Day +661: I must be one of the wonders of god’s own creation…

“Doctors have come from distant cities just to see me.”

9/21/12: Wow, what an experience today, and I mean that in a positive way. We arrived a little early and didn’t have time to settle into a chair in the waiting room before the nurse took me in to check my vitals. She handed me paperwork to complete but before I could finish line one, the first doctor was in to see me. She said not to worry about the paperwork – she’d rather ask the questions in person anyway.

She talked a lot about HPV+ and why that’s good – it has a much higher cure rate than non-HPV related cancers. In answer to the earlier questions, it is very unlikely to be related to my MDS, transplant, chemo, prior smoking and family histories, or the original benign parotid tumor that indirectly led to my MDS diagnosis. Although my weakened immune system may have left me somewhat more vulnerable, HPV+ oropharyngeal cancers apparently arise with at least equal frequency in those with no predisposing factors. There are more than 100 strains of HPV and more than half the population have probably had an HPV infection. However, only a very small percentage of the strains are potentially cancer causing. Among the people who contract the dangerous strains, fewer yet eventually devlop cancer. The virus can also lie dormant for decades and never cause any problem. Fortunately, there is a vaccine available now to help prevent infection. If your teenage children haven’t been vaccinated already, it’s worth getting done.

I asked about the lymph node involvement on both sides with such a small base of tongue (bot) tumor. She said they actually see that pretty often because the tongue is so vascular. 

She escorted me to another room where a resident numbed my nose in preparation for the camera to be threaded through (yuck again). After a short wait, the room was literally filled with doctors and a couple of students – I believe there were 10 in all, not including Michael and me, in an average size examination room. They all introduced themselves and most said they’d also attended the big tumor board meeting yesterday where my case was presented by both my surgeon and other surgeon I’d consulted. All eyes were on the image of my throat and tongue on the screen. I had another thorough examination of my mouth and ears, too, and did some swallowing tests with dyed applesauce.

The radiation oncologist was the lead today – I expected him to talk to me about radiation treatments and effects but instead he and the others all concurred excitedly that I was an ideal candidate for TORS (robotic surgery). Down to the last one, they were all extremely optimistic about my prognosis because the cancer is HPV+ and has apparently been detected very early compared to usual bot. They praised my local ENT highly for following up on something for which many others might have taken a “wait and see” approach. 

I joked with the radiology oncologist that I was shocked he didn’t want to do radiation and with the medical oncologist that she didn’t want to do chemo and told them I expected everyone to advocate their own specialty. The surgeon spoke up with a grin, “Well, I still want to operate!” 

They want to avoid or minimize radiation and chemo due to my past history. They’re going to determine that after my surgery which will be scheduled asap. Realistically, that may be as long as 4 weeks from now to find me a slot where both my surgeon and the robot are available, the downside to going to a busy high tech hospital. I was forewarned that I’ll be miserable post surgery but should heal well. The surgeon promised me the sorest throat I’ve ever had. I told him that would be a challenge since I had severe mucositis with the transplant. The first week post-surgery should be the worst.

A few weeks after the TORS, they’ll do a neck dissection (removal of lymph nodes), the extent of which is still to be determined. This cannot be done with a robot. After the biopsy of the nodes they remove, they’ll determine if I should get a low dose of radiation for extra insurance.

At the end of today’s session, even my stressed and pessimistic by nature husband was feeling better about my future. He assured me that yes, the doctors really were genuinely excited and optimistic – it was NOT just me grasping at straws and seeing something hopeful that wasn’t there. 

I worry that the treatment might not be aggressive enough but I at least feel comfortable with my team and their competence and combined years of experience in a great cross-section of disciplines. I’m lucky to live so close to a top comprehensive cancer center. I don’t think I could be in better hands. I’m also an “interesting case” because of my transplant and gvhd so am getting more attention from more people than usual. I would rather be ordinary medically but the extra interest and attention is a good thing, I think.

We were done in time to have the lunch buffet at our favorite Indian restaurant and ice cream at Dairy Queen on the way home.

I’ll identify all of the recent taglines next post. In the meantime, I’m hoping to see some IDs or at least guesses. Remember, there’s no such thing as cheating in this game. All sources are legal.

8 Comments:

  1. Natalie Merchant, Wonder. 🙂
    I think you got some great news from the doctors. Things are looking up. And I think being a medical wonder is good news. That means lots of second opinions. 🙂

  2. wow. that seemed so great with all your doctors. mine seem put out when ever i ask a question about anything….what does that mean or why do I need this…..great great great great karen …and mike!!! good wishes and prayers…xo

  3. I am very glad they are taking such a multi-disciplinary approach. The robotics surgery sounds very interesting. I saw a demo Thursday night of that type of equipment.

  4. Sounds like great news and so happy they have many minds focusing on you for the best outcome. Thanks for sharing the news, I bet you are having a better weekend.
    Big hugs to you both,
    Deb

  5. Thinking of you karen!!!

  6. Wow — even though you are going through this trying time – things seem to be looking up! I am glad that you have such a competant team dedicated to your health!! You are such a trooper! I have no doubt you will take this road bump in stride and beat it once again! Very proud of you and Mike! Thinking about you guys!

  7. All sounds great to me! I really think they need to make a movie of your experiences. You have documented everything very well and would make a great actress. 🙂

    Very good Leslie. I looked it up. Did you?

  8. Good song pick! Excited doctors are definitely better than apathetic ones. You can now literally become a textbook case!

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