A ""Conversation"" With Doug Ulman About Cancer In Young Adults

Doug Ulman is the founder of the Ulman Cancer Fund for Young Adults, a survivor of 3 different bouts with cancer, and a marathon runner. He talked about getting strength from the challenges of cancer while answering questions from guests in the chat room. (See more of his story under Stories and Experiences on cancerpage.com.)

HOST Chris: Welcome to our special guest, Doug Ulman, President and Founder of the Ulman Cancer Fund for Young Adults. And welcome to our Guests. Doug, I know you have had cancer 3 times. Can you tell us what kinds and what happened?

DOUG ULMAN: Sure. I was diagnosed with Chondrosarcoma in August of 1996 and then Melanoma in March and June of 1997. All three came as a huge surprise as I was a college athlete and 19 years old at the time. I hadn’t been feeling any pain or symptoms, but rather went to see the doctor for an unrelated breathing problem and ended up having a tumor removed from my chest a week later. Chondrosarcoma is a cartilage tumor that usually attaches to bone. My tumor was located in my rib cage between my spine, lungs, and ribs. It is a very rare and slow growing tumor. I think somewhere in the range of 500males per year are diagnosed with Chondrosarcoma.

HOST Chris: What happened?

DOUG ULMAN: After the doctors removed the tumor and part of one of my ribs, there was much debate as to what to do next. In the end, I was fortunate that I didn’t undergo further treatment. Since it is such a slow growing tumor, doctors preferred to wait and see if it would return. It has been almost four years and no return!

HOST Chris:  Great! But then you had the Melanoma twice!

DOUG ULMAN:  Exactly. Several months after my first diagnosis, I had a check up and my physician pointed to a mole on my chest and said you may want to have that checked out…He sent me to a dermatologist for a biopsy and 2 weeks later I was told that I had Melanoma. What a scary disease. Melanoma is the most deadly form of skin cancer. It is also the most deadly form of cancer, period. It usually appears in a mole or on as a skin lesion. Doctors remove the lesion and perform a biopsy to determine whether or not it is cancer. In my case, they found out it was Invasive Melanoma.

GUEST Question: What was the treatment?

DOUG ULMAN: I had the mole on my chest removed and then I underwent a surgery to further excise the area. Now I have a 5-inch scar on my upper arm from a mole that was smaller than a pencil eraser. Luckily, doctors do not believe that the cancer has spread. I am now seen regularly for checkups on all my moles and my lymph nodes since that is where the Melanoma will most likely spread. I do however have a greater disposition to having further melanoma diagnoses. Sun protection and regular skin self-exams are so important to detect melanoma early. Within a 10-month span I went from being a regular college kid to a 3-time cancer survivor. I learned a lot.

GUEST Question: Were you angry after the third diagnosis of cancer in such a short time?

DOUG ULMAN: Yes, I was 19 and now I am 23. I went through a pattern of emotions each time and anger was definitely one of them. Also, fear, denial, pain, frustration, all played a part as well. I did, however, soon realize that attitude and positive thinking could play such a vital role in recovery.

GUEST Question: Did you date during your treatments or was your health your main focus?

DOUG ULMAN: I was in college and my social life was definitely compromised. I went through a period of time, when I didn’t go out (especially because I didn’t want to be around smokers). I also went to bed frequently at 8 or 9 o’clock. It took about 6 months to get back to normal college life.

HOST Chris: Many people say cancer changed their life; in your case it really changed your life. You went on to create the Ulman Cancer Fund for Young Adults.

DOUG ULMAN: Yes, cancer is the best and the worst thing that ever happened to me. I mean that. It has allowed me to develop an attitude unlike many 23 year olds. It has also allowed me to help other people through our foundation, The Ulman Cancer Fund for Young Adults.

GUEST Question: What does your organization do?

DOUG ULMAN: When you have cancer at age 19, you learn that cancer does not discriminate. It affects everyone. Black and while, young and old, etc. Our organization provides support, resources and education to young adults, their families and friends, who are affected by cancer. When I was diagnosed, there was such a lack of support for people in this young adult age group. The issues that young adults deal with are very unique. They have to address concerns with insurance, dating, fertility, possibly being away from home, disclosure to friends and family, etc. These are tough issues for people who are becoming independent and are now forced to be dependent on so many people.

