If they can't find the primary do we radiate?

Liz K.
Liz K. Member Posts: 32
in Head and Neck Cancer #1
I was reading Joel4's comments and they didn't radiate him because they couldn't find a primary. Loal had his neck dissection done last week, because "we want to survive this" but all the samples came back clean. Now what? He has lost his teeth, his feeling in his ear, and he has slurred speech and keeps biting his tongue. Any suggestions please? Do we continue and radiate?

Comments

  • Hondo
    Hondo Member Posts: 6,636 Member
    #2
    Hi Liz

    Sounds to me like you may need a second opinion, but get it from one of the major Cancer institution.

    Hondo
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #3
    Second Opinion
    As HONDO mentioned, I would seek additional opinions to impower yourself in making a more informed decision...

    Best,
    John
  • adventurebob
    adventurebob Member Posts: 691
    #4
    Do you trust your doctor?
    Hi Liz,

    Your last few posts seem to indicate that you don't trust your doctor. Each post has got replies suggesting you get another opinion and certainly from a major cancer treatment center. I haven't read yet that you have done that. If you trust your doctor then you should go with what he advises. If you don't then you should get a second and/or third opinion. There is a lot of experience on this board but as far as I know not a single oncologist. The questions you pose would best be answered by an oncologist that you trust. Of course it is always ok to vent on this board and get our support but it seems like you need professional opinions. I can't recommend strongly enough that you get a second opinion on everything that is going on from a major cancer treatment center. As Hondo will tell you; small town docs make horrible mistakes that cause unneccesary pain and suffering. We're always here for you but we are not oncologist. All my best to you and your family during this time.

    Bob
  • MarineE5
    MarineE5 Member Posts: 1,034 Member
    #5
    Have to agree
    Liz,

    I have to agree with the others that have replied. If you have any doubt about your Doctor, seek another's opinion. Loal and you have to be your own advacates. His life depends on his and your decisions, not the Doctors. The Doctors may have a routine or may be guessing.

    I have mentioned this before. In any classroom, there are those that get A's and then there are those that get C's. Which Doctor do you have? Another way to say it is if you have a problem with your car. You take it to a Shop. You might have the mechanic that starts replacing parts until he finally fixes it, or you get the mechanic that can pin point the problem right away and have you on the road quickly.

    My Best to Both of You and Everyone Here
  • Liz K.
    Liz K. Member Posts: 32
    #6
    MarineE5 said:

    Have to agree
    Liz,

    I have to agree with the others that have replied. If you have any doubt about your Doctor, seek another's opinion. Loal and you have to be your own advacates. His life depends on his and your decisions, not the Doctors. The Doctors may have a routine or may be guessing.

    I have mentioned this before. In any classroom, there are those that get A's and then there are those that get C's. Which Doctor do you have? Another way to say it is if you have a problem with your car. You take it to a Shop. You might have the mechanic that starts replacing parts until he finally fixes it, or you get the mechanic that can pin point the problem right away and have you on the road quickly.

    My Best to Both of You and Everyone Here

    You are all on top of it!
    You are all right. We need to get a second opinion. Mr. Stubborn is sick of being poked and prodded and sliced and diced. But it is an important decision. Thank you, you are all good sounding boards. We do have a Doctor that I don't distrust, but it is hard to understand his broken english, and I'd like too. Thank you everyone, I'll encourage Loal to talk to someone else.
  • miccmill
    miccmill Member Posts: 248
    #7
    Liz K. said:

    You are all on top of it!
    You are all right. We need to get a second opinion. Mr. Stubborn is sick of being poked and prodded and sliced and diced. But it is an important decision. Thank you, you are all good sounding boards. We do have a Doctor that I don't distrust, but it is hard to understand his broken english, and I'd like too. Thank you everyone, I'll encourage Loal to talk to someone else.

    Radiation
    Liz,
    Joel4 didn't have radiation because his staging didn't indicate it. The Cancer Center he and Glenn were treated at (as well as Irishgypsie) uses the National Comprehensive Cancer Network (NCCN) clinical practice guidelines to help determine which course of action to take. They showed us the "algorhythms" and explained everything even giving us copies of the guidelines to keep with our volumes of paperwork.

    It's hard not being able to fully understand the Doc.

    I hope you can get some explanations that make sense to you. Keep asking questions until you get there.

    Good luck.
    Lisa
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #8
    miccmill said:

    Radiation
    Liz,
    Joel4 didn't have radiation because his staging didn't indicate it. The Cancer Center he and Glenn were treated at (as well as Irishgypsie) uses the National Comprehensive Cancer Network (NCCN) clinical practice guidelines to help determine which course of action to take. They showed us the "algorhythms" and explained everything even giving us copies of the guidelines to keep with our volumes of paperwork.

    It's hard not being able to fully understand the Doc.

    I hope you can get some explanations that make sense to you. Keep asking questions until you get there.

    Good luck.
    Lisa

    Yes being poked and prodded sucks.
    It's necessary though. I was also unknown primary. I had a modified radical neck dissection, 23 nodes removed as well as a tumor and my salivary gland. Three nodes positive. I cannot remember my tnmo thinggie, but I was stage iv. I also have an extremely rare blood disorder and it was a very hard decision for me. Geisinger is where I had my neck dissection wanted chemotherapy and rads. I then went to CTCA and they said they would reccomend doing nothing because of my blood disorder the chemotherapy would kill me and the rads could as well and leave me with bad side effects. So then I went to speak to the people who were the tops in my blood disorder. I went to Rockerfeller University, also talked to a hemotologist onc at Sloan Kettering that is tops with my blood disorder. Then went to Cornell to see an ENT and a RO. Poked and prodded to the
    Hilt! Lots of expense out of pocket but I made a decision better informed. Refused chemotherapy had radiation here at Geisinger.

    Make an informed decision that is right for him. Be confident in your doctors and in your state of mind. Attitude is everything!

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