Nikgogol Story

Hello all,

I have been a silent lurker on these boards for a bit over a month.  Your questions and sharing of your experiences have aided me greatly as I found myself diagnosed with head and neck cancer.  One of the most helpful and soothing functions of these boards has been the ability to search through threads, identify people with a diagnosis similar to mine and learn about their experiences.  Therefore, with the object of “paying it forward” to future survivors, I will tell my story.

At time of diagnosis, I was a 37-year old white male, non-smoker (never a cigarette in my life!), social alcohol user (wine with dinner kind of guy) in decent shape.  I am married with two small children (3 ½ year old and a newborn who was under 3 weeks at time of my diagnosis).  

I developed a lesion on my tongue in the fall of 2011.  At the advice of a dentist, I went to see an oral surgeon in spring of 2012,  The first oral surgeon was unconcerned – given the appearance of the lesion and my lack of risk factors, he did not suspect cancer was probable (and the lesion may not have been cancerous at the time).  I received a mouthwash with instructions to call him back if it didn’t go away in a few weeks.  As weeks turned into months and then years, I consistently put off getting the lesion re-checked as I was “too busy” with work, life, etc.  Finally, in August of 2013, as it was getting larger and interfering with my ability to drink white wine and eat spaghetti sauce, I went to another oral surgeon who took a biopsy (I could tell by his body language he had a strong suspicion something was up).  I received the call on 8/29/13 that I had a superficially invasive squamous cell carcinoma of the left lateral oral tongue.  

The next couple of weeks were spent seeing a couple of different doctors to develop a treatment plan.  My primary ENT preliminarily diagnosed me as T1N1Mx based upon a suspicious lymph node and wanted to do a partial glossectomy and selective neck dissection to remove the lymph nodes on the left side of my neck.  He did not order any scans, as he did not think anything we found on the scans would change our treatment approach.

I went to Wake Forest Baptist Medical Center's Comprehensive Cancer Center for a second opinion.  They wanted to run scans.  The CT scan showed the one large left side node and a suspicious looking node on the right side.  I went back for a follow-up PET Scan.  To my great relief, the PET Scan came back negative (even for the suspicious left side  node).  

Confirming that the approach my original ENT suggested was the same Wake would recommend (and finding out my original ENT had an excellent surgical reputation), I went in on 9/23/13 for the surgery.  I had the surgery on Monday afternoon and was released from the hospital on Thursday afternoon.  To be honest, I felt at the time of release that it may have been a bit premature, but my doctor felt the earlier I could get home, the quicker I would recover (and again, he was right).

The surgery was not easy (I am still recovering from it).  Important milestones I can remember were last shot of morphine (early Wednesday morning – switching to oral oxycodone), eating some applesauce, broth and pudding (Wednesday), eating pureed stew (Friday), eating first real food (chicken, Saturday night) and stopping the pain pills altogether (last one was before bed Sunday night).  It is amazing to me, however, that once I got the recovery ball rolling how quickly things began to get better.  The human body has amazing recuperative systems when given the correct circumstances.

On Monday, 9/30/13, I received the best news of all.  The pathology of the lymph nodes showed no evidence of cancer and my margins were clear except for 1 or 2 strands of dysplasia – no radiation or chemo for me!  I was officially diagnosed as T1N0M0, Stage I.

My next few years are going to be spent with 3 month visits to the ENT, checking to make sure no sign of recurrence appears.  My ENT will not be running any scans unless he finds something suspicious via inspection.  I will be having a nice celebration at each statistically significant milestone.

I am lucky enough to be a generally optimistic person, and throughout the process have never had any real doubt that I would beat this.  The frantic pace probably helped.  I cannot say that there have not been a few times my mind slipped into “what if” land, but those were few and far between.  I have an awesome wife as my primary caregiver and parents who stayed with us to help look after our young ones (which has been most of the stress for me during the process).

One thing I would like to mention for anyone new – there is an awesome website called Caring Bridge.  I used it to update my whole family, all my friends and many work colleagues of my progress.  It helped us from having to repeat each new development to each person.  I also enjoyed sitting in the hospital reading the guestbook comments from all of my loved ones.

I probably will contribute to the boards infrequently – I am not a big “public sharer”.  However, as the information and stories on here have been invaluable, I am deeply grateful that so many of you are.  Good luck to everyone with their treatments and prognoses.  From here on out, I hope to live by my motto of “Cancer – Get the F*CK out of my body!"

Nikgogol

EDIT:  Forgot to mention that my cancer was HPV+ (as you can likely have guessed from my risk factors)