My initial consult with Dr. Steven Chang at Henry Ford Hospital was very thorough and opened my eyes to how difficult my case is and how many different approaches could be taken in resolving it. Everything is at once risky and beneficial, and choosing a treatment strategy involves a pretty daunting set of permutations.
The options break down into three major classes, well known to anyone who has ever approached cancer treatment.
The tumor is deep in the base of the tongue, just to the right of the midline. It has not involved any bone and does not appear to have metastasized. However, due to my narrow mouth opening (trismus) Dr. Chang did not feel that he could properly visualize and clear the margins robotically via the mouth. His only choice would be excision from under the chin, possibly involving a separation of the mandible, followed by flap reconstruction (from thigh or calf) to replace the missing tongue tissue. Due to the amount of tissue lost and the pre-existing damage to the left side of my neck, there would not be enough structure intact to support the larynx, so a laryngectomy (removal of the voice box) and a tracheostomy would be indicated.
At first I was a bit aghast at this, but he explained that it would be advantageous even if there were no cancer involved. First, it would actually improve my speech since I am operating on one vocal cord now and am breathy and unable to complete sentences in one breath. Many patients do quite well on laryngeal prostheses and he would expect a good outcome in my case. Secondly, it would completely separate my breathing from my esophagus thereby eliminating the possibility of aspiration pneumonia, a primary cause of death for people in my condition. (It almost got me once already.) Thirdly, and most exciting, I would recover some swallowing and be able to get off the feeding tube. This would be a major improvement in the quality of my life. He even advised that I might consider having this done even if we don’t do cancer surgery. I contacted Dr. Peter Belafsky at UC Davis with whom I had been working on the Swallow Expansion Device, and asked for his opinion if the procedure for its own sake. His reply: “Yes. I agree that laryngectomy is a very reasonable option and the one I would choose for myself.” That was quite an unexpected endorsement so, we may be looking at that as a separate issue at a later date if we don’t do the resection of the tumor.
Conventional chemo might be an option. But I am being evaluated for a clinical trial for what is termed “targeted therapy.” Here’s a really good fact sheet explaining it. My “Nurse Navigator” at Henry Ford Health Services (HFHS) is currently arranging to have my tissue biopsy sent for testing at Tempus, the primary company developing this treatment modality. If all goes well, I may be enrolled in a clinical trial or, if I qualify, for one of the treatments already approved by the FDA. This is no sure thing, Not every cancer is treatable this way, but we are hoping. This form of treatment is much less debilitating than conventional chemotherapy but does have side effects and risks, Still, I am eagerly hoping that I am a candidate. If this turns out to be the case, we would try this first with surgery as a fall-back plan.
I will be seen by a radiation oncologist at my next set of appointments. There is already significant damege to my neck from the first cancer, so radiation may not be an option. That wouldn’t break my heart.
So I am now scheduled to return to Detroit in a couple of weeks to go over the Tempus results and be seen by both the medical and radiation oncologists. I am also scheduled on Monday to see Dr. Ho-Sheng Lin, chairman of the Otolaryngology Department at Wayne State University School of Medicine/Karmanos Cancer Institute. We hope to have additional light shed on our situation.
I am probably happier than I should be, but I feel that I have that “peace that passes all understanding.” My faith is strong and I know God is in the midst of it all. Thanks for all the prayers and support from all my friends. I literally could not make it without the love I have been shown.