Jul 27, 2010 - 3:48 pm
Hoo-boy! Another BB forum to post to, but obviously, this is one that no one ever wanted to really a part of to begin with. Well here goes my first long-winded tale as I'm sure most people's first posts usually are.
A quick shout-out of my rather unusual case... I'm 41, a non-smoker, non-drinker and in fact a lifelong athlete and Ironman triathlete. So that puts me in like the 0.5% group for this. Just my luck! But, and that's a big but, I grew up in a town, Pompton Lakes, NJ in which a Dupont factory had dumped toxic waste into the local water and air. Yes, it's a cancer cluster. 25 years I've had a minor chronic cough as a result. Nothing serious enough to ever call me "sick" or hold me back - as I wrote, I race in triathlons. But I regularly see my ENT and get scoped and look at the ol' pipes.
6 weeks ago I felt something in my throat. I thought it was work-stress and gave it 3 days. When it didn't go away, I was in the ENT's office within 5 days. "Well that's new, you have a cyst above your vocal chords. It doesn't look like cancer, just fluid-filled, but it'll need to come out." On July 6th he did a laryngoscopy and removed it. And then on the 8th, the bombshell - the biopsy came back positive for squamous cell carcinoma. We think most of malignant cells came out with the cyst, well-encapsulated, but with a slight margin. I understand that - the ENT was looking to remove what could be a malignancy, just a cyst. He was as shocked as I was when it came back positive.
I've had PET scan (7/12) which showed no uptake anywhere else and CT with contrast (7/16) which showed no masses or tumors. So it looks like we caught this pretty early. But the problem is that according to the first pathology report, the cyst was surrounded by lymphatic tissue. The docs were surprised. "Your scans show zero uptake on your lymph nodes, there are no nodes by your vocal chords... it's strange. It could be simply due to inflamation from the original cyst." So I've talked to a local Oncologist, just saw someone at Johns Hopkins in Baltimore on Friday and I'm going to Wake Forest University Baptist Hospital tomorrow.
The initial Oncologist and Radiation Oncologist want me to do radiation therapy and low-dose cisplatin chemo. Want to hit it hard and now. Maybe playing it safe and thinking in terms of only 5 years. But the Oncologist-SURGEON at JHU tells me that radiation is a once-in-a-lifetime thing. "A one-shot gun." And he really made sense when I asked, "what if you're wrong," and he replied, "then you still have the radiation option. But once you go down that radiation road, there's no turning back and that's it for your lifetime."
*** IS THIS TRUE? ***
I'm thinking about suggesting another laryngoscopy at the primary site to hopefully get all malignant cells, see clean margins and hopefully zero lymphatic impact. Most importantly - GET A SECOND BIOPSY AND PATH REPORT! If there is potentially something with my neck nodes, not enough to show on a scan but just to play it safe - surgical removal of them. The JHU Tumor Board based on only the first path report said to remove the nodes (the surgeons on the board) or radiate them (the radiation oncologists on the board). Every doc goes to their speciality place!
If radiation is that serious and a one-time treatment, I would like to hold off on it until it's really necessary. I'm only 41 and have been diagnosed in about as early a stage as can be. If surgery can get me clean, I can hold the radiation in reserve if this should come back 15, 20 years from now (hopefully never). Yeah the neck scar won't be so pretty, but compared to radiation, it's probably nothing.
I really think I need a second biopsy. Too much riding on just looks of slides of a cyst that just came out. Would it look different now?
Thoughts on me?