CancerCompass message board discussion started by capp519 on 6/10/2008 http://www.cancercompass.com/message-board/message/all,24894,0.htm Thu, 04 Dec 2008 00:00:00 GMT Thu, 04 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi Everyone,My husband finished his radiation on May 2nd and his 3rd and last chemo on May 6th for stage 4a tonsil/lympy node cancer.  He ended up in the hospital the week after because his levels were all low from the chemo and not eating for a week (he didn't have a PEG) Well, he came home on Friday after 3 1/2 weeks in the hosp.  We went to the oncologist today.  She wants to see him again in three weeks and said she will schedule his PET scan then.  She said to have the scan at about 12 weeks after treatment.  There is new research that says having the scan done too early can have false positives because the radaition is still working.  Also, she said the scan determine how extensive his surgery he will need. She told us the schedule an appointment with the surgeon after the scan.  My question is - how long after treatment finished did you have the PET scan.   I haven't posted on the sight in a few weeks because he was so ill, but I always found a few minutes to log on and see how everyone is doing and get my daily dose of support.  Carol capp519 Tue, 10 Jun 2008 00:00:00 GMT Hi,   My husband had a PET scan about 5 weeks after completing chemo/radiation for SNUC- maxillary sinus cancer- it seemed promising, but the surgeon said it was too soon, that the chemo and particularly the radiation are still working and it is hard to say what is inflammation and what is still cancer, so he has scheduled another PET scan for 7/30, which will be almost 3 months after completion of treatment.  It is hard to wait that long, but there certainly can be a lot of inflammation following chemo and radiation that has to heal. Good luck!Kathy scootie45 Tue, 10 Jun 2008 00:00:00 GMT I had my first post PET 3 months after treatment.  That seems to be the norm.Tom  ThreePutt Wed, 11 Jun 2008 00:00:00 GMT my s.o. finished treatment on April 22nd and his PET is scheduled for june 30 - so about 10 weeks.  first his oncologist at dana farber said 12 weeks but the surgeon there moved it up to 10 weeks...not sure why.~meesh meesh Wed, 11 Jun 2008 00:00:00 GMT I finished rad/chemo (4/07) and had neck & chest CT's @ 6 wks, 5 mos, 8 mos, 11 mos and one coming up now which will be about 14 mos. I had whole body PETS @ 5 mos & 11 mos. They are also watching my lungs due to nodules. I had SCC, stage IVa, unknown primary, at least 4 node involvements same side. (dissection was done 3 1/2 mos from TX, after ENT interpreted 6 week CT) I feel very 'watched'. Gayle  gayleann Wed, 11 Jun 2008 00:00:00 GMT My hubby does not have his scan scheduled yet but the doc said 5 weeks after treatment.  His follow up appointment is July 9th and they said the PET scan would be before that so that we have the results at the follow up appointment. Now I am starting to worry.  Is this too soon?  Lord forbid, I don't want any false positives (or ANY positives for that matter).  Although I would really like to put my faith in the fact that our dr knows what he is doing.  I guess I will just cross that bridge when we get to it, but I can't help but be concerned. g8orgal79 Wed, 11 Jun 2008 00:00:00 GMT I had my first PET scan at about 10 weeks post treatment. The oncologist told me that it takes up to 8 weeks to completely kill the cancer after treatment, so 12 weeks isnt really out of line. It's hard waiting for the day of the scan, but good things (hopefully! ) are worth waiting for.Best wishes and good luck.Mike micromisterphone Wed, 11 Jun 2008 00:00:00 GMT It seems like 10 to 12 weeks is about the average time for the PET scan.  I was just a little worried because I originally thought the surgery had an 8 to 12 week window to be done and that the scan had to be done around 6 weeks.  His cousin who had the same cancer last year, finished his treatment at the end of February and had his surgery on April 9th.  Besides the doctors, I base a lot of information on what he went through.  I'm so glad for this site so I can get several experiences. Thanks,Carol capp519 Wed, 11 Jun 2008 00:00:00 GMT Carol-by surgery, are you referring to a dissection? I know my ENT surgeon also said that ideally it needs to be done within a certain time frame after radiation. I believe that's because as time goes on, the damage from the radiation makes it harder to do the surgery-or maybe recover from it? I'm not remembering! Mine was done about 3 1/2 mos after rad-and he sure didn't want to postpone it any longer! (I had balked-got a 2nd opinion, etc.) Gayle gayleann Fri, 13 Jun 2008 00:00:00 GMT Gayle, I do mean the neck dissection. His next app is in three weeks with the onocolgist (that makes it 2 months after rad)  She will set up the PET scan and then we will make an app with the surgeon. That will be around the 3 month mark, so it seems like he will have the surgery around 3 1/2 months.   The med oncol and rad dr is at one hospital and the surgeon is at Mt. SInai in NYC, but they all recommend each other and work together on cases. Thanks, Carol capp519 Fri, 13 Jun 2008 00:00:00 GMT Gayle, one more question.  When you said you balked - did you want to wait longer or have it done sooner.  What did the 2nd opinion say.  Also, do you think I should call the surgeon (or I e-mail him) and see if this is his protocol.Carol capp519 Fri, 13 Jun 2008 00:00:00 GMT I also was treated at Dana Farber, and hd my PET 8 weeks after last rad. Girlcat36 Sat, 14 Jun 2008 00:00:00 GMT I finished radiation and chemo in July 07, after having had bilateral neck dissection in April 07 for 1 positive node on right side.  My first PET was early October, and results scared the heck out of me, as three nodes were lighting up and were termed "concerning for metastatic disease" in the report.  However, this is the danger of getting the report BEFORE seeing the doctor.  When I went to my surgical oncologist and RO, they said that they weren't worried, and that these were false positives.  I had another PET in December, and two of the three nodes were gone, and the other was stable.None of my three doctors (surgical oncologist/ENT, RO, MO) are particularly keen on the PET scan in head/neck cancer.  They rely more on the clinical examination, and believe that there are just too many false positives on PET in the head & neck, especially after radiation & chemo.  This leads to unnecessary testing and treatment, in many cases.  They plan to do annual scans, but I am in for clinical exams almost every month with one of the three docs.  So far. so good.  Moral of the story is not to get too emotionally invested in the PET results, especially early on.  On the positive side, false negatives are far rarer than false positives, so if you do get a relatively clean scan, it is good news! OhioGolfer Thu, 19 Jun 2008 00:00:00 GMT Interesting to me, because my ENT onc/surgeon is also of the same belief & has never ordered CT's or PET's-he relies on physical exams & the scoping he does regularly. When he examines my neck area he closes his eyes and you can tell he's in complete concentration. However, my rad onc & med onc have both ordered numerous scans (see my previous posting here) and my ENT will read them-not the written report, but the scan itself. I have a CT tomorrow, in fact. I am not even concerned this time around!!!! Gayle gayleann Thu, 19 Jun 2008 00:00:00 GMT