MY JOURNEY THROUGH TONGUE CANCER AND BACK

MY JOURNEY THROUGH TONGUE CANCER AND BACK

Larry P. Schiffer

Introduction

All I wanted to do was wake up. That was my only goal after learning that I had tongue cancer and was about to undergo twelve and a half hours of major surgery. Well, I woke up and this is my story.

Doctors can tell you what to anticipate when you are diagnosed with cancer, but only a patient can tell you how it really was to go through it. I had two goals in mind while writing this. First, I hope my story is helpful to others with tongue cancer and related head and neck cancers. Second, I want to credit my health care team, the head and neck cancer specialists at Northwell Health Cancer Institute headed up by Dr. Douglas Frank.

My Diagnosis

It started with a small sore at the back left side of my tongue (what doctors call the base of the oral tongue). I never smoked and I don’t drink, so I thought it was just a little sore that would go away, but it was not going away. At my next dental appointment in March 2022, I asked my dentist to look at the sore. She said I should have it checked out by an oral surgeon. I asked if I could use my ENT. In June 2022, I went to my ENT, Dr. Jay Youngerman, to have it checked.

My ENT said it was a lesion that had to come out. But he sent me for a CT scan (CT Neck Soft Tissue with IV Contrast), which then led to a needle biopsy of the lymph nodes on the left side of my neck. Funny thing about getting diagnostic tests these days, if you use a patient portal like I do, the results show up before you hear back from your doctor. The CT scan came back suspicious for squamous cell carcinoma on the tongue and a suspicious metastatic lymph node (which is obviously why he sent me for a needle biopsy). But because I had not heard from the ENT, I went about my business. The needle biopsy took place two weeks later and I waited.

On Friday morning, June 24, 2022, I had just returned from swimming (I was trying to swim every) and as I turned the key to my front door, I heard my wife say to someone on the phone, “he is coming in now, hold on.” It was my ENT calling. Dr. Youngerman got right to the point. “You have tongue cancer,” he said. He told me that this was not something he handles but that he had contacted the top head and neck cancer surgeon at Northwell, Dr. Douglas Frank, and that Dr. Frank’s office would be calling me within the hour. My life was about to change and a whirlwind of activity was about to start.

My Team

Within the hour, Dr. Frank’s office called to set up an appointment for the following Tuesday. I am a practicing lawyer in New York and was about to start an arbitration hearing at the latter half of that week. I asked if I could speak to Dr. Frank to discuss what was about to happen so I could plan my schedule and deal with the arbitration.

That evening, Dr. Frank called me back. He was very reassuring and took his time in answering my questions. He told me that there would be no surgery that week and that if I wanted to go forward with the arbitration I could. He explained that there are about four or five hospital system teams in New York that handle head and neck cancers, that they are all excellent, and that his team was among them. He explained that he wanted me to meet the team as soon as possible but that he would go over everything with me on Tuesday.

I continued to prepare for the arbitration. On Tuesday, I packed my suitcase and my litigation bag, loaded up the car, and headed out to see Dr. Frank. My wife was going to drive me to the train station after seeing Dr. Frank so I could go into New York City and prepare and try the arbitration at the end of the week.

The visit with Dr. Frank was a lot. Information overload is one way to put it. No, there would be no surgery this week, but he had a cancellation the following week on July 7, 2022, and he was making sure that the operating room was ready for me that day. He explained all about tongue cancer and what the surgery would entail. He again said that he wanted me to meet the team, which included a second head and neck surgeon who would handle the reconstruction and plastics side of the surgery, a medical oncologist in case I needed chemotherapy, a radio oncologist because I would most likely need radiation treatment, a speech and swallow therapist, who would work with me to make sure that after the surgery I could swallow and speak again, and some others who I would need further down the road.

Dr. Frank explained that he and the other surgeon, Dr. Dev Kamdar, would work in tandem and overlap for several hours, while they addressed my cancer. Dr. Frank would excise the lesion on my tongue and whatever margins he needed based on visual observation and pathology results to remove all tissue that could contain any cancerous cells. He would also remove any lymph nodes where the cancer had spread. He explained that with squamous cell carcinoma on the tongue the squamous cells love to jump to the lymph nodes in the neck just below the tongue.

Dr. Frank said that Dr. Kamdar would create a tongue flap from the skin and a vein and artery from my arm. The tongue flap would be placed over the excision site to rebuild my tongue. The tongue flap is a relatively recent positive development in the treatment of tongue cancer. The vein and artery were the plumbing for the tongue flap to keep it alive. The surgery itself was going to be long and could take ten or more hours. I was not a fan of the ten or more hours.

