects are a small price to pay if they work.

Pam 

For ER+ woman, anti hormone meds, tamox or an AI, are just as if not more important than chemo. Just like another poster said, it prevents developing a NEW breast cancer in the healthy breast and prevents a recurrence up to 50%.

I think any ER+ woman should be on it, unless it is causing such trouble with QOL.

Your lucky to be ER+, triple negative sisters would jump at the chance to take Tamox.

Once praised for its benefits in preventing breast cancer recurrence, the lucrative pharmaceutical drug tamoxifen is now implicated in causing dangerous side-effects, including other types of cancers.

In the early 1970's, a shameful chapter closed on the widespread use of a known carcinogenic and endocrine-disrupting drug called DES (diethylstilboestrol), the first synthetic, non-steroidal estrogen drug. Against the advice of its creator, Sir Charles Dodd, between four and six million American and European women and 10,000 Australian women innocently used DES for the prevention of miscarriage and pregnancy complications.

In addition, DES became a popular though unproven drug for a variety of other conditions. It was used for the suppression of lactation, the treatment of acne, the treatment of certain types of breast and prostatic cancer, and as an inhibitor of growth in young girls, an estrogen replacement in menopause and a "morning after" pill.

It would take 30 years to accept what laboratory tests had indicated as early as 1938 - that DES was a highly dangerous and harmful drug. It was reported that, 20 years after taking DES, mothers had a 40 to 50 per cent greater risk of breast cancer than non-exposed mothers. In addition, the children of DES mothers showed a high incidence of reproductive abnormalities, miscarriages, vaginal cancer, testicular cancer, sterility and immune dysfunction. In fact, it is feared that repercussions of this drug will be felt for generations to come.

The irony of this entire debacle is that the medical establishment finally acknowledged that DES was useless in preventing miscarriages. Thus, DES, another disastrous experiment on women, was added to the long list of major medical blunders.

Out of this early research, a new drug appeared on the horizon which would be soon be heralded as a shining star in the war against the growing epidemic of breast cancer. In the late 1960's the pharmaceutical industry developed a drug called "tamoxifen". As a synthetic, non-steroidal compound with hormone-like effects (many of which are poorly understood), tamoxifen has a similar structure to DES. In fact, it was observed that tamoxifen caused the same abnormal changes seen in cells of women taking estradiol and DES. (1) This similarity raised alarm bells for some.

Pierre Blais, well known as a drug researcher who was ejected from Canada's health protection bureaucracy when he spoke out about silicone breast implants, describes the story of tamoxifen as "the story of modern drug design which produces garbage drugs". He says, "Good drug design ceased, unfortunately, in the 1930s." Tamoxifen, Blais asserts, "...is a garbage drug that made it to the top of the scrap heap. It is a DES in the making." (2)

Blais's dire predictions were ignored with the promise of a potential drug treatment for breast cancer. Tamoxifen was first approved by the US Food and Drug Administration (FDA) for use as a birth-control pill; however, it proved to induce rather than inhibit ovulation. Although tamoxifen didn't work as a contraceptive, it was found to lower mammary cancer rates in animals. Animal studies showed that tamoxifen prevented estrogen from binding to receptor sites on breast tissue cells. Tamoxifen also reduced the incidence of breast cancer in rodents after administration of a breast-carcinogenic substance. This discovery provided the impetus to study its effects in treating human breast cancer.

Estrogen is the common link between most breast cancer risk factors, i.e., genetic, reproductive, dietary, lifestyle and environmental. It both stimulates the division of breast cells (healthy as well as cancerous) and, especially in its 'bad' form, increases the risk of breast cancer. Thus, hormonal drugs such as tamoxifen that block the effects of estrogen on the breast were expected to reduce the risk of breast cancer recurring in women treated for breast cancer. (3)

Tamoxifen acts as a weak estrogen by competing for estrogen receptors much as phyto-estrogens do. Like phyto-estrogens, tamoxifen has mild estrogenic properties but is considered an anti-estrogen since it inhibits the activity of regular estrogens. More accurately, tamoxifen is an estrogen-blocker. It fights breast cancer by competing with estrogen for space on estrogen receptors in the tumor tissue. Every tamoxifen molecule that hooks onto an estrogen receptor prevents an estrogen molecule from linking up at the same site. Without a steady supply of estrogen, cells in an estrogen-receptor-positive (ER+) tumor do not thrive and the tumor's ability to spread is reduced. (4)

However, tamoxifen exhibited two conflicting characteristics. It could act either as an anti-estrogen or as an estrogen. Therefore, while tamoxifen is anti-estrogenic to the breast, it also acts as an estrogen to the uterus and, to a lesser extent, the heart, blood vessels and bone. So, although it initially showed the tendency to counter breast cancer recurrence, it would soon be revealed that it also promoted particularly aggressive uterine and liver cancers, caused fatal blood clots and interfered with many other functions.

