Today, we’re extremely proud to introduce our first-ever Empowered! podcast. Empowered! will bring you conversations around topics that are important to patients and care partners.
For our first episode, we meet Andrea Conners. Andrea is Patient Empowerment Network’s Executive Director. Andrea shares a little bit about herself, about PEN, and her inspiration in getting involved.
This podcast was originally published on City of Hope Radio here.
Cutaneous T cell lymphomas are types of non-Hodgkin lymphoma that arise when infection-fighting white blood cells in the lymphatic system – called lymphocytes – become malignant and affect the skin.
Lymphomas are cancers of the lymphoid system and usually arise in lymph nodes.
However, with skin being the largest lymphoid organ in the body and our first line of defense against the outside environment, occasionally it becomes the site of lymphoma formation.
Listen in as Jasmine Zain, MD talks about T cell lymphomas, along with the best prevention and treatments.
This podcast was originally publish on WE Have Cancer by on May 7, 2019 here.
Sasha Denisova – WE Have Cancer
Seeking out a 2nd and 3rd opinion in her cancer treatment resulted in a dramatic improvement in Sasha Denisova’s quality of life.
Sasha first appeared on this podcast in Episode 83 where she shared the struggle she faced getting doctors to take her colorectal cancer symptoms seriously.
During our latest conversation she discussed why she made the decision to forego treatment at the Mayo Clinic in Minnesota to seek treatment at Memorial Sloan Kettering in New York City. We also discussed:
This podcast was originally publish on NPR by John Henning Schumann, Mara Gordon, and Chloee Weiner on September 7, 2019 here.
Finding out you have a serious medical condition can leave you reeling. These strategies from medical and lay experts will help you be in control as you navigate our complex health care system and get the best possible care.
Here’s what to remember:
1. Your primary care doctor is the captain of your health care team.
With any serious diagnosis, there will usually be more specialists to see. Having a primary care doctor you trust helps coordinate the information flow and keep track of the big picture. Your primary is on her toes for possible medication interactions. Regular preventive measures shouldn’t be overlooked, either.
2. Don’t be afraid to get a second opinion.
If you’re offered treatment such as chemotherapy or surgery that can be life-altering, it’s crucial to get more than one opinion, ideally from a doctor working for a different institution. Oncologists and surgeons expect patients to seek second opinions — many provide them as a major part of their practice. If your doctor resents you seeking more opinions, that’s a red flag.
3. Get organized, stay organized, and find someone to help you if you can’t do it yourself.
Make a list of what you hope to accomplish at the doctor’s office. If for some reason you aren’t able to take notes, bring someone along who can act as an advocate and make sure your concerns aren’t overlooked. Ask for copies of your medical chart and test results so that you are part of the conversation — you have a legal right to see your records.
4. If you need a procedure, go to someone who does it all the time.
It’s true for medical care as it is in life: The more a doctor does a procedure, the better at it she’ll be. This means fewer complications and better outcomes. It’s OK to ask your doctor how many times she’s done a procedure; a high volume means competence when things go as planned, and calmness for unforeseen complications.
5. Use the Internet, but use it wisely.
Contrary to what you may think, your doctor wants you to be well-informed and engaged with your health. There’s more medical information available online than ever before, but a lot of it is garbage. Stick with trusted sources like the National Library of Medicine, PubMed.gov, or learn about and use the U.S. Preventive Services Task Force.
6. Figure out what matters to you, and fight for it
Our default setting for health care is that more testing is always good. But that’s often not the case, as tests have side effects and can cause undue anxiety because of false positives or incidental findings. Have a frank conversation with your doctor about your values and what you want (and don’t want!) and you’ll be an empowered patient with a doctor as your advocate, not your adversary.
This podcast was originally publish on WE Have Cancer by Lee on June 18, 2019 here.
Joe Bakhmoutski – WE Have Cancer
Joe Bakhmoutski was diagnosed with Testicular cancer in 2016.He founded Simplify Cancer to provide support and advice to those touched by cancer. During our conversation we discussed:
Simplify Cancer – http://simplifycancer.com/
