Finally Seeing the Enemy

Today was my first appointment with a medical oncologist at the University of Pennsylvania (Penn Medicine).  It was a surreal experience to say the least.  The waiting area was filled with cancer patients at various stages in their disease, ranging from newly diagnosed (me) to recurrent disease patients.  I couldn’t help but wonder – which of this cast of characters would I identify most with in the coming years?  Some of the patients looked quite weary from their battle – tired and frail.  Unfortunately I was no longer an outsider, but rather just the latest soldier enlisted to fight a common enemy.  It was disheartening.

radiology_PETWhile I read the radiology report from my PET scan last Friday, I couldn’t view the images on the Windows-only CD-ROM.  Today, the medical oncologist pulled the images up on a computer screen in his office and for the first time I saw the “enemy.”  The bright, glowing areas in the accompanying image represent the cancer.  One spot is the tonsil (where the cancer originated) and the other is the lymph node (where it has spread).  Both locations are on the right side of my body and the image is seen from the perspective of looking through my body from my feet up towards my head, which is why it looks reversed.  You can see familiar skeletal landmarks in the image, such as the jaw bone and teeth in front and spine in the back.  FYI – when I got home I was able to view/extract this image using a software program for Macs called OsiriX and you can obtain a free copy by clicking here if you ever get a Windows-based CD with radiology images on it!

The doctor confirmed Stage IV oropharyngeal cancer.  The location of the disease near the carotid artery would make surgery difficult, but that would be discussed at a tumor board later in the day.  The combination of radiation and chemotherapy would be the most likely initial treatment.  In this scenario, the chemotherapy (cisplatin) is used to make the cancer cells more susceptible to the accompanying radiation treatment.  The entire course of therapy would span 6-7 weeks and comprise daily radiation treatment Mon-Fri, with chemotherapy spread throughout.  The goal of the treatment would be to eliminate all of the cancer, which I’m reluctant to call a “cure.”

There is no sugar coating the side effects from treatment, especially towards week 4 and beyond.  The effects of radiation exposure are cumulative and will get worse with each cycle.  It will be hell.  However, there is a chance that the treatment will be effective – and it is that hope that will help get me through it.

The next step is to meet with a radiation oncologist and discuss various options, such intensity-modulated radiation therapy (IMRT).  IMRT is an advanced mode of high-precision radiotherapy that uses computer-controlled linear accelerators to deliver precise radiation doses to a malignant tumor or specific areas within the tumor.  However, Penn is one of the few centers in the region to offer newer “Proton Therapy.”  A proton beam conforms to the shape of a tumor with greater precision while sparing healthy tissues and organs.  This could lower the side effects of radiation therapy and may be an option for me depending on feedback from the radiation oncologist.

The main side effects from chemotherapy include hearing loss, which is why I need to schedule a hearing test to get a baseline.  If there are any issues with hearing loss before therapy, it could preclude the use of cisplatin and other chemotherapies would be considered. Radiation therapy can lead to dental problems, which necessitates also meeting with a dentist at Penn.  Best case is that all of these meetings can be coordinated on the same day as a follow-up with the radiation oncologist and I’m waiting to hear back on scheduling.  In the meantime, I have an appointment with a medical oncologist at Memorial Sloan-Kettering next week – as I am an advocate of getting a second opinion when it comes to major health matters.  My hope is to begin therapy within the first few weeks of January.

 

Minor Scare

While brushing my teeth before bed this evening, I noticed a fair amount of blood when I rinsed.  I practice good dental hygiene and knew it wasn’t from my gums.  The back of my tongue was stained red and it appeared that the bleeding was from my throat.  Understandably nervous given my recent diagnosis, we made a trip to the emergency room.  By the time we arrived, the bleeding had stopped.  Blood tests were ordered to rule out low platelet count even though no therapy had been started yet that would likely cause such a side effect.  It was determined a non-event and no recurrence since then.

 

Finding “the” Doctor

Medical time concept. Stethoscope with clock on face, concept for time pressure in healthcare or waiting lists etc.