Dr. Frank told us that they have had excellent success in removing squamous cell carcinoma in tongue cancer patients resulting in near normal lives after a recovery period. This included eating, speaking, swallowing and going about a normal life and having a normal life span. I was diagnosed at stage two (because it had metastasized to the lymph nodes) and he said that I should be fine. This was quite reassuring. Yet he was very careful to outline some of the things that could and would happen.

He explained that I would lose salivary glands and that I would have to adjust the way I ate and would have to drink a lot of water during meals. He told us that I could have deficits in certain facial or mouth movements. He said that because of the radiation, I would have to use high dosage fluoride toothpaste the rest of my life to protect my teeth from more rapid decay. He also said that I likely would develop lymphedema, which is the collection of lymph fluid under the skin, because of the removal of the lymph nodes and the radiation damage to the lymph system around my neck.

Obviously, he could not say exactly what would happen and how I would react to the surgery, but he did say that full recovery (or as best as I would recover) would take a good year.

I was very satisfied with Dr. Frank’s demeanor, plan of action and explanation of the process. I told him that I was not looking for second opinions and that I would like to go ahead. I also told him I was not going to do an internet search on all the items we discussed and would let him do his job without my second-guessing the process based on a Google search.

I was in a bit of a fog from the whole process, but my wife started driving towards the train station. I called my client and told her what train I was planning to make and she asked me if I really wanted to go forward with the arbitration given the news I had been given. I said I wasn’t sure, but just then I received an incoming call from Northwell Health. I told her I would call her back after I took the call.

On the phone was Dr. Kamdar’s office asking if I could come see him right away. Meeting the team was about to start and that sealed the deal. The arbitration would have to wait. I called my client back and told her I was headed to another doctor and that we would have to postpone the arbitration.

In rapid succession I met with Dr. Kamdar, Dr. Marisa Siebel (the medical oncologist) and Dr. Renu Hausen (the radio oncologist). Dr. Kamdar explained his role in creating the tongue flap and reconstructing my tongue. He checked both my arms to determine which had the best blood flow for extracting the skin, vein and artery needed to build the tongue flap. He explained that he would try to close the arm with the existing skin, but that he might have to take skin from my leg to create a graft on my arm to close the wound.

Dr. Hausen explained how the expected radiation treatment would work. I would likely need 30 or so radiation treatments, which would be administered every day (except for weekends and holidays). She explained that radiation would not start until I was healed from the surgery and was cleared by a dentist to have radiation. She also explained how in the beginning the radiation treatments would be ok, but that by the last few weeks, I would have difficulty eating and swallowing and that I likely would feel like there was hot glass in my throat and mouth. It was possible, she said, that I would need a feeding tube to maintain nutrition and weight.

Dr. Siebel, who could be a stand-up comedian, was very exuberant and thought that I might not need to see her. But she nevertheless explained the chemotherapy process just in case the results of the surgery and pathology indicated that a chemotherapy protocol was recommended. She said there would be six infusions, once a week, alongside the daily radiation treatments. She indicated that the chemotherapy would enhance the radiation and would likely cause weakness and other side effects. But she thought my outcome would be very positive based on her view of my labs and reports.

Because surgery was scheduled for July 7, there was no time to see the speech and swallow therapist in advance, but she would become an integral part of the team, along with a physiatrist who addressed my residual issues after my treatments were concluded. The team also included a nurse manager, Beth Sferrazza, who worked with the entire team and helped coordinate appointments and addressed other issues.

Prior to surgery, I had a COVID test and a PET scan. I also had to be cleared medically for surgery by my internist and my cardiologist (oh, did I mention that in 2022 I also was diagnosed with what one physician’s assistant called a “happy little heart murmur”—technically mitral valve prolapse).

The PET scan is basically a CT scan on steroids. Essentially, you get a radioactive isotope injected into your blood stream, which after it settles in your system and they put you through the scan and the cancer cells light up like little lights. As anticipated, the PET scan confirmed the CT scan and biopsy and found the tongue cancer (left posterolateral oral tongue corresponds to known squamous cell carcinoma) and the lymph node involvement (two nodes - left level II cervical lymph node?and adjacent, inferiorly located left level II cervical lymph node).

Surgery

Surgery was scheduled for July 7, 2022 in the morning. In preparation for surgery, I put all my bills on autopay. I did this to spare my wife from having to deal with our bills, which were mostly paid through bill pay and other online services. She was not familiar with how I did this and let’s say my attempt to show her how I paid bills online did not go well. I also did this because I was not sure if I was going to wake up or how I would be once I woke up. The point is, when facing major surgery, one needs to get their ducks lined up in a row. The will and health care proxy already existed. If you don’t have those, get them.

