– by Grant Perry
One day in early October when I was showering, I felt a lump in my right bicep . Now, my personal radar for such anomalies is sensitive because I have a long history with an extremely rare cancerous tumor. But I had a checkup scheduled in just a few weeks where I’ve been treated, so I thought, “I’ll just show the lump to the oncologist there…”
On October 23d, I left before dawn to drive the tediously familiar three and a half hours from my home in Austin to the cancer center in Houston. First there was a blood draw, then head, neck, and chest CTs, and the next morning back to the hospital and up to the Sarcoma Center on the 9th floor.
The specialist I was about to see has a long, impressive resume’ and is a nice man to boot (I’ll call him Dr. S). I was anxious to hear what he had to say about my tumor in general and my new lump in particular.
– Saying “my tumor,” might sound a bit proprietary. But in a way, it is like owning a museum-worthy artifact sans the monetary value; and my tumor is indeed rare. Called a Phosphaturic Mesenchymal Tumor (PMT), there are only about 200 cases in all of medical literature. Add in the fact that my PMT is malignant and metastatic, and that puts me into an even more “exclusive” club.
Admittedly, I expected that the rarity of my tumor, and the uncertainty about its progression, would warrant a thorough investigation of the new arm lump. When Dr. S came into the examining room, he told me that my chest CT showed stable disease. Good news. Then I showed him the lump in my arm. He felt it, saying the lump was about 2.3 centimeters in size and might be “the tumor,” i.e., “my tumor.”
I asked if it could be a different tumor.
“I don’t think so,” Dr. S said.
I tried to ask whether or not this apparent tumor might, at least in part, be driving the dramatic increase in a key tumor marker. Dr. S cut me off and said, “We’ll keep an eye on the lump and maybe do an MRI at your next regular checkup in six months.” And that was that, and Dr. S left the room.
Next up was my appointment at the head and neck clinic, where my journey into the obscure territory of PMTs and tumor-induced osteomalacia (softening of the bones) originally began. My jaw and surrounding areas have been sliced and diced repeatedly and twice reconstructed with bone, vessels and soft tissue from my legs. And while this was not fun, I now have a set of fine working chops courtesy of my “spare” parts and the surgeons’ skills. On this day more than two years after the surgery, the doctor told me that the latest CT showed no troubling changes in my jaw. When I mentioned the new arm lump to him, he didn’t seem particularly interested either…
And so my two day visit was over. I was told to head home, but I did not feel relieved. The prescribed scans were fine, but still I wondered:
– What about the lump in my right bicep?
– Why did the doctors seem so unconcerned?
– Why didn’t Dr. S. even feel for lymph nodes in my right armpit near the lump?
– Come to think of it, why hadn’t the doctors suggested it might be time to search for other metastases given my rising tumor markers?
On the long drive home, I decided that I would contact my Austin endocrinologist and a couple of other doctors in other cities who have treated me in the past and see what they thought.
I emailed them over the next few days, and they all agreed that I should have the arm checked out ASAP. They expressed a similar concern that the lump in my arm might represent a transformation of my disease into a more aggressive phase. Within a few days, I consulted another surgeon and had an MRI scheduled.
On November 27th, I underwent surgery in Austin to remove the lump (tumor?). The consulting pathologist thought it looked like a high-grade / aggressive metastatic sarcoma – cancer – but also sent it to a prominent PMT expert at the Mayo Clinic for a second opinion.
That doctor agreed that the tumor was indeed high-grade, noting that it was “…an exceedingly unusual example of a metastatic malignant PMT… and one would have to wonder whether this patient has metastatic disease in other locations.” My new surgeon also saw that the tumor was very close to several nerves, and noted that if I’d waited much longer, a more extensive operation may have been required, resulting in functional limitations in the use of my right hand.
Today it is clear that I had the right instinct in questioning Dr. S’s languid attitude toward my arm “lump.” And while the physicians I saw later at Massachusetts General Hospital fortunately could not find other high-grade lesions, they did find a number of new, small, slow-growing tumors and diagnosed that I now had “widespread disease.”
Because of the highly unusual nature of my illness and the fact that the new tumors were “slow growing,” they recommended against conventional chemotherapy and radiation and suggested that I explore promising new targeted therapies. It turns out that I’m an excellent candidate for something called Peptide Receptor Radionuclide Therapy (PRRT) and I will soon begin the treatment with renewed optimism and hope.
As a patient with a rare disease, I have learned the hard way over the years that there is truly a cost to complacency. A patient can – and should – respect and defer to the experts, but at the same time, ask them hard questions and sometimes request second opinions when warranted. In my view, good doctors should not object to or be irked by second opinions; in fact, they should welcome them, especially in cases of unusual or life-threatening illnesses.
Also, as patients, it’s worth reminding ourselves to stop, take a breath, and make sure we understand what the doctor is saying and not be afraid to ask for a second opinion. This should apply no matter how esteemed the physician or hospital may be. Keep in mind, too – as insurance companies should – second opinions can sometimes lead not only to better outcomes but also to less expensive diagnosis and treatment options.
But the bottom line, my fellow patients, is that you should not be afraid to ask questions nor feel like you’re “betraying” your doctor by seeking a second opinion. Why? Because at the end of the day, it’s your life, period.
Grant Perry is a digital media consultant and was an award-winning journalist at CNN, where he was a New York-based correspondent and then anchor of CNN International’s London-based business program, World Business Today. He is the creator of PatientPilot, a mobile app that guides patients on their journeys through the healthcare system. PatientPilot coaches patients on what questions to ask their doctors, how to obtain essential and reliable medical information, and how to make medical decisions. The app is built around interactive checklists and enables note-taking and recording. PatientPilot empowers patients to be better self advocates.