Nerry's Journey with Squamous Cell Carcinoma, Oral Cavity ...

Spouse/Partner: Head & Neck/Throat Cancer > Oral Cavity and Oropharyngeal Cancer > Squamous Cell Carcinoma

Patient Info: Living with cancer as a chronic illness (undergoing adjuvant therapy), Diagnosed: about 6 years ago, Male, Age: 42, Stage IV

  1. 1
    • Nerry
    • Experience with Squamous Cell Carcinoma,...
    about 4 years ago
    Nerry's Avatar

    Diagnosed

    Oh No

    I couldn't believe this was happening to my husband. He had had pain in his tongue for over a month. He thought it was an ulcer and we went to a surgeon who offered to remove it. The pathology report then came positive.

    0 Comments
  2. 2
    • Nerry
    • Experience with Squamous Cell Carcinoma,...
    about 4 years ago
    Nerry's Avatar

    Taste change/loss

    Side Effects

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

    0 Comments
  3. 3
    • Nerry
    • Experience with Squamous Cell Carcinoma,...
    about 4 years ago
    Nerry's Avatar

    Surgery

    Procedure or Surgery

    After the results of the initial biopsy came out, my husband underwent surgery in which part of his tongue was removed, along with the lymph nodes. The surgeon had to remove a proper safety margin after the biopsy. The surgery itself went smoothly; however the side effects and the impact to daily life were a huge shock to my husband and I.

    Went as Expected: Disagree
    Minimal Recovery: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    1 Comment
  4. 4
    • Nerry
    • Experience with Squamous Cell Carcinoma,...
    about 4 years ago
    Nerry's Avatar

    Radiation or no radiation

    Decision Point

    The surgeon said that he didn't think that my husband needed radiation. We sent all medical reports and history to IGR in France and they seconded the opinion of the surgeon, with a recommendation for close follow up after 3 months. We also sent them to the US to a friend who sent it to a doctor there. The doctor thought we should do Radiation. We sent them to Germany and they thought we should remove the lymph nodes on the other side as well. Finally we decided to take the surgeon's and IGR's opinion and we didn't do anything.

    0 Comments
  5. 5
    • Nerry
    • Experience with Squamous Cell Carcinoma,...
    about 4 years ago
    Nerry's Avatar

    Finished treatment

    Celebration

    We thought that treatment was finished at that stage

    0 Comments
  6. 6
    • Nerry
    • Experience with Squamous Cell Carcinoma,...
    about 4 years ago
    Nerry's Avatar

    Cancer is back/Recurred

    Oh No

    My husband started experiencing pain again. We saw the surgeon and he said it was normal after such surgery. 2 weeks later when the pain increased we visited the doctor again and he recommended a Fine Needle Aspiration. The results were negative; however he said he wasn't confident about the results. We travelled to Paris, IGR, and met with the surgeon there. He confirmed that the cancer was back. He recommended an aggressive course of treatment: Chemo therapy followed by surgery followed by Radiation concurrent chemo therapy. We went back to Egypt to start Chemo therapy. The medical oncologist there convinced the surgeon in Egypt to have a biopsy first because he was had doubts that it was back. My husband agreed to do the biopsy, which turned out positive. He then started the chemo treatment, but unfortunately he acquired a fistula

    0 Comments
  7. 7
    • Nerry
    • Experience with Squamous Cell Carcinoma,...
    about 4 years ago
    Nerry's Avatar

    Implant chemotherapy port

    Procedure or Surgery

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

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  8. 8
    • Nerry
    • Experience with Squamous Cell Carcinoma,...
    about 4 years ago
    Nerry's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    My husband acquired a fistula, so we decided to go back to Paris to resume treatment. In addition to the usual side effects of chemo therapy; nausea, hair loss, fatigue and fever there was the complication of managing a fistula.

