ovarian cancer

Surgical Menopause in Young Women: The Medical Epidemic No One Is Talking About

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They call it “Surgical Menopause”, couldn’t they have come up with a better name for it? Something, really anything else would be preferable to attaching the word “menopause” to a young woman still in her prime, still very much at the start of her story. A word that doesn’t conjure up images of graying ladies sitting around a shuffleboard court in West Palm Beach sipping Arnold Palmers out of frosted glasses. I am 30 years old and I’m in surgical menopause. This shouldn’t be happening to me.

Losing the First Ovary

When I was 25, I woke up with an acute pain radiating from my abdomen that was relentless enough for me to wake my mother in the dead of night to rush me to the ER. I thought it was, most likely, appendicitis, so did the emergency room staff, until they saw the ultrasound. I had a solid mass the size of a grapefruit twisted around my left ovary. The sense of urgency became apparent, as the hospital’s top OBGYN surgeon hurried through the night to remove the mass before it ruptured its contents into my belly. The word “Cancer” fluttered in the air, but before I could count to three, the anesthesia kicked in. When I came to, hours later, I was stitched together with six-inch battle wound akin to a C-Section and I had lost my left ovary.

At least I had one working ovary, I thought. I recalled the episode of “Sex and the City” where Miranda, the “smart one”, is informed by her gynecologist that one of her ovaries is lazy and thus becomes concerned that she can no longer be so choosy about men if she’s intent on motherhood. In subsequent episodes, she discovers she is, in fact, pregnant in spite of her bum ovary. But that was the extent of my knowledge of problematic ovaries at the time. It all worked out for Miranda, a woman pushing forty, so naturally I thought it would for me as well.

I hobbled to the hospital bathroom like I was carrying a watermelon between my legs, cracked a joke to the nurse to divert from the seriousness of the situation, my usual coping device. But it hurt to laugh. I slurped back a couple mouthfuls of Jell-O, pressed the button on my morphine drip, and I went back to sleep.

A day later, the pathology returned, revealing that my mass was a Borderline Ovarian Tumor, which is a low malignancy potential ovarian cancer. It’s estimated that 15 out of 100 ovarian tumors are borderline ovarian tumors. Despite this sizable number there is very little research being done on this form of cancer that impacts women between 20-40, their most fertile years. There is a 50% rate of bilateral recurrence, meaning they tend to grow on not one but both ovaries, and the only treatment for it that currently exists is surgery. In short, I was 25 with ovarian cancer having to swallow the bitter pill that I would most likely lose both my ovaries, and thus my fertility, by the age of 30. I was gutted.

I cried for a month following my diagnosis and the possibility of never having children. While it still seemed years away at 25, being a Mother had always been my biggest dream. I envisioned a home filled with children’s laughter, toys and art supplies strewn about in joyful disarray, and myself at the center of it. I never imagined something might happen to render that vision of my future life an impossibility.

The Race to Preserve Fertility

I was quickly referred to a top fertility specialist in NYC to freeze my eggs even though I wasn’t married or planning a family. Over the next four years, I underwent 5 rounds of IVF to freeze eggs and 6 surgeries to remove recurring borderline ovarian tumors. The body that I’d always loved and derived pleasure from became foreign to me, an enemy, an other, a two faced traitor. I dreaded each ultra sound appointment, as the flickering black and white monitor of my uterus inevitably exposed new borderline ovarian tumors growing aggressively.

After these appointments I would ceremoniously lock myself in my room and ugly cry my grief out in private, ultimately picking myself up and pressing onward. I became so stoical simply to get through all my procedures, that often my friends and family didn’t realize how much I was actually going through. If I let myself share, even for a second, all the turbulent emotions that lay just below the surface, I feared I would break into a thousand and one pieces and never be able to put myself back together again, like Humpty Dumpty.

Losing the Other Ovary: Surgical Menopause

By my late 20’s my oncologist told me my remaining ovary had to come out.  He spent all of five minutes explaining I would have to wear a hormone patch, as my body would be thrown into early menopause but other than that I would feel largely the same. That was it. I would be a 30-years-old, in Menopause. My shame and despair was so big it could fill a room. I couldn’t even utter the word “Menopause” to my friends and my partner because it made me uncomfortable, and it just seemed wrong.  I was young. I was supposed to be in the throes of what everyone had always said would be the best years of my life. I shouldn’t be going into menopause. But, little did I know, that was just the tip of the ice burg…

When I was fresh out of surgery, my mother and me scoured the Internet for information about Surgical Menopause but nearly every resource available was geared toward women in natural menopause. The articles and firsthand accounts of women, particularly young women, in surgical menopause were non-existent. I felt completely alone because no one was talking about this medical condition, at least not publicly.

