Pablo's Journey with Squamous Cell Carcinoma, Anal Cancer

Patient: Anal Cancer > Squamous Cell Carcinoma

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: about 8 years ago, Male, Age: 58, Stage III

  1. 1
    • Pablo
    • Experience with Squamous Cell Carcinoma,...
    almost 7 years ago
    Pablo's Avatar

    Misdiagnosed

    Oh No

    After some isolated instances of bright red blood in my stool, I had a colonoscopy and was misdiagnosed with internal hemorrhoids. A year later after symptoms persisted and increased, a biopsy finally revealed the correct diagnosis.

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  2. 2
    • Pablo
    • Experience with Squamous Cell Carcinoma,...
    almost 7 years ago
    Pablo's Avatar

    Biopsy

    Procedure or Surgery

    Two doctors attempted to diagnose using just an anoscopy, but it was too painful for me, so they put me out. At that point they were still not certain that it wasn't a hemorrhoid, so the procedure was termed a "possible hemorrhoidectomy or biopsy. After the procedure the doctor told me he had found a mass. It was very painful, especially bowel movements, for about 2 weeks after the procedure, then it improved considerably.

    Went as Expected: Agree
    Minimal Recovery: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  3. 3
    • Pablo
    • Experience with Squamous Cell Carcinoma,...
    almost 7 years ago
    Pablo's Avatar

    Implant chemotherapy port

    Procedure or Surgery

    The implantation of the port was easy with minimal discomfort. I recovered by the same evening. It healed quickly. The only lingering problem was the seat belt rubbing against it while driving (I had it placed on my left side for work-related reasons).

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  4. 4
    • Pablo
    • Experience with Squamous Cell Carcinoma,...
    almost 7 years ago
    Pablo's Avatar

    Radiation and chemotherapy together

    Radiation

    Radiation therapy involved a good deal of preparation in terms of a PET scan, MRI and physics studies since I had intensity modulated radiation therapy, none of which was unpleasant. The treatments themselves, 6 weeks, five days a week, were no problem in and of themselves - 10 minutes at most. I had no discernable side effects for the first four weeks, then it changed. The tumor started to shrink and I felt more comfortable sitting, but I started feeling "sunburned" and eventually developed dermatitis "down under." That was quite unpleasant. Towards the sixth week of treatment and about two weeks thereafter, I was extremely raw. Bowel movements were excruciating and I spent most of my time in bed on my side or my belly. Worse yet were the abdominal cramps from the radiation. Several weeks after treatment that all subsided, but even a year later I still can't handle some foods without cramping (raw nuts, some veggies, popcorn). The radiation also caused some scar tissue on the muscles in my pelvis and groin. That causes no problem if I keep it stretched out with exercise. The most enduring issue from the radiation is anal stenosis (again, scar tissue). This causes multiple bowel movements to get "cleared out" and can cause bleeding from larger stools. Anal dilation is the treatment and has helped, but it's not pleasant. That condition is improving all the time. Despite my oncologist predicting that chemotherapy would be anti-climactic, it was not. I had mitomycin in the infusion center (same day I started radiation); no sweat. That same day they started me on home infusion with 5-fluorouracin from a pump through my port. I managed two days at home, then started feeling tightness in my chest and neck. Turns out that was a rare side effect of 5FU called cardiac vasospasm. I finished out that round of chemo in the hospital so they could monitor my heart. Four weeks later I had the second round of chemo and it went exactly like the first - no sweat at first, finished in the hospital due to the cardiac vasospasm. Checking out my heart for damage, they concluded it was fine and the chemo was the culprit. Just my luck I'd get the rare side effect. Besides the nausea (which was adequately counteracted by other meds), the diarrhea was by far the worst side effect, lasting for about four days after the cycle was over. I also experienced hair thinning but not total loss, absolutely no appetite for about a week after treatment and sores on the sides of my tongue.

