Fibroid Relief Speaker s Kit. Core Message p. 2. Publicity for Speaking Session p. 2. Organizing a Speaking Session p. 2

Transcription

1 Fibroid Relief Speaker s Kit Table of Contents Helpful Information Core Message p. 2 Publicity for Speaking Session p. 2 Organizing a Speaking Session p. 2 Tips for Public Speaking p. 3 Speaker Feedback p. 3 Content for Speaking Session Basic Fibroid Statistics p. 4 Outline of Fibroid Information for Speakers p. 4 What Are Fibroids? pp. 5-6 Treatment Options for Uterine Fibroids pp. 7-8 Talking to Your Doctor About Fibroids p. 9 Follow Up Fibroid Relief Survey for Attendees p. 10 1

2 Core Message Women have a variety of options when it comes to getting treatment for uterine fibroids. Non-surgical options can result in less recovery time and fewer complications and also allow a woman to keep her uterus. Publicity for Speaking Session Electronic flyer available from Fibroid Relief (Word document) o Please add your own date and location. The Word document can be saved as a PDF and then ed to potential attendees. Organizing a Speaking Session Contact Person Expectation o Length of talk o Context of talk Audience o Size o Background in subject matter o Specific interests related to subject matter Set up o What is the room like? o Presentation equipment o Microphone What to Bring o Electronic equipment o Flash drive or CD o Informational materials/handouts Fibroid Relief brochure with treatment chart o Bottle of water 2

3 Tips for Public Speaking Be Comfortable with the Material Practice the Presentation Tell the Audience a Little About Your Personal Connection to Fibroids Don t Read Directly from the PowerPoint or Your Notes o Use Bullet Points to Help You Keep Your Place Speak from the Heart Feel Free to Use Humor to Build Rapport with the Audience Allow for Audience Questions if you are comfortable with this o Remember that it s okay to say you don t have an answer o Try to refer someone to a place they can get the answer if you do not have it Speaker Feedback if appropriate for that particular group o Fibroid Relief survey to be distributed to attendees after talk 3

4 Basic Fibroid Statistics Uterine Fibroid Statistics o White Women: up to 70 % by age 50 will develop fibroids o African-American Women: up to 80% by age 50 will develop fibroids o Only percent of these women will have fibroids that cause symptoms o About 200,000 hysterectomies performed annually in the U.S. for fibroids Outline of Information for Speakers Fibroid Relief Power Point Presentation o Available from Fibroid Relief for Downloading onto a CD or Flash Drive o Feel Free to Adapt for Your Specific Talk o Find Out Ahead of Time How The Slides Will Be Advanced (by you or an AV tech) What Are Fibroids? (Please see pp. 5-6, entitled What Are Fibroids?) o What Are Fibroids? o What Causes Fibroids? o What are the Symptoms of Fibroids? Treatment Options (Please see p. 7-8, entitled Treatment Options for Uterine Fibroids ) o Watchful Waiting o Hormone Therapy o Focused Ultrasound (FUS) o Myomectomy o Uterine Fibroid Embolization (UFE) o Hysterectomy 4

5 What Are Fibroids? Uterine fibroids (medically known as uterine leiomyomata) are common, non-cancerous (benign) tumors of the uterus consisting of smooth muscle cells and connective tissue. A woman may have one fibroid or groups of several fibroids. Fibroids range in size from less than 1 inch to more than 8 inches across. What Causes Fibroids? The cause of fibroids is unknown, however a combination of hormonal, genetic, and environmental factors is associated with the chance that a woman will develop symptomatic fibroids: Hormones: Fibroids are associated with increased estrogen production. They are rare in women less than 20 years of age as well as in postmenopausal women. Estrogen levels vary with menstruation, with menopause, and with some medications Environment: Alcohol consumption and a sedentary lifestyle have been associated with fibroids. Researchers are investigating how environmental toxins affect gene activity in the uterus. Ethnicity: Not only are African-American women more likely to develop fibroids, their fibroids occur at a younger age, and are often larger and more numerous than in other ethnic groups. Asian women have a lower incidence of symptomatic fibroids. BMI: Women who are overweight or obese, based on their BMI (body-mass index), have a slightly higher risk of developing fibroids. Pregnancy: Women who have given birth seem to have a lower risk of developing uterine fibroids. Recent information indicates that pregnancy may protect against fibroids one theory is that fibroids are lost during the uterine changes (involution) in the weeks following childbirth. What are the Symptoms of Fibroids? How do you know if you have uterine fibroids? More than 70 percent of women will develop uterine fibroids at some time. For reasons not yet understood, some fibroids cause severe symptoms and others do not. Fibroids tend to become symptomatic in women 35 to 50 years old. Symptoms decrease after menopause in women not taking estrogen-replacement therapy. The most common symptoms are: Menstrual discomfort Periods may be abnormally heavy and last more than a week. Some women are concerned about socially embarrassing bleeding and hesitate to engage in their normal activities. Bleeding may be severe enough to cause anemia. Bleeding between periods Submucosal fibroids are most likely to cause abnormal bleeding, but any bleeding between periods should be checked by a physician. 5

