My Dear Meningimates and other mildly overweight middle aged and peri-and pre menopausal women everywhere,
I believe the research study below part of the Womans Health Initiative confirms my medical experiences with a low grade 2 recurrent meningioma brain tumor and the documented potential harm of estrogen hormone replacement therapy HRT for others with meningioma and the beneficial effects of a selective progesterone receptor blocking compound called Mifepristone, if they include all the past the collected clinical trial data on women like me who had early hysterectomies, other women with meningiomas. pituitary adenomas or progesterone driven fibroblastic or fibrocystic type breast cancer.
In 1986 at age 39, I had a large 5 cm meningioma brain tumor surgically removed and gradually returned to an active fulltime working lifestyle one year post-op. I had clean MRI head scans for five years and I walked regularly everyday in the art museum in the mall where I worked. And I know it is not all about me, but... In mid 1992 at age 45 I was given premarin pills (dosages now greatly reduced) and a large estrogen shot right after a total hysterectomy for large uterine fibroids and endometriosis resulting in "my instant menopause". My MRI head scan later on, the end of 1992, the sixth year after the first craniotomy, suddenly showed a rapid visible enlargement of my small remainder of residual tumor in the six months I was on combined estrogen and progesterone HRT. I immediately stopped taking the Premarin and began to read everything I could find about our hormones and other types of abnormal fibrous spindle type bundles of cell tissue in female bodies like mine. Subsequently in 1993, I found a investigational clinical trial in California SWOG 9005 Phase 3 using Mifepristone which had already shown some success in French research on meningioma and in Phase 1 and Phase 2 of this US national trial by Dr Steven Grunberg, a progesterone blocking agent Mifepristone had been used to treat recurrent meningioma without any serious side effects. I felt it must have had some success to pass the first two levels of clinical investigation in the US. So it seemed like a good alternative drug option for a younger woman like me.
I believe if I had been able to legally to get this drug in the US right after my first brain surgery in 1986 I might never have had a significant recurrence of brain tumor or needed a second craniotomy or a total hysterectomy for fibroids either, but because of religious political views limiting access to the drug for early medical emergency contraception and the newly inflated rights of pharmacists and medical doctors to refuse to supply all women with information about all known modern safe drug therapies, many other women and I were denied this drug's other major beneficial lifesaving uses for women. This compound was illegal in this country for many years and this basic medical right and individual freedom to control our own bodily reproductive system is still politically at risk today. Bush and his political allies call this drug a baby killer, but for me it has been a safe prolife medical remedy for a common low grade brain tumor. And in 2007, Corlux, another brand name of this same drug Mifepristone was given FDA orphan drug approval for other women with small pituitary brain tumors called adenomas and other Cushings disease like symptoms like weight gain around the middle, shortness of breath, weakness and fatigue.
I finally had brain surgery again in 2000 for the recurrent tumor because they told me what had formerly been a soft tumor had invaded my skull bone and the clinical trial was also closed by the NCI Data and Safety Monitoring Committee as inconclusive in late 1999, but even my AZ State Rep Jim Kolbe couldn't get me the names of those committee people from anyone to answer my questions. However while I was on the Mifepristone, brand name Mifeprex, an early option pill, my recurrent tumor remained stable for three years as documented by head MRIs in the investigational study, but an Oct 99 Ct headscan showed extensive bony involvement not mentioned in my most recent August 1999 MRI so I decided to have it removed again although it was still small and not bothering me at the time. I was scared that the bony involvement meant it had progressed to a higher grade cancer, like breast cancer that gets into the bone. Now some docs seem to write that meningioma calcification in the bone may mean it has slowed down or stopped growing... but during 2003-2004 it began to steal more vision in the bony optic nerve canal of my left eye a few years after my 2000 surgery but my condition had not shown any medically written reported change in size on the August 2004 MRI. So I spoke to my doctors again and decided to take Mifepristone again in an individual investigational study approved by the FDA since Feb 05 and I have still not had standard brain radiation which was first recommended in 1992 by the southwest tumor board and repeatedly since then by several other well known excellent male doctors around the country after my second surgery in 2000 and again in 2004.
Procrastinating and being a little bit late is one of the things I always do better than most people anyway, LOL but better late than never and safer than sorry, I usually say...especially about my health care and driving, I still get there OK without speeding and I believe my attitude has actually helped me go more slowly through current brain tumor treatments and husbands (I'm still married to the same good guy after almost 40 years) than most other good women I know. I am still foolishly postponing (or wisely saving) some new type of brain radiation therapy for later on in my life, when/and if I am too old to have brain surgery a third time, especially if my vision gets worse. I know every year I procrastinate brain radiation equipment usually gets more accurate and safer in the trained hands of skilled radiation technologists. I wonder if repeated mammography can contribute much to the total life time cummulative radiation dose, probably not anymore, but it may have in the past.
