#40080 06-07-2006 07:39 AM | Joined: Jun 2006 Posts: 82 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jun 2006 Posts: 82 | Question about scans for all of you. I had PET/CT scans after my diagnosis but before my surgery on May 11th. My doctor told me that they will not be doing scans again until 6 months after the radiation/chemo is finished because they are getting way too many false positives at 3 months with the after effects of the radiation. Is this similar to other's experiences here? Also, will they give me a PET/CT before my radiation begins in 2 weeks? I realize I just had the surgery 1 month ago, but wouldn't they want to know if something else is growing so they could target that with radiation too? Thanks for the information.
DX on 05/01/06 with SCC of right tongue. 05/11/06 surgery-tumor 1.2cm & 4 cm clear margins & parital glos. & neck dissection with removal of 34 nodes/1 positive at 4mm)T1N1MO 35 IGRT & 3 cycles of chemo (1 cisplatin & 2 carbo-complete on 8/9/06.
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#40081 06-07-2006 10:12 AM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | I had a CT scan before my surgery and then one after radiation and that was it. I'm three years from treatment and I have checkups every three months, bloodwork, and a yearly chest Xray.
Hope this helps.
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#40082 06-07-2006 12:09 PM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | Unfortunately, this is one of those questions that is going to give you so many different answers that you will probably have more questions than when you started.
I've been on this forum for over a year and have yet to see any consistency about this question, as well as many other topics. You have to go with what your doctors are recommending and have trust in them at this point. It sure would be nice if there were set protocols and then everyone would be much happier as we would all have the same treatment and follow up. Someday, maybe, but not now.
Since you asked, I have never had a PET scan and there are none planned. I have had surgery only and that, too, puts me in the minority. I see my surgeon every three months right now and get a chest x-ray once per year.
See what I mean?
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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#40083 06-07-2006 04:09 PM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | They will do a CT scan on you before radiation because that's what they use to set up the radiation plan. As for the PET, it gives a lot of false positives and Jerry's right that opinions on how useful they are differ widely.
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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#40084 06-08-2006 09:50 AM | Joined: Feb 2006 Posts: 136 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Feb 2006 Posts: 136 | I'm also in the minority with Jerry having only surgery - no radiation. But, I did have a CT before my initial resection and a PET/CT in April about 2.5 months after the surgery. There are no plans on any additional scans for me - unless we suspect the cancer has returned. At that point - doctor says another scan may be done.
On a side note - my initial CT DID NOT SHOW my 2 cm tumor at all. So, there are false positives with PET and false negatives with CT - although I don't think that happens all that often.
SCC Right Lateral Tongue T2N0M0 Dx 01/12/06, Surgery 01/25/06. Partial Glossectomy, Bilateral Neck Dissection - 22 lymph nodes - all clear. No radiation.
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#40085 06-08-2006 01:32 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2003 Posts: 1,384 Likes: 1 | PET scans are prone to show areas of rapid healing process, infection and sometimes for reasons as yet unknown (besides cancer). The rate of false positives causes many to suffer from unfounded fear and sometimes additional treatment that is not necessary. It is sometimes tough to comprehend why less is more with regard to advanced scan technologies. Trust that your medical team knows their stuff. As you have read many of us have never had any post treatment scan. I do not believe we are a minority either. Sometimes it might simply be what kind of insurance we have for coverage. Pet scans are way too new to know whether they help cause better survival or not.
Sometimes not knowing is a blessing.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#40086 06-08-2006 04:04 PM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | It's interesting. The ENT I saw in Boston (who helped me find the speech pathologist who had expertise in swallowing problems for radiated patients) said they don't use PET scans--I assume because of the problem with false positives.
I've had two so far and I heard from my ENT here (in NY) that both showed no signs of recurrence. But I read over my medical records when I was carrying them to the doc in Boston and in fact the first PET scan said there was an area that lit up on my tongue and in my throat that could be from healing tissue or could possibly be a sign of recurrence. When I had that first scan done I still had a LOT of inflammation in my mouth and throat and my ENT certainly knew that so I guess he decided it wasn't something to worry about.
The second PET scan I had just over a month ago, though, was done by the same person and because they had the September baseline, the report from this one said clearly that although there were some areas that still were lit up, they were in the same place (but not as strongly lit up) as the September scan and so were pretty clearly due to healing tissue or residual effects of surgery. The report concluded "NO signs of recurrence". So if you get a baseline PET done it can help interpret future PETs better. But I can see why some docs wouldn't want to go near them. if my ENT was being really paranoid about having overlooked something, who knows what he would have done in reaction to that first scan.
