My husband was diagnosed with Stage 3 cancer about a year ago. Initially he had a tumor on his tongue. My husband had no risk factors of any kind (never smoked or used any tobacco products, rarely drinks alcohol, same sex partner for 20 years/who has always tested negative for
HPV, and no family HX of any type of Ca) and the tumor was surgically removed in addition to 20 lymph nodes (10-day hospital stay). At the time there was no signs of additional tumors on the CAT or MRI, so the his oncologist did not feel the need for chemo or rad. Approximately 1 month post/op the ENT called and said there was concern because the margins removed were not "large enough" and he wanted to go back in to remove a larger margin. A week prior to this surgery another tumor became apparent posterior to the area of the 1st tumor. This was also excisied (6 day hospital stay). While in the hospital recovering an additional tumor appeared to grow almost over night in his neck at the base of his chin. We were referred to a wonderful surgeon at the U of MD who sent my husband for a PET. The PET revealed the obvious tumor in his neck, and an additonal tumor on the left side of his neck. The report on the last margins revealed non-conforming squamous cells. The decision was made to have a complete neck dissection on the left side, a 50/50 glossectomy with a flap from his left forearm and a vein and artery
donation, chemo (3 treatments of Cisplatin @21 day intervals) and 37 rad treatments with Ethyol administered prior to each session. He had a 14 hour surgery and spent 14 days at the hospital
So there's the nuts and bolts. As it turns out, my husband, who was very active volunteer firefighter in his younger days, was exposed to PCB laden oil during live fire training. There have been a 'cluster' of firefighters in this FD diagnosed with non-conforming squamous cell cancers primarily located in the head, neck, and mouth. Did it cause my husbands cancer - who knows... I'm not going to get into how much this has sucked - I think everyone on this board knows how much this sucks... We're lucky to have really supportive network of friends and co-workers, and are determined to come out on the other side of this stronger in mind and family.
I was so thrilled to find this board (albeit a little late) and learn more about this rotten disease. However, I am looking for information specifically re: swelling of the epiglottis. My husband could swallow just fine post-op in August 2009. From the 1st week of concurrent chemo/rad he lost the ability to swallow. He is now 5 months post treatments, and while he can swallow dry, he can't actually pass anything down. He does still show swelling in his face and neck (that comes in goes in severity), and when he was recently scoped shows swelling of the larynx and epiglottis (with slight epiglottal morbidity). We have been told this is due to the disruption of the flow of lymphatic fluid as a result of the radical neck dissection. Has anyone else had this problem, and if so, what have you done? BCBS FINALLY approved a different PT that involves manually manipulating the stalled fluid in his face and neck, but we haven't been given much else to pin our hopes on beyond that.
Thanks for reading,
Jen
