Multiple Myeloma Diagnosis- Oncology FAIL!

“Patients diagnosed with a blood cancer (MM) were significantly less likely than patients diagnosed with other cancers to say they completely understood what was wrong when it was explained to them…”

A multiple myeloma diagnosis is difficult. Your oncologist must communicate fully with you

So Be honest. Do you think your oncologist really tried to explain your diagnosis of multiple myeloma (MM) to you or do you think he/she was in a hurry and gave you a cursory, inadequite explanation? More importantly, did your oncologist say anything about the possible long-term and late stage side effects that may kill you someday?

Full Transparancy-Dr. Makely did a great job of telling me that I had multiple myeloma. After that, all communications about my diagnosis of MM went down hill. Just like the article documents below, Dr’s Berger/Lazarus/Cooper spent little if any time communicating therapy options much less the common side effects of each chemotherapy regimen.

Don’t get me started talking about the long-term and late stage side effects that dominated my life since the end of my treatment in 1997.

Among all patients surveyed, 85% said that the way they were told they had cancer was done sensitively
Patients with hematological malignancies were also less likely to say that their treatment options were explained before treatment started (69.4%) compared with the average (73.8%)
Overall, only half of all patients with cancer said that before they started treatment they were definitely told about side effects that might not affect them immediately but could appear in the future

Did your oncologist explain your diagnosis, possible therapies and possible short, long-term and late stage side effects to you? Be honest.

Don’t expect your oncologist to take the time to explain our complicated, incurable cancer or it’s complicated, toxic chemotherapy regimens to you. Turn to the group of experience MM patients, survivors and caregivers in the private, online group called Beating Myeloma.

Scroll down the page if you’d like to learn more- send me a post or question. I will reply to you ASAP.

Thank you,

David Emerson

Myeloma Survivor
MM Cancer Coach
Director PeopleBeatingCancer

Patients With Blood Cancer Less Likely to Understand Diagnosis Compared With Other Cancers

“Patients diagnosed with a blood cancer were significantly less likely than patients diagnosed with other cancers to say they completely understood what was wrong when it was explained to them, according to data from the United Kingdom’s 2017 National Cancer Patient Experience Survey.

Only 59% of patients with a hematological cancer completely understood the doctor’s explanation, which was significantly lower than the 73% average for all patients with cancer. In addition, 4% left with no understanding of what they were facing. In comparison, 80% of patients with skin cancer said they completely understood their doctor’s explanation and only 1.2% admitted they did not understand what they were told.

“Being told that you have cancer can be one of the most devastating experiences of a person’s life, and it is vital that people understand what they are being told,” Sarah Porch, Head of Information and Support Services at Bloodwise, said in a statement. “If people do not understand their diagnosis, then they are not in a position to ask informed questions about their condition or to explain their disease to their loved ones. This is why it is deeply worrying that only 6 out of 10 people with blood cancer come away from their diagnosis fully understanding what is wrong with them.”

Among all patients surveyed, 85% said that the way they were told they had cancer was done sensitively. In addition, 79% said they were definitely involved as much as they wanted to be in decisions regarding their care and treatment.

Patients with hematological malignancies were also less likely to say that their treatment options were explained before treatment started (69.4%) compared with the average (73.8%).

Overall, only half of all patients with cancer said that before they started treatment they were definitely told about side effects that might not affect them immediately but could appear in the future.

Of patients who had hematological malignancies, only 46.4% said they were told about these side effects before treatment and 17.4% said no future side effects were explained.

“Blood cancer is a complicated disease that is less understood than some of the other common types of cancer,” Porch said. “So, it’s important to look at ways to improve how this information is explained to make it as understandable as possible, as well as making sure that everyone is also offered written information about their cancer…””

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Multiple Myeloma Diagnosis- Oncology FAIL!

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Patients With Blood Cancer Less Likely to Understand Diagnosis Compared With Other Cancers

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