Medical update, second round of cancer.

 Latest update on the medical front:

I had surgery on a oropharynx sarcoma in November. Prior to my surgery, I was notified by letter that my surgeon was leaving the Wellin Head and Neck Cancer Clinic. I requested that another surgeon be assigned to my surgery. I was thinking ahead to the post operative check-ups and was concerned about someone different having to do the follow-up care. Would rather start fresh with someone new for entire surgical process. But my current surgeon was scheduled to do the procedure. All went well with the surgery and I spent a week in the hospital recovering.

At my post-op exam, a few days after I was discharged from the hospital, My surgeon told me that the margins of the tumor excision area were not clear. This meant that there were cancerous cells around the edges of where the sarcoma was removed. My surgeon said he was moving to the other hospital and was ready to schedule surgery there to remove the remnants "conveniently" left behind(imagine that). The surgeon was upset that I decided to stay with my care team at MUSC.

Side note: A rival hospital in N. Charleston started a cancer care center from scratch. They accomplished this by poaching a large pool of oncology talent from MUSC. My ENT was a part of this pool and was a ringleader in recruiting folks(on the down low) away from MUSC. Not just surgeons, but nurse practitioners, nurses, even receptionists and secretaries resigned and moved en masse to the rival hospital. It was discovered that there was also a clandestine side venture where the departing doctors spent several months copying their patient files as well(HIPAA violations anyone???). Part of the plan seemed to be taking MUSC patients along so there would be a readymade client base for the new cancer center.

Met my new ENT surgeon in December. Young, fresh out of extensive ENT specialty residencies, Dr. Mady was a new hire at MUSC due to the aforementioned exodus. I checked out her credentials(stellar) prior to our appointment and was highly impressed. I was extremely confident in her expertise as a surgeon. The appointment was the most thorough exam I had ever had at the Wellin clinic. After the exam, she said that she would present my case to the Tumor Board. The Tumor Board consists of oncology surgeons, radiation specialists, chemo specialists, immunotherapy specialists, etc. from both the Wellin clinic and the Hollings Cancer Center. The Tumor Board heard my case and decided that I wasn't a candidate for surgery. Thus I needed radiation, chemo and immunotherapy(imagine that). Video meetings were scheduled with radiation and chemo/immunotherapy specialists for the afternoon of 23 December.

Now, first round of cancer(laryngeal) in 2016 led to seven weeks of radiation therapy. Side effects were horrid--seven weeks of hell(extreme fatigue, pain, lost of taste, weight loss, etc.) and over three months before things were almost back to normal. Was told cancer was eradicated. Radiation damage was severe as cancer was only masked. Following year was hell. Asymptomatic before treatments, full-blown throat cancer symptoms afterwards. Over a year later, damage receded enough that cancer could be seen again. Finally diagnosed as recurrence, it resulted in my laryngectomy in 2018. Still dealing with damage from that round of radiation. Major dental issues, radiation fibrosis, the fistula which led to the pectoral flap repair, radiation necrosis, lung nodule, and the list grows each year. Thus, I am not a fan of radiation, which would cause even more and greater damage to my neck structures.

Video meetings started with the radiation specialist. She discussed radiation options. Weeks of daily treatments as before, over a hour drive to the nearest clinic, along with a myriad of horrible side-effects, some possibly life-threatening. I said 'no'. Next meeting was with the chemo/immunotherapy specialist. His resident discussed treatment options with me. Interesting options, but only in conjunction with radiation therapy. He told me that without treatment, I had 1-3 years left to live. Did mention to both that surgery was offered by previous surgeon. Was told I should go to him to get it done. Cast a huge pall over the holiday. Merry fricking Christmas to me!

After the holiday weekend, I reached out to the patient advocate at MUSC as I have before. They had eliminated unnecessary delays in getting my initial surgery scheduled. Explained current situation, the decision of the Tumor Board, the treatment options as presented on 23 Dec, and the fact that my previous surgeon was ready to operate again. They waded into the hospital system for me.

Got a call from my surgeon. She went over the possible risks of surgery and difficulty accessing site. Also presented option of gamma knife treatment. Gamma knife is a megadose of radiation delivered in a tiny beam with surgical precision. I said I would consider the gamma knife is surgery was definitely ruled out. She agreed to do another laryngoscopy/biopsy. This was to access if I would be a candidate for TORS(Transoral Robotic Surgery). A MRI was done to check out the nonvisual extent of the sarcoma remnants. Last Friday, the laryngoscopy was done, officially a suspension microlaryngoscopy(google it, really a fascinating procedure). Afterward, when I read the surgical notes, I finally had a huge glimmer of hope. There I found this statement: Expected return to OR: Yes. Reason for return: further management of disease!!!

Yesterday, I got a call from MUSC. Surgery scheduled for 10 February!!! Yaaaaaaaaaaaaaaaaaaaaaaay!!!