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DC-Wolverine's Recent CancerCompass Activity

  • DC-Wolverine has created a new message board discussion

    Hi Everybody! I'm 48, 3.5 years out of treatment for HPV+ squamos cell carcinoma with primary on right tonsil and spread to lymph nodes in neck. Surgery + radiation. I recently exited a monogamous relationship that pre-dated my cancer diagnosis.As I begin dating again, I find myself anxious about risks of giving someone else HPV or exposing myself to HPV. I realize I don't really know what the risks are at this poi...

    June 06 at 6:57 PM view discussion
    • DC-Wolverine has replied to a post on the message board

      Hi Susan, My last CT scan was in April, endoscopy in July - neither showed anything. My next CT scan is scheduled for October. The resident doctor who shared the MRI results with me did make the point that an MRI and CT scan are not apples-to-apples comparisons. Trying to make an appointment for next week - the oncologist and surgeon's staffs are checking their schedules and asking me to coordinate between the two,...

      September 13, 2017 view post
      • DC-Wolverine has replied to a post on the message board

        I hear you DJ. The doctor who diagnosed me basically said I probably got HPV 20-25 years ago from a girlfriend. I'm grateful my two children are able to get vaccinated so they will never be at risk of getting an HPV-related cancer.

        September 12, 2017 view post
        • DC-Wolverine has replied to a post on the message board

          Is it difficult because you are in pain? Are the doctors giving you pain meds like gabapentin and oxycodone? My doctor's goal was to control the pain so I could keep eating and avoid the PEG. I know there are many advocates for the PEG on this board, so you should be fine either way. But I was grateful to have avoided it. I did lose about 20 lbs - about 13% of my weight.

          September 12, 2017 view post
          • DC-Wolverine has replied to a post on the message board

            You can do it! You will do it! I remember how difficult it was, and you will keep cooking for a few weeks after the radiation treatments end. Are you losing your facial hair yet? In addition to Ensure, see if you can get down some nutrient and protein-rich smoothies. When I lost all my tastebuds and appetite, I could still taste the peanut butter in my smoothies. Try one with greek yogurt, kale/spinach or chard, p...

            September 12, 2017 view post
            • DC-Wolverine has replied to a post on the message board

              How are things going Reissens? Marc

              September 12, 2017 view post
              • DC-Wolverine has replied to a post on the message board

                Thanks, Susan, Johnny and Ann! They finally posted the formal test result to my online portal. Here is the specific language: "Asymmetric soft tissue prominence enhancement involving in the right lateral mucosa of the inferior nasopharynx with posterior medial extension just across midline. Inferior extension of enhancement along the lateral pharyngeal wall to the level of the oropharynx . Findings are concerning ...

                September 12, 2017 view post
                • DC-Wolverine has replied to a post on the message board

                  Hi Diane, I'm 47 and I had HPV+ squamos cell carcinoma with primary on right tonsil and spread to lymph nodes where they found traces of the cancer (by testing samples during surgery) in 3-4 nodes. I was treated with Surgery and RT. But I had another hospital that wanted to do Chemo and then Surgery. I chose the former, because it was a top 10 cancer hospital in the U.S. (Hopkins in Baltimore), and traditional appro...

                  September 11, 2017 view post
                  • DC-Wolverine has replied to a post on the message board

                    Thanks DJ! That is comforting to hear. I hope it will be the same in my case. Given my profile, a recurrence is very statistically improbable, but not impossible. I don't want to be that 1 in 25 or 1 in 50, who had HPV+ SCC and has a recurrence 18+ months out of treatment. Marc

                    September 11, 2017 view post
                    • DC-Wolverine has replied to a post on the message board

                      Hi Ann & John, I'm not sure if we ever met on the other threads. I finished treatment for HPV+ SCC right tonsil/lymph nodes in January 2016. Neck dissection, tonsillectomy, 6 weeks radiation. Have been doing well with NED for 20 months but a recent MRI showed an "area of concern" they want me to come in and take a closer look at in the coming weeks. Fingers crossed it's just scar tissue near the treatment area....

                      September 10, 2017 view post
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                      About DC-Wolverine

                      Patient
                      Head and Neck Cancer, Oral Cancer, Pharyngeal Cancer, Squamous Cell Carcinoma, Tonsils Cancer
                      After Treatment, Cancer Nutrition, Emotional Support, Radiation

                      I am a 45 yr old male who completed treatment for HPV+ SCC neck cancer on 1/12/16. I had TORS surgery to remove both tonsils, including a small primary tumor on my right tonsil, and a neck dissection to remove several lymph nodes. I then completed 6 weeks of radiation therapy. I received treatment at Johns Hopkins in Baltimore.

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