April….thank you. I do believe though that the members on this board, collectively past, and present, are the experts. The knowledge gained and shared on this site is unsurpassed. This is classified to be a “rare” cancer therefore; more then one opinion is always in order. How many CC patients have you treated? This should be on of the top question to the practitioner. We (and many others) have made it a habit of requesting copies of everything pertaining to the diagnoses immediately including, scans. I realize that it adds extra stress to the situation and can be quite cumbersome but, I believe, it is necessary. Good luck April. You are doing a fantastic job of advocating for your Mom.
April….you are so right. Unfortunately, most major centers require your Mom to be a patient. There are however, some physicians willing to look over the records without admittance. One such doctor comes to mind and others may have more recommendations.
You need to gather all medical records including blood tests, ct scans, physician’s report, etc.
Dr. Roger Jenkins, Lahey Clinic, Boston . 1-781-744-2500 or his great administrator Julie Doyle at 781-744-5304.
Best wishes coming your way.
Thanks for the information posted about the major cancer centers. I have found the contacts helpful and simply providing a list to know what’s out there is much appreciated.
Right now I am trying to figure out how to go about helping my mom pick. Her oncologist in Colorado spent time at Mayo and her CC diagnosis came from Mayo. Her physician says he is speaking to former colleagues from Mayo on current therapies. Which is great, but I don’t necessarily thinks we should stop there. She is open to speaking with other places. Finances (thankfully) aren’t a huge constraint – we will get her to where she needs to be and she has insurance.
That said I am going through the list of centers feeling like I am wandering a maze. Most don’t have a direct line (e-mail or phone) to simply inquire without referring a patient – or if they do – I have found that they respond suggesting you schedule an appointment and become a patient. I do respect the fact that the treatment is individual to the patient, but should she become a patient at 5 clinics just to see what they have to offer? Is there some way to differentiate them? Or are we jumping the gun here, and should she just stick with her current doctor and see how that goes?
Are there any that from experience here on the board, should be avoided?
Thanks for thoughts on this!
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