Patients with Rare Cancers Offer Others Who May Be Facing a Similar Diagnosis Advice


On social media, CURE® recently asked its readers with rare cancers what advice they would offer to fellow patients with a similar diagnosis. Here’s what they shared.

Each week on FacebookTwitter and InstagramCURE® asks its readers to share their thoughts with a #CureConnect discussion question.

This past week, we asked: “Do you have a rare cancer? What advice would you offer fellow patients with a similar diagnosis?”

Here’s what some of our readers shared:

  • “I have myelodysplastic syndromes, which (some estimates suggest) only 10,000 cases are diagnosed each year. My type is only 10% of that. It is rare and I often feel lonely, but contacting national organizations such as Aplastic Anemia and MDS International Foundation and the national Myelodysplastic Syndrome Association is a huge help. I also have made contacts on social media with people across the country. – J.B.
  • “Your journey will not look like someone else’s, so be kind to yourself and don't judge what is and isn't happening to you by what is going on with them.” – B.V.
  • “Read, read and read. Learn everything you can and know that it will still be different for you. Know as much as you can about your cancer and make notes on how you feel day-to-day. Take these to every appointment and listen to your body. Above all, trust your instincts.” – B.H.
  • “If you have to Google, stay with reputable sites such as the National Health Service. Take each day as it comes one step at a time and don't compare your symptoms or treatments with others. We are all different. Never ever give up hope.” – A.P.
  • “Find others who have the same type — we are here on social media. People who have been through it really understand it. Get more than one opinion, travel for the right specialist and follow your gut because you know you. If something seems off it probably is. I had stage 4 choriocarcinoma caused by a molar pregnancy. I’m here if anyone has questions.” – M.V.

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