Doctors, however, were quick to jump on the tamoxifen bandwagon, turning a blind eye to its more injurious tendencies. Starting in the 1970's oncologists began using tamoxifen to treat women with cancer, often in combination with other drugs, radiation or surgery such as lumpectomy and mastectomy, with modest success. Like DES, tamoxifen's benefits were then extended for use as a preventive against osteoporosis and heart disease.

Today, doctors are treating about one million American breast cancer patients with tamoxifen, about 20 per cent of them for more than five years. As studies published in the New England Journal of Medicine in 1989 and the Journal of the National Cancer Institute in 1992 showed, women with breast cancer who took tamoxifen reduced their chances of developing cancer in the other breast (contralateral cancer) by about 30 to 50 per cent. (3) These findings would later be challenged.

Tamoxifen is now recommended for all pre-menopausal women with hormone-positive cancers, as well as for most postmenopausal women with breast cancer and/or a growing number of women with hormone-negative cancers. Tamoxifen is currently used by more women with breast cancer than any other drug. (6)

Tamoxifen (brand name Nolvadex) is now the most widely prescribed cancer medication in the world. It generated revenues of US $265 million in 1992. By 1995, worldwide sales of Nolvadex reached $400 million. (7) And at AUD $90 for one month's supply, it doesn't come cheap (the Australian Pharmaceutical Benefits Scheme covers $70).

Tamoxifen was developed by UK-based Imperial Chemical Industries (ICI), one of the world's largest multinational chemical corporations. Zeneca, an ICI subsidiary, is responsible for manufacturing and marketing the hormone and is now the world's largest cancer-drug company.

It is no surprise that ICI's profits come from playing both sides of the cancer industry. ICI's agrochemical division, which includes Zeneca, manufactures chlorinated and other industrial chemicals including herbicides. All are poisonous, and many are known endocrine-disrupters that have been incriminated as causes of breast cancer. ICI's profits swell by manufacturing chemicals that on the one hand cause breast cancer, and on the other hand reputedly cure breast cancer.

Link to the entire article http://www.all-natural.com/tamox.html

I don't understand why that loooong article says that "tamoxifen is now implicated in dangerous side effects."  Now?  We've known about the side effects for over 20 years.  Maybe for some women it isn't worth it, fine.  But this "poison" as that article referred to it, saved my life.  It allowed a woman I know with mets to live for many years without progression.  The article makes it sound like its a crime for the pharmaceutical companies to make money off tamoxifen.  Why?  Its actually a great, life-saving drug. 

There is some outdated information in the looooong article posted above:

"Tamoxifen is now recommended for all pre-menopausal women with hormone-positive cancers, as well as for most postmenopausal women with breast cancer and/or a growing number of women with hormone-negative cancers. Tamoxifen is currently used by more women with breast cancer than any other drug. (6)

"Tamoxifen (brand name Nolvadex) is now the most widely prescribed cancer medication in the world. It generated revenues of US $265 million in 1992. By 1995, worldwide sales of Nolvadex reached $400 million. (7) And at AUD $90 for one month's supply, it doesn't come cheap (the Australian Pharmaceutical Benefits Scheme covers $70)."

First, tamoxifen is no longer the treatment of choice for post-menopausal women with breast cancer. It might have been when that article was written, but it has been replaced by the aromatase inhibitors. They work better in post-menopausal women and pose a lower risk of blood clots and uterine cancer.

Second, the value of tamoxifen in women with ER- PR- cancer is far from resolved.  To say it is being used in a "growing number" of women with receptor-negative cancer is probably not true.

Third, tamoxifen is no longer manufactured under the brand-name "Nolvadex". In fact, if I'm not mistaken, it is only available in generic form.  Which leads to..

Fourth:  tamoxifen certainly does "come cheap."  A one-month supply can be purchased from WalMart and many other pharmacies for ... get this:  five dollars.  That's the price charged for many generic drugs these days, even for people without drug coverage in their health insurance.

michele37, if you'll disclose your age, I can look up your recurrence risk in Adjuvant!Online, an on-line risk calculator lots of docs use.  I think the rest of the information needed for the calculation is in your sig line. Adjuvant!Online provides the risk of distant recurrence (mets) with or without chemo and with or without hormonal therapy.

otter 

I mean this in the nicest way, but it would be really foolish to turn your back on hormone therapy without even trying it. And for every person who has yucky side effects, there are people who are not bothered at all.

