Cancer: The Grinch that Stole Christmas

Of the +30 posts on this patient blog, this has been one of the hardest to write.

Lung metsIn the prior entry, I referenced that my next PET scan was scheduled for early February 2017. However, my radiation oncologist wanted to keep the PET scans consistent at six month intervals that resulted in moving the PET scan up to December 14 (last Wednesday). My prior PET scan was in June 2016.

Unfortunately, the latest PET scan did not contain good news. Multiple new spots consistent with malignancy showed up that were not visible six months ago. This includes activity in lung nodules, subcarinal/left hilar lymph nodes (near the trachea), and mild activity around the tonsils and in the region of the oral cavity. The results were confirmed by a subsequent CT scan this past Saturday.

In the world of medicine, however, cancer doesn’t exist until the abnormal cells are viewed under a microscope. Accordingly, I will soon need to have a biopsy taken from one or more of the suspicious areas highlighted on the PET scan. However, I don’t need to wait for that procedure and the subsequent results to know the outcome.

For head and neck squamous cell carcinoma (SCC), which was my initial diagnosis, pulmonary metastases are the most frequent and account for 66% of distant metastases¹. This information, combined with the imaging results, leaves very little chance that the biopsy results will be benign.

Michael D. Becker Awaiting PET Imaging

Michael D. Becker Awaiting PET Imaging on Dec 14 at MSKCC in NYC

The consultation for the biopsy procedure has been scheduled for late this week and the actual biopsy procedure still needs to be scheduled. If the biopsy confirms that cancer has indeed spread to my lungs, the next step will be a meeting with my oncologist to discuss treatment options, which will likely include recent advances, such as biologic agents and immunotherapies (e.g., checkpoint inhibitors).

¹ ORL J Otorhinolaryngol Relat Spec. 2001 Jul-Aug;63(4):202-7.
Incidence and sites of distant metastases from head and neck cancer.

² http://www.headandneckcancerguide.org/hnc-dev/adults/introduction-to-head-and-neck-cancer/distant-metastasis/

Complete Response

Cancer - Three Arrows Hit in Red Target Hanging on the Sack on Green Background.

In my prior post, I referenced seeing my head and neck surgeon to investigate recent changes to my voice and swelling in my neck. Although there was nothing suspicious upon visual examination, he wanted to confer with both my medical oncologist and radiation oncologist to determine whether or not an imaging study was warranted. Much to my surprise, I received a call back after the Memorial Day holiday stating that they wanted to move up the date for my first post-therapy PET scan, which was originally scheduled for July 19.

For head and neck cancer, this first PET scan following chemoradiation therapy is a big deal. A “complete response” to therapy based on PET assessment is associated with a high probability of regional control (only 2.3% regional failure rate) and a five year overall survival rate of 79.8% based on long-term follow-up in a large uniform cohort at Memorial Sloan-Kettering Cancer Center (MSKCC, see reference below). With a suspected incomplete response on the first PET scan, the 5-year overall survival rate dropped to 57.0% in the same study.

My PET scan was rescheduled for late in the day last Friday (June 3), which meant that I wouldn’t receive a phone call with the results until today (Monday). It was worth the wait, however, as the report from my PET scan couldn’t have been better. There was no accumulation of the radio tracer in my tonsil, the previously enlarged lymph node, vocal cords or any other area of concern. Sometimes there is inflammation and other artifacts from treatment that radiologists can’t rule out as residual disease and therefore cautious language can be used in the radiology report, which wasn’t the case for me. Additionally, there was a marked decrease in the size of the infected lymph node.

Personally, I’m not a fan of the terms “cure” or “cancer free” – since right now there’s no way for doctors to know with certainty that all of the cancer cells in my body are gone. In fact, some cancer cells can remain unnoticed in the body for years after treatment. So for now I prefer to embrace the phrase “complete response,” which references the disappearance of all signs of cancer in response to treatment.

If cancer cells do come back, it often happens within the 5 years following the first diagnosis and treatment. In this regard, I’m optimistic about the expected 80% 5-year survival rate  – especially when compared to some other aggressive cancers, such as pancreatic cancer, which is associated with a 5-year survival rate of only 8% (American Cancer Society. Cancer Facts & Figures 2016. Atlanta: American Cancer Society; 2016).

I meet with my radiation oncologist in a few weeks and will learn more about how frequently I will need to have follow-up PET scans and other visits. Until then, I’m trying to digest the positive news, looking forward to slowly regaining some control over my life, and appreciating the coincidence that yesterday cancer survivors and supporters in communities around the world gathered to celebrate the 29th annual National Cancer Survivors Day® (June has been designated National Cancer Survivors Month).