Swapping Ovarian Cancer for Chronic Health Condition

I am now well into my third year of surgical menopause and happy to report I have had no recurrence of borderline ovarian tumors. I have swapped ovarian cancer for a chronic health condition, which in the medical community’s estimation is a success story. I am by most accounts young with a condition attributed to the old, the aging.  I am weary from the side effects of the surgery and the medications, working through the physical and emotional exhaustion of carrying a chronic health condition, but I dig deep and persevere.

I don’t like pity; my mother raised me to be solution oriented. I don’t broadcast my daily struggles on social media, or to my friends and family unless prompted. I don’t like to complain or wear my weakness to the world like a warrior; few people know I am sick. Those who are privy to this knowledge often question how I can post such happy photos on my social media accounts. Sometimes, I do, I feel like a faker living some sort of double life.  It isn’t being knowingly deceptive; I just choose to share my “good days”, my wins. It makes me feel normal, at least outwardly. Which, when you feel lousy a good portion of the time as I now do, those healthy snapshots are what you aspire to, not the days when you can’t get out of bed.

Instead of collapsing into a heap of self- pity, I throw myself like a rubber ball against a wall into attempting to fix the unfixable. While it certainly beats dying from ovarian cancer, my body feels broken. It is unrecognizable to me as my own. It’s not just the 20lbs I have put on since surgery (which is standard for women in surgical menopause), or the unpredictability of my health which makes making life plans as well as working a regular job near impossible, or the times I bleed for months because of hormonal imbalance and end up so weak a breeze could blow me over. Rather it’s this indescribable feeling of emptiness where once there was passion, hope, excitement, spirit, vitality and life force. Every day since I woke up from this devastating surgery I am longing just to feel like and be me, the person I was before;  I wonder if that person will ever return or if I will simply continue to exist as the ghost of my former self. I feel like I have been robbed of the full and happy life I could have lived because no one, not even doctors, are fully aware of  the impact of the surgical removal of ovaries.

Hormone Replacement Therapy Doesn’t Work Well For Everyone

Managing my health condition has become a full time job. The medications I take to compensate for my missing hormones do a poor job of imitating the elegance of the real thing. I have been bounced around to every kind of medical specialist, tried dozens of hormone replacement drugs, and none have given me back any sort of stable quality of life. One day I’ll wake dizzy with my body swollen and up 10lbs with water weight and bleeding heavily, and the next my hormones will have fallen so dangerously low that my face will be ashen, my eyes encircled in red rings, and I feel as though I could pass out. Occasionally I do. I have lost count of the amount of times I have been rushed to the ER because hormone related issues have left made me so ill. Once there, they often can do very little for me other than rule out something more serious like a stroke or heart attack and wait for my vitals to stabilize. The doctors, even the good ones, understanding of women’s hormones amounts to a lot of guess-work and shots in the dark based on external symptoms and a basic framework of hormone levels. Unlike most health conditions, there is no clear and careful protocol for treating Surgical Menopause. I, like many women with this condition, feel like a guinea pig in a medical system that seems to have forgotten us because we have what is deemed to be a “woman’s issue”.

At the time of my final surgery I was told by doctors my condition was the same as natural menopause; that I would simply need to take HRT (Hormone Replacement Therapy) and all would be well. My Mother, Aunts, and Grandmothers had been through menopause and seemed relatively unscathed so I assumed I’d be the same.

But the truth is surgical menopause is a chronic health condition resulting in the loss of organs, whereas natural menopause is a phase of life that occurs for all women when they age around 50.  Women in surgical menopause have a higher chance of developing dementia and Alzheimer’s, heart disease, Osteoporosis, faster and younger. Women in Natural Menopause still produce low levels of hormones for the rest of their lives to sustain their bodies and well being, we do not. Sure we share some of the same symptoms:  hot flashes, insomnia, fatigue, weight gain, but we aren’t the same.

My mother, still vibrant in her 60’s, works a full time job and lives life to the fullest, by contrast I had to leave my chosen profession to work from home because my chronic health condition is so unpredictable that it leaves me incapacitated at times. I have good days, I celebrate them, and also days I don’t have the strength to shower.  I have a bathroom cabinet full of prescriptions that are supposed to “fix” me, but so far, I remain un-fixable. A third of my time is spent seeing and calling my doctors and interviewing new ones, another third filling out paperwork and prescriptions, and finally, when I am well enough to actually leave my home, the final third is enjoying my family, the few friends that have stuck with me through this, and doing mundane tasks like doing the laundry.

Why the Silence?

