tgaw53's Journey with Invasive, Squamous Cell Carcinoma

Survivor: Head & Neck/Throat Cancer > Oral Cavity and Oropharyngeal Cancer > Squamous Cell Carcinoma > Invasive

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: over 6 years ago, Male, Age: 64

  1. 1
    • tgaw53
    • Experience with Invasive, Squamous Cell...
    over 5 years ago
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    Diagnosed

    Oh No

    In late August of 2010, I was rubbing the back of my neck trying to relieve a crick and gently let my hand slide down the front of my neck. I noticed a small lump on the right side of my neck just below my jaw bone. I felt the other side and there was nothing there. For the next several days I kept running my hand over the area and the lump was not going away. After about a week I mentioned it to my wife, who is a nurse, and she insisted I go see my primary care physician about it. I got in to see him about a week later and he thought it might be a virus of some sort so he prescribed an antibiotic and told me to take it for two weeks and come back to see him then. After the two weeks had passed nothing had changed so he referred me to an Ear, Nose, Throat specialist. I was able to see the ENT a few days later, on Sep. 30. He looked in my ears, rubbed the outside of my throat, then ran a scope up my nose and down my throat. After what seemed like 3 or 4 minutes with this scope in my nose (probably only about 30 seconds) he point blank told me that I had what looked like tonsil cancer that had spread to a lymph node in my neck. He kept talking for the next several minutes but I did not hear another word he said. Finally, I asked a few questions to verify what he had actually told me and he made it clear that I had cancer. My appointment was at 2:30 in the afternoon but the doctor was late getting to the office so I was running late. My wife works at the hospital just around the corner from the doctors office and when she had not heard from me by 4:30 she decided to come over to the doctor's office to see if I was still there. As she was walking up the sidewalk from the parking lot to the building I was exiting the building and she saw me so she stood there and waited for me. She asked me, "how did it go?" and I looked her in the eye and said "not well". She thought I was teasing and asked again. I then told her that I had cancer and realized that I had not heard a lot of what was said by the doc so we both went back in and I had him repeat his conversation to both of us. We scheduled a biopsy for the following Tuesday, Oct. 5. We were both dumbfounded and numb. I left my car at the doctors office and just rode home with my wife fearing that I was too distracted to drive safely. We spent the entire evening and night wondering if this was jsut a dream. I did not sleep a wink. These things just happen to other people, right? So for several days I stressed and worried that I had just been give a death sentence. Tonsil cancer is rare and usually associated with smokers and heavy drinkers. There are a few other causes that are possible but those tests were negative so the cause of this is unknown. When we met with the oncologist for the first time though he made me feel a lot better. He said this is treatable and curable and explained the treatment process to us. When he was done I gave the guy a big hug. He said that I was going to hate him for a few months and then I was going to love him. I was ready to get this started.

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  2. 2
    • tgaw53
    • Experience with Invasive, Squamous Cell...
    over 5 years ago
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    Surgery

    Procedure or Surgery

    After some scans in the days between my diagnosis and the surgery my ENT said he thought that the cancer was not attached to the tonsil after all and could just do a biopsy on the outside of my neck. This meant quicker healing time and lass invasive surgery. However, once I was on the table he got a better look and decided to do a tonsilectomy on my right tonsil as well as the biopsy on my neck. He sent off the tissues and it was confirmed that I had Stage III tonsil cancer that had spread to my neck. Being 57 years old at the time, getting my tonsil out was pretty brutal as far as the pain went while recovering. I had pain meds and sprays but I just could not eat and barely drink. I lost 15 pounds in 2 weeks but the fun was just starting. With my mouth and throat still sore and still unable to eat, I was told that I needed to visit the dentist because with radiation coming I needed to have any teeth that looked like they may need work over the next 2 years removed. So, two weeks after my tonsilectomy and biopsy, I had to get my 2 lower wisdom teeth cut out and another tooth pulled. They would then try to start chemo and radiation 2 weeks after that.

    Went as Expected: Strongly Agree
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Disagree
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  3. 3
    • tgaw53
    • Experience with Invasive, Squamous Cell...
    over 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    My treatment was to consist of 3 chemo treatments using the drug, Cisplatin. I was told that this was one of the stronger chemos and he was giving me the strongest dose. In addition, I would have to go to the Cancer Center every day, M-F, for 7 weeks to get radiation treatments. The start of my treatments was delayed one week because my mouth had not healed well enough yet from the teeth extractions. In the meantime, all I could envision was the cancer continuing to grow and spread while I was recovering from my teeth being cut out. I felt like we were wasting time. So I received my first chemo and radiation treatment on Nov. 8.

    Easy to Do: Agree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  4. 4
    • tgaw53
    • Experience with Invasive, Squamous Cell...
    over 5 years ago
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    External radiation

    Radiation

    Prior to getting radiation treatments I had to get fitted for a mask to use during treatments. This consisted of me lying on the table and the technicians placing a wet mesh mask that covered my shoulders and head then tightly forming it to my features. They then let it dry until I came back for my first treatment. Every day this mask would be placed over my head and shoulders and bolted down to the table during my 30 minute Because of dehydration, I finally had a port inserted in my chest since they were having a hard time finding a vein for my IV's . Another thing about the radiation treatment was I had to place 2 large mouthpieces in my mouth each day while lying there to help protect my teeth. This was uncomfortable, especially in the beginning when my mouth wasn't completely healed from the dental work but also due to the fact that I had nausea anyway and placing these large pieces in my mouth would gag me each day. My biggest fear was that while lying on my back and bolted to the table I would have to vomit and with nobody in the room with me I would choke. The techs were in the next room watching through a camera and listening, but it still concerned me. So, everyday I would try to keep my mind off of what I was going through by saying the rosary during treatments and if I finished before the treatment was over I would start it again. This was a ritual that helped me get through it.

