8 weeks post radiation for SCC BOT T1N2aM0 G3 - 03-15-2011 11:13 PM
Not sure why I didn't join when I was first diagnosed but here I am. Now I am faced with another challenge, post radiation neck dissection or not.
here is my story:
I had 60 radiation treaments, twice per day, don't remember the per session dose. Also had cisplatin once each week. I did not get a PEG tube. The week after radiation treatment I went to GI for PEG but was talked out of it. Instead I was hydrated every day for 3 weeks at my oncologist. I didn't eat any food for 3-4 weeks and lost about 30 pounds. I have gained 10 pounds but have limited diet and no desire for food. Everthing tastes salty.
Now 8 weeks out my lymph node has decreased from 4.5 to 1.5cm and ENT wants to do a neck dissection. Even radiation oncologist who fought against dissection now thinks it's the prudent approach. I am hesitant to take on more complications from dissection.
I have no confidence in this ENT and am seeking a second opinion. The ENT was unable to see the primary tumor and was OK to stick with an occult diagnosis. The whole original medical team somehow missed the visual and PET scan indicators. Fortunately I have a friend who is an oncologist and he introduced me to a radiation oncologist who is an expert in head and neck. This doctor read my PET scan and examined my throat and told me he was 80% certain the primary was at base of tongue. He then showed me the PET/CT scan, I had the disk, and pointed out the asymetrical light pattern on the left side of tongue vs the right. Then he called the ENT and instructed him where to biopsy. Sure enough that's where the primary was and it was HPV 16 positive.
So now 8 weeks out, the radiation oncologist thinks the lymph node should be removed. I saw the ENT and had a CAT scan. No surprise the secondary tumor is still present but has shrunk. Surgery is scheduled for April 5, 2011. I asked for a PET scan and that's scheduled for March 21. Second opinion is scheduled for April 8. My guess is the PET scan will show no metabolic activity but since a tumor exists the smart money is on dissection. I was thinking to take a watch and wait approach and not remove the secondary unless a PET showed metabolic activity. But maybe by that time it's too late and that's what the doctor's know.
So I am changing my mind about the neck dissection and thinking that the real problem is no confidence in ENT. Maybe a surgeon who can do a neck dissection in their sleep is better than a part timer.
your thoughts. John
here is my story:
I had 60 radiation treaments, twice per day, don't remember the per session dose. Also had cisplatin once each week. I did not get a PEG tube. The week after radiation treatment I went to GI for PEG but was talked out of it. Instead I was hydrated every day for 3 weeks at my oncologist. I didn't eat any food for 3-4 weeks and lost about 30 pounds. I have gained 10 pounds but have limited diet and no desire for food. Everthing tastes salty.
Now 8 weeks out my lymph node has decreased from 4.5 to 1.5cm and ENT wants to do a neck dissection. Even radiation oncologist who fought against dissection now thinks it's the prudent approach. I am hesitant to take on more complications from dissection.
I have no confidence in this ENT and am seeking a second opinion. The ENT was unable to see the primary tumor and was OK to stick with an occult diagnosis. The whole original medical team somehow missed the visual and PET scan indicators. Fortunately I have a friend who is an oncologist and he introduced me to a radiation oncologist who is an expert in head and neck. This doctor read my PET scan and examined my throat and told me he was 80% certain the primary was at base of tongue. He then showed me the PET/CT scan, I had the disk, and pointed out the asymetrical light pattern on the left side of tongue vs the right. Then he called the ENT and instructed him where to biopsy. Sure enough that's where the primary was and it was HPV 16 positive.
So now 8 weeks out, the radiation oncologist thinks the lymph node should be removed. I saw the ENT and had a CAT scan. No surprise the secondary tumor is still present but has shrunk. Surgery is scheduled for April 5, 2011. I asked for a PET scan and that's scheduled for March 21. Second opinion is scheduled for April 8. My guess is the PET scan will show no metabolic activity but since a tumor exists the smart money is on dissection. I was thinking to take a watch and wait approach and not remove the secondary unless a PET showed metabolic activity. But maybe by that time it's too late and that's what the doctor's know.
So I am changing my mind about the neck dissection and thinking that the real problem is no confidence in ENT. Maybe a surgeon who can do a neck dissection in their sleep is better than a part timer.
your thoughts. John