GUEST Question: If you organization has a web site, what is the address?

DOUG ULMAN: Yes, check it out and let us know what you think: http://www.ulmanfund.org./ One of the things we try to do on the web site and in other ways is provide info and support so that people can focus on getting well.

GUEST Question: Doug, many young people –and many older people– have a hard time following through on prevention and detection practices. Many people don’t believe it will happen to them. What are the most important prevention and detection practices that you would recommend for young people especially?

DOUG ULMAN: Fear has long been an issue among young people, so they don’t do anything. I would recommend several things. One is to use sun protection practices. Wear sunscreen, hats, glasses, and long sleeves. Sun damage is proven to cause melanoma. Another good idea is for young men and women to practice breast and testicular self-exams. Testicular cancer strikes men between 15 and 35.  Many people do not know that. It is one of the most curable diseases –IF detected early. Other than that, I just hope that young people will eat right and take care of themselves. I don’t want anyone to have to go through what I have endured.

GUEST Question: Do you think young people forget that sexually transmitted diseases are linked to some cancers, for example, the HPV virus is linked to cervical cancer.

DOUG ULMAN: I don’t think that our schools do a good enough job teaching about cancer. Every high school student should learn about cervical, ovarian, testicular, and breast cancer. They should learn self-exams and safe sex practices.  Instead we shy away from teaching these topics, when they could save lives. A refresher course for many young adults would not be a bad idea either.

HOST Chris: You didn’t just recover from cancer, you went on to continue to run marathons! You’re a great example of the power of positive thinking. Where was your last marathon?

DOUG ULMAN: My last marathon was in Las Vegas in February. I am running a half marathon on trails this coming weekend in California. However, the best event that I participated in was last fall in the Himalayas! I had the opportunity to travel to India and take part in a 100-mile, 5-day stage race through the mountains. It was incredible!

GUEST Question: Did you find yourself becoming religious or more religious through your ordeal?

DOUG ULMAN: After dealing with cancer for three years, standing at 15,000 feet looking at Mt. Everest was almost like returning to life. I became more spiritual. I think a lot and write more frequently in a spiritual way, but I would not characterize myself as very religious. Setting goals, such as finishing 100 miles in the Himalayas has become important to me.

HOST Chris: What are your goals for the Ulman Fund? And for yourself?

DOUG ULMAN: Goal setting is so crucial when battling cancer. The goals for the Ulman Cancer Fund include setting up support groups in cities across the country for young adults, preaching prevention and early detection and continuing to link survivors through our survivors network on our web site.

Personal goals include continuing to be a national cancer advocate. I want to testify, write and speak all over about the needs and issues of cancer survivors. There is no reason this country should watch half a million people die from this disease every year. We need to advocate for survivors and for a cure.

GUEST Question: Did you notice younger patients like yourself being treated differently form the older patients?

DOUG ULMAN: Yes, there is differences in the way people are treated. The system is set up for pediatrics and adults. There is no in between. I was 19, so I was with the adults. If I had been 18, I would have been with the children.

HOST Chris: You mentioned that the Ulman Fund works with local support groups. What do the local groups do?

DOUG ULMAN: They serve as a place for young adults to interact with a trained facilitator. I had a great family and wonderful friends and teammates, but I wanted to talk to other cancer survivors. We are providing people a place to come so they don’t think they are all alone. When you have cancer as a young adult, you feel all alone. The groups meet regularly and are totally free to the participants. The Ulman Cancer Fund pays for the groups for Young Adults. They meet in different places depending on the city. Some meet in the offices of the facilitator and others meet at cancer support centers such as Gilda’s Clubs. We currently have groups in Columbian and Baltimore, Maryland as well as New York City, and Providence, Rhode Island.

HOST Chris: Doug, I know you have to get back to work, so I want to say Thank You so much for your time. We at cancerpage.com really appreciate your time and we support your work with cancer patients. I know our two organizations will continue to work together to help patients get information and also find each other for the moral support that is so important.

DOUG ULMAN: Thank you so much for having me. I look forward to doing it again soon!

HOST Chris: Thanks, Doug. And thanks to all who joined us today.

 SOURCE:

• Doug Ulman was guest speaker on cancerpage.com June 20, 2000