Wednesday, January 6, 2010

We all deserve a tiara and pearls.



I wanted to start today with a recount of my experience at the Lakeshore Sleep Disorder clinic last night. I wanted to share with you the sleep study, the oddness of it all, and what this study could find.

But life has a funny way of throwing a new subject at you.

One I try to avoid. One I prefer to skip over. One that scares many people - but is very much a part of our lives.

Tonight I found out that one more relative died of Ovarian Cancer. I think that takes the death toll up to at least 4 that I know of. My cousin, my aunt, my grandmother and my great aunt.
My aunt is not a blood relation. She married my father's brother. But it just drives the need to write about this home - apparently ovarian cancer is a real threat in our family. My cousin Julie is on my mom's side. My grandmother and great-aunt is on my dad's side.
I - on the other hand - had a hysterectomy. But I left my ovaries. I left them for normal hormone function. Now I wish they had taken them out.
See, I suffered from cervical dysplasia. Cervical dysplasia is a condition characterized by the presence of abnormal cells in the cervix, indicating either precancerous or cancerous cells. The condition is classified as low-grade or high-grade, depending on the extent of the abnormal cell growth.
Low-grade cervical dysplasia progresses very slowly and typically resolves on its own. High-grade cervical dysplasia, which I had, tends to progress quickly and usually leads to cervical cancer. An estimated 66% of cervical dysplasia cases are estimated to progress to cancer within 10 years.
Cervical dysplasia often produces no symptoms and is usually discovered during an annual Pap smear.
In 2001, my doctor tried cryocauterization. Just what is that? Cryocauterization uses extreme cold to destroy abnormal cervical tissue. This is the simplest and safest procedure, and it usually destroys 99% of the abnormal tissue. Cryocauterization is frequently performed without anesthesia. My procedure was successful... for about 6 months.
The cells multiplied and returned with a vengence. Then my gyno decided to try a LEEP/Cone biospy.
The LEEP is known as a Loop electrosurgical excision. During a LEEP, a thin loop wire excises visible patches of abnormal cervical tissue. LEEP is performed with local anesthesia and has a 90% cure rate. My doc included the Cervical conization. During a cervical conization, a small cone-shaped sample of abnormal tissue is removed from the cervix. Cervical conization and has a 70 - 98% cure rate, depending on whether cancer cells have spread beyond the cervix.
This was successful for 6 months.
One year later I turned 30 years old. The cells returned and were in a high grade stage. I was asked about a hysterectomy. I did. This included the removal of my cervix and uterus. I opted to keep my ovaries due to my age.
Now I wonder. Was that a good idea? Should I have opted for everything to be removed?
So I did a little research on Ovarian Cancer tonight. I used the website http://www.ovariancancer.org
What exactly is ovarian cancer?
Ovarian cancer is a growth of abnormal malignant cells that begins in the ovaries (women’s reproductive glands that produce ova). Cancer that spreads to the ovaries but originates at another site is not considered ovarian cancer.

Ovarian tumors can be benign (noncancerous) or malignant (cancerous).
Although abnormal, cells of benign tumors do not metastasize (spread to other parts of the body). Malignant cancer cells in the ovaries can metastasize in two ways:
directly to other organs in the pelvis and abdomen (the more common way)
through the bloodstream or lymph nodes to other parts of the body.
What concerns me is I have polycystic ovarian syndrome. Should I be worried? I decided to see if there is a correlation. According to http://ovarian-cysts-pcos.com there is no obvious causal link between polycystic ovarian syndrome (PCOS) and ovarian cancer. Although it’s not known for sure whether benign ovarian cysts or polycystic ovaries develop into ovarian cancer, the vast majority of ovarian cysts appear to be unrelated.