I felt like too much time had passed since initially discovering the lump on my neck (a little over 2-weeks ago) to the actual diagnosis of cancer, so I promptly began researching experts in the area of head/neck cancer.  Fortunately, my background in the biotechnology industry provided some close connections in the oncology community and I reached out to one of them (Dr. Susan Slovin, an oncologist at Memorial Sloan-Kettering Cancer Center, MSKCC). She referred to me to Dr. David Pfister at MSKCC in New York.  It didn’t take me long to figure out that this was a great fit, as he was part of the team who treated actor Michael Douglas.  Michael Douglas received a diagnosis of stage IV oropharyngeal cancer in 2010 and spoke about his experience at a medical conference in 2014, which you can read by clicking here.  I scheduled the first available appointment with Dr. Pfister and also set up an appointment with another oncologist at the University of Pennsylvania.  I’m not the most patient person in the world, so waiting over a week for initial consultations didn’t sit well with me.  I wanted to know the treatment options and plan – and more importantly, I wanted treatment ASAP.  Every day looking in the mirror and seeing the large lump on the right side of my neck was a constant reminder of the disease.

PET/CT scan

IMG_6904Having already recently gone through a CT scan with contrast, I wasn’t overly apprehensive about the PET/CT scan.  In fact, the biggest issue for me was not being able to drink anything other than water until after the procedure that was scheduled for late in the morning.  Being an avid coffee drinker, this was quite stressful!  I was brought to a room where the radioactive injection was administered and then waited approximately an hour for the drug to circulate before being scanned.  This was a much longer procedure than the original CT scan and took around 2-hours total.  By now, I was familiar with the online patient portal that provided very quick results from imaging studies performed at St. Mary’s.  By mid-afternoon I was able to read the radiology report online.  The report indicated that the cancer likely originated in my right tonsil and had spread to nearby lymph nodes.

This is the point where having a background in oncology is both a blessing and a curse.  I knew that “staging” describes the severity of a person’s cancer based on the size and/or extent (reach) of the original (primary) tumor and whether or not cancer has spread in the body¹. This is important for several reasons:

  • Staging helps the doctor plan the appropriate treatment.
  • Cancer stage can be used in estimating a person’s prognosis.
  • Knowing the stage of cancer is important in identifying clinical trials that may be a suitable treatment option for a patient.
  • Staging helps health care providers and researchers exchange information about patients; it also gives them a common terminology for evaluating the results of clinical trials and comparing the results of different trials.

As a tumor grows, it can invade nearby tissues and organs. Cancer cells can also break away from a tumor and enter the bloodstream or the lymphatic system. By moving through the bloodstream or lymphatic system, cancer cells can spread from the primary site to lymph nodes or to other organs, where they may form new tumors. The spread of cancer is called metastasis. In view of the fact that my cancer originated in the right tonsil, I knew that based on the PET/CT imaging results it had already spread from the primary site to the lymph nodes (not good).

Using the oral and oropharyngeal cancer staging criteria for tumor (T), node (N), and metastasis (M), also known as TNM, I had stage IVA cancer of the tonsil due to the fact that the enlarged lymph node measured more than 3cm and/or may be in more than one lymph node².

¹ National Cancer Institute

² Cancer.net

Pathology Results

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This afternoon, I received a call from my ENT confirming what I had already known or suspected – based on the biopsy results I had cancer.  In particular, squamous cell carcinoma.  Doctors describe cancer by its grade (G), which describes how much cancer cells look like healthy cells when viewed under a microscope. If the cancerous tissue looks very different from healthy tissue, it is called poorly differentiated or a high-grade tumor. The cancer’s grade can help the doctor predict how quickly the cancer will spread. In general, the lower the tumor’s grade (such as G1 or G2), the better the prognosis. In my case, unfortunately the cells were poorly differentiated (G3 or G4).

The cancer was in the enlarged lymph node, but that was only one of the locations where it had spread.  We needed to know where the cancer originated.  Based upon a review of the various markers evidenced in the pathology report, I grew increasingly concerned that the cancer started in my lungs.  The next step was to perform a PET/CT scan to reveal the primary source of the disease.

