please advise....help!

Folks, I am new here....need help,,

Had a swollen lymph node left side of neck....

After antibiotic treatment for possible infection, no change....

Had chest xray for possible other swollen nodes....no others..

Had swollen node removed....Squamous cell detected....

went for PET scan....found location in left tonsil....nowhere else....when PET was scheduled, surgery with an ENT specialist was planned for various biopsies of tongue, throat, mouth area to help locate source, in case PET showed nothing....

Now that source is known, questioning the need for the different biopsies procedure which is scheduled for this Friday, at a facility that I will not be using for treatment.....I am changing to a better facility for treatment, but can't get in there until after the 3rd of January....

In your opinion, should I go for the biopsies this Friday?

Comments

  • sweetblood22
    sweetblood22 Member Posts: 3,228
    Hi rja
    Sounds like a question best asked to your medical team. I don't know if there can be more than one area of concern or not. If there is, I'd sure want to know about it. Ask your doctor.
  • jim and i
    jim and i Member Posts: 1,788 Member
    I would say no
    Since you know primary and are changing doctors I would not waste the time money and pain. I would wait until I see the new doctor, he/she can always order them if need to have them done. You did not say what size the tumor is but I would think if it was advanced they would have rushed things up. When my husband was diagnosed his was 4 cm and had spread to three nodes. The ENT doctor said be aggresive with getting treatment soon. Everything was done and treatment started within a two week period. Your current doctor does not seem to be in a hurry so I would wait for the new doctor, it is only a week away. Of course I am not a doctor so this is my opinion from my experience.

    Welcome to the fa,ily. So sorry you have a need to be here but you will find a lot of support, info and encouragement here. O know Jim and I would not have survived without the great people on this board. Be sure to visit Dawn's aka Sweetblood's super thread. There is a lot of good stuff on there.

    Praying for you and your family.

    Debbie
  • ratface
    ratface Member Posts: 1,337 Member
    jim and i said:

    I would say no
    Since you know primary and are changing doctors I would not waste the time money and pain. I would wait until I see the new doctor, he/she can always order them if need to have them done. You did not say what size the tumor is but I would think if it was advanced they would have rushed things up. When my husband was diagnosed his was 4 cm and had spread to three nodes. The ENT doctor said be aggresive with getting treatment soon. Everything was done and treatment started within a two week period. Your current doctor does not seem to be in a hurry so I would wait for the new doctor, it is only a week away. Of course I am not a doctor so this is my opinion from my experience.

    Welcome to the fa,ily. So sorry you have a need to be here but you will find a lot of support, info and encouragement here. O know Jim and I would not have survived without the great people on this board. Be sure to visit Dawn's aka Sweetblood's super thread. There is a lot of good stuff on there.

    Praying for you and your family.

    Debbie

    I wouldn't go either
    Different facilities have different capabilities. Different surgeons have different techniques. Let the Dr. who is taking you to the dance be the hands on guy/girl and get first hand experience with your cancer. The 3rd of January is only six days and a wake up away. Use the time to collect all reports and copies of CD's and don't fret any more over this as it's no longer efficient to waste time at your current facility. You have made good decisions up to now. Trust yourself and move forward. Best in your upcoming treatment.
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    Biopsies, no....
    Tonsillectomy, maybe. That's the issue. You already have a tissue diagnosis, and the primary identified. You will eventually be offered radiation for curative treatment. The issue is to do a tonsillectomy, and whether that is done before or waits till later discussion. But the way you phrased your original post, it sounds like the biopsies were entertained only in the event the PET scan failed to reveal the primary. Not certain from what was said if that plan has been modified by the original physician in light of the PET findings.

    No matter what, you are on the right path.

    Best.
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    Biopsies, no....
    Tonsillectomy, maybe. That's the issue. You already have a tissue diagnosis, and the primary identified. You will eventually be offered radiation for curative treatment. The issue is to do a tonsillectomy, and whether that is done before or waits till later discussion. But the way you phrased your original post, it sounds like the biopsies were entertained only in the event the PET scan failed to reveal the primary. Not certain from what was said if that plan has been modified by the original physician in light of the PET findings.

    No matter what, you are on the right path.

    Best.
  • jtl
    jtl Member Posts: 456
    Short Version
    I had a similar experience and there is no reason to do any more biopsies once the primary is found.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Totally Agree ~ Long Version
    I totally agree with LTS, in my personal and unprofessional opinion, what's the point. You have already been diagnosed, and if nothing other than the tonsils are lighting up....

    I had a similar start and Dx as you, antibiotics, nothing changed.

    Went in to see my ENT whom is and has always been the lead for my team. He did a CT that day (Friday - January 2, 2009), had me come back to his office that same day, and told me he was 90%+ sure it was SCC. Having not been a tobacco user, it was more than likely HPV+ derived.

    I also had a lymphnode affected that he was origianlly going to do a FNA on.

    That following Monday, January 5th, he took the tonsils out, did a quick biopsy and confirmed STGIII SCC.

    He had me scheduled for a PET after surgery, before setting up any further treatment plan. All clear other than residual from the tonsil area and the lymnode were lit up.

    When I saw him next we went over his plan (sixteen weeks of chemo, seven of those would be concurrent with daily rads).

    I asked him about the FNA on the lymhnode and he told me basically what LTS said, "what's the point". He had already determined that the tonsils were my primary, lymhnode the secondary. He explained abut nothing additioanlly lit up from the initial PET.

    Between the tonsils removed, concurrent chemo/radiation for the specific area, which also hit the surrounding area of the tonsils on both sides, and initial nine weeks of Cisplatin, Taxotere and 5FU for cleanup of any floaters...there was nothing more specific at that time to concentrate on.

    In my case it was a great diagnosis, even to the point of a few weeks later, the tonsil tissue confirming HPV+.

    Follow-up with the originaly MD and see if his plans are to still pursue additional biopsy and of what importance or information he is additionally seeking?

    BTW, welcome to the forum, great people here....

    Here's a thread that has tons of info that you may find useful also...our own little SuperThread for newbies.

    SuperThread

    Best,
    John
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    No
    no, since your going to a new doctor that your feel is at a better facility, i would wait for his advice.

    also, if radiation is part of your treatment, i suggest that you make sure they have tomotherapy radiation. this would help reduce some of the short and long term side effects.

    john
  • Greend
    Greend Member Posts: 678
    fisrpotpe said:

    No
    no, since your going to a new doctor that your feel is at a better facility, i would wait for his advice.

    also, if radiation is part of your treatment, i suggest that you make sure they have tomotherapy radiation. this would help reduce some of the short and long term side effects.

    john

    Dittos
    I wouldn't and Jan 3rd is not that far out.
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    rja
    Reckon I agree with the others about waiting for the biopsies, if necessary, because you are going to a different facility. HOWEVER- must ask if you are keeping the same ENT Dr, and if that Dr is the one who removed the swollen lymph? Second opinions are one thing, but I do consider it critical that you have a team that stays with you from the start to the end of treatment. So, are you going to a different ENT? If so- yes, let that new ENT take charge and assemble the team that's gonna help you knock the C out of your life.

    kcass