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.

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…