7 months post - what test do you do now?

OKCnative
OKCnative Member Posts: 326 Member
in Head and Neck Cancer #1

I am 7-months post treat for stage 3, HPV+, BOT, SCC. -- I am 100% back to normal. Weight has returned, no fatigue, no lymphedema, and only slight saliva loss.

At 3-months I had a PET scan and the oncologist told me my cancer had metastasized to my heart and lung area. A followup CT scan showed that to be wrong and that what she saw was just infection from something else. The only thing the CT Scan showed was the original neck lymph node was borderline larger than normal and the doc felt it was just scar tissue.

At 6-months I had another CT Scan and it showed everything in my heart and lung area (Thoracic) was clear and that the one lymph node had not gotten larger nor smaller.

Doc says she's not concerned about the lymph node and can't even feel it with her fingers. She said in most cases they just leave it alone.

However, she suggested I get another PET scan "just to be sure." This would be my 3rd PET scan in less than a year. Apparently I have good insurance because they keep approving them.

I'm hesitant to just "do it because the doc says so" for a few reasons;
1.) I'm not big on so much radiation over such a short period of time - 35 rads during treatment, 3 PET scans and 3 CT scans - all within a year.
2.) I have a $10,000 deductible so, depending on where I get the PET scan, it will cost me $900 - $6,000 out of pocket.
3.) My last PET scan seemed like a total waste as they scared the crap out of me and misdiagnosed me.

I know many people rely solely on CT scans, and I can get those for only $230.

My options are;
1.) Get a PET scan at the best price I can (probably $900 out of pocket).
2.) Don't get a PET scan and just keep doing CT scans.
3.) Get a needle biopsy of the neck lymph node (last time they did that my neck got huge for weeks).

Thoughts?

 

Comments

  • bugsyboy
    bugsyboy Member Posts: 39
    edited June 2018 #2
    Second Opinion

    Congratulations on your new normal!  It's been almost four years since my last treatment and I'm also enjoying my new normal.

    I would suggest getting a second opinion.  When first diagnosed here in North Georgia, the docs scared the crap out of us wanting to do everything, including chemo.  We stopped, took a deep breath, researched where to go for Cancer and decided to go to MD Anderson for a second opinion.  It's a decision I'm glad we made.  I'm not saying go to MD Anderson.  I'm suggesting you get a second opinion from a Cancer specialist.

    My Oncologist has never asked that I get a PET Scan.  He relies solely on CT Scans with contrast.  Of course, I get annual exams that include blood work, x-ray, Scan, scope, and his fingers down my throat, but he has never requested a PET Scan.

    Prior to being diagnosed with my HPV+, BOT, SCC, I had swelling in a node and they did a Fine Needle Aspiration (FNA).  It came back negative.  Only after removing the swollen node did the pathology come back positive for Cancer.  So, I do not have a lot of faith in FNA for diagnostic purposes.

    These are my thoughts.  I hope they help in your decision-making process.

    Best of luck.

    Bugsy

  • ProustLover
    ProustLover Member Posts: 120 Member
    #3
    PET versus CT

    It's nice to talk to you directly OKCnative...your info and overall approach have been helpful throughout.  I just posted that my husband's 3-month CT scan (first since radiation and chemo) was good.  When doctor set up the tests, I inquired about PET scan, recalling that several folks on this site had referred to it as the "gold standard".  Our doc, (an experienced and respected doc at respected hospital) let us know that's not what he'd advise.  He said PET scans invariably disclose false and troubling alarms.  He recommended CT scan and CT scan with contrast, with option to conduct PET scan if ANY problem showed up.  I don't beleive his comments were insurance driven. That said, a second opinion can't hurt, for all the reasons you've listed.  These decisions are wrenching...Good luck with whatever you do.  

  • johnsonbl
    johnsonbl Member Posts: 266 Member
    #4
    Skip it.

    I'd watch and wait.  You've passed the magic 6 month window and are only a month out from your chest CT...which would have picked something up if it were doing something in your lungs.  You'll be back at your ENT in 2 months for your 9 month appt.  If there is a change in the node at that point then you can re-evaluate.

    Good luck.

    Brandon

  • donfoo
    donfoo Member Posts: 1,771 Member
    #5
    2nd the 2nd

    Are still with the original team, the one that suggested distant mets? If so, my strond advice would be to find another facility and have them review your entire history and provide a recommendation. You are still early days during the period for recurrence. The official date for cure is 5 years but most all recurrence happens inside of 18-24 months.

  • Andy13460
    Andy13460 Member Posts: 115
    #6

    I got a CT at a Month after treatment, apart from seeing my ENT consultant every 3 months no more scans. 1 year today and next checkup is the end of August maybe she will want a scan then but I dont thik much about it. 

  • OKCnative
    OKCnative Member Posts: 326 Member
    #7
    My gut tells me (which has

    My gut tells me (which has served me very well so far in this battle) to not get the PET scan and to continue going forward with regular in person doctor's visits and routine CT scans.

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