The emotional roller coaster of a cancer diagnosis

Helter Skelter

According to the National Cancer Institute, and based on data from 2014-2016, approximately 39% of men and women in the United States will be diagnosed with cancer at some point in their lifetimes. In 2016, over 15 million people were living with cancer in the United States.   

So why is a cancer diagnosis so often unexpected and disruptive? Both of my fathers (my biological father and my stepfather) died of cancer.  Why was I surprised and alarmed when I received a cancer diagnosis?  Probably because most of us think cancer is a disease of the aged and not something that happens to us.  And we forget how quickly we age.  I’m 58, old enough for 2 rounds of colonoscopies. In fact, the median age of a cancer diagnosis is 66.  Half of all cancers are diagnosed in people aged 66 or younger—that seems remarkable. About 24% of all new cancer diagnoses happen within the 55-64 age group that I belong to. Based on these data, a cancer diagnosis at my age is hardly surprising. 

And yet I was not prepared for this diagnosis. Ironically, having spent all my career in biopharma and diagnostics working in the cancer and inflammation therapeutic areas, I never really considered that I would be diagnosed with the disease I had studied for decades.

The first step in the diagnosis was a CT scan that was performed on August 10 and triggered by a swollen lymph node in my neck detected several weeks before. The radiologist described the case thusly: “Ill-defined mass centered at the right lingular tonsil, resulting in asymmetric effacement of the right vallecula. Large centrally necrotic level 2A cervical node, concerning for metastatic adenopathy. Constellation of findings are worrisome for right base of tongue HPV positive squamous cell carcinoma with right level 2A necrotic metastasis.”  This test result was deposited in my online health portal by the nurse practitioner at my primary care office who simply said in the email sorry that it is not better news.

I received this on a Saturday so had the weekend to basically freak out. And freak out I did.  In this situation, my rather incomplete and non-medical knowledge of cancer was not helpful and was a burden to get beyond.  I wasn’t familiar with head and neck cancers because they were treated with standard of care chemotherapy and radiotherapy and my focus had always been targeted therapies that used precision medicine strategies.  What little I knew about head and neck cancer was upsetting.  Serious side effects from treatment, disfigurement, few therapeutic options in late stage cancers.  But I did know someone who was the leading medical oncologist in the head and neck clinic at University of Michigan.  We both swam together in early morning Master’s swimming workouts for many years. (These are the things that happen when you live in a small town like Ann Arbor). So on Sunday I emailed him and asked what I should do. He promptly put me in touch with the multi-disciplinary team for an evaluation scheduled for August 15.

Waiting for August 15 was one of the toughest weeks.  Sitting at my desk at work I would feel shaky and weak all over and I realized I was having mini-panic attacks.  I was so scared.  I didn’t know what my prognosis would be, and I was preparing for the worst, imagining that maybe I had just a couple years. I would come home and just sob into Kristen’s shoulder as she held me.

On August 15 I met with the surgeon, the radiologist and the medical oncologist. At that meeting they discussed next steps and told me that because it was likely that my cancer was HPV positive, my outcome was likely to be good. That was a revelation.  By that time, I had studied the NCCN Guidelines for head and neck cancers and was beginning to understand that HPV positive and HPV negative cancers had different outcomes, although they were treated similarly. But to hear the doctors assert that I was likely to be effectively treated and had a decent chance at long term survival was transformative.

The first step was to confirm the HPV status.  At that meeting they took several fine needle aspirates of my lymph node and sent them off to pathology.  The test for HPV positive head and neck cancer is simply to look for p16 expression by immunohistochemistry.  P16 is overexpressed because the viral oncoprotein E7 inactivates RB, the retinoblastoma tumor suppressor protein, and for reasons I don’t fully understand, cancer cells do not tolerate loss of RB without concomitant over-expression of p16. However, on August 19, the results of the pathology test came back as p16 negative. But with the caveat they had few cells to examine.  “Immunohistochemistry shows that cells are positive for p63 and cytokeratin cocktail and are negative for SOX-10 and p16. The overall findings are suspicious for squamous cell carcinoma. However, the paucity of atypical cells precludes a more definitive diagnosis on this specimen.” And so I was back to worrying what my outcome would be.

On August 20 I had a PET scan that confirmed the cancer was in my neck and importantly not elsewhere. “Head and Neck: There is an ill-defined soft tissue mass at the right base of tongue/glossotonsillar sulcus which has avid FDG uptake (SUV max 19.2). It involves the right lingular tonsil with caudal extension to the right lateral glossoepiglottic fold causing effacement of the right vallecula. A large 2.2 cm centrally necrotic right level 2A/3 lymph node is consistent with metastatic disease and has SUV max of 4.7.”

The definitive diagnosis had to await surgery that was scheduled on Aug 27.  In that procedure, I received general anesthesia and they performed a laryngoscope to obtain a biopsy specimen directly from the tumor. A couple days afterward I was riding my bike home and coughed out a mouthful of blood onto the street.  Apparently, a blood vessel that was severed by the biopsy and cauterized had burst.  Fortunately, the wound clotted quickly, and I was able to continue home. Later that week we went up north for the Labor Day weekend.  I was so grateful that the surgical coordinator called me Friday evening after 6pm to tell me that the cancer was confirmed as HPV positive. She could have packed it in for the weekend and no one would have blamed her. 

So approximately 3 weeks after the first CT scan, my diagnosis was confirmed, and was consistent with the initial interpretation.  My treatment regimen was discussed with me and the recommended treatment protocol was typical for HPV positive Head and Neck cancer with some adjustments. The standard of care treatment would be 7 weeks of chemo radiation.  Instead of weekly cisplatin, the doctors here use carboplatin and paclitaxel because it is better tolerated and has similar efficacy.  The radiation treatments were every weekday for 7 weeks.

The next steps were to schedule visits with the dentist to make sure I didn’t have any teeth that needed extraction before the radiotherapy and to make my molded teeth guards and then baseline MRI and CT scans that would be used to map out the radiation fields.

On September 23, treatment finally started, 6 weeks and 2 days after the first CT scan.

I began telling my extended family, my co-workers and my friends sometime after Labor Day, once I knew my diagnosis and prognosis and my treatment regimen. By that time, I was usually able to tell people calmly and with a positive attitude.  However, it was unexpectedly hard to tell my work colleagues in Ann Arbor.  We’ve been through so much together that all the stress I had packed away came up to the surface when I had to share the news with them.