Before 2022, I had never been hospitalized overnight as far as I remember, except for birth, which I don’t remember. Earlier in 2022, I developed a kidney stone that required the insertion of a stent to remove the stone. So, during COVID, I was in an unused children’s ward with a giant stuffed Olaf staring at me as I recovered from the placement of a kidney stent and stone removal. Now I was faced with major surgery and a longer hospital stay. Great fun.

My surgery lasted for twelve and one-half hours and was a bit more extensive than originally planned. My wife dropped me off, said goodbye when I headed into surgery and was sent home. No point in waiting ten to twelve hours in a hospital.

Obviously, I don’t remember the surgery, but the surgical report (yes, the patient portal again) described it like this: “Left partial glossectomy and neck dissection of levels 1 through upper 4.” That was Dr. Frank’s part. Dr. Kamdar’s part was: “Reconstruction of oral cavity and pharynx with radial forearm free flap, repair of forearm donor site with left thigh split thickness skin graft, complex vestibuloplasty. Tracheostomy.” Basically, they cut my neck open, removed the involved lymph nodes, cut out the tumor on the tongue and took a decent margin around the tumor on the tongue and the floor of the mouth. They then tested my arms and used my left arm (not the optimal choice for me because I am left-handed) to create the flap, which they then installed. They put in two drains, a Doppler wire to monitor the blood flow through the tongue flap, and gave me a tracheotomy. I also had a nasal feeding tube (which was a whole other story) and a catheter.

Recovery

So, I woke up. That was the main goal and I succeeded. When I woke up it felt like there were 10 people all over me touching, moving and checking me. Because of the trache, I could not talk but I was breathing fine. A friend sent me an erasable writing board that I used to communicate for the first few days. I stayed in the surgery intensive care unit (“SICU”) for around five or so days (primarily because they did not have any beds on the head and neck floor). That was fine with me because the nursing attention in SICU is much better than on the floor.

In the beginning I stayed very still, especially when sleeping, because of all the things sticking out of me. After a day or so, however, I was able to stand and swallow. Every morning the ENT team (which was Dr. Frank’s team led by Dr. Zach Kelly) would come en masse to check on me. They were closely followed by the Plastics team (which was Dr. Kamdar’s team headed up by Dr. Denis Knobel). These daily rounds became interesting because they were constantly checking on things and removing things as time went on.

One time, the Plastics team asked to see my leg. I asked why??I had not realized that they took skin from my leg to close up my arm. It wasn’t certain that this would be necessary, but obviously it was. I never felt much on the leg, but when they pulled back the sheets you could see the wound covering filled with blood.

The SICU team had its own rounds, but they tended not to bother with me after a while because I was progressing well. I had great nurses in SICU who encouraged me to get out the bed, sit in a chair and walk the small floor that the SICU had. Physical Therapy came by also to walk with me. I started walking a lot and was constantly asking the SICU team to clear the way for me (I had lots of equipment attached to me). Eventually, the head of SICU asked if I wanted to lead their daily exercises because I was walking so much. Also, I was walking faster than the physical therapist so she eventually fired me (you don’t need me anymore).

Slowly but surely the objects in me started coming out. First was the catheter. Then they changed the trache to one that you could use to talk. So, I started talking. Dr. Frank told me not to talk too much but others encouraged me to talk. Then they took out the trache. A trache feels like a piece of wood stuck in your throat. Not very pleasant. It was great to get that out.

Next, I asked them to do something about the feeding tube. To avoid patients who pull out feeding tubes, they sutured the feeding tube onto my nostril. That was the only thing that hurt me. It became infected and then had to be treated with antibiotic cream. They eventually relented, cut the suture and taped the tube to the nose. That was so much better. No more pain. Eventually they removed the feeding tube and I started eating soft foods.

It wasn’t until I was up on the floor that the drains came out. During a visit with Dr. Kamdar, he pulled out the Doppler wire. I was basically free and starting to heal.

The interesting thing about this experience is that even though I had major surgery and a lot of incisions, I was never in pain (except for the nose infection). I didn’t need to take much in the way of pain medication. I am still not sure why this happened but who cares, no pain is an excellent way to recover.

I was eventually discharged from the hospital after about nine days. A few weeks later, I was sitting on the couch getting ready to go out when I looked down and saw brown liquid all over my shirt and chest. Apparently, I sprang a leak. Basically, I had a wound site infection and it leaked through one of the suture sites. Back to the hospital we went holding my neck with large gauze pads to meet one of the terrific ENT residents. The intake nurses in the ER thought I was bleeding from the neck. ?I stayed in the hospital three or four days until the infection was gone and the cultures came back negative for anything more problematic.

