Feb 24, 2010 - 3:46 am
I am posting my story in the hope it might help somebody.
In July 2008, at the age of 51, I was diagnosed with a Stage IV T4 N2b SCC of the base of the tongue. The local cancer board quickly came up with a treatment plan consisting of radiation and chemo therapy, which was explained to me by the local radio-oncologists. I did not like the proposed treatment, so I started frantically searching for alternatives.
As I was doing my cancer research, I was more and more convinced that the food and the environment have a very significant effect on the cancer. I started a super strict diet, figuring, that even the most extreme diet will be cakewalk compared to the radiation-chemo-therapy. I ate only fresh fruits and lightly cooked vegetables with some rye bread, drank fresh home made juices several times a day; avoided taking any sugar, salt, meat and milk products.
During my search for alternatives, I came across proton radiation therapy. The proton centers’ websites and their research data seemed promising. I’ve contacted all of the centers in the US, but most of them did not even respond to my inquiries. I did manage to set up an appointment, however at one of the centers in the west coast, only to be told by the junior doctor that their treatment would be actually more damaging than the local IMRT treatment. Then I even contacted the most advanced proton center in the world in Switzerland to be told again, my best choice is the local IMRT.
In the hope of a surgical treatment I visited the regional university hospital and was seen by one of the best surgeon in the US, again to be told that the surgery would be so horrible that he can only recommend the local RCT.
Months went by; I was slowly loosing weight, due to the diet and the moderate exercise program, I was getting into shape and started feeling better than I've felt since a long time. Once a month I was having very stressful sessions with the local oncologist. He was doing his best to convince me to start the treatment, but I just could not do it.
Around October I was seen by an alternative therapist; he frankly told me that a cure by alternative methods would be a less than a thousand to one chance. Never the less he prescribed a wide variety of supplements. I am not sure if it was due to these supplements, or by the natural progression of the cancer, by mid November I started to feel something strange in my throat most of the time when I swallowed.
I knew I was running out of time and luck. It seemed that nobody, other than my local radiologist, wanted to treat this horrible disease. I was ready to give it a try, when I ran into my project manager at work. He asked how I was doing and after I confined to him my plans to start the treatment, he was asking me if there were any other options. Then I realized there was still one chance I haven't tried. I came across the UPEN Medicine website earlier. There was a section where the treatment of head and neck cancer by TransOral Robotic Surgery (TORS) was described, but I dismissed it, because it gave the impression that they only treat cancers in earlier stages. My PM asked me: "Why don't you try it?"
Yes, why don't I try it? I called Dr. Weinstein’s office at the UPEN Hospital, strangely all they wanted to know if I had any radiation therapy in the past. Since I did not, I was on the plane to Philadelphia three days later. Link:
Dr. Weinstein scoped my throat for about three seconds, then turned to me and said; “I think I can do it, but I need to do another test (staging endoscopy) before I can tell it for sure.” I could not believe it! We moved to the computer screen and in a few words he explained the CT scan: “See that white stuff at the back of the tongue? That is the lymph, the tumor is only in the lymph it did not grow into the tongue muscle.” I had to interject: “What about the area of epiglottis invaded by tumor, which all the other doctors used to point out, as completely hopeless?” He responded calmly: “See those black spots in the tumor? That is air; that means that the tumor is growing out like a mushroom and I’ll be able to cut it out with a good margin.”
In a few minutes I’ve learned that he will cut out the tumor and part of the epiglottis and my throat will learn to adopt to these changes the same way as it adopted to deal with the egg sized tumor; and that sometimes there is no follow-up radiation therapy, sometimes there is, with reduced doses and other times with higher doses. The TORS is not an experimental treatment, but it is not yet licensed by the FDA; and there was not a single case, when the insurance company did not pay for the procedure. Success rate? One failed procedure from 250 cases. Why the success rate is so high? Dr. Weinstein and his colleagues will only perform the procedure on selected patients when they know they can succeed.
I felt this was the best chance I had; I desperately wanted this treatment. Dr. Weinstein whipped out his iphone and started making plans on its calendar. He already knew what treatment procedure he will utilize, but he had to work out the logistics. I live on the west coast; I needed to come back to Philly with my wife, for pre-operation exam (staging endoscopy), then if I qualify, I'll have the TORS a few days later and five days after the TORS I'll have a modified radical neck dissection. He managed to schedule everything so it would be workable for us. I was euphoric and nervous at the same time; what if I won't be qualified.
A week later back to Philly. The staging endoscopy was a piece of cake for me. The procedure was done around 7 PM and a few minutes past 10 PM I walked out of the hospital with my wife and we walked to our hotel about 3 miles away enjoying the cool fresh air, knowing that I am qualified for the surgery. Three days later I had the TORS, according to Dr. Weinstein it was a piece of cake for him. I’ve spent 3 days in the intensive care unit under the care of nurses hand picked by Dr. W. The ICU took a lot out of me. I was on a breathing tube for two days and had a feeding tube inserted through my nose.
My modified radical neck dissection was scheduled early afternoon on Christmas Eve; Dr. Weinstein told me that he hasn’t scheduled an operation for more than ten years on that day, and the only reason he did it was to make our tight schedule work. I felt greatly honored. He seemed a bit concerned about the neck dissection; a lot of thing can go wrong. I knew I was under the best care but I was getting a bit nervous in the operating room while being prepped. Dr. Weinstein showed up with good news as usual: “We got the lab results and the margins had no cancer cells. My friend that means that practically there is zero chance for the cancer to come back in the same location.” I went under the anesthesia happily.
I came out of the neck dissection feeling absolutely miserable, but I knew the worst was over and I should be getting better soon. Sixty-six lymph nodes, some muscles, one salivary gland and a jugular vein were removed. This surgery definitely did not improve on my look and I wasn't a Brad Pitt to begin with either. But I could care less; the accessory nerve was saved, I could raise my left hand above my head. I will be able to swim.
I left the hospital and moved back to the hotel two days after the neck dissection. The feeding tube still in the nose, clips in the wounds on the neck, and lost about 40 pounds, I was not a pretty sight. A few days later the feeding tube came out. On New Years Eve the clips were removed and on New Years Day, after spending 17 days in Philly, we were heading home.
Within a week I was back at work. The first follow-up was scheduled around January 10. The lab results of the neck dissection were available and they did not look too good; the cancer spread to 17 lymph nodes and into some of the surrounding muscles. High doses of radiation therapy with chemo therapy were recommended. The local radiologist came in to the picture again and managed to convince the UPEN radiologist to increase the dosage even more. I figured that I’ve been through enough already and refused any further treatment.
In the first few weeks, after the surgery, eating and swallowing was a chore, but improved rapidly after that. Now, I’d say, my swallowing is 95% my speech (voice) is 95%. Side effects: due to the change of the throat architecture I have some back nasal drip and in the mornings I hack like older guys. Some parts of my neck and ear are numb and my left eye got a bit weaker and gets watery sometimes. Although I lost a salivary gland, I do not really feel it. A few weeks ago my dentist discovered a cavity, I am not quite sure that it is related to the loss of a salivary gland. Unfortunately, I slowly eased back to eating regular food, I have tremendous appetite, and gained back all of the weight I lost and even some more.
I had an MRI yesterday I don’t have the results yet, but I am not too concerned. I feel I’ve already cheated that nasty disease by surviving this long.
Dr. Weinstein told me once: “Don’t forget, you are not normal; you have cancer.” I fully understood what he meant at that time, but looking back on my life in the past 14 months since my operation; it has been as close to normal as possible.