Lessons of NET Cancer

PRRT Patients Tell Their Stories

Following the early 2018 FDA approval of the first Peptide Receptor Radionuclide Therapy (PRRT) using lutetium Lu-177 dotatate, many people are curious about this new treatment option.

The drug’s manufacturer, Advanced Accelerator Applications (AAA), recently published a booklet featuring five patient stories.  “A Journey of Hope: Toward a Brighter  Future in Neuroendocrine Treatment” featured 13 lessons learned by those facing NETs.

In the booklet, you’ll meet Doug, Eileen, Jennifer, Terry, and Mark. Each manages NET cancer at a different phase of life. The other aspects of their lives include:

  • Teaching kindergarten
  • Starting a family with cancer-related fertility issues
  • Seeing children graduate and get married
  • Starting retirement
  • Parenting young children and dating
  • Enjoying extreme sports

But they share symptoms and at least one treatment approach: PRRT.  As these individuals wind their way through active treatment, relapse, and survivorship they learn:

  • Acceptance
  • Perseverance
  • Strength
  • Humor
  • Clarity

AAA compiled their lessons as hands-on tips for other facing this novel and difficult diagnosis.

Lessons Learned by NET Patients

  1.  NET, like other cancers, affects the whole family, working as a team eases the burden.
  2.  Embrace the life you enjoy, despite the obstacles.
  3.  As it is hard to absorb all the information your doctor tells you in an appointment, ask if you can record the visit.
  4.  Respond to your body’s needs.
  5.  Advocate for yourself.
  6.  Trust that you know your body.
  7.  Specialists can partner with your local doctors.
  8.  Family, friends, and faith can offer invaluable emotional support.
  9.  Live life to the fullest.
  10.  Getting to the right doctor and the right treatment takes time and patience, but it’s worth it.
  11.  Being able to laugh at the challenges makes things feel better.
  12.  Consider what and how to share information about your disease with young children.
  13.  Find positive, meaningful ways to direct your energy, such as hobbies and volunteer work.

Learn more about PRRT in this AAA patient brochure. Check out NorCal CarciNET Community’s nuclear medicine locator to learn more about where treatment may be offered.

Remember, PRRT is not for everyone. Talk to your doctor about your treatment options. 

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