The best advice I ever got from my first medical oncologist was “You must be your own and your best advocate.” In fact, this may be the best advice I ever got in life! As I write this blog, I know how difficult it can be for us “net” cancer patients to be our own best advocate during those all too frequent times when everything is such an uphill battle:
“I feel too exhausted to pursue this!”
“The doctor said it was all in my imagination!”
“I’ve already left five messages and the doctor hasn’t called me back!”
“I don’t understand what the doctor is telling me!”
“My insurance won’t pay for this!”
“The doctor doesn’t understand what I am telling her!”
“But the doctor said surgery was not an option!”
“The pharmacy says there was no prescription called in for me!”
“I can’t afford to do that!”
“I feel too exhausted to pursue this!”
(I know I already said this last one, but who hasn’t repeated this phrase?)
This is a blog about my road to Gallium 68 and the rocky terrain I encountered in being my own best advocate.
In addition to an Octreoscan, one of the first scans I had when I was first diagnosed with neuroendocrine cancer was an MRI with the contrast gadolinium. Immediately I had an anaphylaxis reaction;. it was clear that I was gravely allergic to gadolinium. For the next several MRIs, attempts were made to pre-medicate me, with quickly diminishing success. The final attempt resulted in anaphylactic shock and hospitalization. No more gadolinium for me, everyone agreed. And then, with alarming frequency, someone would hand me an order for an MRI with contrast. No, I would say, loudly and clearly. No.
“What are my options?” I asked the oncologist. “No other options,” he said. “You can have an octreoscan or CT scan. Not as good as an MRI, but there you have it.” (This was not the original oncologist with the advocate advice, clearly.)
Almost before the words were out of his mouth, I went to a neuroendocrine symposium with a panel of medical experts and saw comparison scans of neuroendocrine tumors with MRI, CT, Octreoscan and Gallium 68 technology. WOW! I thought. That Gallium scan looks terrific and I must get one. It was in a trial phase, I understood, but clearly the word “trial” conveyed it was being done somewhere!
Back I went to my oncologist with this information. He had never heard the word Gallium and moreover the medical imaging department hadn’t, either. It really would be much better to just get a CT scan, he opined. No, I said, loudly and clearly. That will not be better for me.
So I started making calls to learn where Gallium 68 scans were being done. I finally located an out of state facility that could do a Gallium scan after I saw one of their providers. But first I would need a referral to their provider to satisfy my insurance company requirements.
Back I went to my oncologist with this information. Sure, he’d have one of his staff complete the referral form. Three months later, after I made six follow up calls, two follow up visits, and sent one snippy email to the oncologist’s office, I had the referral form. No, I said, if only to myself, I will NOT be defeated by people who don’t want to do their job.
Next, I made the appointment with the out of state provider to be followed by the Gallium scan. In anticipation of the scan, they sent me the informed consent form which clearly stated they would bill my insurance company. And, so off I went to see the out-of-state oncologist who agreed the Gallium scan was exactly the right scan for me to have.
Imagine my surprise when I learned that the informed consent form had been changed since it was first presented to me, and that they would not be billing my insurance company. Instead, I was told I would need to pay for the Gallium scan, and the amount was approximately equal to what I had paid for my first car. No, I said, NO! I will not pay to participate in a study that the facility was getting paid for.
So, I re-started my efforts to find some facility which would do the Gallium 68 scan AND bill my insurance company. Then, and only then, did I happen on an article that said NIH was doing a five-year clinical trial on Gallium. I contacted the PI on the study, shipped off my medical records, and in relatively short order I was on my way to Bethesda, Maryland. The first trip included a Gallium 68 scan, Octreoscan, and a CT scan. I paid for my travel and hotel for that trip. I got my results and, yes, the Gallium 68 scan is really , really detailed. I am shortly returning for my follow up annual visit and I will just pay for my hotel this year. Other than that, there are no costs. They do not charge for the scans, and they do not bill your insurance company.
Are you interested in participating in this study? Participants are still being recruited as of January, 2016.. Here’s the link.
Good luck! And don’t forget to be your own best advocate. Even on the days when it is the most exhausting.