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  9. 9
    • Nerry
    • Experience with Squamous Cell Carcinoma,...
    about 4 years ago
    Nerry's Avatar

    Nausea/Vomiting

    Side Effects

    In addition to the usual side effects of chemo therapy; nausea, hair loss, fatigue and fever there was the complication of managing a fistula. Everything he ate through the mouth went through the fistula.

    0 Comments
  10. 10
    • Nerry
    • Experience with Squamous Cell Carcinoma,...
    about 4 years ago
    Nerry's Avatar

    Feeding tube (gastrostomy)

    Procedure or Surgery

    he had to depend on a feeding tube until the fistula healed and he was able to eat through his mouth again. 3 weeks later the fistula recovered and he was able to eat through his mouth; however the doctor recommended to keep the tube because of the side effects of surgery and radiation.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  11. 11
    • Nerry
    • Experience with Squamous Cell Carcinoma,...
    about 4 years ago
    Nerry's Avatar

    External radiation

    Radiation

    After he finished chemo therapy. He did a PETCT. The doctors told us he responded very well to the treatment that they choose not to proceed with surgery, because it's huge and will have a great impact on his life. They chose to proceed with Radiation. He had a total of 35 sessions spread over 7 weeks. He didn't feel much during the first 2 weeks.

    Painless Experience: Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  12. 12
    • Nerry
    • Experience with Squamous Cell Carcinoma,...
    about 4 years ago
    Nerry's Avatar

    Finished treatment

    Celebration

    We were excited that the treatment was over and were so eager to go back to our country. We had been in Paris for 4 months.

    0 Comments
  13. 13
    • Nerry
    • Experience with Squamous Cell Carcinoma,...
    about 4 years ago
    Nerry's Avatar

    Saliva changes (thick saliva)

    Side Effects

    Unlike the chemo therapy side effects, unfortunately the side effects of Radiation are permenant. Swallowing problems and mouth dryness are the main side effects of Radiation. His speech is slurred as a result.

    0 Comments
  14. 14
    • Nerry
    • Experience with Squamous Cell Carcinoma,...
    about 4 years ago
    Nerry's Avatar

    removed the gastrostomy

    Procedure or Surgery

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

    Went as Expected: Strongly Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  15. 15
    • Nerry
    • Experience with Squamous Cell Carcinoma,...
    about 4 years ago
    Nerry's Avatar

    Cancer is back/Recurred

    Oh No

    One month later, my husband started experiencing pain again. we did a CT and MRI and we sent the results back to Paris. They told us to go back to the IGR because they needed to do a biopsy, because they had suspicions the cancer was back. We did another FNA that proved to be positive again. The surgeon confirmed that surgery was inevitable.

    0 Comments
  16. 16
    • Nerry
    • Experience with Squamous Cell Carcinoma,...
    about 4 years ago
    Nerry's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    He started chemotherapy to control further growth of the tumor.

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  17. 17
    • Nerry
    • Experience with Squamous Cell Carcinoma,...
    about 4 years ago
    Nerry's Avatar

    Depression/Anxiety

    Side Effects

    He started experiencing panic attacks for fear that the cancer was back. When we went back to Paris, we met with a psychiatrist at IGR and he started taking strong anti depressants.

    0 Comments
  18. 18
    • Nerry
    • Experience with Squamous Cell Carcinoma,...
    about 4 years ago
    Nerry's Avatar

    Flu-like symptoms (fever, chills, sweats)

    Side Effects

    He had a fever of 41 degrees and was hospitalised for 3 days trying to manage the fever

    0 Comments
  19. 19
    • Nerry
    • Experience with Squamous Cell Carcinoma,...
    about 4 years ago
    Nerry's Avatar

    Pain

    Side Effects

    unbearable pain. he was on very strong pain killers that made him sleep almost all day and night

    0 Comments
  20. 20
    • Nerry
    • Experience with Squamous Cell Carcinoma,...
    about 4 years ago
    Nerry's Avatar

    Surgery

    Procedure or Surgery

    It was a huge surgery, lasted for around 11 hours. They removed part of the mandible, tongue and all his teeth on the right side and they did reconstructive surgery as well. They took bones and muscle flaps from below his left arm. He had to stay at the hopsital for 5 weeks.