Please, after you read this article below, do not let a doctor automatically put you on HRT unless it is a medical emergency, we are each genetically unique on a normal bell curve, it is "not one size fits all" and don't let your health insurance representative or any other doctor deny you at least annual MRI head checkups after a few years of clean MRI head scans after treatment for any brain tumor condition like meningioma, pituitary adenoma, acoustic neuroma, vestibular shwannoma, Cushings disease or Neurofibromatomas 1 and NF2 which might all have some involvement with progesterone hormone growth levels IMHO, and I am not a doctor or a nurse, but some women with progesterone sensitve breast cancer with high levels of progesterone in their tumor tissue samples might do as well to ask their doctors about a selective progesterone receptor modulating compound, similar to the blocking action of the anti-estrogen agent Tamoxifin, a old "designer drug darling" of breast cancer a decade ago and the newer ones like a drug called Avistan they use now for breast cancer, which I am guessing might help control meningioma tumor growth too, at least before radiation is given.
Some of my dear meningimates seem to have a higher risk for breast cancer according to research indicating a hormone level relationship there too, and having children and more progesterone reduces the risk of some types of breast cancer. Two of my sisters, me and my Mom have all had uterine fibroids removed, one sister now has lymphoma and another one has breast cancer, so we probably inherited some type of abnormal DNA cell growth from my Dad who died of cancer or Mom who also had a rare low grade large ovarian tumor successfully removed at 80 years of age, 4 of us girls have also had gall bladder removals, I know, I know, just too much good rich food and sugar, lol. My MOM was a great cook!
Please read this recent article below....and please write back to me about your personal experiences with HRT use and if you have had breast cancer to share what you know... Many thanks in advance before I go...GBYAY Anne McGinnis Breen
New study firmly ties hormone use to breast cancer
By MARILYNN MARCHIONE,
AP
posted: 10 HOURS 17 MINUTES AGO (OPHS the date is gone, sorry I must have lost it somewhere in translation from email to blog, please always check the dates on what you read )
SAN ANTONIO -Taking menopause hormones for five years doubles the risk for breast cancer, according to a new analysis of a big federal study that reveals the most dramatic evidence yet of the dangers of these still-popular pills.
Even women who took estrogen and progestin pills for as little as a couple of years had a greater chance of getting cancer. And when they stopped taking them, their odds quickly improved, returning to a normal risk level roughly two years after quitting.
Collectively, these new findings are likely to end any doubt that the risks outweigh the benefits for most women.
It is clear that breast cancer rates plunged in recent years mainly because millions of women quit hormone therapy and fewer newly menopausal women started on it, said the study's leader, Dr. Rowan Chlebowski of Harbor-UCLA Medical Center in Los Angeles.
"It's an excellent message for women: You can still diminish risk (by quitting), even if you've been on hormones for a long time," said Dr. Claudine Isaacs of Georgetown University's Lombardi Comprehensive Cancer Center. "It's not like smoking where you have to wait 10 or 15 years for the risk to come down."
Study results were given Saturday at the San Antonio Breast Cancer Symposium.
They are from the Women's Health Initiative, which tested estrogen and progestin pills that doctors long believed would prevent heart disease, bone loss and many other problems in women after menopause. The main part of the study was stopped in 2002 when researchers saw surprisingly higher risks of heart problems and breast cancer in hormone users.
Since then, experts have debated whether these risks apply to women who start on hormones when they enter menopause, usually in their 50s, and take them for shorter periods of time. Most of the women in the federal study were in their 60s and well past menopause.
So the advice has been to use hormones only if symptoms like hot flashes are severe, and at the lowest dose and shortest time possible.
The new study sharpens that message, Chlebowski said. "It does change the balance" on whether to start on treatment at all, he said. Even so, most women will not get breast cancer by taking the pills short-term. The increased cancer risk from a couple of years of hormone use translates to a few extra cases of breast cancer a year for every 1,000 women on hormones. This risk accumulates with each year of use, though.
The Women's Health Initiative study had two parts. In one, 16,608 women closely matched for age, weight and other health factors were randomly assigned to take either Wyeth Pharmaceuticals' Prempro — estrogen and progestin — or dummy pills.
This part was halted when researchers saw a 26 percent higher risk of breast cancer in those on Prempro.
But that was an average over the 5 1/2 years women were on the pills. For the new study, researchers tracked 15,387 of these women through July 2005, and plotted breast cancer cases as they occurred over time.
