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Multiple Myeloma an incurable disease, but I have spent the last 25 years in remission using a blend of conventional oncology and evidence-based nutrition, supplementation, and lifestyle therapies from peer-reviewed studies that your oncologist probably hasn't told you about.
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Surviving Multiple Myeloma- Team Effort
“the standard 15 or 20 consultations is just not enough, in that patients don’t necessarily get all the information or even are able to digest all the (MM) information when they’re there (at the oncologists)”
I am a long-term survivor of multiple myeloma (MM). I’ve seen the inefficiencies of conventional care up close and personal. After all, this is why I created PeopleBeatingCancer in 2004. The reason for this post is that the survey linked and excerpted below verifies everything that I believe is inadequate about multiple myeloma care. Surviving multiple myeloma requires a team effort.
For the record, I’m not blaming conventional MM oncology. I’m really not. I believe that MM specialists like James Berenson and Ken Anderson are extremely knowledgable M.D.’s.
Cancer is a business and oncologists simply don’t have the time and resources to explain everything that MM patients need to understand.
That is exactly why multiple myeloma patients, survivors and caregivers need MM Cancer Coaching.
The single most striking need identified by the survey of cancer survivors linked below is that oncologists are not the problem. The lack of information, education, side effects, peer groups, even information about a relapse of their cancer- none of these deficiencies identified by the survey were “blamed” on the treating oncologist. The simple fact is that meeting with your oncologist 15 or 20 times over the patient’s active treatment just is not enough time to learn everything he/she needs to know about his/her cancer.
Specifically:
- Almost a third of U.S. patients surveyed felt that efficiency at diagnosis was lacking.
- 25% of patients in the U.S. saying they were not given adequate information about their care and treatment
- Almost a third of cancer patients in the U.S. (31% in the US) said they did not have adequate support to deal with ongoing symptoms and adverse effects, and 31% said they lacked information to help deal with pain.
- Particularly important for multiple myeloma survivors, 35% of cancer patients felt inadequately informed about recognizing when their cancer might be recurring or progressing.
- Particularly important to members of PBC’s MM Cancer Coaching program is that 41% of patients were not given information on available peer support groups…
Have you been diagnosed with multiple myeloma? Scroll down the page, post a question or comment and I will reply to you ASAP.
Hang in there.
David Emerson
- MM Survivor
- MM Cancer Coach
- Director PeopleBeatingCancer
Recommended Reading:
- Cancer Prehabilitation-
- Five Steps to Put Multiple Myeloma Patients in Control
- Cancer-Related Fatigue in Multiple Myeloma
Cancer Patients Report Lack of Info and Support
“An international survey of patients with cancer has highlighted inefficiencies in diagnosis, as well as lack of information and psychological support. Only half of the patients surveyed felt that they were sufficiently involved in decision making.
The survey was conducted in almost 4000 patients and their caregivers from 10 countries, including Australia, Belgium, Canada, the United Kingdom, and the United States.
It also found that, regardless of their health system, over half of respondents had to pay for part of their cancer care themselves…
Caregivers, both current and former, were also invited to take part on behalf of patients who were unable to respond properly or who had died.
In all, 3981 individuals completed the survey, with the majority coming from Poland (29%), Australia (22%), the US (13%), Belgium (10%), Canada (9%), and the UK (9%).
The vast majority (89%) of respondents were current or former patients. The average age was 55 years, and 80% were female.
The most common types of cancer were-
- breast (42%),
- gynecologic (11%),
- hematologic (9%), and
- colorectal/bowel cancers (6%).
Most Inefficiency Was at Diagnosis
When patients were asked where they experienced the most inefficiency during their cancer care, 26% of respondents said that it was during diagnosis, and that proportion rose to 31% among US respondents…
Shared Decision Making
When the questionnaire addressed the issue of shared decision making, about half (53%) said they felt they were sufficiently involved. However, 31% of respondents said they were not given adequate information in a way they could understand about their care and treatment.
The picture was better in the US, with 59% saying they felt sufficiently involved in decision making and 25% saying they were not given adequate information.
However, 39% of respondents overall (and 31% in the US) said they did not have adequate support to deal with ongoing symptoms and adverse effects, and 31% said they lacked information to help deal with pain.
Worryingly, 35% said they felt inadequately informed about recognizing when their cancer might be recurring or progressing.
Wait told Medscape Medical News that these findings were echoed by the answers to the qualitative, open-ended questions in the questionnaire.
“A lot of the patients were saying, ‘I had these side effects and I didn’t know what they were. I didn’t know if they were serious. I wasn’t given a plan to deal with them,’ ” she said.
“That can have an impact on how they respond to treatment, it can have an impact potentially on their adherence to treatment, and it can be very distressing in already distressing situations,” she added.
However, Wait commented that this is “not pointing a finger and going to doctors and saying they’re not doing the right job”.
Rather, it underlines that the standard 15 or 20 consultations is just not enough, in that patients don’t necessarily get all the information or even are able to digest all the information when they’re there”.
It’s when they go back home that all the questions arise.Suzanne Wait, PhD
“It’s when they go back home that all the questions arise, so the key message for me there is [this]: put in place ancillary services, for example specialist cancer nurses, nurse navigators or cancer navigators…who can play the companion role for patients and their families, and answer questions in between those doctor visits,” she said…
Lack of Psychological Support
Unsurprisingly, 69% of patients said that they needed psychological support during or after their cancer care, but only half of them received it. There was no psychological support for 34% of patients who said they needed it…
However, she also believes that sometimes, it is simply a case of the care team not thinking about offering psychological support.
This was reinforced by the finding that 41% of patients were not given information on available peer support groups…
Wait said that this means that many patients are not able to get back to a semblance of normality after their cancer treatment, with the impact sometimes being lifelong…