Myelproliferative Neoplasms-Blood cancer info missing

Posted by sunnyside17 @sunnyside17, Aug 20, 2019

Hello, moderators, I’m pleading for your help.Over and over I hear how those of us with MPN are not diagnosed when all the signs are present. Please, please update the Mayo Clinic site’s info on blood cancer. I was on the site yesterday and clicked on a link to blood cancers. MPN was not mentioned at all. I clicked on another link to blood cancers on Mayo’s site and again no mention of MPN only leukemias. MPN causes blood markers to ELEVATE yet the blood cancer info only talked about blood markers being low in blood cancer. Also, many doctors still think MPN is just a blood disorder. Time for Mayo and others to please update their info so patients can get properly diagnosed and hopefully slow progression instead of being diagnosed after a stroke or internal bleed sends them to the ER. After 12 years of high platelets and doctors ignoring my symptoms, I diagnosed myself. My story is too common, unfortunately. Thank you for listening.

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Justin McClanahan, Moderator | @JustinMcClanahan | Aug 20, 2019

Hello @sunnyside17. Mayo Clinic does discuss some of the diseases and disorders that the Myeloproliferative Group treats at Mayo Clinic (https://www.mayoclinic.org/departments-centers/myeloproliferative-disorders-group/ovc-20201578), including:

- Primary myelofibrosis
- Post-essential thrombocythemia myelofibrosis
- Post-polycythemia vera myelofibrosis
- Polycythemia vera
- Essential thrombocythemia
- Chronic myeloid leukemia
- Chronic myelomonocytic leukemia
- Chronic eosinophilic leukemia
- Systemic mast cell disease
- Chronic neutrophilic leukemia

As you said, treatment can be difficult while obtaining a specific diagnosis can be frustrating. I'd like to invite @hotfooted to this discussion as well to share her similar difficulties in finding more specific information on MPN.

sunnyside17 | @sunnyside17 | Aug 20, 2019

Hi Justin, thanks for reaching out.
Your post proves my point which is that Mayo inccorrectly refers to Myelproliferative Neoplasms as myelproliferative disorders. These are cancers and until Mayo and others update their websites to reflect this, Patients are not receiving proper diagnosis and care. Also it causes a lot of unneccesary stress and confusion. Our friends, relatives, and doctors do not believe us when we tell them we have cancer because they search it and on many sites it is listed as a disorder. I wish it were just a disorder but it's not. It is a neoplasm (cancer). It is horrible to get this diagnosis and not have support from others. This change from "disorder" to "neoplasm" was made many years ago, I believe in 2010. Why is Mayo still referring to it as "Myelproliferative Disorder" and not "Myelproliferative Neoplasm"? Is there a Mayo hemotologist or oncologist who can weigh in on this?

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