    Went as Expected: Agree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  21. 21
    • Nerry
    • Experience with Squamous Cell Carcinoma,...
    about 4 years ago
    Nerry's Avatar

    Will they be able to do the surgery or not?

    Oh No

    The intern at the hospital told me that the tumor was very close to the artery and there was a very high chance the doctor will not be able to proceed with the surgery. At that time my husband was in so much pain he was sedated and didn't hear what the intern said. I tried to reach the surgeon but it was around christmas time and I wasn't successful. 2 weeks later, 5 days before the surgery, my husband was hospitalised because of very high fever and the surgeon passed by. He explained that the MRI showed that the tumor was very close to the artery. He was going to start the surgery by trying to remove the tumor away from the artery. If he was successful he would continue with surgery, if not then he wont continue. In that latter case, there wouldn't be anything they could do and my husband would only have a few months to live!

    0 Comments
  22. 22
    • Nerry
    • Experience with Squamous Cell Carcinoma,...
    about 4 years ago
    Nerry's Avatar

    Ryle Feeding tube

    Procedure or Surgery

    He had to depend on the ryle for 2 weeks before they fixed him a gastrostomy as it turned out that he needed it for the following six months.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  23. 23
    • Nerry
    • Experience with Squamous Cell Carcinoma,...
    about 4 years ago
    Nerry's Avatar

    Confusion

    Side Effects

    He was so confused when he was waking up after surgery. He thought he died and they put him in a plastic bag. He tried to get up, which was very dangerous for him so they had to tie him to the bed. This made things worse for him

    0 Comments
  24. 24
    • Nerry
    • Experience with Squamous Cell Carcinoma,...
    about 4 years ago
    Nerry's Avatar

    Pain

    Side Effects

    The pain was so strong. He was using a morphin "cassette" as they called it. It was a device that connected to the port and every time he felt pain he pressed a button and the morphin was injected immediately.

    0 Comments
  25. 25
    • Nerry
    • Experience with Squamous Cell Carcinoma,...
    about 4 years ago
    Nerry's Avatar

    Swelling (edema)

    Side Effects

    His whole face was swollen. it gradually decreased in size over 2 months.

    0 Comments
  26. 26
    • Nerry
    • Experience with Squamous Cell Carcinoma,...
    about 4 years ago
    Nerry's Avatar

    Depression/Anxiety

    Side Effects

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

    0 Comments
  27. 27
    • Nerry
    • Experience with Squamous Cell Carcinoma,...
    about 4 years ago
    Nerry's Avatar

    Good news the cancer was removed... bad news there's a high chance it will come back

    Oh No

    The following day after surgery, the surgeon asked to meet me. He told me that he was able to remove the cancer and the surgery was a very difficult one. There was a very high chance it will come back.

    0 Comments
  28. 28
    • Nerry
    • Experience with Squamous Cell Carcinoma,...
    about 4 years ago
    Nerry's Avatar

    Rejection of transplant

    Side Effects

    during the first 2 weeks after the surgery, the outer skin of the flap turned black.

    0 Comments
  29. 29
    • Nerry
    • Experience with Squamous Cell Carcinoma,...
    about 4 years ago
    Nerry's Avatar

    Finished treatment

    Celebration

    after 5 weeks, he was dismissed from the hospital, with recommendation of close follow up after 1 month. We had to remain in Paris for fear that there would be any further complications

    0 Comments
  30. 30
    • Nerry
    • Experience with Squamous Cell Carcinoma,...
    about 4 years ago
    Nerry's Avatar

    Surgery

    Procedure or Surgery

    3 weeks after surgery, he had to do another skin graft. This time they took the skin from his thighs. It took his thighs 4 months to heal and left a large scar.

    Went as Expected: Strongly Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Agree
    0 Comments