Legacy Good Samaritan first in Oregon to treat woman’s fibroid through the wrist
Mary Costantino, M.D.

Mary Costantino, M.D.

Mary Costantino, M.D., an interventional radiologist at Legacy Good Samaritan Medical Center, has become the first physician in Oregon to treat a woman’s fibroid through her wrist as opposed to the groin artery.  The technically challenging procedure, known as radial uterine fibroid embolization (UFE), is performed in the Northwest Portland hospital’s catheterization laboratory.  It involves inserting a catheter into the radial artery located in the wrist and is guided by the interventional radiologist into the uterus.  It requires no incision and uses small particles to damage and shrink the fibroids.

“This procedure is transformative for our patients,” said Dr. Costantino. “The difference of accessing the fibroid through the wrist versus the groin is like night and day for patients in terms of recovery time and pain management. My patients are showering, standing up, eating and going home earlier –– and they are very grateful for that.”

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When The Tables Turned: How My Experience as a Patient Brought Me Back to Healthcare

©www.ParadiseEvents.comFrom the time I was a young child through adulthood, an active lifestyle has always been important to me.  I love the outdoors, whether it’s hiking in a Redwood forest, joining friends for a cycling adventure, trekking through the Colorado mountains on snow shoes, exploring a river in a kayak or playing competitive sports.   The combination of fresh air, nature and exercise is my life force—the passion that helps me stay balanced and happy.  Like many people who like to keep moving, a health issue that threatens to interrupt my life and my body is not only scary, it could be life altering.

The symptoms were subtle at first, but eventually would not be ignored; abdominal bloating, increased menstrual bleeding and a feeling that my bladder was constantly full. It soon became socially uncomfortable when I needed to wear extra thick padding to play women’s league tennis matches and I was always the one stopping play to run to the ladies room in between sets.  At that point, I finally gave in and made an appointment to see my primary care physician, who ultimately sent me to a gynecologist.  After two physical exams, blood work and an MRI, the diagnosis was clear.  I had several uterine fibroids, one that was about the size of a grapefruit.  This “grapefruit” was the culprit and the cause of my discomfort.

Having worked in the medical industry, I knew that uterine fibroids are not cancerous and I was quite familiar with the various treatment options available to me, which included a minimally invasive, image-guided procedure (MIIP) called uterine fibroid embolization (UFE). Other more invasive options included varying degrees of surgery, ranging from the insertion of large scopes to cut out or burn the fibroids to a full hysterectomy to remove the fibroids and my uterus. The latter was an unappealing threat to my active lifestyle and would require a minimum of 4 weeks recovery time, including time away from work and exercise.  I knew instantly that a hysterectomy would be my last choice and was surprised when my gynecologist suggested it as the first option. I questioned her about other options, “What about UFE as a treatment option?” I asked.  “I am in my 40s and if the procedure successfully shrinks the fibroids to relieve my symptoms, by the time I enter menopause they will no longer be a risk to grow again.”   She maintained that hysterectomy was the only option that would permanently and unequivocally remove the fibroids and my symptoms. However, I was unwilling to accept the risk and recovery time associated with such a major surgery and I wanted to stay whole.  I decided to get a second opinion.

The next day, I contacted Dr. Robert Kerlan, an Interventional Radiologist at UCSF Medical Center, who agreed to review my films to see if he felt I was a candidate for UFE. In short, the answer was yes!  The procedure took about 1.5 hours.  I recall being awake for part of it, but mostly dozed off as I was given IV medication to make me comfortable.  After the procedure, Dr. Kerlan monitored me for pain and other complications so I stayed over night.  The next morning (less than 24 hours after entering the hospital), I was ready to go home with only a Band-Aid® on my groin.   The procedure was done on a Thursday.  I took Friday off and was back to work on Monday.  The following weekend, I was back in the lineup for league tennis– this time without the extra padding!

My patient experience was one of the compelling reasons that I returned to the healthcare industry and cofounded the Interventional Initiative, a non-profit organization to educate and engage the public about minimally invasive, image-guided procedures such as UFE.  Most women have little to no knowledge about MIIPs or Interventional Radiology and in my situation may have acquiesced to the gynecologist’s recommendation for hysterectomy as a first treatment option.

Treatment options are very personal decisions and each patient must chose what is best for their own body and quality of life. As both a patient and a healthcare professional, I believe that the critical component is having access to accurate, comprehensible information about all available options.