I couldn’t understand how nearly 600,000 women a year in the USA could undergo hysterectomies and oophorectomies that left them in surgical menopause and there was little to no research being done on their quality of life following surgery or on more advanced HRT treatment that could give them their lives back. The HRT drugs currently on the market are static doses that do not mimic the fluctuations of a normal female body and thus, like myself, many women battle daily to feel well and like themselves on them. There is some variety of HRT options from bio-identical to synthetic, but the side effects from these medications are often very severe and for anyone, like myself, who is sensitive to medication in general, finding the right HRT in the right balance can feel like an impossible task and your body has to pay the price of being physically ill for any miscalculations.   If men were losing their testicles to cancer and various diseases at the rate women are losing their ovaries, you can bet there would be research dollars, big fundraisers, and funding for more humane and improved treatment options. The male birth control pill was recently developed, and shortly after discontinued because men were complaining of the side effects such as mood changes, muscle pain and acne. Mind you, these are side effects women have been enduring for decades on hormone medications.

Finally, in March of 2015, movie star Angelina Jolie came out and spoke publicly about entering surgical menopause and her BRCA 1 diagnosis. At first I was overjoyed to have such a dynamic woman and social justice crusader champion this cause, but because she was one of the smaller group of ladies who did okay following surgery, the subject quickly disappeared from the headlines into the ether and along with it the hope of sparking more interest in advocacy.

The same year I began an online support group with a fellow Surgical Menopause sufferer that now has well over a thousand members spanning the globe. These women are your sisters, your mothers, your friends, your neighbors, and your co-workers. You would never know what they were going through, because few feel confident, outside of online support groups, sharing their difficulty navigating this condition. While there are some hopeful tales the majority of the members of our group share stories of depression, suicidal thoughts, concern that they will be unable to work or that their husbands and partners will leave them due to the extent of their disability or sexual dysfunction, problems with finding the correct HRT and doctor, side effects from HRT, and doctors who seem to have universally not prepared or warned these women in any way for how this surgery would forever alter their lives.

After hearing hundreds of women’s stories of surgical menopause, I quickly realized the reason for this lack of public awareness: shame and I suppose the fear of exposing themselves as no longer having certain parts made them less feminine. Women didn’t want to publicly talk about their condition and by extension the poor treatment options because it had to do with their vaginas, their uterus, their ovaries, and in many cases, their sex lives. Hysterectomies and oophorectomies are not new, they have been performed for over a hundred years and while they do save women from the ravages of cancer, disease, and death, women seem to be expected to endure their hardship with the chronic conditions they are left with quietly, pleasingly, because they involve our lady parts.

Yes, I am one million percent grateful that I had a surgery to save my life from ovarian cancer, but I have every right to have long moments of frustration for having to live with a chronic health condition that is often brushed under the carpet by the medical community because it is considered a  “female problem” and a women’s health issue.

I am disheartened that so many women have to go from doctor to doctor like a honey bee, burning through their finances (the average cost of my consultations with a hormone specialist in NYC ran around $700, completely out of pocket); because there is no clear protocol to treat us other than to put us on a generic hormone replacement therapy plan that cannot possibly account for the wide variety of reactions and variations of the female human body. While HRT is a great first step, the science and research is not adequate for the women forced to live with this condition for the rest of their lives and wanting so very badly just to feel human and be functional. Yes some women do okay with having their ovaries removed, but many more, especially young women whose hormones are at their peak at the time of surgery, live greatly compromised lives because the after care is nowhere near where it should be.

I’ve come to accept that I have a condition that has the word “menopause” in its name, even though I think it should be changed so it wouldn’t evoke shame. I find empowerment in running a large support group and realizing I am part of a greater community that numbers in the hundreds of thousands of ladies in the same boat. I am still young, I am still beautiful, I am still fully feminine and fearless. I find solutions, just like my mother taught me. I can’t cure myself but I try daily to figure this shit out even if I am the Tortoise rather than the Hare in this race for good health. But I also have a chronic health condition and it’s called surgical menopause. And it’s time the world paid attention to us.

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What Causes Ovarian Cancer?

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Ovarian cancer is the most difficult to diagnose of all the gynecologic cancers, which are uterine, fallopian, vulva, and cervical. The symptoms of bloating, back or pelvic pain, digestive issues, changes in bowels, urinary frequency, and fatigue are the most commonly reported. Other symptoms include vaginal bleeding or unusual discharge, change in weight, painful intercourse, and menstrual changes. Any one of these can be symptomatic of other diseases or disorders such as Irritable Bowel Syndrome, Gastritis, Back Strain, or Menopause to name a few.