    Painless Experience: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  5. 5
    • Pablo
    • Experience with Squamous Cell Carcinoma,...
    almost 7 years ago
    Pablo's Avatar

    Remission

    Celebration

    The PET scan about two months after treatments ended showed the disease had completely resolved. Two CT scans since then showed continued improvement and healing. Looking back to how I felt before treatment and how I'm doing now is like comapring night and day. I'm enjoying life again and all the things I've always enjoyed doing. I've changed my attitude - time is precious, life is precious - don't waste either.

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  6. 6
    • Pablo
    • Experience with Squamous Cell Carcinoma,...
    over 6 years ago
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    Check up

    Celebration

    I finished all my quarterly check-ups yesterday and all were fine. The med onc said one more scan in a few months and that might be the end of scans, though the rad onc thinks one more a year out is necessary. I'd prefer to avoid more radiation exposure from the scanning but I'll let the med onc and the rad onc hash that out. I will still have to have quarterly anoscopies until the two-year mark, but that's not so bad. So far, so good.

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  7. 7
    • Pablo
    • Experience with Squamous Cell Carcinoma,...
    over 6 years ago
    Pablo's Avatar

    Oh No

    I had my third routine follow-up CT scan last week, having finished treatments about 1.5 years ago. The first two were clear; this third one was not. It showed a suspiciously enlarged lymph node that is outside the original treatment area. My rad onc thinks it's a malignancy; my med onc thinks it's just reactive, that is, enlarged because of infection or something else. Both agree a needle biopsy (sounds scary) and a PET scan are required. Ugh. Fingers crossed.

    1 Comment
  8. 8
    • Pablo
    • Experience with Squamous Cell Carcinoma,...
    over 6 years ago
    Pablo's Avatar

    Oh No

    I got the results of my biopsy and PET/CT scan. The suspicious lymph node came back positive. Good news, that one little node was all that was detected; everything else clear. Radiosurgery will take care of it; jury's still out on follow up chemo.

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  9. 9
    • Pablo
    • Experience with Squamous Cell Carcinoma,...
    over 6 years ago
    Pablo's Avatar

    External radiation

    Radiation

    I had three treatments of stereotactic body radiation therapy (also known as Cyberknife) to zap a lymph node that came back positive after a CT and PET scan and biopsy. The most difficult part was lying still for 45 minutes until I fell asleep. MUCH easier than intensity modulated radiation therapy (IMRT).

    Painless Experience: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
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  10. 10
    • Pablo
    • Experience with Squamous Cell Carcinoma,...
    almost 6 years ago
    Pablo's Avatar

    PET scan

    Procedure or Surgery

    PET scan in June 2014 showed Cyberknife zap in March 2014 of affected lymph node was effective, but two new spots were detected. See cooment 1 for this experience for more detail.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    1 Comment
  11. 11
    • Pablo
    • Experience with Squamous Cell Carcinoma,...
    almost 6 years ago
    Pablo's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    I started a new regimen shortly after my last PET scan in June 2014 - carboplatin and paclitaxel (this "cocktail" is commonly called "carbotaxol"). They initially programmed 6 cycles with another check-up PET scan after two cycles. The worst side effects of this chemo have been pretty severe myalgia (muscle and joint pain) for about 5 days after infusion and constipation. With experience I'm figuring out how to minimize these and I can manage to get back to work after about a week. They reinstalled a port in my chest because the infusion in my arms was messing up my veins - good call. The check up PET scan was done this week and showed "no uptake" - meaning the spots previously detected had resolved and nothing new was detected so this chemo regimen appears to be working. Plan is for 2 more cycles, then another PET, then we'll discuss radiation "mop up" of the other lymph nodes in the area.

    Easy to Do: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
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  12. 12
    • Pablo
    • Experience with Squamous Cell Carcinoma,...
    over 5 years ago
    Pablo's Avatar

    Another clear PET scan

    Celebration

    After two more chemo cycles, another PET scan came out clean.