Thank you to everyone (far too many to name…) who supported me during this difficult period – but especially my wife Lorie who has been absolutely amazing through all the ups and downs (luvya!).

References:

Int J Cancer. 2013 Sep 1;133(5):1214-21. doi: 10.1002/ijc.28120. Epub 2013 Mar 29.
Long-term regional control in the observed neck following definitive chemoradiation for node-positive oropharyngeal squamous cell cancer.
Goenka A, Morris LG, Rao SS, Wolden SL, Wong RJ, Kraus DH, Ohri N, Setton J, Lok BH, Riaz N, Mychalczak BR, Schoder H, Ganly I, Shah JP, Pfister DG, Zelefsky MJ, Lee NY.

Three Month Mark

Hard to believe, but later this week will be the three-month anniversary since I finished chemoradiation. Unfortunately, it’s also been nearly that long since my last blog post, although I did write a brief article for Cure Magazine published in April 2016 that can be viewed here.

I haven’t been writing much lately because I wanted this blog to be somewhat uplifting and inspirational. Frankly, the past few months have been extremely frustrating and difficult. It occurred to me, however, that sharing the bad along with the good may be equally important to others facing head and neck cancer. So here it goes…

In my last post from March 2016 I noted that my weight declined by 20 pounds since the start of chemoradiation. I’m now down a total of about 30 pounds (which I still think is okay since I was overweight to start). The additional weight loss comes from a combination of taste disturbances, reduced salivary output, and general loss of appetite during the period.

I’m pleased to report that my taste buds are now ~90% back to normal and that “most” foods taste the same as before therapy. Unfortunately, my saliva output is still greatly diminished and eating dry foods, such as bread, is very challenging. I have managed to eat a hamburger by taking off the top bun and eating the rest with a fork and knife along with a fair amount of ketchup. The biggest issue relates to a general lack of interest in eating, which I originally thought was due to the taste disturbances. Most days I have a high protein, nutritional shake for both breakfast and lunch and then a “normal” dinner and dessert. I haven’t been out to a restaurant since the start of therapy, as I am self-conscious about my eating habits.

Fatigue is still an issue, although it has improved over the past month or so. I returned to work full-time around mid-March, which meant getting up early and commuting to New York. Until recently, I would come home and literally pass out on the couch from exhaustion at the end of the day. Now I am able to stay awake through dinner, watch some television, and go to bed at a reasonable hour. I do still sleep on the morning train ride to New York and look forward to the weekends where I normally sleep until noon or later to catchup on rest.

The one major issue I haven’t discussed at length in this blog is the psychological impact of being a cancer survivor – namely depression. Societal expectations have taught men not to display any emotions. We are trained from an early age to be confident, stoic and strong. It is extremely difficult to fulfill this role or expectation as a male cancer survivor. On more than one occasion I have burst into an emotional crying session lasting a good 15-minutes. I’m not talking about the quiet episode of crying with sniffles and a tear or two down the side of your cheek. I mean full-fledged bawling your eyes out accompanied by nasal discharge and the near inability to speak normally – “I…I…I…nuh…na…nah…need…ah…uh…t…t…tis…tissue.”

The first such breakdown occurred around the start of chemoradiation when my wife and oldest daughter first came to my temporary apartment in New York. In retrospect, I had bottled up all of the emotion from first discovering the growth on my neck, to receiving a formal cancer diagnosis, to my first infusion of chemotherapy, etc. and let it all out at once. More recently, however, I broke down after showering the morning of my oldest daughter’s prom. I started to think about how happy I was to get home from New York during therapy to see my youngest daughter for her freshman formal and recalled the photographs from that evening with my neck visibly red from the radiation therapy. Then I started to think – are these going to be the last “big” events I will be around to see for each of my daughters? That spiraled into a series of awful “what if” questions that left me in a giant puddle.

Most of the time I am able to maintain a positive outlook and not let cancer “win” by occupying my every thought (insert ZOLOFT® ad here…). This is made harder by the requirement for periodic tests and imaging studies to determine whether or not the cancer has returned. Aside from those periodic tests, it feels like I am constantly watching over my shoulder for signs or symptoms of cancer’s return.

