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Talking to Your Doctor About MPN Symptoms

Posted on November 19, 2021
Medically reviewed by
Todd Gersten, M.D.
Article written by
Anastasia Climan

It’s easy to feel overwhelmed during a health care visit with your myeloproliferative neoplasm (MPN) specialist. Even if you have specific questions or concerns, you may find yourself forgetting or holding back on personal details about your symptoms or quality-of-life changes. However, establishing a clear line of communication with your health care team is essential to ensure the best MPN treatment options.

To hear from a provider’s perspective, myMPNteam asked Dr. Gabriela Hobbs how to discuss MPN symptoms at a doctor’s visit. Dr. Hobbs is a blood cancer specialist at Massachusetts General Hospital. If you’re struggling to communicate with your MPN specialist, here are some real-life tips that can make a difference during your next appointment and in your future outcomes.

Common Communication Barriers in Health Care

People withhold information from their health care providers for many reasons. They may have trouble speaking to their provider, feel nervous about being judged, or don’t realize the relevance of certain details.

Fear of Judgment

It’s not unusual for people to avoid telling their providers about their diets, exercise habits, or sexual behavior. However, these can be critical health factors that your doctor should know about. Rather than risk feeling humiliated or reprimanded by their doctor, many people opt to keep the truth from coming out during their appointments.

People may not feel comfortable talking about mental health concerns with their doctors, or they may not realize they’re relevant. The stigmas around mental health leave many people without the support they need for living with an MPN.

If you’re scared to let your doctor know about personal issues or symptoms that you perceive to be embarrassing, it may be helpful to know that health care professionals are bound by a code of confidentiality. Your doctor will never share your private health information unless you preauthorize a release of your information or your provider believes you’re in immediate danger.

Language Barriers

Aside from worries about judgment, people may have a hard time communicating due to language barriers. Addressing language barriers is possible with the right translation tools. Talk to someone at your doctor’s office about language interpretation services (for example, sign language interpretation). Many offices and hospitals have some in-person language services on-site as well as telephone interpretation services. In the United States, medical settings that accept federal funds must provide language interpretation for people with limited English proficiency.

How Communication Affects Treatment Options

Some people keep information from their doctors if they don’t think it’s important. Dr. Hobbs explained what can happen if a seemingly benign symptom like abdominal pain is overlooked by people with MPNs and their providers.

Because abdominal discomfort or early satiety often points to issues with the spleen, there are ways your MPN specialist can target the problem, including starting people on medication to prevent blood clots. However, Dr. Hobbs noted that an enlarged spleen is difficult to detect during a physical exam, so it’s up to the individual and the provider to identify this symptom through conversation.

One member of myMPNteam says that it took a while for their doctor to respond to their complaints of itchy skin, but eventually, they worked out a solution. The member wrote, “I complained about my skin itching and burning for months before the doctor heard me. He told me to take one baby aspirin per day. It stopped instantly. So simple.”

Being honest about your symptoms and forthcoming about your lifestyle habits is essential to getting the best care and avoiding dangerous complications. For instance, if you follow a specific diet, smoke, take dietary supplements, drink alcohol, or struggle with high stress or anxiety levels, it’s important to share these factors with your MPN specialist so they can be mindful of potential side effects and interactions when prescribing your medication. Telling the truth can help prevent dangerous complications like heart attacks or stroke.

Talk to Your Doctor Openly

When you provide your doctor with the full details about your MPN symptoms, you give them the opportunity to connect you with new treatments and resources. After all, living well with cancer isn’t just about chasing a cure. Supportive services, such as nutritional care, spiritual support, and pain management, can improve your everyday symptoms and quality of life.

Additionally, Dr. Hobbs emphasized the importance of provider-to-provider communication by saying. “In terms of multidisciplinary care, I definitely try to work closely with patients’ primary care doctors,” she said. “Making sure that a patient with an MPN is healthy in general is important to being successful with living with an MPN or having success with their MPN care.”

If anything comes up during a visit with your primary care doctor or another provider, be sure to let your MPN specialist know. It’s best not to assume that your providers have had a chance to share information, and you can act as an important liaison to ensure that everyone is on the same page.

Ways To Prepare for Your MPN Specialist Appointment

As your doctor’s appointment approaches, there are several steps you can take to make sure nothing goes unsaid during your time with your provider. This extra effort is vital if you’re experiencing any cognitive issues that make it harder to remember your symptoms or concentrate during the appointment. Taking some time to reflect on how you’ve been feeling since your last visit will provide you with useful details to share.

To think critically about your symptoms, Dr. Hobbs recommended a tool called the myeloproliferative neoplasms symptom assessment form (MPNSAF). She said it’s a good reminder of all the potential ways MPNs can influence how you feel. She encouraged people to ask their doctor if they’re familiar with the MPNSAF and view it online before an MPN appointment.

According to Dr. Hobbs, “It’s a really easy form to find online. It’s a 10-point questionnaire that asks you to rate symptoms on a scale of 0 to 10, where 0 is no symptoms, and 10 is the worst. It’s important to look and think, ‘Oh maybe this symptom that I’m having is actually related to my MPN.’ As an MPN patient, you can go into the visit having thought everything through beforehand.”

Aside from filling out the MPNSAF, it’s a good idea to keep an ongoing journal where you write down symptoms between appointments. Be especially mindful after starting a new treatment or medication. Make journaling a regular part of your daily routine to briefly note any physical or mental changes, like fatigue, irritability, weight loss, night sweats, or shortness of breath. If you’re feeling good on the day of your appointment, it’s easy to forget or downplay any negative symptoms you had a week or two before. By keeping a written log, you’ll have a reference to provide a full picture of how your MPN affects your quality of life.

If you think you’ll have a hard time being honest and open with your doctor, consider bringing a support person or caregiver who can help articulate necessary information during your appointment. Asking trusted loved ones to accompany you can help if you’re shy or nervous about speaking with your provider.

Talk With Others Who Understand

On myMPNteam, the social network for people with MPNs, you can connect with other people living, working, and thriving with MPNs. Members come together to ask questions, give advice, and share their stories with others who understand life with MPNs.

What types of conversations do you have with your MPN specialist? Are there any symptoms you’re struggling to address? Share your story in the comments below, or start a conversation by posting on myMPNteam.

All updates must be accompanied by text or a picture.
Todd Gersten, M.D. is a hematologist-oncologist at the Florida Cancer Specialists & Research Institute in Wellington, Florida. Review provided by VeriMed Healthcare Network. Learn more about him here.
Anastasia Climan is a dietitian with over 10 years of experience in public health and medical writing. Learn more about her here.

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