Ever since becoming fairly myeloma obsessed after my biopsy results in July, there is one thing that has become very apparent to me: people with MGUS, smoldering myeloma, and multiple myeloma are extremely compassionate, kind, and most importantly, KNOWLEDGEABLE in regards to this disease.
Around August/September I started joining different myeloma groups - email lists, facebook support groups etc. I posted a few questions and always got a lot of answers and support. I have really learned so much by reading other patients' situations, questions, and the responses.
After starting this blog I also received several comments and suggestions that have been very helpful and informative. After writing the post MRI & Metal Removal I got a comment from an individual with MGUS warning me that the MRI contrast agent gadolinium can promote myeloma cell growth. He also left links to Margaret's blog regarding the topic:
Margaret's Blog - The gadolinium used in MRIs makes myeloma cells proliferate and Important update on the MRI contrast agent gadolinium
Um. YIKES.
Like I wrote in my previous blog post, I was told during my pre-screening phone call that I would have the contrast injected part way through the MRI. Seriously, without this comment, I would have not been aware the contrast could possibly be dangerous to my health.
After reading the comment and links, mildly panicked, I call the MRI reception desk because I assume there must be some sort of mix-up. I ask, what is the name of the contrast agent you use during MRIs? Assuming, stupidly, that they MUST use something different than gadolinium.
Nope. Gadolinium is the contrast agent used at Dana-Farber. (Although, I have now heard that there are different types of gadolinium and I'm not sure which kind is used there.)
I call my mom and ask her to check with her very close friend who has full-blown multiple myeloma who is also a patient at DFCI. We find out he has had some MRIs with contrast and some entirely without.
I send an email to one of the email lists I am a member of. Several of the very kind, knowledgeable members respond and shared these links: Is the use of gadolinium in MRI a necessary part of the imaging test and is it safe? and GADOLINIUM CONTAINING CONTRAST AGENT PROMOTES MULTIPLE MYELOMA CELL GROWTH: IMPLICATION FOR CLINICAL USE OF MRI IN MYELOMA
So. Sounds like I really shouldn't have the MRI with contrast due to kidney damage risk - Nephrogenic Systemic Fibrosis (although, my kidneys are fine - knock on wood) and possibility of promotion of myeloma cell growth . So, why am I???
I call the MRI reception desk...again. The receptionist I speak with says that every patients' blood is tested one hour before the MRI to check kidney and liver function and after those results the radiologist decides whether or not to use the contrast. Kidney and liver function results for me have always been mostly normal. I voice my concerns re: gadolinium and myeloma cell growth and my diagnosis of MGUS/SMM. The receptionist puts me on hold to speak with the radiologist. Receptionist gets back on the phone and says, "Actually, you are checked off to have the MRI without contrast."
Okay. Seriously? All this angst and I'm not even having the contrast anyway?
I ask, "Well, then why was a told two days ago that I would have the test with contrast?" The receptionist says that after my responses to the pre-screening questionnaire were reviewed, in particular my diagnosis, the radiologist decided that the MRI would be without contrast.
Okay, I guess that makes sense. But, my question now is, did my actual doctor intend for me to have the MRI without contrast, or with and without contrast? Did the radiologist change the MRI to no contrast because I called and voiced my concerns? Who is making the decisions here?
So, I send an email to Dr. R. Which, honestly, is what I should have done from the beginning. I wasn't sure if I would hear from him though because this weekend is the 2012 ASH Meeting and Exposition and I figured he would be busy in Atlanta. However, he always responds very quickly to email and he actually wrote me back right away. He said that getting the MRI without contrast is fine and it shouldn't be needed as a first step.
So that's good, right? Of course now I'm over thinking things and am worried some data could possibly be missed if I don't have the contrast. Ugh.
Anyway. As far as I know, on Monday, my MRI will be without contrast. Phew. :)
Just an FYI. I'm sure that Dr. R is a great doctor, but he is not an imaging specialist nor is he likely versed in the most current imaging protocols or literature: the Radiologist is. It is extremely common to have referring physicians order examinations with or without gadolinium only to be changed by the radiologist prior to the imaging being performed (and of course after careful review of the patient's medical history, the clinical concern/question that needs to be answered, and the capabilities of the individual machine). In many cases, the referring physicians order the examination with gadolinium, "just in case it is needed". This is primarily due to insurance and clearance issues (such as obtaining bloodwork in advance), as a non gadolinium examination can easily be performed even if "with gadolinium" was ordered; whereas it can be sometimes impossible to perform a "with gadolinium" examination if a non-gadolinium examination was specified, even if the non-gadolinium examination would be considered USELESS/offer no clinical information.
ReplyDeleteTherefore, I would not be too concerned about what was ordered, and more concerned about what was decided by the Radiologist after your diagnosis, medical history, and question to be answered/clinical concern was reviewed.
A majority of physicians are NOT imaging experts, but Radiologists are. Therefore, many of them order incomplete examinations/incorrect examinations which are then corrected by the Radiologist. Quite simply, most non-Radiologist physicians do not have the 5+ year of training and are not versed in the rapidly changing medical imaging literature. Therefore cannot be expected to know the precise exam and protocols needed for a particular exam, but rather they simply need to know "what they are looking for" eg- tumor, fracture, etc.
A good analogy is that a normal person having their car serviced does not necessarily know the exact details of what needs to be done, rather they know whats wrong and have a general idea of what needs to be fixed (obviously fixing the engine does not mean the guy should be working on the tires). And then the expert, the mechanic, figures out the correct procedure.
Oh, and one more piece of information: Virtually all MRI contrast is gadolinium based, regardless of its name. All that changes is how that gadolinium molecule is bound within the contrast material. However, how it is bound can change its properties in regards to how 'visible' it is to the rest of the body.
ReplyDelete