BY GARY PETERSEN
We know that one in five multiple myeloma patients die in the first two months, one out of four in the first year. What could possibly be the reason? Usually a myeloma patient will have symptoms, which will send them to their family doctor. But why do many myeloma patients wait until they have advanced disease to see hematologists/oncologists?
Could it be that some patients refuse to see a doctor until they have let their disease progress too far? I hope not. This is the Macho or Martyr approach to healthcare. So why do we continue to have the misdiagnosis, slow diagnosis, and lack of diagnosis? The sad fact is that even family practitioners lack knowledge about multiple myeloma.
Only some general practitioners get a myeloma diagnosis right the first time!
With 97% of people having never heard of multiple myeloma, we should not be surprised that the average family practice doctor may have little to no understanding of myeloma and its symptoms.
A recent article by the Lancet exposed this in detail:
"A study, led by researchers at the University of Cambridge, found that patients with breast, melanoma, testicular and endometrial cancers are more likely to be referred to a specialist after just one or two consultations. However, patients with some less common cancers such as multiple myeloma, pancreatic, stomach and ovarian cancer, as well as patients with lung and colon cancers and lymphomas are more likely to require three or more visits to their family doctor before they are referred to a hospital specialist. Patients with multiple myeloma, a blood cancer that is notoriously difficult to diagnose since it mimics many other conditions, are 18 times more likely to require three or more pre-referral consultations compared with patients with breast cancer."
How this can delay a diagnosis and make it a far more advanced disease is highlighted in an article in BMC Hematology:
"The time from symptom onset to diagnosis varied markedly by diagnosis: acute myeloid leukemia being 41 days (Interquartile range (IQR) 17–85), diffuse large B-cell lymphoma 98 days (IQR 53–192) and myeloma 163 days (IQR 84–306)."
The interquartile range (IQR), also called the midspread or middle fifty, is a measure of statistical dispersion. This means that the 50% of the patients required between 84 and 306 days to diagnose from symptom onset, but it also tells me that 25% of patients are diagnosed more than 306 days after going to the family practitioner for the first time.
This has not fallen on deaf ears, but not the right ears. Lawyers are starting to see the possible malpractice money in this new information (see example).
The American Cancer Society created a summary which may just help to educate the yet-to-be-diagnosed and their family doctor. It outlines the symptoms:
- Frequent infections
- Nerve tingling and damage
- Bleeding that will not stop
- Bone breakages
- Kidney damage
A standard blood test can be an indicator of possible trouble, even if you show no symptoms. Low red blood cell count, low platelets, high calcium, low white blood cell counts, excess protein in the blood, and more depending on the number of variables tested. A better more extensive list of symptoms and the many diagnostic tests are available at the American Cancer Society site. These tests and measurements should be red flags for your family doctor to pursue additional testing or recommend seeing a hematologist/oncologist.
Because the above data is average, there are some family doctors who outperform these averages. My family doctor is Dr. Arnold Fong of Ponte Vedra Beach, FL, and based on this published data, I owe him my life. He was an exceptional exception and had me diagnosed in just 7 days. Thank You Dr. Fong, and I hope that everyone can find their Dr. Fong.
What can you do to share this important information? First, mention multiple myeloma when you talk with any family physician for any reason. Even a short mention can make a difference in awareness. Then, share information about myeloma on Facebook and Twitter. You may not know others with myeloma symptoms, but your contacts just might. You can also share this pamphlet for family doctors created by the United Kingdom's National Institute of Health.
Good luck and may God Bless your Cancer Journey.
about the author
Gary is a myeloma survivor and patient advocate. His work centers around helping patients live longer by helping them to find facilities who are beating the average survival statistics. You can find Gary's site at www.myelomasurvival.com and follow him on Twitter at @grpetersen1