Risk Factors for Ovarian Cancer

Scientists do not know what exactly causes ovarian cancer, but according to the American Cancer Society, there are “some factors that make a woman more likely to develop epithelial ovarian cancer,” which is the most common form of ovarian cancer. The three most prominently researched factors include:

  • Estrogen exposure – synthetic and endogenous
  • Genetics
  • Family history

Ovarian Cancer and the Estrogens

Estradiol is a female hormone that plays an important role in normal sexual and reproductive development. It is one of many estrogenic hormones produced by the ovaries. The ovaries produce most of the estrogenic hormones, though a far lesser amount comes from the adrenal glands. After menopause, the adrenal glands produce the majority of estrogens.

Estradiol and the other endogenous estrogens affect skin, hair, mucus membranes, pelvic muscles, breasts, bones, urinary tract, heart and blood vessels, and the brain. Perhaps more importantly, the estrogens affect mitochondrial energy metabolism in the heart, but also in the brain, and everywhere else as well. In light of that, it is understandable that synthetic estrogens might influence these same systems.

Oral contraceptives. According to the Center for Disease Control and Prevention, “there is no known way to prevent ovarian cancer.” However those who used birth control pills “has consistently been found to be associated with a reduced risk of ovarian cancer….Oral contraceptive formulations with high levels of progestin were associated with a lower risk ….”  Various studies have shown a 10-12% decrease after just one year of use and as much as a 50% decrease after five years.

Some research suggests that total duration of exposure to estrogenic hormones, whether endogenously produced or synthetic (and there is some debate about this), decreases a woman’s risk for ovarian cancer. With this line of reasoning, some researchers have argued that the use of oral contraceptives may reduce the risk of ovarian cancer because contraceptives prevent ovulation. The theory is that each time she ovulates the woman is exposed to more hormones. According to researchers at Johns Hopkins “It is hypothesized that the longer a woman is exposed to estrogen, the higher her risk of ovarian cancer…. The longer the woman menstruates, the higher her risk.”  This may not be the case for all women, however.

For those who carry the BRCA1 and BRCA2 mutations, oral contraceptives may or may not reduce the risk for ovarian cancer, but pregnancy does. A study published in 2001 stated that “We believe that it is premature to prescribe oral contraceptives for the chemoprevention of ovarian cancer in carriers of a BRCA1 or BRCA2 mutation, particularly in the light of the report of a possible increased risk of breast cancer in such women.”   In contrast, a study in May of 2014 the Journal of the National Cancer Institute wrote, “Although we were not able to undertake meta-analyses of the existing data, it is likely that oral contraceptives are associated with ovarian cancer risk reduction. For those who carry the BRCA1 or BRCA2 mutations, oral contraceptives did reduce the risk for ovarian cancer.” More research is required to fully determine if or how oral contraceptives affect the occurrence of ovarian cancer, for those women with or without BRCA1 or BRCA2 mutations.

Other researchers speculate that it is not the estrogens but exposure to androgens that increases risk. Regardless of the mechanisms by which oral contraceptives may or may not confer protection against ovarian cancer, they are not without other risks. When a woman takes birth control pills she is also increasing her risk for breast, cervical, and liver cancer. Therefore, it is imperative that she understand and discuss with her physician these risk factors, as well as her personal and family history.

Since the introduction of oral contraception in the 1960’s there have been many studies on its relationship to various cancers. The studies have been on birth control pills of estrogen only, estrogen-progesterone, and those with androgenic properties (testosterone effects). How much a factor estrogen alone is in causing ovarian cancer requires more research.

I chose to not take birth control pills because I did not believe it was healthy to control when a woman was to have or not have a period. In other words, control her hormones and menstrual cycle. I am the mother of three healthy sons. If I had taken the birth control pills between pregnancies, would I now have ovarian cancer? No one knows for sure. I made my decision many years ago believing it was best for my health so I do not have any regrets.

Hormone Replacement Therapy. For many years women have used Hormone Replacement Therapy (HRT) to help relieve the hot flashes, mood swings, and other symptoms due to menopause. According to a study published in the Lancet in February, 2015, a study of 21,488 postmenopausal women with ovarian cancer, concluded an increase risk from the use of both estrogen-only and progesterone and estrogen combinations of Hormone Replacement Therapy. “Women who had taken HRT for at least 5 years were still at increased risk of ovarian cancer 10 years later.”

An interesting article about HRT and its affects on ovarian and breast cancers, a historical review of HRT, and post oophorectomies written by Chandler Marrs raises the question if HRT is “largely or wholly causal in ovarian cancer.”  More research is needed to answer the questions raised by Dr. Marrs.

