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TransOral Robotic Surgery (TORS)

GEV's picture
GEV
Posts: 5
Joined: Feb 2010

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:
http://www.uphs.upenn.edu/pennorl/research/tors/

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.

Hondo's picture
Hondo
Posts: 5744
Joined: Apr 2009

Welcome here to CSN, it sound like you have been through a lot my friend. I am sorry to hear that they were not able to get all of the Cancer but don’t giving up. I had NPC and it came back on me times, I took treatment for it twice and when it came back the last time all the doctors could do was to offer more chemo and less then a 25% cure. I too opt for no more treatment as my body was falling a part before my eyes and I knew if it did not work the first two times it more then likely will not work the third. March will make 5 years from my last treatment date and I am doing ok just have a lot of side affects for the first two treatment. Please keep posting and letting us know how you are doing

All the best to you my friend

GEV's picture
GEV
Posts: 5
Joined: Feb 2010

Hi Hondo,

I got the results of the MRI scan; and it showed no change in status, similarly to the previous two PET scans last year.

I am not sure if all of the cancer was removed by the surgery, but statistically radiation therapy right after the surgery will provide better survival rate in the first year, but lower survival rates later on. I think my gamble of refusing the radiation therapy paid off so far.

All the best for you too.

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

"statistically radiation therapy right after the surgery will provide better survival rate in the first year, but lower survival rates later on". Really? That's a rather provocative statement since most protocols call for rads and chemo, especially since most people here are getting that treatment. You would think our Drs would have given us the same statistical information, but mine did not. In fact when I said maybe I would rather not have the rads he said my chance for long term disease free survival would go down to about 20% from 80%.

Where did you get that statistic?

Best,

Mick

GEV's picture
GEV
Posts: 5
Joined: Feb 2010

My post about the statistics was not meant to be provocative. It was more than a year ago when I was reading cancer articles and statistics available on the internet and some which were not. (My local radiologist was kind enough to print me articles on radiation and chemo therapy not available on the internet hoping to convince me.) But I can not remember where did I read it.

My apologies to any one, who felt the statement was provocative.

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

No worries. I did not mean provocative in any judgmental way about YOU GEV and I did not find it offending in any way. It is a provocative statement just by its nature, given that most of us have opted for radiation because our Drs told us it was our BEST chance for long term, disease free survival.

Best,

Mick

jbob1981
Posts: 12
Joined: Feb 2010

Dr. Weinstein did my operation in December. He is a great man, and his team is wonderful. I had a carotid body tumor that was malignant removed. They cut from my ear to my chin, so I have nice big scar now. They also removed many lymph nodes that the cancer had spread to. They could not remove all of the infected tissue during the operation so I had to go through 5 weeks of radiation treatments, that I just finshed yesterday. Radiation was not as bad as I thought it would be, but moving my wife and two small children into a hotel for 5 and half weeks was tough. We are home now and I am looking forward to getting my normal life back. I go back to Penn in a few months to get a full body scan to see if the cancer may have spread some place else. I will keep my fingers crossed until then. Good luck to you Gev.

MarineE5
Posts: 751
Joined: Dec 2005

Hello GEV and jbob,

Dr. Weinstein also did my surgery. That was 5 1/2 years ago. Base of Tongue cancer, at the time, he wasn't doing the Robotic Surgery yet. But I am glad he was able to do what he did with me.

You both are correct, he is a great man and understanding. When my wife and I first met him, he spent nearly 2 hours with us off and on. He had a office full of people and more in each room. He would check on his return patients and his staff would talk with us to fill us in on what to expect. He would bounce back in to answer any new questions that we had and allow us to digest his answers and that information.

When I go back for my follow up visits and he is running behind, I know that he is still doing the same thing. Bouncing between his regular patients and his new patients, giving the new patients the time they need at such a confusing time.

My Best to Both of You and Everyone Here

GEV's picture
GEV
Posts: 5
Joined: Feb 2010

Did you have any radiation therapy?

Dr. Weinstein is still the same, working hard and taking good care of his patients. On our first day we had to wait about 8 hours for my staging endoscopy because he had to do an emergency surgery, but he still did the endoscopy after 7 PM. On most days way past 6 PM he would come by with an entourage of interns and check on his patients.

Best of luck.

MarineE5
Posts: 751
Joined: Dec 2005

GEV,

Yes, I had IMRT Radiation to eliminate any missed cancer cells that might still be in the head and neck area.

My Best to You and Everyone Here

GEV's picture
GEV
Posts: 5
Joined: Feb 2010

As you probably figured out already, you probably had the best care available. This makes a huge difference, I am pretty sure you'll be alright.

It must have been really tough to spend all that time in a hotel with your family. There were only me and my wife and we only have been in the hotel for 17 days and it was still tough. Luckily our 5 kids could stay at home and the older ones were able to look after the younger ones during the winter break.

I am glad that your radiation therapy wasn't too bad. I've met an older gentlemen at Dr. Weinstein's clinic and he claimed he did not even feel the radiation therapy after his surgery. His dosage was less than 50 Grey though, mine would have been over 70.

Good luck.

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