-Tricia

SWIMANGEL72 - Thank you so much for your kind words!!!!!!

Hi Michele37,

If you are undecided about hormone therapy why don't you just give it a try - if it is really compromising your quality of life go off it.  You don't know how a drug affects you until you try.  Everyone and everyone's bodies are different.  I have virtually no side fx from tamoxifen and life is good, really good - things were pretty rocky to start with but I still to this day don't know whether it was tamoxifen or this crazy old crappy ride we are on.  I am premenopausal (47) but I have friends going through menopause and they are suffering from similar side fx to what I read here.  One is on antidepressants and another is on HRT (yes I know it freaks me right out) because her symptoms are just unliveable.

Good luck with your decision. 

big hugs

Helena

I fall in with HelenaJ -

If you are at all concerned then try hormone thearpy. If you hate it you can quit.

A person can fixate endlessly on the "risks." Hormonal thearpies also have a PEACE OF MIND benefit. You take it -- you're doing all you possibly can! 

You can take vitamins, you can take supplements, you can avoid photoestrogens, you can lose weight, you can do the gazillion things that the media likes to hype as breast cancer risk reducers, but in the end hormonals are the only thing that have actually been tests on millions of women.

So why not give them a spin? You'll have a chance to reverse your decision every single day. 

I wish that I knew what the chance of a recurrence outside the breast is if I opt out of hormone therapy.

My mom had one masectomy at 60 and then another one at 70, no radiation, just surgery, major surgery and she was left with few lymph nodes. No pills. She exercised, ate lots of salads, drank a daily cocktail, and had a great life. She lived until 98. Just before her death, congestive heart failure, her lymph built up terribly in her arms.

I had a lumpectomy and radiation at age 60 and am now taking arimidex. I am hopeful this may be the end of my breast cancer story. That's why I am taking that little pill every a.m. It's always a gamble. As we age, it is all a gamble. 

 I am a DES daughter ( with TMJ Too ) and so the decision to do hormone therapy is huge for me.

 I have decided to put myself in 'training' for 3 months and start Arimidex on Feb 1.

I took myself to see an oncology dietician  and she is helping me switch to a plant based diet to help me lose weight and drop my saturated fat and estrogen exposure. I am walking 2-3 miles a day in the hope of losing 10 pounds by Feb. I went and saw an endocrinologist yesterday who is helping me with my low vitamin D problem. I am taking prescription Vitamin D for 6 months.  I had a DEXA bone scan done as a baseline. Saw the GYN for an ultrasound to see the depth of my endometrium (lining of the uterus.) 

The endocrinologist said there are various ways to do the bone building drugs (bisphosphonates)  if I end up needing them, to minimize the potential of the jaw necrosis in TMJ patients.

There is some suggestion that DES daughters should take the aromatase inhibitors not tamoxifen as tamoxifen acts as an anti-estrogen in the breast but a pro-estrogen everywhere else which isn't good for DES daughters . I guess it increases their risk of endometrial cancer but I am not certain of that. 

So I have decided that given all the pluses and minuses that I will Take the Vitamin D and calcium, lose 10 pounds, up my exercise and change to a plant based diet and then on Feb 1. I am starting the drugs.

That way I have made the best decision I can with the current information available and the advice of a group of highly trained doctors. My doctors have all said the same thing. Get you Vitamin D up into the normal level ( hopefully 50) , be strict with your diet and exercise and then take the drug. 

So that is what I am going to do.

Roseann, if your doctor writes a 'letter of medical necessity' your insurance will probably cover the yearly bone scan. 

Thaanks Elimar...So out of that 16%, I wonder what percent of distant recurrences happen in the other breast and what precent happen elsewhere. I left a message with the question for my onc last week but I have not heard back from her. How is your day three of tamox going? I have moved the prescription from a drawer to my kitchen counter.

Thank you j414 and Elimar. From my understanding, the Oncotype DX test does not differentiate between a contralateral breast cancer and a distant recurrence. I was told that by my oncologist, my surgeon and my radiologist. Please correct me if I am wrong. If the chance of recurrence is 16 percent(without the tamox) , I am just wondering how many of those 16 people had a contralateral breast cancer and not a recurrence that spread to the bone, liver, brain etc.