Baby Steps

It’s been a while since my last post, so I wanted to share an update on activities over the past week or two.  On Christmas Eve, I met with an oncologist at Memorial Sloan-Kettering Cancer Center (MSKCC) to discuss my case following a similar meeting at the University of Pennsylvania (UPenn) a short while before.  There appears to be little ambiguity regarding my diagnosis, which both oncologists confirmed as Stage IV oropharyngeal cancer.  However, the oncologist at MSKCC used an endoscope to view the tonsils, etc. and also commented after physical examination that the enlarged cervical lymph node seemed “tethered” in its location, which could indicate that the cancer was spreading outside of the node (extracapsular invasion).  MSKCC’s treatment approach was chemoradiation, which is the same as UPenn had recommended (UPenn discussed my case during a tumor board and surgery wasn’t recommended there either…).  At MSKCC, patients meet with each of the various specialities (medical oncologist, surgeon, and radiation oncologist) so the next step was to schedule an appointment with a surgeon to get their perspective on relevant treatment options and to schedule an appointment with a radiation oncologist, which I did.

Click to view larger

Click to view larger

Today was the meeting with the surgeon at MSKCC.  Not unlike many patients, I am growing weary of being poked, prodded, stuck with needles, etc. and I haven’t even started therapy yet.  Much to my chagrin, the surgeon wanted to perform what would be my third endoscope procedure within the past few weeks to examine my throat.  In all honesty, it isn’t a horrible procedure and I’m sure in retrospect that it will be a cakewalk compared to what is waiting around the corner – but it still isn’t what anyone would call fun. For the first time, I asked questions about the resulting images from the procedure and the physician was excellent in explaining them along with his overall perspective. For example, in the accompanying image snapped with my iPhone  I have indicated where you can find my tonsils (cancerous one circled in red = enemy), soft palate, and uvula. My cancer started in the tonsil and appears to be spreading inward towards the soft palate and also the lymph nodes (not shown).

Both surgery and chemoradiation are “potentially” curative treatment options for me.  Some of the differences between these two options relate to side effects and maintaining quality of life going forward.  In my particular case, based on the stage and extent of disease, a surgeon could theoretically remove the tonsil, lymph node, and surrounding soft tissue with the hope of getting all the cancer (clean margins).  Under that scenario, I could potentially be spared subsequent chemotherapy and its toxicities and simply go through radiation therapy as a next step.  However, if the surgical procedure didn’t result in clean margins – then chemotherapy would still need to be included along with the radiation therapy and the surgery would have been somewhat useless.  More importantly, it would expose me to potential side effects – such as difficulties in speech, swallowing, and other issues due to the spread of the cancer to the soft palate.  Armed with this insight, it was clear that surgery was an unattractive option and the plan to move forward with chemoradiation was confirmed.  Baby steps, but it was nice to rule out surgery as a treatment option and focus solely on chemoradiation.

My next appointment is Monday with the radiation oncologist at MSKCC.  I can’t tell you how many people at MSKCC have sung her praises and I very much look forward to meeting with her.  The hope is following that initial consultation I’ll be able to (finally!) start therapy the following week. I plan on posting an update after meeting with the radiation oncologist – so for now, best wishes to all of you for a happy, HEALTHY, and prosperous 2016! Speak to you in the New Year…

The Impatient Patient

One of the hardest aspects of having my particular type of cancer is the fact that it has spread to a cervical lymph node on my neck that is both visible and palpable.  I am reminded of the disease every time I look in the mirror or place my hand on the area. As a result, I am quite anxious to get started with treatment despite the associated side effects. I just want it gone – now!  Christmas day will be exactly one month since I first discovered the growth and I cannot help but feel that the cancer is being given too much time to grow and spread.

Michael_Becker_Cancer

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I mistakenly envisioned that following a “formal” cancer diagnoses (which itself takes some time waiting for biopsy and imaging results…), a SWAT team of physicians rushed in to promptly start therapy.  In reality, however, it can take weeks to schedule appointments with some doctors.  For some procedures, such as radiation therapy with IMRT, the process also involves complex treatment planning to deliver dose to the tumor and spare normal tissue and getting fitted for a special reinforced thermoplastic mask to hold the patient within a few millimeters for consistency each day of therapy.

Michael_Becker_Cancer_PET

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Upon starting daily radiation and chemotherapy, I plan on doing a series of self-portraits to document the associated changes in physical appearance over the 7-week treatment cycle.  In preparation, I took a self-portrait today so that you can see the difference in size between the right side of my neck (blue lighting; site of the cancerous lymph node) and the left side (red lighting; normal side).

To help put this in perspective, I also included a comparable image from my recent PET scan that shows the relevant lymph node as a highlighted/glowing mass in the same general area. In case you were wondering or alarmed – no, I don’t have brain cancer.  The brain also lights up on a PET scan in extremely intelligent individuals.  Just kidding – the brain always lights up as glucose is the predominant substrate for brain metabolism and PET imaging utilizes radiolabeled glucose.

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.