Living with Mohs: Battling Chronic Skin Cancer

My Mohs story actually began about 50 years ago when, as a youth, I developed chronic head-to-toe psoriasis. Psoriasis—characterized by thick, red, scaly patches on the skin that sometimes itch—is a life-long condition thought to be caused by a malfunction in the immune system. My psoriasis was extensive, and by adulthood, after getting married and entering the work force, I sought out more aggressive treatments to help manage the disease. At the time, treatment options were limited. Some of the therapies used back then would be considered inappropriate by today’s treatment standards. These treatments put me on a path to skin cell damage that would eventually lead me to my first Mohs surgery, which was 5 years ago.

To treat my psoriasis, my dermatologist and I elected to use primary topical steroids and PUVA (psoralen + ultraviolet A [UVA]) light therapy. PUVA therapy and exposure to natural sunlight helped keep my psoriasis under control so that I could function in the world as a working adult and provide for my family. As I mentioned, my psoriasis was particularly severe, so for many years, I went for PUVA therapy an average of three times per week. The UVA in these treatments burned my skin but helped my psoriasis. I was never aware that this treatment could cause the type of internal damage to my skin cells that occurred over the years. I don’t think my doctors were aware of it either. Remember, the drugs and other treatments for psoriasis that are available today didn’t exist back then. As different treatments became available I tried them. From topical creams to systemic biological drugs—you name it, I tried it. I developed a rotation of medications and treatments that I could tolerate for a certain length of time until the toxicity in my body would build to an unacceptable level. This is a huge downside of chronic severe psoriasis.

Managing and living with my level of psoriasis has been an ongoing challenge—a quality-of-life balancing act. My dermatologist explained that I now have billions of skin cells containing DNA damaged by the very treatments and exposures that helped manage my severe psoriasis. Squamous and basal cell carcinomas have pretty much taken me over. I began to have regular surgeries, more surgeries than I can recall, to remove these cancers.

About 5 years ago, my skin cancers took a very serious turn: one of the cancers on my head migrated to the lymph nodes in my neck. I was diagnosed with stage 3 squamous cell carcinoma of the head/neck. This required a radical neck dissection—28 lymph nodes and the jugular vein on my left side had to be removed. The surgery was followed by 6 weeks of daily radiation to my head and neck. Five months later, two additional tumors were found in my face. These required more surgery coupled with more radiation and chemotherapy. This long, painful incident highlighted the problems and risks associated with generalized squamous cell carcinoma and the importance of careful monitoring along with early, aggressive treatment of skin cancers. So far there haven’t been any signs of additional internal cancers, but the skin cancers do continue to surface on a regular basis unless I am treated with powerful drugs.

Also about 5 years ago, an aggressive squamous cell carcinoma appeared on my foot. This is where Mohs came into my life. I was referred to Dr. Marc Brown at Strong Memorial Hospital as a candidate for Mohs surgery because there wasn’t enough skin on my foot to do a traditional surgery. Mohs successfully removed the cancer, and I haven’t had any problems from that particular tumor since.

My strategy has been to work closely with my primary dermatologist and my Mohs surgeon to monitor skin growths and treat carcinomas with traditional skin cancer surgery, Mohs, and/or photodynamic therapy (PDT). When traditional surgery can’t be implemented, then I go to Mohs. Since my foot surgery, I’ve probably had four or five other Mohs surgeries in various areas. My initial impression was that Mohs surgery was less invasive and therefore less difficult in terms of post-surgery care. This is generally true. However, in my experience, if you have a more involved skin cancer, Mohs can be as difficult to recover from as a regular surgery. Unfortunately, in my case I often require two or three excisions that leave a pretty good-sized wound. This reality once again highlights the importance of early detection of any suspicious skin growth. Mohs is great when early detection finds less invasive skin cancers. And Mohs is always my first and preferred option if the cancer is on an area of my body that is thin-skinned or highly visible like my face. If Mohs isn’t a practical option, then I use a traditional surgery.

Managing the mental health side of a chronic disease like generalized squamous cell carcinoma can be as challenging as dealing with the disease itself—and the mental side of it should not be underestimated by either doctor or patient. Physicians are specialists and are trained to focus first on the disease. However, it is important for everyone on your treatment team to understand the full impact that this kind of chronic condition has on patients. Too often I feel that my life is dominated by the need to deal with the next round of treatments, the effects of treatments, or new/recurring skin cancers and their required surgeries. I see a clinical psychologist who helps me sort out what I can and cannot control and the right kind of coping strategy.

It’s also really important for anyone dealing with a chronic health condition to find something to help you stay as positive as possible—and that’s much easier said than done. I’m a huge music fan. Getting “lost” with my music and guitar is sometimes the most therapeutic option I’ve got: pain and discomfort can get lost in the musical shuffle. Even if the relief is temporary, you take what you can get! Another thing is to remember to live your life as fully as you can despite the all-consuming nature of the problem.

While this may all sound depressing and discouraging (and it certainly is on some days), I do feel fortunate that I was able to retire earlier than planned to devote myself almost full-time to managing this disease with my doctors. I honestly don’t know how people who face similar problems and need to work can muster the enormous energy that’s required.

If you’re facing chronic cancers and the need for ongoing surgeries, my best advice is—don’t think you can do this alone. Use your medical team to find the resources you need to manage this difficult disease and to give some semblance of control over what’s happening to you. My wife also plays a huge role in my effort to stay positive and optimistic. She’s the guardian angel who has been by my side from day one. As a patient I get overwhelmed and don’t hear everything the doctors say. She’s always right there taking notes from the dermatologists and being the second set of ears that I need.

I know I have a chronic disease that is not going to go away. It requires a planned approach with my doctors to monitor and treat the skin cancers before they become too aggressive. Access to Mohs surgery through Strong Memorial Hospital has given me another effective weapon to use in this ongoing war with skin cancer, and I’m very grateful that it and the skilled doctors who can use it so effectively are available to me.

~Bob

Links

•  American College of Mohs Surgery

Published on 03/16/2012 | Last updated on 12/20/2016