Women who have polycystic ovaries or ovarian cancer seldom have obvious symptoms early on. However, in both disorders, symptoms are noticed as the condition progresses. Because the ovaries are affected on both disorders, the some of the symptoms can be similar.
Still... it's scary.
Since I work in the CVD/Stroke field, I am very aware of risk factors for heart disease. But what about Ovarian Cancer?
1. Genetics - About 10 to 15 percent of women diagnosed with ovarian cancer have a hereditary tendency to develop the disease. The most significant risk factor for ovarian cancer is an inherited genetic mutation in one of two genes: breast cancer gene 1 (BRCA1) or breast cancer gene 2 (BRCA2). These genes are responsible for about 5 to 10 percent of all ovarian cancers.
Another known genetic link to ovarian cancer is an inherited syndrome called hereditary nonpolyposis colorectal cancer (HNPCC or Lynch Syndrome). While HNPCC poses the greatest risk of colon cancer, women with HNPCC have about a 12 percent lifetime risk of developing ovarian cancer.

Women who have one first-degree relative with ovarian cancer but no known genetic mutation still have an increased risk of developing ovarian cancer. The lifetime risk of a woman who has a first degree relative with ovarian cancer is five percent (the average woman’s lifetime risk is 1.4 percent).
2. Increased Age - All women are at risk of developing ovarian cancer regardless of age; however, a woman’s risk is highest during her 60s and increases with age through her late 70s.
3. Reproductive History and Infertility - Research suggests a relationship between the number of menstrual cycles in a woman’s lifetime and her risk of developing ovarian cancer. A woman is at an increased risk if she:
-started menstruating at an early age (before 12),
-has not given birth to any children,
-had her first child after 30,
-experienced menopause after 50,
-has never taken oral contraceptives.

Infertility, regardless of whether or not a woman uses fertility drugs, also increases the risk of ovarian cancer.
4. Hormone Replacement Therapy -Doctors may prescribe hormone replacement therapy to alleviate symptoms associated with menopause (hot flashes, night sweats, sleeplessness, vaginal dryness) that occur as the body adjusts to decreased levels of estrogen. Hormone replacement therapy usually involves treatment with either estrogen alone (for women who have had a hysterectomy) or a combination of estrogen with progesterone or progestin (for women who have not had a hysterectomy).

Women who use menopausal hormone therapy are at an increased risk for ovarian cancer. Recent studies indicate that using a combination of estrogen and progestin for five or more years significantly increases the risk of ovarian cancer in women who have not had a hysterectomy. Ten or more years of estrogen use increases the risk of ovarian cancer in women who have had a hysterectomy.
5. Obesity - Various studies have found a link between obesity and ovarian cancer. A 2009 study found that obesity was associated with an almost 80 percent higher risk of ovarian cancer in women 50 to 71 who had not taken hormones after menopause.
Well...
How would I know I got Ovarian Cancer?
Research suggests that the majority of women with ovarian cancer experience symptoms. Symptoms vary and often depend on the location of the tumor and its impact on the surrounding organs. Many ovarian cancer symptoms mimic those of less life-threatening conditions such as irritable bowel syndrome.

In June 2007, the Gynecologic Cancer Foundation, the Society of Gynecologic Oncologists, and the American Cancer Society, with significant support from the Ovarian Cancer National Alliance, formed a consensus statement on ovarian cancer, agreeing that the disease has specific symptoms.
Research suggests that the majority of women with ovarian cancer experience symptoms. Symptoms vary and often depend on the location of the tumor and its impact on the surrounding organs. Many ovarian cancer symptoms mimic those of less life-threatening conditions such as irritable bowel syndrome.

In June 2007, the Gynecologic Cancer Foundation, the Society of Gynecologic Oncologists, and the American Cancer Society, with significant support from the Ovarian Cancer National Alliance, formed a consensus statement on ovarian cancer, agreeing that the disease has specific symptoms.

The Ovarian Cancer Symptoms Consensus Statement:[i]Historically ovarian cancer was called the “silent killer” because symptoms were not thought to develop until the chance of cure was poor. However, recent studies have shown this term is untrue and that the following symptoms are much more likely to occur in women with ovarian cancer than women in the general population. These symptoms include:
-Bloating
-Pelvic or abdominal pain
-Urinary urgency or frequency
-Difficulty eating or feeling full quickly

Women with ovarian cancer report that symptoms are persistent and represent a change from normal for their bodies. The frequency and/or number of such symptoms are key factors in the diagnosis of ovarian cancer. Several studies show that even early stage ovarian cancer can produce these symptoms.

