| Joined: Oct 2011 Posts: 4 Member | OP Member Joined: Oct 2011 Posts: 4 | I had a clear PET scan over a year ago, my doctor says I don't need another yet. How often do most of you with lymph node/stage IV get tested?
I have a sore throat, sinus drainage, and am very short of breath (unusual for me). I got a chest x-ray and it showed one lung not the same shape as the other.
Don't you think I should get a PET? Or am I just a big baby and worry to easily?
Swollen node, Diagnosed 04/05/10. Stage IV BOT SQCCA, 1 Lymph Node, Radiation and Erbitux, 5 weeks of Ethyol to protect Salivary Glands,no PEG. 10/20/10 PET clear.
I want to make sure other people know about this disease and HPV.
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Welcome to OCF. Most people get checked by CT or PET scans every 6 months for the first few years. After several clear scans then it goes to once a year. Cost could be something to do with it. A PET scan cost considerably more than a CT scan. If your chest xray was unusual then further testing should be in order. Hope you have nothing seriously wrong! ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2009 Posts: 493 | Hi, I had a PET scan a few months after I completed my tratments, then a CAT scan for a basis of what to look for in the future. I now have a CAT scan every 6 months. I just had one yesterday and will get the results next week...always a stressful time. I haven't had a PET since I completed my treatments.
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | B,
There is something to be said about due diligence. I had scans, PETs or CTs every 6 months for the 1st 2.5 years and then a year...now my ENT says there is no need unless there are signs for concerns. I think everyone on these boards have had anxiety to some degree post tx, its normal. If you have concerns get them addressed by your medical team but don't let you mind run wild, one step at a time.
Keep your chin up
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2008 Posts: 507 | Follow-up plans vary based on the type and extent of OC you had.
I think you would be classified under the NCCN Guidelines Follow-up Recommendations "Foll-A".
"Foll-A" recommends: - post-treatment imaging of primary and neck within six months of RT treatment and futher reimaging as indicated based on signs/symptoms; NOT routinely recommended for asymptomatic patients. - chest imaging as clinically indicated.
"Foll-A" is what the NCCN classifies as a "Catagory 2B" recommendation in that the CCC's on the board do not have a uniform consensus, but have no major disagreements.
Nevertheless, if a scan (CT, PET/CT or other) will help reduce your worry, then I think you should push for one.
Don TXN2bM0 Stage IVa SCC-Occult Primary FNA 6/6/08-SCC in node<2cm PET/CT 6/19/08-SCC in 2nd node<1cm HiRes CT 6/21/08 Exploratory,Tonsillectomy(benign),Right SND 6/23/08 PEG 7/3/08-11/6/08 35 TomoTherapy 7/16/08-9/04/08 No Chemo Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
| | | | Joined: Jun 2011 Posts: 188 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jun 2011 Posts: 188 | Christine or anyone, is there a resource or folder that in laymen's terms differentiates between MRI, CT and PET, what each does and why one is used?
Caco CG to Dad. Biopsy 5/11 non-op, SCC stage IV poorly dif at base of tongue with nodes, quit smoking in '85, ChemoRad began 8/2/11 ended 9/22/11 with NED. Distant mets 11/11, clinical trials. War raging on!
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | HI there... definitely push for another CT or PET. It should be done regularly for the first few years. My drs were content to do a visual even though I am only 8 mos out of surgery and 6 mos out of radiation. I did have a clear scan at the 3 month mark and I'm not anxious to glow in the dark, but my family physician is referring me to a local ENT to hold my hand if I need it - because of this he is doing a new CT of my head and neck and chest. If they don't want to give you one there are ways to circumvent the system. Unless there is a large tumor (highly unlikely) in your chest, an oddly shaped lung sounds more like maybe you have fluid or something going on there. Has it been compared to earlier xrays? Maybe that is normal for you? Though it wouldn't cause shortness of breath.
It may be totally unrelated to Cancer. but I would definitely have it checked out.
Good luck
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Apr 2009 Posts: 329 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Apr 2009 Posts: 329 | Hi B.
I had a PET/CT Scan at the beginning now I have a CT Scan once a year with and without contrast. My CT scan is from my waist to the top of my head. I didn't have cancer in my lymph nodes but this is what my Surgeon does. BUT I will say I asked for a scan 6 months after my surgery. I told my Dr. I won't be happy until I have one.
Push for a Scan and keep pushing you are your own best advocate.
Take care, Connie
SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2. Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.
CT Scan 9/11 clean, CT Scan 9/12 clean
Moffitt Cancer Center in Tampa, FL. A+.
My hometown Lockport, NY.
| | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,406 | I'm still on biennial PET/CTs, in fact I'm up to bat on Friday. As long as it's affordable (hah! I make a joke) I'm fine with them scanning me just as often as they want.
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Caco, here is some brief info about MRI's, CT and PET scans....
MRI according to webmd.com:
Magnetic resonance imaging (MRI) is a test that uses a magnetic field and pulses of radio wave energy to make pictures of organs and structures inside the body. In many cases MRI gives different information about structures in the body than can be seen with an X-ray, ultrasound, or computed tomography (CT) scan. MRI also may show problems that cannot be seen with other imaging methods.
Magnetic resonance imaging (MRI) is done for many reasons. It is used to find problems such as tumors, bleeding, injury, blood vessel diseases, or infection. MRI also may be done to provide more information about a problem seen on an X-ray, ultrasound scan, or CT scan. Contrast material may be used during MRI to show abnormal tissue more clearly.
CT scan info from the MayoClinic.com:
A CT scan � also called computerized tomography or just CT � combines a series of X-ray views taken from many different angles to produce cross-sectional images of the bones and soft tissues inside your body.
The resulting images can be compared to a loaf of sliced bread. Your doctor will be able to look at each of these slices individually or perform additional visualization to make 3-D images. CT scan images provide much more information than do plain X-rays.
A CT scan is particularly well suited to quickly examine people who may have internal injuries from car accidents or other types of trauma. A CT scan can also visualize the brain and � with the help of injected contrast material � check for blockages or other problems in your blood vessels.
PET scan info from medicalnewstoday.com:
A PET scan uses radiation, or nuclear medicine imaging, to produce 3-dimensional, color images of the functional processes within the human body. PET stands for positron emission tomography. The machine detects pairs of gamma rays which are emitted indirectly by a tracer (positron-emitting radionuclide) which is placed in the body on a biologically active molecule. The images are reconstructed by computer analysis. Modern machines often use a CT X-ray scan which is performed on the patient at the same time in the same machine.
PET scans can be used to diagnose a health condition, as well as for finding out how an existing condition is developing. PET scans are often used to see how effective an ongoing treatment is.
Sorry B Ellis for veering off the original topic but it was an important question.
Last edited by ChristineB; 11-16-2011 07:09 PM.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | |
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