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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#40087 06-08-2006 04:18 PM | Joined: Jan 2006 Posts: 19 Member | Member Joined: Jan 2006 Posts: 19 | Sounds right to me. Husband had pet when first diagnosed, showed nothing, had one more in between chemo and radiation, showed nothing, then had one about 6 weeks after finishing treatment. Stage 3 SCC, unknown primary, 1 right lymph node removed. Last pet left sternum lit up, follow up mri showed a little somthing, dr ordered biopsy IT WAS NOTHING!!! I thank god for all the drs involved to be cautious...but damn we were scared.
Caregiver to husband Mike SCC Stage 3 no primary/Carbo/Taxol 2 Cisplatin/C5FUS/39rad/finished 3/15/06
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#40088 06-08-2006 05:46 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Just a few things:
1. Most ENT's don't order scans.
2. They (meaning my onco;ogist) gave me one as part of my original diagnosis as part of a triage, because I was advanced stage. They wanted to see if I was treatable.
3. A few here get regular PET or PET/CT scans.
4. Some have had none.
5. The NCCN guidelines for oncology practice don't indicate them yet as a standard part of followup - just regular physical examinations, intervals determined by time and an annual chest x-ray.
6. Any followup scans, annual MRI, are always ordered by my RO but she won't order a PET -and she's a professor of clinical radiation oncology at a top CCC.
7. A few here have had potential distant metastesis caught early by PET ot PET/CT.
8. As Mark mentioned, false positives occur frequently in the post Tx while healing is still going on.
9. We have had many discussions on PET or not to PET -do a search on PET and you will find everything there is to know about PET or PET/CT.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#40089 06-09-2006 02:43 AM | Joined: Dec 2005 Posts: 31 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Dec 2005 Posts: 31 | My husband had a PET Scan this past Saturday and a CT Scan this past Wednesday. These are his first scans since completing treatment. We are waiting for the results (with knots in our stomachs). After reading all of these messages I'm not feeling too comfortable with these tests. Maybe he shouldn't have had them. We don't need anything else to worry about.
Rhonda - Caregiver to husband Leon. Diagnosed with SCC of right tonsil, 1 lymph node. Right tonsilectomy 10/3/05 - Right neck dissectomy 10/12/05, completed 39 IMRT treatments 2/23/06.
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#40090 06-09-2006 03:20 AM | Joined: Jul 2005 Posts: 624 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2005 Posts: 624 | The only thing I will add to what Gary posted is that our ENT and RO are comfortable with PET/CT scans under following conditions:
1) It is a *fused* PET/CT
2) The first one is given no sooner than 3 months after end of treatment, to allow maximum healing to take place and for inflammation to reduce.
3) It is done at a center where they do a lot of head and neck cancer scans
4) It is read by a radiologist that has read many of these scans and has a good feel for what is cancer and what is not. (We asked Barry's radiologist (at Hopkins) and he told us he only does HNC and brain cancer scans and has seen 100s of these. )
Otherwise, according to our surgeon, these scans can result in a lot of anxiety and confusion. BUT (he added) he has known them to catch residual and recurrent disease early, much earlier than could be detected by physical exam alone.
Thus a double-edged sword...
Gail
CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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#40091 06-09-2006 04:17 AM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2003 Posts: 1,384 Likes: 1 | Rhonda, one thing that we have not said in this thread is that the rate of false negative is very low. In other words if the PET is "clean" then it is a good thing. Also, to help with the knots in the stomach, remember not to freak out if they note "something" on his scan. It is common to have ROI (region of interest) which does not necessarily mean cancer just something to look at later.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#40092 06-09-2006 07:51 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | To clarify what Gail said a PET/CT by it's very nature is a "fusion" of 2 images and because of geographical reference points, the accuracy is much greater. They can more effectively rule out anomalies in the scan and reduce the false positive rate. It is also possible to have a separate PET and CT and have the images fused (but not as accurate). There are software packages that will do this. Her ENT is the exception from what most here have experienced. Essentially what she said is absolutely right - it is a double edged sword.
I looked to my early scans to verify that I was cancer free and they ended up causing me even more angst since none of my MRI's, for the first year, were "clean". Both of them sent me back to the head & neck surgeon for "direct visualization". So instead of basking in a cancer free glow, I was adding to my anti-anxiety medications. None of the anomalies amounted to anything. (just like Mark said)
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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