Frequently Asked Questions (FAQ)
Since being diagnosed with extramammary Paget’s disease (EMPD), Steve Schroeder has received many inquires about EMPD as well as his path back to normalcy. These answers are based on Steve's experiences and may differ from others with EMPD. The answers are given as examples and should not be used in place of consultation with your own physicians.
Q – Is Extramammary Paget’s Disease (EMPD) cancer?
A – Yes. Extramammary Paget’s Disease (EMPD) is a rare skin cancer, often described as intraepithelial adenocarcinoma. Intraepithelial indicates the layer of cells that form the skin surface. Adenocarcinoma is a type of cancer that forms in glands. EMPD typically forms in apocrine glands (sweat glands found primarily in the armpits, groin, anus, genitals, and around the nipples of the breast). Early recognition of EMPD is important because EMPD diagnosis is frequently delayed and EMPD — in some cases — can become invasive if left untreated. Invasive EMPD can also point to underlying malignancies thus ongoing follow-up with knowledgeable medical professions is prudent.
Q – I have EMPD... How can i find others with with EMPD?
A – To date Steve Schroeder has been in contact with over a 250 people, in 21 countries, diagnosed with extramammary Paget's disease (EMPD). Just contact Steve and he'll attempt to connect you with others who have faced EMPD challenges.
Q – IS There a Suport group for extramammary Paget’s disease (EMPD)?
A – There is a myEMPD support group who's mission is to be a resource to those with EMPD, their families, and their doctors by providing EMPD information and inspiring hope to those affected. Access to the private group is available by invitation. If you or a family member has been diagnosed with EMPD, contact Steve Schroeder for more myEMPD support group information.
Q – How do I know IF i have EMPD?
A – Extramammary Paget's disease (EMPD) often starts as a rash like eczema around the genital, anal or perineum areas of women and men. (EMPD can also appear in the armpit or in the rarest of cases other areas as well.) The most common symptoms include red, scaly or crusty areas around the genital or anal area. These areas often itch. Many men with EMPD describe symptoms as feeling like they have "Jock Itch".
The easiest way to determine if you have extramammary Paget’s disease (EMPD) is to have dermatologist, urologist, gynecologist or surgeon examine you. If they suspect EMPD they may take a punch or shave biopsy. Pathologists may use special immunohistochemical stains to be able distinguish EMPD biopsies.
Q - Do you know of any standard treatments for EMPD?
A - One of the challenges with extramammary Paget’s disease (EMPD) is that it's so rare physicians often must rely on research studies for guidance as they may not have seen an EMPD case previously. This often results in varied treatments as there isn’t a standardized treatment regiment for EMPD. In addition, some hospitals may have a propensity for certain types of treatments based on their staff’s areas of expertise. The location and the size of the EMPD can also impact how EMPD is treated.
Men who think they might have EMPD, often visit a dermatologist or urologist, although this can vary widely between countries. Women frequently consult with a gynecologic oncologist and a dermatologist for guidance in their care. Treatment for EMPD near the anus can involve a colorectal surgeon or colorectal oncologist. Other physicians such as oncologists, plastic surgeons or reconstructive urologist surgeons may also be involved in EMPD care and treatment.
Surgical treatments for EMPD often include Mohs micrographic surgery or wide local excision or a combination of both. While surgery is typical, other forms of treatment are sometimes used. In some cases, EMPD can be so wide spread that surgery is not an option. EMPD treatment can vary by country. Like all cancers, early detection is helpful in having a successful outcome.
EMPD care can vary widely and as such consultation with several doctors, in a multidisciplinary team approach, can be extremely useful. Doctors that have a successful record of treating EMPD previously in other patients can also be beneficial. Extramammary Paget’s disease often reoccurs so those with EMPD should stay alert to any changes as well as be on the lookout for other cancers.
Q – Are there classifications for EMPD?
A – In 2002, Wilkinson and Brown proposed an extramammary Paget’s disease (EMPD) system of classification of either primary (cutaneous origin) or secondary (of non-cutaneous origin). The two EMPD classifications have three subtypes:
Primary EMPD (cutaneous origin)
A) intraepithelial cutaneous EMPD of the usual type
B) intraepithelial cutaneous EMPD with invasion
C) intraepithelial cutaneous EMPD as a manifestation of underlying adenocarcinoma of skin appendage
Secondary EMPD (of non-cutaneous origin)
A) anorectal origin
B) urothelial origin
C) other origin
Other physicians have used an EMPD classification system which has three levels: in situ in the epidermis (IE), microinvasion into the papillary dermis (MI) and deep invasion into the reticular dermis (DI). Both classification systems are used by some physicians, in some countries, but to date neither has not been universally accepted.