There are additional factors for the woman and her physician to take into consideration if HRT is right for her. Has she had a hysterectomy? What are her menopausal side effects, and how severely are they affecting her quality of life? Has she had breast cancer, or have a family history? “Based on the WHI (Women’s Health Initiative) study, taking EPT is linked to a higher risk of breast cancer.”  It is recommended that a woman be on as low a dose and for as short a period of time as possible to reduce her risk of ovarian cancer. There are also over-the-counter herbs and supplements that might help reduce or eliminate the menopausal side effects.

Once again I chose not to take any HRT for three reasons: one, I did not want to manipulate my hormones; two, I had a family history of breast cancer from one aunt; and three, menopausal symptoms of hot flashes and insomnia were not severe enough for me to take any HRT. I used over the counter meds for the insomnia.

Another theory suggests that tubal ligation or hysterectomies might lower the risk of ovarian cancer. This is based on “some cancer-causing substances may enter the body through the vagina and pass through the uterus and fallopian tubes to the ovaries.” This theory also requires more research.

Finally, there appears to be a link between polycystic ovarian syndrome (PCOS), an imbalance of the female hormones, and ovarian and endometrial cancers. Any personal or familial breast cancer history also puts women at higher risk. More research is required for this complex and familial disease.

Ovarian Cancer and Genetic Risk Factors

Is ovarian cancer caused by some defect in our DNA or genes? Our DNA carries instructions for each cell in our body. Any defect in our genes can cause or lead to any type of cancer. What causes the genes to be defective is not completely known. Most often the body is able to correct any damage to a gene, but due to not fully understood factors sometimes the mutated gene is not reversed. “Usually, it takes multiple mutations over a lifetime to cause cancer” which is why aging is a high risk factor for ovarian cancer.

  • Lynch Syndrome, an inherited cancer of the digestive tract causes a 12% risk increase for ovarian cancer because of the mutation in DNA repair genes.
  • BRCA1 and BRCA2 are inherited genes that produce tumor suppressor proteins. If these genes are mutated they increase the risk of developing breast and ovarian cancers. Unfortunately women of Eastern Jewish descent (Ashkenazi) are at greatest risk. Norwegian, Dutch and Icelandic peoples also have a higher incidence of these mutations. BRCA1 and BRCA2 mutations account for about 15% of ovarian cancers overall. BRCA1 and 2 carriers also have a higher concentration of female hormones. Research is examining how estrogen affects the Fallopian tubes where most ovarian cancers begin. Many women with BRCA1 and 2 gene mutations choose to have their breasts and ovaries removed, which is a drastic and difficult decision.

Most DNA mutations related to ovarian cancer are not inherited but instead occur during a woman’s life….So far, studies haven’t been able to specifically link any single chemical in the environment or in our diets to mutations that cause ovarian cancer. The cause of most acquired mutations remains unknown.”

Genetic testing is recommended. The process will include your family health history and environmental factors as well as the gene test. The information can be valuable for the patient, family members, and future generations. If tested positive, family members have the opportunity to make prophylactic decisions as to their health care options.

I chose to be genetically tested though I did not have any of the ethnic risk factors associated with BRCA1 and BRCA2. I wanted to be sure I had not passed on a mutated gene. I am glad to say that I tested negative.

Family History and Ovarian Cancer

How much of a factor is family history? Any family history of ovarian, breast, or colon cancers might raise a red flag to the physician. How close the relative is to the patient is a question to be considered.

My aunt on my mother’s side had breast cancer and we do not know if she had a mutated gene (other than BRCA) that got passed on to me. My great grandfather had colon cancer but it was decided that he was too far removed from me to be a factor. My mother died from stomach cancer and my uncle who was a habitual smoker died of throat cancer. To sciences present knowledge there is no connection with my ovarian cancer.

Do you know your family history? This knowledge may be important along with the presenting symptoms for your physician in determining a diagnosis. From a small, non-scientific, and anonymous questionnaire of gynecologic survivors, here are some unfortunate and interesting statistics:

  • Did your physician(s) ask about your family history?  Yes from 35 out of 131MD’s
  • Did your physician(s) ask about your symptoms? Yes from 34 out of 131 MD’s

Only about 25% of the doctors discussed the family history or symptoms. The women mainly saw their family physician or gynecologist for an initial appointment with presenting symptoms. Here are the most common symptoms:

  • 55%–Bloating
  • 42%–Abdominal pain
  • 28%–Digestive problems
  • 28%–Fatigue
  • 20%–Frequent urination
  • 16% –Constipation
  • 13%–Vaginal bleeding
  • 11%–Weight change
  • 11%–Back pain
  • 8%–Painful intercourse
  • 4%–Shortness of breathe
  • 4%–Menstrual issues
  • 2%–Temperature
  • 2%–Overweight

