A possible Parkinson’s disease/melanoma link? Time for a skin check

Posted 2 weeks ago by

Now that summer has passed, have you had your skin examined? Studies have shown that people with Parkinson’s disease (PD) may have an increased risk for melanoma, so skin screenings are extra-important. Take a look at recent research and get some tips on monitoring your moles and skin.

Studies show…

A 2017 Mayo Clinic study found that people with either PD or melanoma are four times as likely to receive a diagnosis of the other disease. The researchers say the PD drug levodopa (which some people believe may play a role in melanoma risk) is not likely a factor in the PD/melanoma connection, according to McKnight’s. They found that the majority of melanomas were diagnosed before the diagnosis or treatment of Parkinson’s disease, so taking levodopa doesn’t appear to be a risk factor.

Future research should focus on genes, immune responses and environmental exposures that could cause the relationship, the researchers say.

Know your “ABCDEs”

Check out the Skin Cancer Foundation’s “ABCDEs of Melanoma” (click here to see images of examples), and make an appointment right away if you spot any of these warning signs:

A = asymmetry. Malignant moles tend to have an odd shape.

B = border. The edges of an early melanoma may be uneven or “scalloped.”

C = color. Watch out for moles that are a spotty mix of colors (from tan to black, or even shades of red, white or blue).

D = diameter. Melanomas are usually larger in diameter than a pencil eraser (but may be smaller early on).

E = evolving. Keep an eye out for any changes in your moles, such as size, shape, color, elevation, or another trait, or new symptoms such as bleeding, itching or crusting.

Also, keep in mind these other risk factors for melanoma, according to the Michael J. Fox Foundation for Parkinson’s Research:

  • Ultraviolet (UV) light exposure (psst: use sunscreen and protective clothing)
  • Caucasian race
  • Older age
  • Male
  • Family history of melanoma or personal history of melanoma or other skin cancers

The Fox Foundation is currently funding studies on the PD/melanoma connection, including one exploring the role of alpha-synuclein (a sticky protein) in both conditions, and others examining the genes or gene mutations involved in the two conditions. Learn more here.

On PatientsLikeMe

Some members report having both PD and melanoma. “I encourage everybody to go to a dermatologist, who has observed thousands of moles, on various skin types, and pay them to do a body scan,” says one member with PD and melanoma (fortunately, a biopsy showed his cancer had not spread). “Melanoma is not slow progressing like Parkinson’s.”

Has your doctor ever mentioned melanoma risk? Join PatientsLikeMe or log in to talk about Parkinson’s and melanoma in the PD forum.

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On a scale of 1 to 10…Pain scales fall short

Posted 3 weeks ago by

As Pain Awareness Month (September) comes to a close, we’re exploring how pain is subjective, and expressing it using the classic 1-to-10 or “smiley face” scale can be tricky. What are the shortcomings of these scales? And what can help you communicate better with your doctor?

Pain scale problems

NPR recently reported about the trouble with the most common pain scales:

  • Numbered scales – A zero-to-10 or 1-to-10 scale may leave patients scratching their head – what if I’m a “4″ right now but was a “7″ when I first called the doctor? Is my “5″ the same as someone else’s and could it lead to over- or under-treatment? (Note: Clinicians only consider scores over 7 to be severe; 4 to 7=moderate; and 1 to 3=mild.)
  • Face scales – The well-known Wong-Baker FACES pain rating scale was originally created for children, but it’s still widely used for all ages. Not everyone can equate their pain level to certain emotions or facial expressions. For example, some people with autism or chronic severe pain may not understand which face to choose – if I’m not crying, is my pain not severe?

Adam Rosette, a 33-year-old who had surgery to remove multiple benign brain tumors, tells NPR he wonders if he “low-balled” his pain while in the hospital. “I don’t think I ever answered higher than a ‘7’ because an ‘8’ would be, in my mind, like I’m missing half of my body or a limb,” he says.

In the PatientsLikeMe Chronic Pain forum (psst, join our community for link access), members have talked about the challenges of discussing pain with their doctors. Some say that pain management is a tough topic these days because of fears surrounding pain medication dependency and the opioid crisis.

5 pointers for conveying pain

U.S. experts in pain management are working on new ways to assess pain levels more accurately. Some researchers are even developing devices to measure pain more objectively.

Meanwhile, NPR rounded up a few ideas for communicating with your care team about pain. Here are some of their tips, plus a few others:

  • Get “a little more flowery,” pain management specialist Dr. Chrystina Jeter says. It’s OK to go beyond a pain scale rating and describe your pain as aching or burning, or to compare it to the worst pain you’ve ever felt, such as kidney stones, childbirth or a surgical wound.
  • Portray your day – explain which times of day or activities are most difficult for you, and get specific about how pain has impacted your ability to function (for example, ‘I can no longer chew, run, walk, get out of bed, etc.’). Hint: Tracking how you’re feeling every day on PatientsLikeMe can help you remember the details at your next doctor appointment.
  • Go into your history, including how long you’ve lived with this pain, what other treatments you’ve tried or considered, and even your family history of pain sensitivity (which is inherited, pain specialist Dr. William Maixner points out).
  • Explore other pain scales – because there are actually several different ones (some more serious than others). Look into how others with your particular condition explain their pain, such as this pain scale by a blogger with lupus (it’s a little tongue-in-cheek but no laughing matter). Which brings us to…
  • Discuss your suffering. “Even if a perfect scale could be designed, it isn’t clear that it could ever overcome the obstacles that prevent us from explaining our pain,” says one Medium writer with chronic pain. “Ultimately, it isn’t really about pain — though that is the root. The problem is suffering. All of the personal, cultural and biological factors that make us unique make it almost impossible to convey our inner experiences with other people.”

Beyond talking about your physical function, tell your doctor and care team about the mental toll your pain or symptoms are causing. Again, be specific – “physically, my pain has been a ‘5’ for so long that, emotionally, I’m at a ‘9.’” (There are separate assessments for mental health, of course – just don’t assume your doctor instinctively knows about your mental anguish when you talk about your physical pain.)

How do you convey pain to your doctor or care team? Join PatientsLikeMe or log in to connect with other members on this topic in our forum.

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