Q – What follow-up treatments ARE RECOMMENDED AFTER being diagnosed with EMPD?
A – Treatments and follow-up for extramammary Paget’s disease (EMPD) can vary. Often follow-up includes: quarterly visits with physicians that are knowledgeable about EMPD, skin exams, palpation of lymph nodes, quarterly computed tomography (CT) scans and blood tests to insure no reoccurrence. After the first year of non-reoccurrence, visits and tests are often reduced in frequency. A routine colonoscopy is also part of many follow-up plans. Since every EMPD case varies, it is important to work with your physician to determine the best follow-up plan for your situation.
Q – How Common is EMPD?
A – Extramammary Paget's disease (EMPD) is extremely rare. The occurrence of EMPD appears to vary by world region, race and biological difference. For example, studies indicate that in North American and Europe that EMPD is more common in women at a 4 to 1 ratio to men. In Asia, some EMPD studies indicate it is more common in men. It appears the overall odds of having EMPD in North America is one in several million, with the exact location of the EMPD on the body being a factor. Many think that EMPD is underreported due to the location where EMPD generally appears as well as the average age of EMPD patients.
Q – Can I donate to an EMPD or cancer cause?
A – This website is personally funded by Steve Schroeder and is not registered as a charitable institution. As such Steve is not able to accept donations. However, Steve is familiar with several cancer-related organizations that do take donations and who would love to receive your charitable gifts. They include:
Q – Who was Paget?
A – Sir James Paget was an Englishman, surgeon and pathologist for which varied Paget diseases are named. Paget is known as one of the founders of scientific medical pathology. Paget discovered Paget's disease of the nipple (a form of breast cancer), Paget's disease of the bones, extramammary Paget's disease and Paget's abscess. Paget practiced medicine from 1851 until his death in 1899. Extramammary Paget's disease (EMPD) was first described by Paget in 1874. It was later reported by Dr. Radcliffe Crocker in 1889 who diagnosed EMPD on the penis and scrotum. Doctors Darier and Coulillaud described EMPD on a perianal location in 1893.
Q – Why is Steve Schroeder sharing such intimate details of his cancer PUBLICLY?
A – After being diagnosed with extramammary Paget’s disease (EMPD), only Steve Schroeder's immediate family, work associates and close friends were aware of Steve's cancer. Then while in the hospital recovering from surgery, Steve read a Medical Mystery story in The Washington Post. Within minutes, Steve decided to share his story in order to help others who might have EMPD. That story was published in October 2016.
Steve had no idea of the impact of his decision until emails started to arrive. Today there are people around the world who read the story and were then able to understand their symptoms were more than just an itch. They took a copy of The Washington Post EMPD story to their doctor, and after having biopsies, are now having their EMPD treated. In November 2017, The Washington Post did a follow-up story on EMPD.
That story is also helping change the EMPD conversation between physicians and those with EMPD symptoms.
A family member of an EMPD patient shared this poem by a famous Indian poet and it summarizes Steve's unplanned path:
I slept and dreamt that life was joy.
I awoke and saw that life was service.
I acted and behold, service was joy.
– Ravīndranātha Thākura
Today, Steve openly shares his story so that other people with similar persistent symptoms will go see a doctor and get tested. Finding and treating extramammary Paget’s disease (EMPD) early, like most cancers, is helpful in a successful outcome.
Q – How Do YOU deal with the anxiety OF being diagnosed with a rare cancer?
A – Dealing with the pain and psychological issues associated with extramammary Paget’s disease (EMPD) and its treatments varies by individual. Due to the nature of EMPD, it is not unusual for patients to encounter post-traumatic stress disorder (PTSD), anxiety, and depression after EMPD diagnosis and treatment. For those finding such outcomes it is important to explain your situation to family, physicians, clergy, or others who can offer assistance. For Steve Schroeder, relief comes from his belief in God and the power of prayer and meditation.
Q – I have an empd question not addressed here.
A – Feel free to ask Steve Schroeder about any extramammary Paget’s disease (EMPD) questions you may have. Steve is not a doctor and won't give specific medical advice. However, he is willing to share his EMPD experiences from a first-hand perspective as well as his EMPD knowledge and observations that has been gained by connecting with hundreds of EMPD patients from around the world.
The content on this website, including text and photos, are for educational and informational purposes and to help extramammary Paget’s disease (EMPD) patients and their families understand the issues associated with EMPD. The website is not intended to be a substitute for professional medical advice, diagnosis or treatment. The website does not recommend or endorse specific treatments, tests, physicians, procedures, or products. Please contact your doctor if you suspect you have EMPD.
Unless otherwise credited, all photos, video and audio on this website are copyrighted and may not be used without the express written permission of Steve Schroeder.