Here are some comments from the women who completed the questionnaire:

“My family doctor only did testing because I demanded it after she sent me home the first time and I still didn’t feel better after 2 months later.” (Diagnosed Stage IIIC)

“Had I not demanded the ultrasound my diagnosis would have been missed….” (Diagnosed Stage IIIC)

I look back and I do believe I did have subtle symptoms, but my male doctor ignored my complaints….with a family history I feel I should be been looked at more closely.” (Diagnosed IIC)

“I found that the best doctor is the one that listens.”  (Diagnosed Stage IC)

The following patient had a hysterectomy 14 years prior to diagnosis, removing only her uterus. “…I was on Estrogen only for all those years.” (Diagnosed IIIC)

It is important to recognize that there are many possible risk factors that have not been substantiated in various case studies. Such factors are infertility drugs, talcum powder, smoking, aspirin and NSAIDS, and dietary considerations. According to the National Cancer Institute (May 15, 2015) more research is needed for these possible contributors.

Early Detection Is Key

In closing, early detection & diagnosis are a woman’s best opportunity to treat gynecologic cancers. From Johns Hopkins, “…the combination of bloating, increased abdominal size, and urinary problems was found in 43% of women with ovarian cancer…. Women presenting with non-specific symptoms, particularly if severe intensity or rapid onset, should be thoroughly evaluated for the possibility that the symptoms are due to an ovarian mass.”

When we experience any of the symptoms of ovarian cancer for two weeks without any relief despite medications, women need to seek out medical attention quickly. We must advocate for ourselves that the physician listen to our symptoms, discuss our family history, and insist that an abdominal ultrasound and CA125 be parts of the diagnostic tools.

Outshine Ovarian CancerAbout the author: Karen Ingalls is the author of the award-winning book, Outshine: An Ovarian Cancer Memoir, which discusses the symptoms, risk factors, and statistics of this lesser known disease; shares her journey; and how she used traditional medicine and complementary therapies together. She writes how “the beauty of the soul, the real me and the real you, outshines the effects of cancer, chemotherapy, and radiation.”

Corrections. On June 26, the word ‘increases’ was changed to ‘decreases’ in the following sentence:  ‘…whether endogenously produced or synthetic (and there is some debate about this), decreases a woman’s risk for ovarian cancer.’  The 2014 study was added to the discussion of BRCA mutations and oral contraceptives. 

HRT ‘Largely or Wholly Causal’ in Ovarian Cancer

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Think about that quote for a minute. Hormone Replacement Therapy or HRT may be largely or wholly causal for a significantly increased risk of ovarian cancer in women, according to authors of a recently published study, Menopausal hormone use and ovarian cancer risk: individual participant meta-analysis of 52 epidemiological studies. ‘Largely or wholly causal’ is very strong statement; one that makers of HRT are sure to dispute, but one that nevertheless was supported by data.

Ovarian Cancer Risk with HRT Use

Based upon prospective (17 studies; 12,110 cases) and retrospective (35 studies; 9,378 cases) epidemiological data reviewed by the Collaborative Group of Epidemiological Studies of Ovarian Cancer in Oxford, England and published in the Lancet, out of the 21,488 post menopausal women with ovarian cancer, 9303 had used HRT, most more than 5 years. From a statistical standpoint, the risk for ovarian cancer was significantly greater in women who had ever used HRT versus those who had never used HRT and even greater in those who were currently using HRT or had recently used HRT than those who had ceased HRT years prior. In other words, HRT use accounted for almost half of the cases of ovarian cancer. Moreover, the risk for HRT induced ovarian cancer was greatest while on the medication and soon after ceasing, but declined as time passed. This is an big finding.

Historical Associations between HRT, Cancer and Disease

Since the Women’s Health Initiative (WHI), debate about the safety of HRT has been forefront among millions of women. WHI demonstrated an increased risk of breast cancer and all sorts of other adverse reactions to menopausal hormone replacement therapy. Despite the findings of the WHI, drug companies and supporters were quick to point out that participants in the WHI were largely older, thus skewing the data. In fact there were and continue to be studies and critiques suggesting only minimal risk if younger women were to utilize HRT immediately upon menopause and for a shorter duration. Ovarian cancer was not considered among those risks.

The current study dispels the notion that younger women (those around the age 50) can use HRT safely and adds to the growing constellation of HRT mediated cancers and ill-effects. Indeed, age did not contribute to the overall risk for ovarian cancer, neither did other commonly considered factors like weight/BMI, smoking or oral contraceptive use. Only use versus non-use and recency of HRT usage were found to increase the risk of ovarian cancer.

