Doctor says "what's the big deal? It's an old person's thing"

[Lourdes Arvelo]

My father was referred to a hematologist oncologist for a diagnostic impression of “concerning blood results”. I accompanied him to the visit for diagnostic impression. He was told he had “myelodysplasia”. His answer to my question “Are saying he has MDS?”, was “No I’m saying he has old age.” My follow up “Isn’t MDS a precursor for Acute Leukemia?” His response: “That’s a hype that big cancer centers and pharmaceutical companies bring to keep their agenda running.” Here is the most frightening: He is one of only 3 providers in network for his Medicare advantage insurance. None of whom are linked to a NCI Designated Cancer Center. His PCP says she doesn’t think she can justify to his insurance a second opinion, given that he is mild. So I ask, what is mild? He’s had history of fluctuations in his blood levels, has recurrent infections none responsive to intervention, for over a year, fatigue, dizziness, shortness of breath. He’s told it’s COPD. He’s never smoked. Where do I go?

[Anonymous]

Hi Lourdes, Thank you for your post with information regarding your father’s health. I know this is a difficult situation for you and I would recommend that you take him to one of our Centers of Excellence in MDS for a second opinion if you are able to do so. If not, it may be possible for your father’s treating physician to do a doctor to doctor consult with one of our MDS experts on behalf of your father. He should be very carefully assessed before undergoing any treatment. Benefits versus risk analysis should be done with any treatment. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. I hope this information helps. If we can be of any further assistance, please do not hesitate to contact us.

[Timothy Todaro]

Do I have MDS? Male, age 53.

My Mother died of MDS, (and other complications) but that was what was on the death certificate at age 78. I am wondering if I have MDS; aware that it is not hereditary but read it could be. Symptoms I have are: Former Smoker, had Radiation treatment after Radical Prostectamy last year. Bruise/bleed very easy. Last blood work was in February 2016; WBC 3.9, RBC 4.4, Hemoglobin 13.5, Hematocrit-Whole Blood 39.7, Platelet count 126, and Lymphocyte 17. I have an upcoming appointment with my GP and am having blood work done again. If similar results should I ask to see a Hematologist or am I being a Hypochondriac? Any help/comments/opinions would be appreciated.
Thanks,
Tim Todaro
Vilano Beach Florida

• This reply was modified 7 years, 8 months ago by Timothy Todaro.

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