Review CT results with ENT

IMG_6876At the physician’s office, the CD took a while to load on his laptop.  I suggested that while we were waiting for the images to load, perhaps we could discuss the accompanying radiology report.  I knew that the radiologist would provide a written assessment of his/her findings, so I wanted to get straight to the results.  My physician, however, excused himself for a bit since the CD was taking a while to load and to me, this was another red flag of bad news to come.  When he returned a short while later, the discussion centered around the enlarged lymph node and the fact that it “may” show evidence of necrosis at the center. I was more certain than ever that I had cancer and based on everything I read it was likely squamous cell carcinoma.  The real question was where the cancer originated – my lungs? The next step was to biopsy the enlarged lymph node to obtain more information through a procedure known as fine needle aspiration.

The physician injected novocaine directly into the enlarged mass prior to inserting a needle twice to extract fluid from the area.  He remarked that not a lot of fluid was easily obtained, which helped rule out to some extent the possibility of a cyst.  Once again, all arrows pointed to cancer.  The novocaine injection was the most painful aspect of the procedure, with the minor exception of some discomfort towards the end of the second needle stick.  The physician laid out a series of glass slides on the counter an applied the contents from the syringe onto them all.  That was it; now to wait for the pathology report.  Much to my chagrin, the doctor indicated that it could be up to a week to receive the report.  More waiting!  I wasn’t sleeping at night, so I was prescribed Ativan (lorazepam) to take before bed.

CT Scan

PET/CT scanI’m not usually claustrophobic, but even the open nature of the CT scan made me a bit uneasy.  The CT involved iodinated contrast, which is a form of intravenous radiocontrast (radiographic dye) containing iodine to enhance the visibility of vascular structures and organs during radiographic procedures.

Immediately following my CT scan, I received a CD with the results.  In view of my background with radiopharmaceutical companies – I loaded the CD in my computer to try and peak at the results.  Unfortunately, the CD was only for Windows computers and I only had access to a Mac. Nonetheless, I had a general idea of what wouldn’t be a good sign – such as a dark center in the enlarged lymph node, which could indicate necrosis.

Initial Visit with ENT

endoscopeThe antibiotics did nothing to alter the size of the lateral neck mass, which prompted a visit to an ENT.  At this point, I was 100% convinced that I had cancer based on everything that I read.  The only question was what “type” of cancer and its stage.  After spraying my nasal cavity with a numbing agent, the physician looked at my throat using an endoscope (e.g., examining my throat using a tiny, flexible camera inserted through the nasal cavity) that didn’t seem to indicate anything out of the ordinary.  The next logical step was a CT scan to obtain additional information, which I promptly scheduled.

Discovery – Day Zero

401779-smallIt was the day before Thanksgiving and I was waiting for the water to heat up before getting into the shower.  Glancing at my reflection in the mirror, I noticed that the right side of my neck looked a bit larger than the other side.  Placing my hand on my neck, I could easily feel an unusual lump just under my jaw line that clearly wasn’t there the day before.  It was a solid mass and wasn’t sore at all to the touch.  A quick search on Google made me nervous enough to reach out to my general physician and they were kind enough to get me in that afternoon.  I’m not generally a pessimistic person, but I had already prepared myself for either lymphoma or head/neck cancer.

Remarking that he could sense the level of concern on our faces, the physician suggested that the lump was a blocked salivary gland and that such a condition could be either painful or not.  He prescribed an antibiotic (levofloxacin, 500mg) and stated that the lump should decrease after a few days unless there was a stone or other obstruction causing the blockage.  In any event, I was to follow-up with him around Monday unless there was severe pain or discomfort in which case I could consider going to the emergency room over the weekend.  In the back of my mind, I was still convinced we were dealing with something different. As stated in the peer-reviewed literature, “More than 75% of lateral neck masses in patients older than 40 years are caused by malignant tumours, and the incidence of neoplastic cervical adenopathy continues to increase with age.”¹

¹ Gleeson M, Herbert A, Richards A. Management of lateral neck masses in adults. BMJ : British Medical Journal. 2000;320(7248):1521-1524.