Another common argument in support of HRT suggests that estrogen only HRT medications are more strongly associated with negative outcomes and that by adding a progestin, the risk for these side effects is minimized. While that may be plausible for some negative side effects, it was not true for ovarian cancer. Both types of HRT, estrogen only and estrogen plus progestin had equally high rates of ovarian cancer.

Utilizing the data reviewed in this study, the authors calculated the relative risk for ovarian cancer and death from HRT in England. The numbers are striking. For every 1000 women who utilize beginning at around 50 years of age and for approximately five years, we can expect one additional case of ovarian cancer and 1/1700 death rate, per year. When HRT is used more chronically (10 years), that risk increases significantly – one in every 600 women will develop ovarian cancer with death in one in 800 of those cases, per year.

An additional finding was the type of ovarian tumors most influenced by HRT. Ninety-eight percent were epithelial, the majority were serous tumors, followed by endometrioid tumors.

HRT, Breast Cancer and Other Risks

When combined with the increased risk of breast cancer (19 in 1000 per the Million Women Study), stroke, embolism, heart attack, gallbladder disease (Cochrane Review, 2012), one wonders why these medications are yet on the market. They are, however, and 6 million women in the US and UK use them regularly for years. From a statistical standpoint, the risk for any one of these side effects is relatively low. With breast cancer for example, HRT use accounts for 8-12% of the total cases each year.

By any standards, a 0.08% increased risk of breast cancer for each year of HRT use is extremely low. After 10 years of use, the cumulative 0.8% increase in risk is still low, but it has become a reasonable fraction of the 8% to 12% total risk of breast cancer diagnosis. Nationally, with millions of women taking HRT, many thousands will presumably have HRT-associated disease…Ken Muse, MD 

Many thousands, indeed, will develop HRT induced breast cancer or HRT induced ovarian cancer each year and some will die. The question one has to ask, is the need to decrease hot flashes, night sweats and vaginal dryness and other symptoms of menopause greater than the increased risk for breast or ovarian, heart attack and stroke and the host of other side effects associated with HRT? Can we not come up with safer therapeutic options to temper menopausal symptoms without increasing the risk for cancers and other diseases. Menopause is a temporary state of hormonal fluctuation, cancer, heart attack and stroke are more permanent.

HRT Post Oophorectomy

Perhaps, even more importantly, what are the risks for cancers and other disease processes in women who have had their ovaries removed and who must replace the hormones lost using HRT? Unlike natural menopause, where hormones decline gradually over years, with oophorectomy, hormones decline rapidly and almost completely (other sources of hormones synthesis are yet available, though generally insufficient to account for the loss of the ovaries). Certainly, their risk for ovarian cancer sans ovaries is eliminated but what about their risks for HRT-induced breast cancer, cardiovascular disease, gallbladder disease, dementia and cognitive decline? Have we removed one risk only to add five others?

The answers to these questions may be especially troubling in those women whose ovaries were removed without consent and/or because of some ill-conceived notion of protection against ovarian cancer. Prophylactic oophorectomy as archaic as it sounds is still quite common. Does this practice predispose an otherwise healthy woman to an exponentially increased risk for cancer and other diseases? It might. Without even the limited production of endogenous ovarian hormones to temper the onslaught of synthetic HRT, I fear we have increased the risk for many disease processes, of which we know little.

Endometriosis and Clear Cell Carcinoma – Ovarian Cancer

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Endometriosis is a common disease amongst women and is thought to occur in between 7 and 10% of the female population. Whilst it is known that the vast majority of these women will never go on to develop any form of cancer, the work that has been done recently in demonstrating a link between endometriosis and particular types of ovarian cancer could provide an easier way to provide the necessary screening for a disease which is notoriously difficult to diagnose.

A team of researchers from Ovarian Cancer Association Consortium (OCAC) have recently revisited a set of thirteen independent pieces of research into the link between endometriosis and ovarian and cancer and have now confirmed that women with self-reported history of endometriosis have significantly increased risk of developing clear cell carcinoma. Clear cell carcinoma is a cancer in which malignant cells form in the tissue covering the ovary. About 6% of common epithelial tumours are known to be clear cell and of those, 50% are known to be associated with endometriosis. The majority of patients with this type of cancer are between 40 and 80 years of age.

The researchers also showed that there was a clear link between endometriosis and what is called low-grade serous ovarian carcinomas, which are slow growing cancers. They discovered that endometriosis doubled the risk for women developing the disease; however, they also learned that there was no association between endometriosis and high-grade serous carcinomas, which develop much faster and are more aggressive, or other subtypes of ovarian cancer in the study.

