This page will be a collection of random thought and deeds in the lives of a chronically ill patient, or, my life as a rare cancer patient, who, when told of their diagnosis, usually exclaims, mumbles, whispers, shouts, exclaims, I HAVE WHAT? Neuroendocrine cancer my dear. A rather snarky, complicated and insidious chronic disease.
These are not a patient's medical story, but thoughts on having NETs and unusual circumstances.
Pour a cup of coffee before reading.
Click to read a valuable and well-written true story about a man who died too young from cancer.
Dancing with the Blue Hippopotamus
As a chronically ill patient, having played an ungracious and unwilling hostess to carcinoid cancer, endometrial cancer, heart disease, two lung diseases, diabetes, and numerous autoimmune diseases, I am always on alert. I’ve become much like a focused guard dog listening for a strange noise or watching for something out of place. Like most other cancer patients, I’m hunched over a banker’s light in the wee hours of some evenings reading medical reports with a dictionary, looking at the strange yet fascinating images of my scans. Are the black spaces or white spaces bad or good? We depend on the Blue Hippopotamus’ unerring diagnostic accuracy to translate the imaging. Many cancer patients read the words “increase in size from previous scan” and even if it’s an infinitesimal 1MM, we fantasize who should give our eulogy – at least I do. I’ve chosen a friend who was an actor and has a snarky, fierce sense of humor. But, if you look at a ruler, a millimeter is barely visible especially to the shop-worn eye. These millimeter increases are an impetus to speak to the Blue Hippopotamus.
I do not take this call lightly and plan my strategy for a week. First I make certain he does, in fact, have all of my records. Then I make certain I have them. I re-read all reports and check the range of normal. A favorite saying of the good Doctor Blue is “NORMAL IS NORMAL”. However, patients are difficult to convince that if their numbers rise, even by a millimeter, yup, their disease is NOT progressing at that exact time. High normal is scary, an escalating high normal signals it’s time to review eulogy plans. I usually make a list of the questionable findings but somehow once the conversation has ended, I find I haven’t tackled everything on my list.
Fear ebbs and flows in a chronically ill patient’s medical life. First, there’s scanphopbia which is double-pronged. Fear of the actual scan if the patient is claustrophobic, or the dye injection is bothersome, and fear of the results. Somehow, knowing Doctor Blue will look at them has a calming effect. Even if it’s bad news, we have different levels of bad. Fear of blood draws provokes similar reactions. As I mentioned, The Blue Hippopotamus is well-known for the phrase “NORMAL IS NORMAL” and will roar it to get our attention. STABLE DISEASE is pretty much as desirable as NORMAL IS NORMAL, all mangras of this community of patients.
For the ten years that I have been a cancer patient, I’ve always had relief from the primal fear that I permanently harbor when I’ve spoken with or visited the good Doc. This relief is addictive. It is probably Doc Blue’s nature which is a quirky combination of droll wit, self-deprecation, and pedagogy. He swims fast in the current of our NET community through his research, clinical practice, and strong outreach to the medical and the patient communities. His presence is omniscient. Most importantly, his generosity in sharing his knowledge and his time brings many patients to his riverbank. His dance card is full. Use your spin about the floor wisely.
Why is it that the Blue Hippotamus’ attitudinal posturing has a curative effect on the battered and worn psyche of a NET cancer patient? Hippopotami are herbivorous. However, Doc Blue is carnivorous, previously with an affinity for butter and cream. He is a gregarious animal, living in his group of about 30 others. Faster and wiser than most of his group, he is the “pod” leader...the alpha.
How I Got My Second Opinion First
- A first hand account by J.M. with S. Garber
Living 35 minutes from an internationally ranked medical facility makes it easy to access the best in healthcare – or so I thought.
My history with cancer is brief: it started in September 2013; I had symptoms of colon cancer. The first month was spent having diagnostic tests including CT scans and a colonoscopy. In October, during a partial colectomy, the surgeon removed a “high grade, poorly differentiated neuroendocrine carcinoma”, which was incorrectly described as a carcinoid tumor by the esteemed institution. In spite of the characteristics of the carcinoma, and in spite of a very high Ki-67 proliferation index of 80% +, the surgeon’s planned protocol was one of “expectant management” – or wait and see, the phrase translated behind closed doors as “wait and die”. In his mind, it was a clean resection, no metastases in evidence, 14 lymph nodes all negative – and a done deal! Strange, I never heard the dulcet voice of the fat lady.
Six weeks went by and no one had addressed the issue of medical follow-up. My Ki-67, a measure of proliferation that is found in growing, dividing cells, but absent in the resting phase, was "off the charts" at 80%+. At that point it was an abstract number, one of many. No member of my treatment team had even brought it to my attention, yet the doctors, oncologist, surgeon, and my primary care physician all knew these results. I heard a clock ticking in the back of my worried mind or maybe that was chattering teeth. Ultimately, I learned that my pathology report painted a different picture to anyone reading it with at least a Wikipedia-level understanding of neuroendocrine tumors (NETs). This was an aggressive and Herculean fast-moving NET – very much able to generate metastases in remote parts of my body. The intervention of an oncologist and a much more aggressive and proactive protocol of treatment was very much in order – but the only person to see this and to take action was me, the patient – urging my primary care doctor and medical oncologist to immediately order more tests and an OctreoScan™ to search for evidence of additional tumors. I was to receive the oncologist’s opinion and his planned protocol a week later – although preliminary diagnosis pointed to immediate chemotherapy and an aggressive protocol of continuing tests and the possibility of additional interventions.
With my confidence in this medical facility quickly eroding, I sought help and advice from several of the online organizations that confront NETs on a daily basis. I was adopted by a willing mentor, Suzi Garber, a NET cancer patient herself. Luckily, as it turns out, she realized the implications of an ultra high Ki-67 and called me. She said that she felt strongly about my getting an expert opinion ASAP. I told her I had an oncologist appointment in ten days. "That wouldn't do", she said, and, over the weekend, I was accepted for a second opinion by one of the leading NET specialist practices in the country – some 1000 miles away. Four days after our conversation, I received my second and expert opinion - before what was to be a belated first opinion. Chemotherapy, certainly – and the sooner the better. And, active – not expectant – management.
A few days after my return, I received a report from the “1st opinion docs”. Fortunately, it was identical to my “ 2nd ” opinion - immediate chemotherapy, a few more tests, and an active follow-up protocol. Both teams were in agreement. I finished my six chemo treatments and am forever grateful that I listened, learned, grabbed the reins and acted expeditiously to take control of my disease.
In my humble opinion, the unsung heroes of any NET patient story are actually the patients themselves most of whom are self-advocates and very savvy about the disease. I think everyone newly-diagnosed should seek out a patient mentor/advocate. They are the missing link. Suzi Garber was a “Katie bar the door” mentor who thrives on warp speed and instant results.
The take-away here is simply this: it’s difficult to depend on anyone in the medical profession to act as your health advocate. You are your best – and occasionally only – advocate. Don’t depend on the reputation of a medical facility – justly renowned as it may be – or count on your primary care provider to watch out for you. They should, and often do, provide strategic surveillance – but they may not. Be an active player in your healthcare, use the vast resources available in our country in any health crisis, and never be afraid to challenge your healthcare provider, who should be a teammate, a coach, a leader, an advocate, but is not the franchise owner. You are.