For example, in early May my wife noticed my voice had changed. At first she dismissed it as that froggy, lower tone you sometimes get first thing in the morning or when you have a head cold. But it didn’t go away and eventually even I noticed it. Subsequently, I found that the neck area under my chin was swollen. My first thought was “#@$&!” – the original cancer had now spread to the vocal cords, larynx (voice box), or other areas of the throat, as these would all be relevant symptoms. I saw my head and neck surgeon last week and he didn’t see anything suspicious upon visual examination. His initial diagnosis was that the voice change and neck swelling were simply the after-effects of radiation therapy, which can manifest even months after treatment. Nonetheless, he wanted to confer with both my medical oncologist and radiation oncologist to determine whether or not an imaging study is warranted. In the meantime, I’m trying to adjust to my new bass-baritone “Barry White” voice…which may or may not return to normal.

So that’s about it…you are now caught up on my life over the past few months. The next major event will be my PET scan on July 19, which will be the first such imaging test following treatment. Still hoping for a positive outcome from that study and will update as appropriate.

 

Pointillism

One of my wife’s favorite artists is Georges Seurat, a French post-Impressionist painter known for his role in devising the painting technique called “pointillism.” This technique uses small, distinct dots of color that are applied in patterns to form an image. Looking at such a painting from afar, our eyes and brains blend all of the dots of color into a fuller range of tones that then form an image.

Yesterday’s meeting with the radiation oncology team at Memorial Sloan-Kettering reminded me of pointillism. Prior to the visit, I saw the complete picture from afar – it would be 6-7 weeks of treatment and the associated side effects, but there was the prospect of being cured by the end.  After the meeting, however, I started seeing the hundreds or thousands of individual dots of color that represented my treatment.

IMRT mask

Example of the type of mask used during radiation therapy for head & neck cancer

For example, during the day they created the “mask” that will be used to keep my head and shoulders in the exact same place for my daily (Mon-Fri) radiation treatment. The mask is secured where you lay and prevents any movement of the head and shoulders (see example image). Unlike the older masks, there is a cutout for your eyes, nose, and mouth but coverage of the jaw largely prevents you from speaking. Frankly, it is terrifying! They did three imaging procedures in the afternoon (MRI, CT, and PET) and each one involved the mask being worn for about 30-minutes. Each time I was rolled into the imaging tube, I couldn’t help but think – what happens if I start coughing or choking? With my jaw immobilized I wouldn’t be able to do much. Trying to get past that fear, I quickly realized – wearing the mask would become a daily routine for the next 6-7 weeks.

The side effects of radiation therapy were another one of the individual dots of color that came into focus as I looked more closely at my treatment “image.” I’ve lost count of how many physicians and nurses have told me to “bulk up” now before starting therapy. Gain 10 pounds or more they say. This is due to the fact that in a few weeks it will be difficult to chew, swallow, etc. as a result of oral mucositis and dry mouth from the radiation therapy. As a result, weight loss and fatigue are to be expected.

During the day, I enrolled in two clinical trials – one for imaging and another for blood tests.  The imaging study looks at levels of oxygen deficiency (hypoxia) in the tumor tissue. Hypoxic tumor cells are resistant to radiation and to many anticancer drugs and therefore tumor hypoxia influences the outcome of treatment with radiotherapy, chemotherapy and even surgery.  The hope is that ruling out hypoxia in the area of the tumor could reduce the amount of radiation therapy needed to cure the disease – and thus reduce side effects. The blood test can be viewed as a type of “liquid biopsy” that detects circulating tumor cells and fragments of tumor DNA that are shed into the blood from the primary tumor and from metastatic sites. Changes in these markers may be able to predict the likelihood of disease recurrence after therapy.

FullSizeRender

The doctor uses a flexible, lighted tube called an endoscope to examine areas of the head and neck that are less accessible. The tube is inserted through the nose after applying a topical anesthetic (lidocaine – applied directly to the nose and throat) to make the examination more comfortable.

It was a very long day with my first appointment starting at 9am and not finishing until around 6pm, but aside from the aforementioned and putting aside more poking and prodding (including my fourth endoscope procedure – see tiny camera getting stuck up my nose in the embedded image…), by the end of the day I felt somewhat better knowing the timeframe for starting radiation treatment, which looks like it will be Monday, January 18. In addition, I felt much better after meeting my radiation oncologist Dr. Nancy Lee (you can watch a video interview with her under the “Videos” menu tab at the top of my blog). She is fantastic! I have a follow-up appointment with my medical oncologist this Thursday, where I will learn more about the timing for starting chemotherapy.

Since I couldn’t eat all day due to potential interference with the imaging tests, the best part of the day was grabbing a quick dinner in NYC with my wife before taking the train back to Pennsylvania. It is so great having her by my side during this ordeal!

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.

 

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