They saw a clear trend: Risk rose with the start of use, peaked when the study ended and fell as nearly all hormone users stopped taking their pills. At the peak, the breast cancer risk for pill takers was twice that of the others.
Think of it as President Bush's public approval rating, said another study leader, Dr. Peter Ravdin of the University of Texas M.D. Anderson Cancer Center in Houston.
"Bush's popularity may be 50 percent on average, but it might have been descending the whole time he was president," Ravdin said.
In the second part of the federal study, researchers observed just 16,121 women who had already been on hormones for an average of seven years and another group of 25,328 women who had never used them. No results on breast cancer risk in these women have been given until now.
Plotting cases over time, researchers saw in retrospect that hormone users had started out with twice the risk of breast cancer as the others, and it fell as use declined. Among those taking hormones at the start of the study, use dropped to 41 percent in 2003, the year after the main results made news.
In the general population, use of hormone products has dropped 70 percent since the study, said another of its leaders, Dr. JoAnn Manson, preventive medicine chief at Harvard's Brigham and Women's Hospital in Boston.
That corresponds with big drops in breast cancer cases, but some scientists have said this could be due to a fall-off in mammograms, which would mean fewer cancers were being detected, not necessarily that fewer were occurring.
The new study puts that theory to rest. Mammography rates were virtually the same among those taking hormones and those not.
"It is clear that changing mammography patterns cannot explain the dramatic reductions in breast cancer risk," Manson said.
"The data are getting stronger," said Dr. C. Kent Osborne, a breast cancer specialist at Baylor College of Medicine in Houston.
Women who do need the pills should not panic, though the doubling of risk — a 100 percent increase — for long-term users is quite worrisome, cancer specialists say. Although the new study does not calculate risks in terms of actual cases, previous research showed that the average increased risk of 26 percent meant a difference of a few extra cases a year for every 1,000 women on hormone replacement pills, compared with nonusers.
"Hormone replacement therapy remains a good health care choice to relieve moderate to severe menopausal symptoms," says a statement from Wyeth, which made the pills used in the study.
"Most women should be able to discontinue hormone replacement pills in three to four years," or at least reduce their dose, Manson said.
A future analysis will look at other women in the study who took only estrogen, generally women who have had hysterectomies.
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On the Net:
Cancer conference: http://www.sabcs.org/
Hormone study: http://www.nhlbi.nih.gov/whi/estro_pro.htm
(This version CORRECTS that risk increased 100 percent, not 200). ----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------
DEAR GOOD AND WISE WOMEN,
You might also want to read the websites they mention above and my guess is that some of those who took old high dose birth control pills or extra estrogen alone after their hysterectomies might have an even higher risk of breast cancer or meningioma in some cases because I strongly suspect from what I have read that estrogen driven abnormal cell growth is more aggressive than progesterone related abnormal cell growth. But I may be wrong and we may all need some estrogen to help us feel sexy. Remember we are all normal across a gradual bell curve that has equal numbers weighing on both sides of normal either way and progesterone levels are highest in our bodies when we are pregnant in the third trimester. I don't need to worry about that anymore. I have 3 grown kids and I never took birth control pills which also contain extra hormones. I think it is pretty surprising they do not mention birth control pills at all in this report above since most women today have taken them for some significant length of time in their busy lives and for other medical reasons.
PS BTW girlfriends, I just went and had my mammies grammed again and they were OK, I only got squeezed twice for two ### sets, but my sister had a brutal experience last month while her breast was still tender from her first surgery, because they took three sets of punishing tight pictures in a row while she was crying and then bluntly told her she needs another surgery right away, after her initial report was more positively all clear in her lymph nodes. I really do object when the routine mass produced medical system becomes so uncaring, impersonal, and uncompassionate when/if they are taking out their own frustrations at work on the people they are supposed to be serving. My head was checked by Nov 08 MRI too and "the uninvited guest in my attic" to steal the exact words of another meningioma survivor I read about, and I are both as stable as it gets at my age, in more ways than one....LOL Please forgive my 'sick" sense of humor, I'm a real granny now 61 So go get your MAMMies grammed before you forget. That begins to happen normally at my age too...whether I am like Maxine or like Martha, actually most of the time I am some of each, a period of hot flashes and/or cold sweats without hormone replacement therapy didn't bother me, or my mother for long. Maybe we have them for a reason? We still live longer than men and besides we women are all sisters in my mind.
GBYAY Anne McGinnis Breen
See my ponytail bouncing and my smiley face winking at you? &;>)
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Courage in women is often mistaken for insanity.
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Keep you faith, cherish your reason, treasure your mind and hold to your own good purpose...be not afraid!