Eating, Drinking and Talking

Although we started at the hospital with Speech and Swallow therapy, I now scheduled appointments with a great Speech and Swallow therapist, Katie Rocha (who it turns out is best friends with the daughter of one of my friends from growing up). Katie taught me several exercises, including some that I still need to do. I had a series of neck stretches and mouth exercises to keep the swallowing muscles working. These exercises are important to retain the ability to swallow during and after radiation. I also had to learn Manual Lymphatic Discharge (“MLD”) massage, but that came later after the wound site healed.

Many patients who have this type of surgery end up with Lymphedema and Fibrosis. Because of the surgery, the lymphatic system is disrupted (and in my case some nodes were removed). After radiation, it becomes even worse. Essentially, MLD is necessary twice a day (along with 3 hours of wearing a compression garment) to keep the lymphatic fluid flowing and avoid its build-up in the neck.

Fibrosis, also from surgery and radiation, is the thickening of the tissue in the neck (in my case). I eventually went to physical therapy (in Florida) at the Cleveland Clinic with Jim Smail. Jim worked on the fibrosis and also taught me how to manipulate and break up the fibrous tissue. Physical therapy continued (in New York) with Diana Saporito at Northwell Stars who worked on the fibrosis and other things.

I also developed Trismus, which is essentially lockjaw. It is the tightening of the jaw joints, which prevents you from opening your mouth wide. The exercises help stretch the mouth so you can open wide and say ahh.

During the recovery period between the hospitalization and the start of chemotherapy and radiation I had the opportunity to really heal up. Luckily, we were able to make use of our cabana at the Sunny Atlantic Beach Club in Atlantic Beach, New York. I sat back in the cabana out of the sun, did some work, and watched the ocean in front of me. Nothing heals you better than an ocean breeze.

By the time I was ready for the next phase of my treatment, I was in pretty good shape. I was talking well, eating real food, not just soft foods, and drinking and swallowing with no problems. I was healing well and felt fine. My scars were getting better and I was doing my physical therapy. I went to see both the radio and medical oncologists to schedule my treatments. They warned me what to expect. Take them seriously when they explain how radiation and chemotherapy will affect you. They know. They have seen it hundreds of times.

Chemotherapy and Radiation Treatments

Prior to radiation, I had to be cleared by a dentist. That is because radiation can damage the teeth and they need to make sure that there is nothing loose or damaged. Getting dental clearance was not easy (my dentist was away and the office was unresponsive). I tried multiple dentists, but many are afraid to examine and clean the mouth of someone who just had surgery. Ultimately, I went to the dental clinic at Long Island Jewish, which was a trip back in time. The clinic looked like it was frozen in the 1950s. But the staff was great and they did a 360 degree scan of my teeth. I was cleared and then went to a periodontist for cleaning and a fluoride treatment. I now have to brush my teeth with high fluoride prescription toothpaste for the rest of my life.

I was scheduled for 6 to 6? weeks of treatment. Radiation every day and chemotherapy once a week for a total of 33 radiation treatments and 6 chemotherapy infusions. This is the standard protocol for my situation. To prepare for radiation, I had to be fitted with a mask that is marked up to precisely pinpoint the radiation. The mask looks like a fencing mask. It is form-fitted on the face. To form-fit the mask, it is soaked in warm liquid and pressed onto the face by the technician.?To me, it was a form of waterboarding. Not fun.

Before the actual treatments begin, they fit the mask and then run a simulation. The radiation treatment takes about 8-10 or so minutes, but feels like an eternity. I made it through the simulation, but had to sit on the table for quite a while because I was overwhelmed and felt claustrophobic under the mask. The overwhelming feeling comes from the mask being form-fitted to the face and bolted to the table so your head does not move at all. We decided that Zyanax was the way to go for the real treatments.

Unfortunately, the simulation failed because I still had an air pocket in my neck caused by the wound site infection. We had to wait another week or so and run the simulation again. This time, when the technician put the mask on, I asked him to take it off right away. He suggested cutting out the mask around the eyes, mouth and nose, because the radiation markings were not on my face. That helped a lot and allowed me to complete a successful second simulation. I used Zyanax a few times, but then became used to the mask and stopped the drugs.