Women who have these symptoms almost daily for more than a few weeks should see their doctor, preferably a gynecologist. Prompt medical evaluation may lead to detection at the earliest possible stage of the disease. Early stage diagnosis is associated with an improved prognosis.

Several other symptoms have been commonly reported by women with ovarian cancer. These symptoms include fatigue, indigestion, back pain, pain with intercourse, constipation and menstrual irregularities. However, these other symptoms are not as useful in identifying ovarian cancer because they are also found in equal frequency in women in the general population who do not have ovarian cancer.
Okay - let's talk screenings - here is what the folks at ovariancancer.org says:
Early detection of ovarian cancer saves women’s lives. No screening test exists that can test all women for ovarian cancer. The Pap test does not test for ovarian cancer; it screens for cervical cancer.

Not only do researchers need to develop an early detection test for ovarian cancer, like mammograms for breast cancer and Pap tests for cervical cancer, but also women and medical professionals need to become more aware of ovarian cancer symptoms.

While no early detection tool exists for all women, several tests exist for women who are at a high risk. If a woman has ovarian cancer symptoms, a strong family history, or a genetic predisposition such as a BRCA mutation, doctors may monitor her with one of three tests or a combination of them:

Blood Test
The protein CA-125 exists in greater concentration in cancerous cells. Though a high count of this protein may help doctors identify ovarian cancer, premenopausal women may have an elevated CA-125 due to benign conditions unrelated to ovarian cancer. Uterine fibroids, liver disease, inflammation of the fallopian tubes, and other types of cancer can raise a woman’s CA-125 level, often causing a false positive test for ovarian cancer.

Although the CA-125 blood test is more accurate in postmenopausal women, it is not a reliable early detection test for ovarian cancer. In about 20 percent of advanced stage ovarian cancer cases and 50 percent of early stage cases, the CA-125 is not elevated even though ovarian cancer is present. As a result, doctors generally use the CA-125 blood test in combination with a transvaginal ultrasound.

The CA-125 blood test can be an important tool for evaluating the disease’s progress and tumors’ response to treatment. Additionally, this test can monitor a woman’s CA-125 level for evidence of recurrence.

OVA1 has also been approved by the Food and Drug Administration (FDA).

Transvaginal Ultrasound
A transvaginal ultrasound is a test used to examine a woman’s reproductive organs and bladder.
To administer the test, the doctor inserts a probe into the woman’s vagina. The probe sends off sound waves which reflect off body structures. The waves are then received by a computer that turns them into a picture.

Pelvic Exam
A pelvic exam should be a part of a woman’s regular female health exam.
This exam requires the doctor to place one or two fingers into a woman’s vagina and another over her abdomen to feel the size, shape, and position of the ovaries and uterus. Ovarian cancer is rarely detected in a pelvic exam and usually in an advanced stage if it is.
In the end... I think all women should walk around with a tiara and a string of pearls. We deserve it. With all of the various ways our body tries to break down - we should proudly parade through the streets. With our ability to create life.. and in turn, our bodies can break down on us. Sometimes there is no other reason than - we are pre-disposed. Let us walk proudly with our crown jewels and know we are special. As one of God's most special creatures - let's demand better screening, better treatment and better education.
I'll dive into sleep issues tomorrow. ;-)

1 comment:

Modomadre said...

Nicole - this is so thorough and I want to shared this with everyone I know...I can't tell you how much time I spent researching symptoms and what not when my aunt was diagnosed in Sept 2007. It's a year this month that she passed away and I can't believe what she had to go through to make it as long as she did. The chemo she got was extremely aggressive... directly into her stomach and also into a port in her chest. She made it through all the chemo except the last one and the doctors at UAB said she made it longer than anyone they had ever seen before. Still, this type of cancer scares the hell out of me. Like you, it's in the back of my mind ALL the time since my mother went through breast cancer in 2007 too. Two sisters (mom and my aunt) with cancer in the same year. That's just too surreal. I pray a cure can be found soon. There are just too many people suffering with ovarian cancer... Thanks again for posting this. We all need to be more "aware" and we need to be advocates for our own health.

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