| | Joined: Jul 2013 Posts: 114 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Jul 2013 Posts: 114 | I just received the pet scan results. I have been experiencing pain in the right BOT for 6 months now. I had my tonsils removed along with a couple small biopsies ( one on each side of tongue) The PET indicated an uptake of 4.1 on BOT. It's been 2 1/2 months since biopsy. The doctor says not to worry about this number since I had biopsy. However, you would think the tonsils would have showed inflammation also? I'm still having tongue pain and throat soreness. Should I be satisfied with these results? I know nothing about these numbers. Please help
Thanks for your help!
Last edited by portland72; 09-13-2013 02:35 PM.
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | Any SUV uptake is above 2.0 is suspicious for cancer, but still doesn't mean it is. It could be from an infection, inflammation, necrosis, surgery, talking, swallowing, etc, but still needs to be proven it is cancer or ruled out it's not, and a biopsy was done of the BOT. One time I had SUV uptake around 1.8 and it was cancerous, and the size may factor in SUV uptake. My last was like 4.5, and was 3x7mm cancerous node. which is surprising the scan picked it up, but PET/CT can pick up less than 5mm. If your doctor says not to worry, believe you had other tests too, so I don't know what else to add.
Usually they list the findings, and impression on the PE/CT report saying what it may be from, like it's reactive, possible malignancy, etc.
Good luck.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Jul 2013 Posts: 114 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Jul 2013 Posts: 114 | PaulB,
Thank you for responding. I have had several test including two CT's whic showed nothing significant, a tonsillectomy, and two biopsies. The PET/CT stated that there was asymmetry at the base of tongue, but said they saw no mass. I understand that imflammation could show up after biopsy, but it's just strange that the only intake that showed up was the one place that I have been complaining with for 8 months now and also is the same side that has been swollen for 8 months. It's just so frustrating with my symptoms.
How were your cancers measured? By scans?
The doctor is concerned and said we will discuss biopsy, but thinks everything is ok.
Thank you for responding. The people on this website are truly special and you are all in my thoughts. | | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | Yes by PET/CT and by Ultrasound. Good luck.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Sep 2013 Posts: 17 Member | | Member
Joined: Sep 2013 Posts: 17 | My understanding is that the most definitive way of diagnosing cancer is with a biopsy. Having said that, CT and PET can help the doctor to know where to take the biopsies. If he recommends more biopsies after the PET I would get them done. They are fairly easy and cheap unless he has to put you out for them.
In 1994 I found a 3cm tumor on my right tonsil. After 3 rounds of chemo, I underwent a radical neck dissection with a peck flap. I had a reoccurance which required twice a day radiation treatments and then had 19 years cancer free. I then found a very small tumor on my right tonsil. It was removed. Then I found a 1 cm mass near the base of my tongue on the left side. I had two partial glossectomys with bad margins and then then underwent Brachytherapy.
| | | | | Joined: Jul 2013 Posts: 114 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Jul 2013 Posts: 114 | PaulB,
Thank you for responding. I have had several test including two CT's whic showed nothing significant, a tonsillectomy, and two biopsies. The PET/CT stated that there was asymmetry at the base of tongue, but said they saw no mass. I understand that imflammation could show up after biopsy, but it's just strange that the only intake that showed up was the one place that I have been complaining with for 8 months now and also is the same side that has been swollen for 8 months. It's just so frustrating with my symptoms.
How were your cancers measured? By scans?
The doctor is concerned and said we will discuss biopsy, but thinks everything is ok.
Thank you for responding. The people on this website are truly special and you are all in my thoughts. | | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | Yes. It was measured by the PET/CT scan, and I guess with the ultra sound also for the FNAB.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Mar 2013 Posts: 14 Member | | Member
Joined: Mar 2013 Posts: 14 | Portland,
I'm not sure what brought me back to this site, but saw your post and thought I'd chime in, for what it's worth. I have had what I would call a pain/itching BOT since probably March. I had some visible swelling of the base of the tongue and a biopsy that came back as lymphatic hyperplasia, so basically swollen lingual tissue. I also had a ct scan that showed mild asymetrical swelling of the BOT with no mass. My ENT and I finally ran out of ideas other than I should go see an allergist. Well I never saw one, but instead have been trying to pinpoint the allergy ever since. I actually feel like it might be an allergy because it comes and goes and like I said mine is more of an itchiness right in the back right sode of my tongue. The swelling has never increased to more than the original size and nothing else has popped up in my head or neck area in 6 months so I have began to put the idea that it is something more sinister out of my head.
NOT saying that you should do that, but have you considered allergies causing your lingual swelling? I am also only 26 so I guess if I was 20-30 years older I'd be more worried about it being cancer even though I know it can strike at any age. Again not saying to ignore it, but might want to see if anything you are eating or drinking might be causing it. Perhaps acid reflux or post nasal drip as well.
Last edited by Shane's; 09-16-2013 03:03 PM.
| | | | | Joined: Jul 2013 Posts: 114 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Jul 2013 Posts: 114 | Shane,
I have only one side of BOT swollen and I have already been allergy tested and scoped by gastro doctor as well as wearing the reflux monitor that showed no reflux. Is your lingual tonsils swollen on just one side? Thank you for your kind reply,
Portland | | | | | Joined: Mar 2013 Posts: 14 Member | | Member
Joined: Mar 2013 Posts: 14 | | | |
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