Author:  Susan Jackson, MBA, R.T.(R)(CV)
Co-Founder, the Interventional Initiative
www.theii.org
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The Interventional Initiative

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interventional-initiative

What if you were sick and your doctor gave you two treatment options: surgery or a minimally invasive procedure performed through a pinhole.  Wouldn’t you want to know more?

Most people would.  Unfortunately few patients who could benefit from minimally invasive, image-guided procedures (MIIPs) have ever heard of them.  Because MIIPs are performed through a pinhole using medical imaging to see inside the body, they can safely and effectively treat many diseases so patients can return to their normal lives sooner.  There are MIIPs to treat uterine fibroids, cancer, blood clots, blocked arteries, stroke, aneurysms and so much more.  Specialized doctors perform life-saving MIIPs every day at hospitals and outpatient centers all across North America. So why have so few people ever heard of them?

MIIPs specialists like Interventional Radiologists have focused on finding innovative solutions for patients and developing new MIIPs, but they haven’t focused on telling the world about these incredible procedures.  But someone needs to spread the word.  The pace of innovation is so brisk that the public and even many primary care doctors are unaware of the gamut of available medical options.  As a result, many patients who could benefit from MIIPs never have an opportunity to consider whether they would choose a MIIP or another treatment.  For those who do hear about MIIPs and want to learn more, there are few resources that explain them clearly.

This is why we founded the Interventional Initiative, a 501(c)(3) not-for-profit organization with the mission to educate and engage the public about MIIPs.  Research shows that patients who are empowered with the information to choose the best treatment for themselves actually do better.  We believe that patients should have access to quality information about MIIPs that is easy to understand.

To that end, we are producing visual media about MIIPs that is educational, entertaining and engaging.  Our major initiative is a documentary series titled Without a Scalpel, which follows the real stories of patients whose lives were transformed by a MIIP.  We also produce a short vodcast series titled Behind the Scrubs, which highlights specific MIIPs like UFE, or “uterine fibroid embolization,” to treat fibroids.  Finally, our website, www.theii.org, contains a wealth of information about different kinds of MIIPs – and we are continually growing it.   In the future, our site will also serve as a hub for engaging people who have had a MIIP or are trying to decide whether to have one – patients will be able to share their stories and ask questions of the experts.

Knowledge is power.  Please visit www.theii.org, to see how powerful a little knowledge can be.

Author:  Isabel G. Newton, MD, PhD
Chair, the Interventional Initiative
www.theii.org

Behind the Scrubs E2 Uterine Fibroid Embolization

Credit: Video content from Without a Scalpel, the documentary provided by the Interventional Initiative. www.theii.org

Treating Fibroids at the Molecular Level
By Alicia Armeli

cells

By age 50, as many as 7 out of 10 white women and 9 out of 10 black women will develop uterine fibroids—a type of noncancerous growth responsible for painful bleeding, anemia, and infertility.1

Despite the commonness of this disease, its cause has eluded the scientific community—until now. Researchers are finding that molecular changes within a single uterine cell—specifically the extracellular matrix or ECM—may be the key to finding a cure for uterine fibroids.

No matter its location within the human body, ECM surrounds every cell. Although unique to each type of cell and tissue, ECM is essentially a fluid-like mixture made up of water, sugars, and proteins like collagen.

Because of its fluid-like flexibility, ECM provides organized cell structure and makes things such as communication within and between neighboring cells possible. Myometrial cells found in the uterine wall respond accordingly to such signals.

“Normal cells can be stretched or compressed by the ECM,” says Dr. Phyllis C. Leppert, MD, PhD, Emerita Professor of Obstetrics and Gynecology at Duke University in Durham, NC and President of the Campion Fund—a non-profit organization dedicated to raising money for public education and research in the field of reproductive sciences. “We know myometrial cells produce collagen that’s released into the space around the cells. If the ECM is stiff and isn’t flexible, it can put pressure on a cell, changing its shape and signaling it to produce even more collagen—as seen with uterine fibroids.”

This misfiring of signals is what Dr. Leppert and her colleagues addressed in a recent paper published in Obstetrics and Gynecology International.2 They found that these cells not only respond by producing more collagen but by producing collagen that is abnormal in comparison to healthy tissue. What’s more, these cells don’t go through cell death like normal cells would. Instead, they continue to replicate. Together, all of these factors could contribute to the perfect storm—an ideal environment for fibroid cells to perpetually grow.