6 Leg, back, or pelvic pain or pressure A fibroid increases the size of the uterus, sometimes to the size of a 4 or 5 month pregnancy. The enlarged uterus is often lumpy and presses on nearby structures such as the bladder and lower intestine, causing constipation or frequent urination. Difficulty conceiving or miscarriage Most women with fibroids do not have fertility problems, but sometimes fibroids make it more difficult to become pregnant by natural methods. Fibroids large enough to significantly change the shape of the uterine cavity can be associated with miscarriage, premature labor, and complications of labor. Diagnosis by a physician usually requires a routine pelvic examination to evaluate the size and shape of the uterus. A uterus with fibroids feels larger and has a more irregular shape. Ultrasound, MRI, or CT imaging may be used to confirm the diagnosis. 6

7 Treatment Options for Uterine Fibroids Watchful Waiting Watchful waiting is suitable for women whose fibroid symptoms are mild, who are not family-complete, or who are nearing menopause. Women may consider adopting lifestyle changes recommended by their physicians to alleviate discomfort. Insurance Coverage: None needed Hormonal Therapy Hormonal therapy encompasses birth control pills, and hormone therapy. A recent development in hormone therapy is the administration of synthetic GnRH agonists (gonadotropin releasing hormone agonists), which reduce the amount of estrogen produced by the body. Lower estrogen levels cause the fibroids and the uterus to shrink, relieving symptoms. GnRH agonists also stop menstrual periods, speeding a woman s recovery from anemia. However, if therapy is discontinued, fibroids grow back within 4 to 6 months. Women are unable to conceive while on most hormonal therapy. Insurance Coverage: Yes What is Focused Ultrasound? Before focused ultrasound was approved by the FDA in October 2004, women s options for non-invasive treatment of uterine fibroids were limited. Now magnetic-resonance-guided focused ultrasound, or MRgFUS, offers the possibility of a non-surgical, outpatient procedure that can relieve fibroid symptoms and enable women to return to normal activity within 1 to 2 days. Focused ultrasound combines magnetic resonance imaging (MRI) with focused high-intensity ultrasound waves. High intensity focused ultrasound, often called HIFU, and MRI techniques have been utilized separately for years, yet their combination has allowed for advances in treatment potential due at least in part to the powerful imaging capabilities of MRI. Magnetic resonance imaging gives the physician a 3-dimensional view of the uterus and fibroids. It also provides real-time feedback about the temperature and tissue changes that occur as each fibroid is treated. High intensity sound waves are focused on individual fibroids much like a magnifying glass focusing the sun s rays only the focal point is hot enough to cause cell death. Requiring no incision, no hospital stay, and allowing a rapid return to family or work, focused ultrasound offers women with symptomatic uterine fibroids a treatment option worth considering. More than 7,000 patients have been treated around the world since Insurance Coverage: Minimal in the U.S., Some in the U.K., Can participate in a clinical trial as an alternative 7

8 Myomectomy A myomectomy surgically removes fibroids from the uterine wall. Although fibroids in the uterine cavity can be removed through the vagina and cervix, fibroids within the uterine walls or on the outer surface require an incision. A hysteroscopic myomectomy removes one or more fibroids (mostly within the uterine cavity) using a hysteroscope through the cervix. A laparoscopic myomectomy removes fibroids (typically up to 6 cm in size depending on location) on the outside of the uterus via a small incision in the abdominal wall. An abdominal myomectomy requires incisions in the abdomen and in the uterus to access the fibroid. With myomectomy, reproductive potential is spared it is generally safe to conceive after adequate healing time. Cesearean section may be required for delivery. Insurance Coverage: Yes UFE Uterine fibroid embolization (UFE) is an alternative to surgery. Previously performed to stop postpartum hemorrhaging, it has been used increasingly to treat uterine fibroids since the mid- 1990s. A clinician inserts a small catheter through the femoral artery in the groin and guides the catheter to arteries that supply the uterus, using X-ray imaging. Small plastic particles are injected through the catheter into blood vessels that supply the fibroid. The particles block blood flow to the fibroid, causing it to shrink, which relieves the symptoms typically within 2-3 months. UFE can be considered for women who are not family complete, but in consultation with an experienced interventional radiologist. Insurance Coverage: Yes Hysterectomy Hysterectomy is still the most common treatment for women with uterine fibroids. Of the halfmillion hysterectomies performed in the United States each year, one-third are for the treatment of fibroids. The uterus is entirely removed in a hysterectomy, eliminating any possibility of fibroid recurrence. The surgeon may use an abdominal or a vaginal approach, and the woman may retain the ovaries. Hysterectomy is a frequent choice of women whose fibroids are large, or who experience heavy bleeding. However, the procedure should be chosen only by women who are family complete. Insurance Coverage: Yes Talking to Your Doctor About Treatment Options 8

9 o Use the Fibroid Relief Treatment Chart (in brochure and available on Fibroid Relief web site) o Be sure to discuss the level of invasiveness with which you are comfortable o If you are not satisfied that you ve been given sufficient options, seek a second opinion Many insurance plans allow for this; check with you provider o Be aware that the size of the fibroid will sometimes determine the course of treatment 9

10 1. On a scale of 1 to 5 (5=excellent), how would you rate the event? a. 1 b. 2 c. 3 d. 4 e How often could you envision attending an event like this again in the future? a. Once a month b. Once every other month c. Once every few months d. Once a year e. I probably won t attend another event 3. Did you think having a health care professional at the event was helpful? a. Yes b. No c. If no, who would you prefer lead the event? 4. What would encourage you to return to another event or refer a friend to one? 5. What was the least beneficial aspect of the event for you? 6. On a scale of 1 to 5, how would you rate the venue? a. 1 b. 2 c. 3 d. 4 e Any additional suggestions or comments? 10