In the UK, women have a 2% chance of developing ovarian cancer during their lifetime, this translates roughly into one woman in every 50 developing the disease. Of these figures, around 9 out of every 10 cases will be of the Epithelial Ovarian Cancer type and only 6% of these cases will be of the Clear Cell Carcinoma type (roughly half of one woman in every 50).

About the author: Linda started The Hysterectomy Association  in 1996 after having a hysterectomy herself at the age of 32 to deal with the severe endometriosis she had suffered from since she was 16.

The organization came to be when she decided to use the subject of the information needs of women having a hysterectomy as the basis of a thesis for her MSc in Information Studies at Loughborough University. When the research was completed, she was asked by the ladies who had taken part in the research to start an organization just for them; a place that would provide them with a place to go for information and support.

Click on this link to download a copy of the short report detailing the findings from the research.

Linda has written four books, three of them about hysterectomy and the fourth about using the Internet for business. You can find out more about Linda and her other roles by viewing her LinkedIn profile – if you are in business yourself, you may well want to join her too – just let her know that you’re from The Hysterectomy Association.  You can also find her on Facebook at: facebook.com/LindaParkinsonHardman

Gynecologists, What’s Your Problem With Our Ovaries?

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The New York Times recently reported that only 37% of women receive proper treatment for ovarian cancer, mostly because gynecologists do not follow guidelines set out by ACOG (American Congress of Obstetricians and Gynecologists) and the NCCN (National Comprehensive Cancer Network). This information was taken from a study led by Dr. Robert E. Bristow, director of gynecologic oncology at the University of California, Irvine. Sadly, the study revealed that most women with ovarian cancer or a suspicion of ovarian cancer are simply not being directed to surgeons who specialize in treating cancer and specifically, gynecologic cancers.

According to Dr. Bristow, just making sure women get to the people who are trained to take care of them would improve the odds in the fight against ovarian cancer than any new chemotherapy drug or biological agent. Even ACOG agrees that women with pelvic masses indicating a high suspicion for ovarian cancer should be managed by physicians with the training and experience that offers the best chance for a successful outcome. Generally speaking, OBGYN’s lack this type of experience because ovarian cancer is so rare. Shockingly, more than 80% of the women in the study were treated by what the researchers call ‘low volume providers’ – surgeons with 10 or fewer cases a year and hospitals with 20 or fewer.

This story really hit a nerve with me for many reasons, but mainly because the guidelines are being ignored. Most women do not know that they need to be referred to a gynecologist specializing in oncology and it appears most docs are none to keen to tell them. These aren’t the only guidelines gynecologists ignore, by the way. When one considers that only 30% of OB/Gyn clinical practice guidelines have actual evidence behind them, it makes me wonder what the heck is going on with women’s healthcare today.

When I read that only 37% of women with ovarian cancer were receiving the proper care, I immediately thought of how I was subjected to improper clinical care. You can read my full history here.

Briefly, my healthy ovaries were removed during a routine hysterectomy, placing me at a much greater risk for heart disease. The removal of my ovaries and in fact the hysterectomy itself, was against clinical guidelines.

Women with ovarian cancer rarely receive proper treatment while women with no cancer often receive radical over-treatment.

Houston, we have a problem! When it comes to women’s ovaries, gynecologists too often just can’t get it right. Or maybe they just don’t want to… Of the 600,000 hysterectomies performed each year, 73% are estimated to involve ovary removal. Since 90% of all hysterectomies are considered to be medically unnecessary in the first place, this is a huge problem. Even more disturbing is the fact that less than 1% of women whose healthy ovaries are removed have a family history of ovarian cancer. One has to ask why gynecologists are routinely removing healthy ovaries from so many women – especially given the many serious health risks.

There are guidelines in place regarding the indication for hysterectomy and ovary removal. Yet, those guidelines are not followed. A whopping 76% of hysterectomies do not meet ACOG’s own criteria. The most common reasons hysterectomies don’t meet criteria and are considered to be inappropriate are lack of adequate diagnostic evaluation and failure to try alternative treatments before hysterectomy.

Gynecologists routinely rush women into surgery without trying other options first, including doing nothing other than ‘watch and wait’ in some cases. Clearly, women aren’t receiving proper care all the way around regarding ovarian cancer nor are they being properly informed about the alternatives to hysterectomy. Whether we’re talking about birth control, HRT, ovarian cancer or hysterectomy, it pays for women to become educated about their health and their healthcare options. It may save their life.