Multiple Myeloma - Why A Myeloma Specialist Is Not Optional But A MUST HAVE!
Do not have a doctor directing your care who is at the start of the myeloma learning curve. Recently, Dana Holmes the editor of a smoldering myeloma patient web site had a blog post which outlined the importance of having a myeloma specialist on your team even during the early smoldering phase of the disease, and why you should not put your life in the hands of someone who is not a myeloma specialist. It does not matter how much you like a hematologist/oncologist or what degrees they have, because if they do not see 100 myeloma patients or more a year they are just NOT QUALIFIED to treat this very complex disease. In addition, she had received some comments which just help to clarify how important it can be, and how it just may spare a patient unnecessary treatment. Dana wrote the following and you can view Dana's Facebook page if you CLICK HERE;
"I do want to take this moment after your update to remind our members how IMPORTANT it is to seek a consult with a Myeloma specialist for a proper evaluation before you decide to start treatment if you are presently under the care of a local, community hematologist/oncologist who may not quite understand the nuances associated with this disease, especially the progression of asymptomatic "smoldering" myeloma to active myeloma (provided of course you are NOT in a condition which requires emergency intervention, i.e. kidney crash, fractured veterbrae, etc...) Some of the local hematolgists/oncologists's may be jumping the "treatment gun" and some may be too slow at the starting gate, either way is not ideal! You need to partner with someone who really understands when to intervene (preferably before end organ damage becomes overt) and when to continue to monitor closely and "watch & wait", operative words "monitor closely." Again, I will stand on my annoying soapbox and encourage all of our members to seek consult w/ a specialist BEFORE anything like that can happen, don't WAIT until you are facing those challenges to try to get an appointment ... seek a consult while you are still smoldering and begin to build a relationship, as none of us really know which of us will be in the 10% per year who progresses to active disease.Although it may require some travel which may be an inconvenience, and may present other challenges as well, if you can manage it, DO IT, it is YOUR life...YOU deserve the VERY best, don't settle for second best or less.
A real easy peasy way to see what type of research your docs are involved in is to search their names on PubMed. This will bring up the research they are actively engaged in...don't see any research articles listed from them about myeloma? This is your 1st indication they are likely NOT myeloma specialists. Does it mean they are NOT a great doctor?? NO !! But it means Myeloma is NOT what they necessarily specialize in. Myeloma specialists are often affiliated with academic research universities/facilities and they are publishing the research, not just reading research published by someone else. They have their fingers on the emerging changes and data, not waiting for it to trickle down to them several months out.
You can also ask them if they attend any of the blood cancer conferences (like ASH) in order to remain as up to date as possible about the ever changing Multiple Myeloma landscape. If they are "too busy" to attend, think about finding a doctor who is not too busy to learn the most they can learn about the cancer they want to treat you for. Don't worry that you may insult them by your asking about how involved they are with YOUR type of cancer. So be sure to ask.
Does it mean you have to leave this local doctor in the dust? NO, you most certainly can continue your affiliation with them if they are willing to become a member of YOUR team and work with your myeloma specialist. (Another red flag if they refuse to coordinate your care. Don't let their egos get in the way of getting the very best possible care.)
Here is an example of Dr. Ola Landgren's research via Pub Med https://www.ncbi.nlm.nih.gov/pubmed/?term=Ola+Landgren
Dr. Landgren is one of the leading Multiple Myeloma specialists who has invested a great deal of time studying the precursor stages of MGUS and Smoldering Myeloma. There is little DOUBT he specializes in the myeloma spectrum...just follow this link >>> https://www.ncbi.nlm.nih.gov/pubmed/?term=Ola+Landgren <<< and replace Dr. Landgren's name w/ your doctors name...
Do keep in mind that the Myeloma Specialist groups at a given center work together as a team. If you don't see your specialists name on the IMWG list, or much research listed on PubMed once you have searched their name, try searching for the Director of his/her Myeloma group's name, he/she will likely be listed.
You can also check if your MM specialist is a member of the IMWG ~ International Myeloma Working Group ~ an added "bonus" if they are a member of this elite group ~ approximately 180 of the top myeloma specialists in the world !! - check this list >>> https://myeloma.org/IndexPage.action… .
You can also check a recent IMWG consensus publication which usually lists all of the current IMWG members.
This is of course just my opinion, one which you may or may not wish to consider, but this is my soapbox word of the day. A couple of the comments attached to this post showed just how important a myeloma specialist really is, and the following comments emphasize this beautifully.
"My local oncologist said I have myeloma (not smoldering) and recommended I start treatment this year. My myeloma specialist in Seattle (Dr. Pagel) disagreed and said I'm not only smoldering but that I'm at low risk of progression. We are monitoring instead of treating, at least for now. Yay!"
"Precisely!! The local (no real fault of his/her own) just doesn't understand the disease as the specialist does! You are not the first in this group who has shared a similar story...One patient recently posted his story...was at treatment's door by 2 local oncs with high risk, do it now and do it w/ aggressive treatment , etc.....MM specialist put on the brakes and said, more likely low risk to progress, lets monitor!"
One of the most hideous and egregious examples of how a myeloma specialist's second opinion could have saved so much pain and agony is in the case of the Criminal Michigan Hematologist Oncologist, who through greed alone diagnosed HEALTHY people as having blood cancer and treated them with chemo, which they DID NOT NEED. This Dr. had 1000 patients and managed to defraud Medicare and the patients for $35 million. You can read this heinous case if you CLICK HERE. In this case a second opinion from a skilled myeloma professional would have saved so many people from unnecessary treatment.
A listing of myeloma specialists is available if you CLICK HERE. Good luck and God Bless your Myeloma Journey/ firstname.lastname@example.org