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  13. 13
    • Pablo
    • Experience with Squamous Cell Carcinoma,...
    over 5 years ago
    Pablo's Avatar

    External radiation

    Radiation

    Despite two clear PET scans after four cycles of chemo, the rad onc wants to zap more lymph nodes - 30 treatments over six weeks. I have mixed feelings about this, but I understand the doc's cautious move here. This radiation treatment was completed in December of 2014. The nodes irradiated were in the abdomen. The therapy caused nausea during the treatment period and about a year later abdominal cramps from scar tissue that has since resolved.

    Painless Experience: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Agree
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  14. 14
    • Pablo
    • Experience with Squamous Cell Carcinoma,...
    about 3 years ago
    Pablo's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    In May 2015, a follow up PET scan indicated abdominal and supraclavicular lymph nodes were at it again. I went through 5 more cycles of carbotaxol with the same nasty side effects as last time, plus damage to the cartilage under my kneecaps. I did physical therpay for the knee issue and got a clear PET scan after three cycles of chemo.

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  15. 15
    • Pablo
    • Experience with Squamous Cell Carcinoma,...
    about 3 years ago
    Pablo's Avatar

    External radiation

    Radiation

    A follow up PET scan showed the lymph nodes in the abdomen were still clear in November of 2015, but the supraclavicular (above the collar bone) nodes were affected again. I had radition therapy to the left collar bone/neck from December 2015 through February 2016. Terrible burn, but it healed up well. Also lots of fatigue, but for the most part I could still maintain my daily work routine.

    Painless Experience: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Agree
    1 Comment
  16. 16
    • Pablo
    • Experience with Squamous Cell Carcinoma,...
    about 3 years ago
    Pablo's Avatar

    Drug or Chemo Therapy

    A follow up PET scan to the supraclavicular radition therapy indicated some shrinkage of the nodes there, but the abdominal nodes were affected again and had spread. The carbotaxol had not worked. We moved on to a mixture of irinotecan (chemo typically used for colon cancer) and erbitux (an immunotherapy drug also used for colon cancer). The side effects were a terrible rash (acne) on the face and chest from the erbitux, fatigue and constipation. Also, the previous radiation therapy affected my thyroid function. The therapy was discontinued in August 2016 since a PET scan showed it was ineffective and the disease was progressing. Outlook not good.

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  17. 17
    • Pablo
    • Experience with Squamous Cell Carcinoma,...
    about 3 years ago
    Pablo's Avatar

    Drug or Chemo Therapy

    The progression of the cancer through the abdominal lymph nodes was causing terrible pain and I was very close to going on oxycontin. My med onc heard about a clinical trial that had recently been completed in June 2016 at MD Anderson using Opdivo (nivolumab). She put me on that. For about a month, the lymph nodes swelled up, painfully in the abdomen, visibly up at the neck and collar bone. This is referred to as tumor flare. Opdivo is not chemo, it helps the immune system identify and kill the cancer cells, so the swelling, though uncomfortable, is indicative of the immune response. After about a month, I felt virtually normal. As the chemo effects wore off, I felt stronger and stronger. After about 4 infusions of Opdivo, the swelling was gone, the pain was gone and I felt human again. A PET scan in October of 2016 detected no cancer. Biweekly infusions continued. Another scan in January 2017 was also clear; a scan today (5/11/17) as well. Aside from a little fatigue on infusion day, Opdivo is a wonder drug, and for me, just in time. I hope it continues to do its magic for me.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  18. 18
    • Pablo
    • Experience with Squamous Cell Carcinoma,...
    over 2 years ago
    Pablo's Avatar

    Celebration

    My 4th PET/CT scan since starting immunotherapy 14 months ago again detected no cancer. As usual, there was great anxiety leading up to the scan and huge relief after the result was made known. Comes with the territory, I suppose.

    0 Comments
  19. 19
    • Pablo
    • Experience with Squamous Cell Carcinoma,...
    almost 2 years ago
    Pablo's Avatar

    Oh No

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

    1 Comment
  20. 20
    • Pablo
    • Experience with Squamous Cell Carcinoma,...
    over 1 year ago
    Pablo'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
    1 Comment