“At this time, we don’t know exactly what triggers this cycle,” Dr. Leppert explains. “Uterine cells are much more sensitive to cell disruption. It could be injury to a cell, infection, or chronic inflammation. It’s also possible that there isn’t just one trigger but many causes working alone or together.”

Despite this uncertainty, Dr. Leppert is using what the scientific community already does know about fibroids. Targeting the abnormal collagen found in fibroids may lead to a new minimally invasive treatment option.

To test this theory, Dr. Leppert and a team of scientists at Duke University Medical Center used collagenase—an enzyme made by Clostridium histolyticum bacteria that is able to break down the abnormal collagen found in uterine fibroids.

The team of researchers used samples of fibroid tissue cut from uterine fibroids that were taken after the hysterectomies of seven consented patients. They then injected the tissue samples with highly purified collagenase, a diluting agent, or a placebo. Over the course of 4 days, the samples were incubated, monitored at varying checkpoints, and compared to untreated fibroid tissue samples.

Results were published earlier this year in the American Journal of Obstetrics and Gynecology.3 Before treatment, 37 to 77 percent fibrosis—caused by abnormal collagen—was seen in fibroid tissue samples. After treating fibroids with collagenase, fibrosis was reduced to levels that ranged between 2.4 and 5.3 percent—with complete breakdown of collagen.

Leppert and colleagues also noticed that fibroids became softer and lost their stiffness after treatment—especially when left to incubate longer. “The collagenase is very specific to breaking down collagen found in fibroid ECM,” Dr. Leppert discusses. “When this happens, the pressure on the fibroid cells decreases to that of normal uterine cells. We hope this will change cell signaling and cause fibroids to shrink, relieving bulk symptoms and easing pain and bleeding.”

To further understand its safety and tolerability in humans, collagenase is in the process of undergoing its first stages of clinical trials. By doing so, the scientific community hopes to understand who would benefit most from this treatment.

“Clinical trials will help find the best dosage, understand which fibroids it will work best on, and learn how to do the injection with precision,” Dr. Leppert continues. “It will also determine if single or multiple injections will be needed.  We also hope in the future to use it with additional drugs and will be planning studies to see with which drugs it will work best.”

By homing in on the cause of uterine fibroid growth, a cure may be that much more in reach. “Many of the treatments out there today are surgically oriented,” Dr. Leppert tells Ask4UFE. “To make better treatments available, we need to proactively work on the molecular aspect of the disease.”

ABOUT THE AUTHOR   Alicia Armeli is a Health Freelance Writer, Registered Dietitian Nutritionist, and Certified Holistic Life Coach. She has master’s degrees in English Education and Nutrition. Through her writing, she empowers readers to live optimally by building awareness surrounding issues that impact health and wellbeing. In addition to writing, she enjoys singing, traveling abroad and volunteering in her community.

ABOUT THE DOCTOR  Phyllis C. Leppert, MD, PhD, is an Emerita Professor of Obstetrics and Gynecology at Duke University in Durham, North Carolina. By focusing her research on molecular biology and the development of medical treatments for uterine fibroids, Dr. Leppert is dedicated to finding a treatment that targets the cause of fibroids. In addition to her research, Dr. Leppert also serves as president of the Campion Fund, a non-profit organization that raises money in support of public education and research in the field of reproductive sciences.

References

  1. US Department of Health and Human Services, National Institutes of Health. (2013). How many people are affected by or at risk of uterine fibroids? Retrieved June 22, 2016 from https://www.nichd.nih.gov/health/topics/uterine/conditioninfo/Pages/people-affected.aspx
  2. Leppert, P. C., Jayes, F. L., & Segars, J. H. (2014). The extracellular matrix contributes to mechnotransduction in uterine fibroids. Obstetrics and Gynecology International, Volume 2014 (2014), Article ID 783289, 12 pages. doi:  10.1155/2014/783289
  3. Jayes, F. L., Liu, B., Moutos, F. T., Kuchibhatla, M., Guilak, F., & Leppert, P. C. (2016). Loss of stiffness in collagen-rich uterine fibroids after digestion with purified collagenase Clostridium histolyticum. American Journal of Obstetrics and Gynecology. doi: 10.1016/j.ajog.2016.05.006
Black Women Await More Federal Research Into Fibroids
By Chandelis R. Duster

http://www.nbcnews.com/news/nbcblk/black-women-await-more-federal-research-fibroids-n598661

Mark Your Calendars! July Is Fibroids Awareness Month!
By Alicia Armeli
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With summer in full swing, make sure to leave space on your July calendar for Fibroids Awareness Month. From fashion shows to social media events, the White Dress Project —a non-profit organization behind the cause—is working round the clock to bring fibroid awareness to you.

