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#74109 05-08-2008 08:28 AM
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TomK Offline OP
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On Tuesday April 29th I went in for a PET scan which was ordered by my RO for no specific reason, just a check up. My ENT said he wasn't going to order any scans and just follow me clinically. On Tuesday May 6th I had my appointment with my ENT and he reviewed the results of the PET scan. At my last PET scan which was at 12 weeks post treatment I had two areas of uptake on my tongue and one in a node on my neck. At that time he biopsied one area on my tongue and it came back negative. Now for the current results. One uptake on my tongue decreased from an SUV of 7.5 to 3.7. The other uptake on my tongue decreased from an SUV of 5.2 to 3.4. The uptake in my node decreased from an SUV of 2.9 to 1.6. So all of my uptakes decreased. I was hoping for an all clear. My ENT was not overly concerned and still wanted to watch it clinically. I meet with him again in 6 weeks.

With me being 8 months out from treatment, is it normal to still have uptake activity? Is the healing process still going on inside from the chemo and radiation? Otherwise I am feeling great. A couple of months ago I started running and now I am up to 3 times a week at 4 miles a run. Could this contribute to the uptake activity?



Tom
SCC T4N1M0 left side tongue & 1 node
Dx 05/21/07 42 yrs old
40 Tx IMRT @ 70 Gy started 06/25/07
Cysplatin & 5fu 1st & 4th wks
treatment ended 08/23/07
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I was told that anything 3.0 or less they don't even consider cancer and I believe (??) I was told the scale runs up to 25 so I would think your numbers are in the good to great range but I would ask your RO to give you his/her opinion. Worrying about this crap is just as bad as the crap itself.


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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Tom, My experience is that I have had areas of slightly raised uptake in my PET scans that were done a year and 1/2 out and two and 1/2 years out.My understanding is it can be from scar tissue that gets stretched daily and can continue or get slightly worse over time if fibrosis continues to form or gets worse(which it can). In addition I still have chronicaly inflamed areas of my mouth which I know must show up as not totally normal on the PET, but I assume they do not change or maybe have decresed enough over time that my ENT thinks all in all things are OK.

Quite honestly, PETS can give a lot of false alarms and the last time I had one (a few months ago) I did NOT ask to see the radiologists report, I just took my ENT's word that overall everything looked OK because the one the year before had a report that would have been quite scary had not my ENT scoped me and done a thorough exame and told me it was really nothing to worry about before I read it.

As David said, my MO told me that SUV values can run much higher than single digits and that soemthing that's clearly cancer will not have a value of just over 3 but a much higher value. Its just that the people who read the PETS have to mention anything around a 3 just to cover their a--es as being a possible recurrence of cancer. So the reports can be scary to read unless you are a doctor with some knowledge.

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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I also had a positive pet scan about 9 months after treatment ended, a reading a little above 3. My Oncologist said it could just be scar tissue. He sent me to the ENT doctor and for an MRI, neither showing anything. He then said it most likely nothing to be concerned about. Now, 6 months later I'm scheduled for follow up scans.

About your jogging, when I go for the PET scans, the technician always asks if I've exercised in the last 24 hours. Apparently, recent physical activity can have some effect on the results. Something to ask about.


Stage III BOT, 14 weeks chemotherapy, 7 weeks IMRT. Finished treatment Jan. 2007.
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I echo what has been said above. I made the mistake of getting my first PET report before seeing the doctor (this was about 3 months post treatment) -- I thought I was doomed. Went to see my ENT/Oncologist and he said nothing to worry about, RO and MO said the same thing. Repeat scan at 5 months showed much like yours -- reduced SUV at 1 location, disappeared at another, stayed the same at another.

I rely more on the clinical picture from my primary oncologist/surgeon, my RO and my MO. Now I see the RO every 3 months, and the MO and ENT have just changed from 3 months to 4 months. I stagger the appointments, so that I do not go more than 4-6 weeks between appointments. I have a Chest X Ray about 2 or 3 times a year, and I think the plan is now for an annual or semi-annual PET scan.

I understand the anxiety, but your situation is really very normal. There are lots of threads on this in the forum if you do a search - very common situation. Hang in there!


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!!
Joined: Sep 2007
Posts: 98
TomK Offline OP
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Thank you all for your responses. My ENT wasn't worried about the numbers and said he would just follow it clinically. He said before he wasn't even going to order any scans, and to just follow it clinically. The RO ordered the scans. I was just hoping for an "all clear" report. I meet with the MO next week and will get his opinion.


Tom
SCC T4N1M0 left side tongue & 1 node
Dx 05/21/07 42 yrs old
40 Tx IMRT @ 70 Gy started 06/25/07
Cysplatin & 5fu 1st & 4th wks
treatment ended 08/23/07

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