Last week I got a core biopsy on the mass in my neck. The original FNA (fine needle aspiration) biopsy suggested that the cancer had spread to my lymph nodes from somewhere else, but it was inconclusive. Additionally, blood tests showed that my hemoglobin IGG level was low – a possible indicator of lymphoma. (I started calling it “Lenny the Lymph Node” because it’s in my lymph nodes)
Friday of last week I had an appointment with my surgeon and he reviewed the biopsy results with me. I have squamous cell carcinoma (“squamous rhymes with “Stamos” so I have been saying I have “John Stamos Cell Carcinoma”). It is NOT a lymphoma. Basically, there is a spot somewhere in my ear/nose/throat that is the primary site for the cancer. It is small – smaller than my littlest fingernail – and as such did not show up on the PET or CAT scans 2 weeks ago. At this time we don’t know exactly where the primary site is located – in medical terms it is “occult,” meaning hidden.
This type of cancer is primarily associated with smokers and heavy drinkers. It’s the throat cancer you get from using chewing tobacco, cigarettes, or heavy, heavy drinking. I have never had a cigarette in my life, drink very moderately, and have never put chewing tobacco anywhere near my mouth. The only other possible culprit is second-hand smoke.
My medical oncologist feels that this cancer is not tobacco-related at all, though. And that’s a good sign in that it’s easier to treat. It’s just one of those unfortunate roles of the dice. He also feels that the primary site is very small in a blood-starved area, which is why it remains hidden.
The type of cancer a person has significantly impacts the treatment plan. Since I don’t have lymphoma the proscribed course of action is as follows:
1. Immediate surgery to remove the cancerous lymph nodes (29th of this month). On the off chance that the cancer has spread to the muscle tissue in my neck, the neck muscle will have to be removed as well. (this will leave me with a slightly deformed neck if that is the case). In either case I will have a wicked cool scar on my neck.
2. Remove my tonsils, biopsy my voicebox, tongue, and throat in an attempt to find the primary site.
3. Recover for 6 weeks.
4. If the primary site is found, immediate targeted radiation on the infected area. If it is not found, broad-area radiation will be the treatment. Hopefully we’ll find the primary because broad area radiation has some possible and uncomfortable side effects.
5. Chemotherapy to “mop up” any possible cancer cells that may have moved through my body.
The surgery will be on September 29th and will be performed at Winter Park Memorial Hospital in Winter Park, FL. I can expect to be in the hospital for 2-4 days. The 29th can’t come soon enough for me. The tumor is growing in my neck and today, for the first time, it is causing some discomfort.
Carey is handling all the logistics around visitations, etc, while I am in the hospital. Please coordinate with her if you want to come by the hospital or the house after the surgery. She is my angel and I couldn’t do any of this without her. If you don’t know her email address then contact me and I will get you in touch with her – she’s my gatekeeper. Only those she lets pass shall be able to. 🙂
Anyway I hope this clears up the mystery and gives everyone a clear understanding of where I am. The prognosis is good that within 5 years I will be cancer free. There are no guarantees in this life, but I am confident that this will be the case. I have excellent medical care and the thoughts and prayers of hundreds of people around the world.
I am glad it is nothing as bad as the wonderment of speculation and the amassing of theories that arrive without facts but only the stories of someone who knew someone who had a long lost sister that was adopted at birth by a couple in Cuba and she knew someone that had the very same thing.Those hidden types are not so hidden once they know what they are looking for and they have specific locations in which to explore.Teach her to look after your blog and keep the world informed.Good luck Ron.
[…] the shock. Â My doctor said I had “squamous cell carcinoma” but what I heard was “John Stamos cell carcinoma.” Â It became, later and after I had accepted the reality of my cancer, a running joke for me […]
Mr. Stamos,
If you see this, I want you to know I have SCC as well. It showed itself through swollen lymph nodes on my left jaw as well. I was in Hawaii for six weeks sailing and diving when the neck started swelling. I flew back and forth from Maui to Honolulu testing and finally the diagnosis. Left and returned to Cailfornia a couple of days later after four weeks there. The primary was not found so no radiation. I have had three chemo treatments and have had good results as reported today. A God send and the first good news that offers actually hope. Today I retook the PET scan and was shown proof of success. Tumors shrinking and spots disappearing have been the story today. I am at UCSF (university of California, San Francisco) cancer center. I researched and visited MD Anderson in Houston, and Stanford as well and settled on UCSF. Doing mainstream medicine and high THC canabis oil as a supplement to standard care. Have a lot to share that is just like your experience just a head a few weeks. If I can add insight and my experience might help.
By the way, once the cancer spreads from the primary site, it’s in the blood and never cured. The best we can hope for is long term control of the cancer. Let me know if I can help.
[…] Stage III squamous cell carcinoma. I almost misheard the diagnosis and thought he said I had “John Stamos Cell carcinoma.” Stage III meant it had spread from somewhere else, and the fact that it was in the lymphatic […]