Moving state by state, this grass roots group has one goal in mind—to one day have Fibroids Awareness Month be observed nationally. And according to them, your state could be next.

“Right now, Florida, Georgia, the city of New Orleans, and New York honor Fibroids Awareness Month,” says Tanika Gray Valbrun, Founder and Executive Director of the White Dress Project. “Our most recent accomplishment is that we obtained South Carolina, Pennsylvania, Washington DC, Maryland, and Virginia—which will be officially announced in 2017. Next we’re working on Illinois, Texas, and California.”

To make this possible, everyday men and women who are passionate about women’s health volunteer as White Dress Project Ambassadors. By liaising with state legislators, White Dress Project Ambassadors work toward either passing a resolution to observe Fibroids Awareness Month or, if a state already participates, persuade them to annually renew their pledge.Uterine fibroids affect an estimated 20 to 80 percent of women by age 50. 1 And while these noncancerous growths can exist without symptoms, for some women they can cause heavy irregular bleeding, anemia, painful intercourse, and infertility.

If you’re one of these women, Ms. Gray Valbrun explains, wearing a white dress is rarely ever possible. “We’ve taken a fashion emblem—the white dress—and have made it a symbol of empowerment and hope for women with fibroids.”

By drawing more attention to the disease, the White Dress Project hopes for more public recognition that can lead to a cure—especially since 600,000 hysterectomies are performed annually in the US alone, with approximately 70 percent done to treat noncancerous conditions like fibroids. 2,3

On July 1st, the White Dress Project kicks off Fibroids Awareness Month by launching its Join the Fight campaign. “To prepare for this, we had a photo shoot with nearly 20 women—each wearing a white dress and boxing gloves. All of them shared their fibroid stories,” Gray Valbrun tells Ask4UFE. “Our message is that we’re going to knock out fibroids and we’re going to fight for legislation, research, and funding.”

During the second week in July, a Facebook LIVE question and answer chat will be offered where women can ask their fibroid questions to some of the nation’s leading doctors. Closing out the month, the White Dress Project has joined with Bloomingdales to host a white dress fashion show on July 27th in Atlanta. To keep up to date with all events and news, women can also follow the White Dress Project on social media platforms like Facebook, Twitter, and Instagram.

It can’t be denied, the White Dress Project knows how to accomplish its goals with style, but Ms. Gray Valbrun stresses this shouldn’t overshadow the overall mission—which is to promote fibroid awareness and offer support to women who suffer from the disease.

“We’re not just a fashion or social organization,” Gray Valbrun emphasizes. “For many, a white dress may simply be something sexy to wear. For us, it signifies more. It says, ‘We all can wear white. Fibroids will not leave us hopeless. This epidemic will not get the best of us.’”

ABOUT THE AUTHOR Alicia Armeli is a Health Freelance Writer, Registered Dietitian Nutritionist, and Certified Holistic Life Coach. She has master’s degrees in English Education and Nutrition. Through her writing, she empowers readers to live optimally by building awareness surrounding issues that impact health and wellbeing. In addition to writing, she enjoys singing, traveling abroad and volunteering in her community.

REFERENCES
1. US Department of Health and Human Services, Office on Women’s Health. (2015). Uterine Fibroids Fact Sheet. Retrieved June 21, 2016 from http://www.womenshealth.gov/publications/our-publications/fact-sheet/uterine-fibroids.html

2. Centers for Disease Control and Prevention. (2016). Women’s Reproductive Health: Hysterectomy. Retreived June 21, 2016 from http://www.cdc.gov/reproductivehealth/data_stats/

3. Corona, L. E., Swenson, C. W., Sheetz, K. H., et al. (2015). Use of other treatments before hysterectomy for benign conditions in a statewide hospital collaborative. American Journal of Obstetrics and Gynecology, 212(3): 304. e1-7. doi: 10.1016/j.ajog.2014.11.031