    Painless Experience: Agree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  5. 5
    • tgaw53
    • Experience with Invasive, Squamous Cell...
    over 5 years ago
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    Nausea/Vomiting

    Side Effects

    From day one of the very first chemo treatment I had nausea and vomitting. By the time my chemo actually started I had lost about 25 lbs. due to the surgery and teeth extractions. I had not eaten anything other than an occaisional bite or two of jello or cottage cheese and drinking the milkshakes that my wife would make for me. The Cisplatin drug was definitely a rough one and I stayed nauseated for about 3 months. In addition to the chemo, the radiation near my throat also began to cause a lot of gagging so I was pretty miserable during the entire treatment process. I am a big baby when I get sick anyway but this was just really bad. After the second chemo I went into renal failure and had to be admitted to the hospital for 11 days. During these 11 days an ambulance would come and get me and take me to the Cancer Center every day for my radiation treatments. While there I developed a slight case of pneumonia as well as a severe gout attack that went from my toe to my ankle and could barely walk. MISERABLE! In addition, they inserted a feeding tube since I was not eating and I kept this until August of this year. I was also pretty doped up so I thought I had only been there about 3 days but it was eleven. I was released the day before Christmas Eve. I did not care how I felt...I just wanted to be home for Christmas. The doctor cancelled my 3rd chemo saying that my kidneys just could not take it. Now, 10 months after my last treatment, I am still having to see my kidney doc due to my creatnine levels being elevated. The strange thing is I never lost my hair. I did lose about a 2 inch swath around my neck and lower head but this is the are where the radiation was aimed and I am not sure if that caused it or not. Otherwise, I kept my hair. The one good thing that came out of this entire process (other than the fact that I am still alive) is that I lost 45 lbs, and needed to. I have been able to keep it off after 10 months. The other side effects are that I have constant dry mouth since my saliva glands were fried, and my taste buds are just not the same. Foods that I used to like just don't taste the same anymore. And nothing tastes as good as it used to. Nothing. My one craving now is a banana milkshake from Steak & Shake every day. It feels good on my throat and it is the only thing I eat or drink that really tastes good. They probably wonder why I am there every day ordering the same thing over and over! Another side effect was chemo brain. I heard my wife and a couple of nurses mention this but thought it was nurse talk. However, after googling it I found out it is real. A lot of confusion and memory loss. I actually had chemo brain for about 6 months flooowing my last treatment.

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  6. 6
    • tgaw53
    • Experience with Invasive, Squamous Cell...
    over 5 years ago
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    Remission

    Celebration

    My last radiation treatment was Dec. 28th and we had a little celebration at the Cancer Center complete with a "Graduation Certificate" presented by the staff. The doctors had told me that it could be up to a year before I would feel like myself again. I thought that sounded like a long time but here we are 10 months later and they were right. I feel like I am about 85% back to normal. Since January I slowly could tell a slight difference each week. I gradually got some strength and energy back, slowly started to eat on my own although this did not happen until about April. In the meantime, I used my feeding tube and since my throat still hurt and it was hard to swallow due to scar tissue the feeding tube became an easy method for me to get used to rather than trying to eat like I should. I kept the tube until August at which time I went ahead and had my port removed also. During the entire process my family and friends were a huge support but in particular, my wife was a true blessing. She cared for and protected me like a mama chick protecting her baby. She stayed up with me in the nights, she kept my feeding schedule at all hours including the 2am feeding, and made sure I was taking my 12 different meds at the right times. She drove me to my treatments every day or saw to it that someone else did, including my step-daughter. All this while still trying to work full-time as the Diabetes Education Coordinator at a local hospital. Not to mention that she took care of all the bills, household tasks and worried constantly. Thank you, Rita!!!!! We attended the American Cancer Society's Relay for Life in our hometown in May and that was a little emotional. I am still seeing my docs on a regular basis...my ENT every month for a year and every other month for the second year where he scopes my nose and throat every time, my oncologist evry 3 months and my radiologist every 3 months. I also get a blood test evey month to check my creatnine level and see my kidney doc every 3 months. They say if I get through year 2 that my chances of it recurring are pretty slim but many times if it does come back it is usually cancer of the tongue or esophogus up pretty well. And although I still have a few issues such as no taste and dry mouth, my ENT summed things up nicely. He said "At least you're here to have those problems". Amen! However, the celebration has been short lived. I had my port and feeding tube removed on August 3rd. Thinking that things will finally get back to normal, we were both excited and relieved. Then, two weeks later on August 16th, my wife was diagnosed with ovarian cancer. What are the odds??? This wonderful woman that sacrificed so much while taking care of me now has cancer. It is as if God's plan was for me to get well just in time to take care of her now. And that is what I am doing. I am sure that she will post her story at some point on this site but in the meantime my life is devoted to taking care of her during her treatments and I just hope and pray that her outcome is as good as what I think mine will be. While my focus is on her I continue to get better and thank God every day that I am able to be here for her.

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  7. 7
    • tgaw53
    • Experience with Invasive, Squamous Cell...
    over 5 years ago
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    Dr. Appt.

    Celebration

    Had my 12th scope in 10 months with camera through my nose and down my throat today and all is still looking good. After December I only have to get this every other month.

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