i need information about the effects of radiation

Sounds like you need straight answers from an expert.  If you cannot get them from the oncology  team you are seeing, then it is appropriate to seek a second opinion.  As complex as his situation is, that should be from a major referral center.   You also have to have a set of priorities.  If he has metastatic disease and is entering chemotherapy for a second series of treatments, the swallowing/PEG tube thing is not the top priority right now.  The extent of the disease and its present and future treatment is.   You should table some of this, as the big picture is completely overwhelming at the moment.   It is true that NPC is not really common, but there are others at the site who have it, I am sure given time they will show up to help advise you.

To specifically answer the treatment of over radiation, no he wasn't over radiated.  These are difficult cancers.  The amount of radiation required to cure a substantial portion of people who have the cancer is high enough that the compication rate is pretty darn high.  There are many others who are in the same boat as he is with esophageal strictures.

best to both of you

pat

Did you get treated local or go to a major center that has tumor boards? If you went the local Dr. you might get a second opnion at a major center. There are others here that have had that type of cancer or at least have more knokedge then I do. Mine was larynx cancer. Welcome to the group and the best suport group I have found.

wmc

 Susyq7

  So sorry to hear of your husband's journey. As a 5+-year survivor of NPC, unknown Primary, several things kinda stand out as noteworthy to me. 

  I rejected my first ENT Dr because he said the first thing he would do is put in a trachea, which I was very familiar with from my youth. The second ENT Dr agreed with me, and I never did get a trachea tube installed. I have recently burnt the bridge between my Rad Dr and me, because she refuses to accept that rads damage teeth- I think the rads did a number on my protective enamel on my teeth, which has led to over $13K in Dental bills for me, post-tx. I tell you these two things to highlight that just cause they are Drs with medical degrees, they can be very wrong.

  I think it's safe to say your Primary Dr fumbled the ball right from the get-go. Strep throat? My two nodes became enlarged, and within a week after I showed my Dr I was at the ENT Drs. Two weeks later came the surgical biopsy with my 2nd ENT Dr, and it came back Positive for NPC. 5 weeks later, with Port and Peg installed, I started tx. And your Dr was treating him with antibiotics for two months? I know this is hindsight blame game, but it is for your understanding of why your husband finds himself where he is.

   Concurrent chemo and rads is the best way to attack NPC, and I did not see you tell if that was done. Some start with just chemo for a couple months, then rads and less chemo. I got the full dose of both right from the start.

   Going forward Susyq7: you have to get him to the nearest large C Center. For me, in the midwest, I would go to the U of Iowa or maybe Northwestern or the U of Chicago in Chicago. MD Anderson is #1, but Mayo's isn't far behind. Google it, and you will find the place best for you, or tell us where you are and someone will give you the answer on where to go. Stay with us, and keep us informed.

kcass 

susyq7 said:

Fumble fumble

Hindsight is 20/20 for us. The first signs of trouble started in mid Nov of 2012. When anitbiotics didn't work the primary did surgery and the c word appeared around mid Jan.  So it was around 7 weeks from strep to c.Pet scan and the first chemo was in late Feb. Peg and port were put in and chemo first and then chemo and radiation.  Yes they started him on chemo and then added radiation. We thought the swelling was from a cold he had recently battled. When Dr said strep throat it seemed logical.   When second round of meds didn't work we knew something was wrong. More neck nodes were swelling. He had no pain but we knew something was wrong. We never dreamed it would be c. I would advise anyone to see dr as soon as nodes swell and don't respond within a week to meds. We signed with a HMO and they won't pay for his meds half the time.  He has to take all his meds through tube,crushed and liquified, and a recent mistake cost us $300 out of pocket. The time release meds couldn't be broken or crushed and I didn't discover this until we got meds home. Pharmacy isn't at fault cause Dr didn't put that meds were to be taken peg. Fumble again and I know you can guess who got the penalty!! Ins has to preapprove every move we make and they don't get in any hurry. I get frantic just telling this. I've not talked about any of this to anyone and reading what I have written terrifies me because this is just half the nightmare...Thank you . I will Google for best place in area and try again. Thank you again

Without a map, not sure what major cancer center is near you in TN. John Skiffin checked in and the name of the procedure he had was the "Whipple", I couldn't think of it in my earlier post. Not sure if it is even a consideration for your husband's situation. I consulted both Mayo in Rochester MN and MD Anderson in Houston. If you go to the websites just look for the "appointment phone number". Actually, all of my records were sent to both Mayo & MDA and, while I never traveled to MDA, they consulted with Mayo to determine who could best tackle my issue. Mayo had all of my records and told me they could help before I traveled. I think there is also a Mayo in northen Florida. Are these tumors something that can be tackled with percise radiation? My brother was treated at Mayo and when he told his doctor about me, he replied "don't let anyone tell her she can't be radiated more than once". I had SBRT but considered proton therapy as well. Sorry you got burned with the time release drugs issue.  I would try an appeal since HMO would have been aware of PEG. Worth a try. Ask your HMO which major cancer centers are part of their system. 

There are many of us here who have had the same type of C and some more than once. The best advice I can give you is what Kent already said, Get Him to one of the Major Cancer Institution. Do not waste your time and his life at some local city cancer place where they know nothing about NPC cancer. I am right at 12 years passed my first treatment for NPC and 10 years passed my second, I live with a lot of side effects but I still live. Right now worry about getting him to the right place for treatment, is you can do Proton treatment it will have the lease side effects.

Wishing you both the best and Welcome to the family here on CSN H&N

Hondo