The radiation machine first took x-rays to make sure my body and head were aligned properly. It then made a series of passes around my head, a pattern that I began to recognize and which let me know when we were almost done. Once a week, the machine took at CT scan. At first the radiation was fine. No real effects. But don’t be fooled. After about 4? weeks became hard to eat and my mouth started to feel like it was on fire.

Dr. Hansen knew this would happen and strongly recommended a feeding tube to avoid having to go to the hospital for IV nutrition if I lost too much weight. This feeding tube was not the nasal tube that I had for surgery but was a feeding tube inserted through my abdomen into my stomach. We arranged for Interventional Radiology to surgically insert the feeding tube at Huntington Hospital just in time. At the beginning, after the anesthesia wore off, the feeding tube felt like I had been shot in the stomach. I could not bend and had to be helped onto the radiation table because of the pain in the abdomen. I ended up finishing the radiation treatments with the feeding tube still in me, but the pain subsided after a few days.

Shortly after receiving the tube, I was unable to put anything in my mouth. Dr. Hansen was right. That resulted in a visiting nurse training us how to clean and use the feeding tube. The food is basically a nutritional liquid, almost like Ensure, and the supply company drop-shipped enough food to last for months. It takes a while to get used to pouring the food into the plunger vial that had to be hooked up to the 6 inches of tube hanging out of my upper abdomen just under the diaphragm. Let’s just say there were a few “clean-ups on isle 2.” Eventually, we got the hang of it and used the food exclusively for about 2 weeks. After that, I was able to start eating again (slowly) and weaned myself off the feeding tube.

Chemotherapy was another story. I only had 6 infusions, but they took place on top of the radiation. I had a great physician’s assistant, Joanne Arnold, who made sure I was hydrated, had stable weight and prescribed the right stuff to avoid mouth and throat pain (hard to avoid). They even had a special formula that the LIJ pharmacy creates, which had lidocaine to numb the pain and other ingredients to sooth the mouth and throat.

The infusions take 4 to 5 hours. Three are pre-drugs and anti-nausea medicines, along with saline solutions and, of course, the chemotherapeutic agent. In my case, ironically, I was given the same drug that my father took for lung cancer back in the early 1980s. The other issue is finding a vein to infuse the chemotherapy. Although I am a member of the New York Blood Services Gallon Club and have donated over 2 gallons of blood, my veins no longer accept needles very well or produce a good blood flow. It was a struggle at each infusion, but luckily, I was able to get through the six treatments without having to put in a port.

What chemotherapy does is enhance the effects of the radiation and increase its effectiveness. It also magnifies the effects on the body, which is why by week 4 to 5, I needed the feeding tube. The chemotherapeutic agent stays in the body for several weeks if not longer and it takes several weeks after treatment ends to start feeling better. Luckily, about a week or so after the last radiation treatment, I started to feel a bit better and began to eat again.

Post Treatment Therapies

After several weeks of building back my ability to eat solid food, I had the feeding tube removed. The removal took less than a minute, although the appointment and the wait was substantially longer. In the meanwhile, I had been taught MLD by Katie and I began my twice-daily MLD massages.

I also started seeing a physiatrist as part of my team, Dr. Patrick Martone, who managed my non-existent pain and coordinated my therapy with Katie and my physical therapy for fibrosis. It was Dr. Martone who advised that I would have to use a compression garment for 3 hours a day and any time I flew to help suppress the lymphedema.

A week or so after I had the feeding tube removed and the wound healed over, we headed to Florida to our new vacation home that I had seen literally 1 day since early May 2022. There I arranged for physical therapy and continued my MLD massage.

Post-cancer life requires that you see your various doctors periodically and have various scans and tests to make sure that the cancer is gone and has not returned. So, we had to depart Florida and head back in January for a couple of weeks of appointments and a PET scan. The protocol for the first several years is a CT scan every quarter and periodic visits with each doctor. In time, the scans will be spread out more and the visits will reduce, but for now, I see at least one doctor almost every month or two.

Conclusion

I am just about a year post-surgery. So far, all my scans have been clear. The PET scan and the most recent CT scan showed no signs of disease (all sorts of other things, but no cancer). I continue to wear my compression garment, do my various neck and mouth stretching exercises, do my maintenance MLD massage, and keep my mouth and teeth clean. I would say I am 95% back to normal. I eat normal foods and do all activities. I require lots of water because of the saliva loss and eating takes longer than it used to. But all in all, I have recovered well and settled into a new normal, which is not that different than the old normal.

It takes a good year to recover. While my tongue is still slightly swollen, it is probably as close to?normal as it is going to get. The good news is that a diagnosis of tongue cancer does not mean the end. With a team like I had, a full recovery is possible.