#29717 12-14-2007 02:11 PM | Joined: Aug 2007 Posts: 32 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Aug 2007 Posts: 32 | In January I finished radiation and chemotherapy for Stage II base of tongue cancer. My PET scan 3 months later was fine. Now the PET scan at the end of November is showing activity at the bot. I had an MIR, with "vague" findings. Saw the ENT specialist today, and he can't see or feel anything. Next week it's back to the oncologist to see if I just wait a while and get more scans, or they do a "blind biopsy" on something they can't see.
Of course I've been very worried about all this since I got the news. Is it just a false positive or the very beginning of a reoccurance? I have confidence that the doctors are on the right path, but I'm worried about what they may find. And what the treatment might be. Anyone have PET scan false positives?
Stage III BOT, 14 weeks chemotherapy, 7 weeks IMRT. Finished treatment Jan. 2007.
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#29718 12-14-2007 06:18 PM | Joined: Feb 2004 Posts: 598 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2004 Posts: 598 | Ron --
I had false positives with my PET in October. It showed 3 lymph nodes lighting up, but surgeon and RO at the time said that it was probably nothing. PET 10 days ago was fine.
There are so many things that can cause some activity to show up on PET, from exercise the day before the exam, to sugar intake, inflammation, etc.
You are doing the right thing by getting it fully checked out. If it is recurrence, it is very, very early, giving them the most treatment options. If it isn't, then you have gone through a whole lot of anxiety, but the end result is fine.
There are lots of threads on here on PET validity, false positives, etc. They are a real double edged sword -- a negative finding is great, and a positive finding may not mean much, but causes a lot of angst in the meantime. That is why you will read lots of divergent opinions on if and when to use PET or PET/CT. We will all keep a good thought for you. Jeff SCC Right BOT Dx 3/28/2007 T2N2a M0G1,Stage IVa Bilateral Neck Dissection 4/11/2007 39 x IMRT, 8 x Cisplatin Ended 7/11/07 Complete response to treatment so far!!
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#29719 12-15-2007 12:53 AM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Ron,
Unfortunately we all have to deal with scans that are remarkable post Tx , I had 2, but a large % resolve themselves. That said, but you still must follow through and make sure they do resolve themselves.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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#29720 12-15-2007 02:46 AM | Joined: Aug 2007 Posts: 32 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Aug 2007 Posts: 32 | Thanks for the replies. I guess the worries come with the territory. I have to try to learn to put them aside for the moment. Certainly a good life lesson to learn. And I will continue with my doctors to find out what is going on.
Stage III BOT, 14 weeks chemotherapy, 7 weeks IMRT. Finished treatment Jan. 2007.
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#29721 12-16-2007 03:20 AM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | Hi Ron,
Where I you being treated? I go to Fox Chase.
Good luck with your visit to the oncologist.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
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#29722 12-16-2007 11:02 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | Hi Ron,
I go to HUP. Here's hoping it's a false positive. Keep us posted.
Take care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#29723 12-16-2007 04:55 PM | Joined: Aug 2007 Posts: 32 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Aug 2007 Posts: 32 | Hi Jerry and Eileen,
I go to Delaware County Memorial Hospital in Upper Darby. Their cancer center is part of the Fox Chase partnership.
I hope to know more Friday when I see the oncologist. I'll post back. Thanks for the encouraging words.
Ron
Stage III BOT, 14 weeks chemotherapy, 7 weeks IMRT. Finished treatment Jan. 2007.
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#29724 12-17-2007 09:33 AM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | Ron,
Good luck Friday. I wasn't aware of Fox Chase's association with your hospital. I'm sure you're in good hands.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
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#29725 12-25-2007 01:39 AM | Joined: Aug 2007 Posts: 32 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Aug 2007 Posts: 32 | Hello Everyone,
Had my Oncology appointment on Friday and went over the MRI and ENT exam results. The MRI shows something "vague" at bot. And the ENT doctor doesn't see anything there. So it's wait another month and then get an MRI again.
As there is not going to be a quick answer, I've been trying to put all this aside for now and enjoy the holidays.
Everyone have a happy holiday and New Year.
Ron
Stage III BOT, 14 weeks chemotherapy, 7 weeks IMRT. Finished treatment Jan. 2007.
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#29726 12-25-2007 02:16 AM | Joined: May 2007 Posts: 632 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: May 2007 Posts: 632 | Sounds like the sensible thing to do Ron! Have forced myself to keep my hands 'off' my lumps today--they aint going away, but today, I don't need to know if they are growing either! Enjoy your holiday!
Brenda
Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4 6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine therapy September 07 Now dying to live!
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