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 – I have EMPD... How can i find others with with EMPD?
A – To date Steve Schroeder has been in contact with over a 100 people that have been 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. Contact Steve Schroeder for more information.
Q – How do I know IF i have EMPD?
A – Extramammary Paget's disease (EPMD) 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.) 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 stains to be able distinguish EMPD biopsies.
Many people are afraid to have a biopsy taken. It’s not as big of deal as you might initially think. (Just don’t watch as the doctor injects a small needle to anesthetize the area.) All you will feel is a slight pinch and the rest is easy. It is far worse mentally than it is physically!
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 doctors often rely on research studies for guidance and when they do that their treatment can vary based on what they happened to find. In addition, some hospitals may have a propensity for certain treatments based on their staff’s experience. The amount of EMPD that is found can also impact how EMPD is treated.
In Schroeder's case, based on research and discussion with dozens of EMPD patients, he used a combination of Mohs micrographic surgery and wide local excisions for treatment. This required having a dermatologist (with Mohs experience) and a reconstructive urologist surgeon that could work in tandem. Since Schroeder has lived on both the East Coast and the West Coast of the United States, he has worked with a larger group of physicians than the typical EMPD patient might have.
EMPD care can vary widely and as such consultation with several doctors, in a cross-disciplinary approach, can be useful. Doctors that have a successful record of treating EMPD previously in other patients can be beneficial.
In some cases, EMPD can be so wide spread that surgery is not an option. The treatment can also vary by country. Like all cancers, early detection is helpful in having a successful outcome. Extramammary Paget’s disease sometimes reoccurs so those with EMPD should stay alert to any changes in their genital or anal areas as well as be on the lookout for other cancers.
Q – Are there classifications for EMPD?
A – In 2002, Wilkinson and Brown proposed an 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 – In Schroeder's case, after five surgeries over a year and a half period, quarterly visits were recommended with both a reconstructive urologist surgeon and a dermatologist for a year after the last surgery. In addition, skin exams, palpation of lymph nodes, quarterly computed tomography (CT) scans and blood tests are taken to insure no reoccurrence. After the first year of non-reoccurance the visits and tests move to twice a year. A colonoscopy is also part of the review every two years.
Once a person has been treated for EMPD it's prudent to be watchful moving forward. Imiquimod cream was also suggested by some dermatologists in Schroeder's situation but based upon research and discussion with many physicians Schroeder has not included that treatment at this time.
Q – I’m surprised to READ SCHROEder hasn't used Imiquimod cream in HIS EMPD treatment.
A – Many extramammary Paget's disease (EMPD) patients use Imiquimod cream (in an off-label manner) to fight the cancer. This treatment is most common when surgery is not possible or desirable and results vary widely depending on the individual and the scope of the EMPD. Schroeder decided to not use Imiquimod due to the possibility of masking any future EMPD symptoms or causing EMPD to separate into multiple fragments, making any future surgical margin unreliable.
Q – How Common is EMPD?
A – Extramammary Paget's disease (EMPD) is 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 patients.
Q – Why is iT so DIFFICULT to find information about EMPD online?
A – Being rare has its consequences. Extramammary Paget's disease (EMPD) is so rare that Wikipedia's rare cancer subcategories don't list EMPD and UK's Cancer Research "Rare cancers by name" misses it too! Of course you would think the Rare Cancer Alliance or the American Cancer Society or the World Health Organization would have info on EMPD but no. The National Organization for Rare Disorders strikes out but NIH's National Organization for Rare Disorders database comes through.
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 recognized and reported by Dr. Radcliffe Crocker in 1889 who diagnosed EMPD found on the penis and scrotum. 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 recently 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 all 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 EMPD and its treatments varies by individual. For Schroeder the answer is his belief in God and the power of prayer.
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 that has been gained by connecting with many 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.