TracyC'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 7 years ago, Female, Age: 46, Stage III

  1. 1
    • TracyC
    • Experience with Invasive, Squamous Cell...
    over 4 years ago
    TracyC's Avatar

    Biopsy on side of tongue.

    Procedure or Surgery

    I found out the hard way to be an advocate for yourself and to make sure the ear nose and throat doctor you see is concerned about your comfort level during tongue biopsies. I had two. I found out from my oncologist after the second one that there is a cream or gel they can put on the injection site that can numb you BEFORE the numbing shot. My very caring oncologist was so upset that neither of the ent doctors had taken the time to do that. My advice is PLAN ahead and don't leave it to chance. If numbed properly it should be okay. And, always get pain meds before you leave for the trip home and the next 2-3 days and you should be fine. I don't want to scare anyone but just want to help keep someone out there from having a similar experience.

    Went as Expected: Strongly Disagree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  2. 2
    • TracyC
    • Experience with Invasive, Squamous Cell...
    over 4 years ago
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    Surgery

    Procedure or Surgery

    I went in for surgery to remove the tumor on my tongue and the surgeon also opened up my neck on the same side and "cleaned out" lymph nodes. He came in telling me all was good, the margins were clean and lymph nodes were benign. He said no further treatments were needed. I was very relieved, but when I looked at myself in the mirror I was horrified! My face was uneven like a stroke victim, and I had a huge scar from my ear down and all the way up in a u shape to my chin. I could barely talk. I was however, almost pain free. The pain of the tumor was gone and I could sleep and after a few days eat. After a few days the swelling started to go down. My speech was a real worry for me though. I am an elementary school teacher and talking is a big part of teaching!! I went back to work in 6 weeks with my speech improving significantly. I trained myself to slow down and say my words clearly. My face gradually evened out. For a while I hid the crookedness of my lips with very careful lip lining techniques. But it began to even out, and in a few months was okay. Now, the only time I notice any crookedness is when I am overly tired or when I yawn. The scar from the first surgery was almost unnoticible with a little makeup. I used Mederma faithfully. Basically, I recovered and am almost the same.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Not Specified
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  3. 3
    • TracyC
    • Experience with Invasive, Squamous Cell...
    over 4 years ago
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    Cancer is back/Recurred

    Oh No

    After my first cancer surgery, I went back to work and was doing great. Then, I noticed little jabs of ear pain. This was a real red flag becuase it was the same pain I had felt with the first tumor. They did a CT and found a tumor in my neck on the same side that my tongue cancer had been. I knew it was bad when they wanted to have surgery the next day. The tumor came back malignant and a more agressive form of squamous cell carcinomo. The tumor board couldn't come to a complete agreement about if the place they removed was a lymph node or not. I was sent to have a PET scan, and we got more bad news. Tumors were found under my jaw below where the primary tumor had been. I noticed the doctors demeaner changed. They stopped saying things like, "We can fix you." Instead it was more like,"Are you ready to do battle?"

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  4. 4
    • TracyC
    • Experience with Invasive, Squamous Cell...
    over 4 years ago
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    Implant chemotherapy port

    Procedure or Surgery

    The port process was not difficult to recover from at all. The real difficulty was the mental recovery. It was a stark reminder that my life was about to change. Today, when I see the scar it still evolves those old feelings of uncertainty and fear, but now, it feels too like a badge of honor.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
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  5. 5
    • TracyC
    • Experience with Invasive, Squamous Cell...
    over 4 years ago
    TracyC's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    I had two different "stages" of chemo in my doctor's plan. First, the hard stuff which included Taxotere. The first time you go in is scary, no doubt. Expect it. I felt fine the first week of treatment. I was tired over the weekend, but actually went camping the next week. My hair started to get dull and brittle. Then, by the next week it was coming out in handfuls. I had already decided I would shave my head. So after about an hour of working up the nerve I did it. I let myself cry and be sad for about thirty minutes; then, I put on a pretty pink scarf, put on some nice big hoop earrings and went on with life.

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  6. 6
    • TracyC
    • Experience with Invasive, Squamous Cell...
    over 4 years ago
    TracyC's Avatar

    hospitalized due to low blood count and potassium.

    Oh No

    I got really sick one morning after my second round of chemo. My heart started racing and I was very weak. We rushed me to the hospital and found out I was neutropenic and had low potassium. My heartrate was 170 when I got there, and it had slowed down. They kept me for two weeks and I got blood transfusions. I felt so much better after getting blood.

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  7. 7
    • TracyC
    • Experience with Invasive, Squamous Cell...
    over 4 years ago
    TracyC's Avatar

    Radiation

    This person has yet to add any details about this experience.

    Painless Experience: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  8. 8
    • TracyC
    • Experience with Invasive, Squamous Cell...
    over 4 years ago
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    Breakthrough

    Celebration

    After the first treatment week, I noticed the pain in my ear had stopped completely. A ct after the third treatment week, showed us what we had been waiting to see. The tumors were completely gone! I found out later, that my oncologist had changed the particular course of treatment that he put me on because of great results from it. He said it had just been approved for head and neck 6 weeks before I started.

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  9. 9
    • TracyC
    • Experience with Invasive, Squamous Cell...
    over 4 years ago
    TracyC's Avatar

    External radiation

    Radiation

    Radiation on my mouth and neck was very hard. It was okay for about two weeks with no real problems. After that, I was on a crazy amount of medicines to help with side effects. I had to have a feeding tube put in. It was the lowest point in my life emotionally, but it probably saved my life. The whole experience is fuzzy to me probably because of the drugs. If I had known, I would have had a suction pump to help remove thickening saliva. Sounds gross but that was a real problem and it kept me naueous to the point that I was hospitalized for the last two weeks of treatment. I don't really remember mouth sores. They gave me lots of meds to prevent them. I lost so much weight that I looked like a skeleton. I still have problems from radiation that will be with me from now on like dry mouth, swallowing certain foods, stiff muscles and joints in neck and jaw. I lost all taste for about a month, but it mostly came back one taste at a time. My first to come back was salty. I can't handle anything even remotely hot now. Now, I am really in good shape; I'm back to normal, but it is the "new normal".

    Painless Experience: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  10. 10
    • TracyC
    • Experience with Invasive, Squamous Cell...
    over 4 years ago
    TracyC's Avatar

    Celebration

    I am coming up on my two year anniversary of being completely cancer free. I feel blessed. Cancer changed me forever. I am not the same person as I was before. I know things I never wanted to know; I've been to the brink and back to the land of the living. I hope by writing this I can help someone else who may now be where I was just a few short years ago. My advice to any new cancer patient is: take help when it is offered, be ready to filter out unintended negative statements from well meaning people who just can't relate, reach out to other patients, and do something positive for someone else (It will keep you from dwelling on yourself.) God bless you all!!

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