#72664 04-08-2008 04:41 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | OP  Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | This is Amy, Minnie's daughter writing for her:
Mom had a PET scan on friday and we picked up the results and are unsure of what some things means. Does anyone know about SUV rate? It has increased significantly in her lung and on both sides of her neck. The area on her lung was deemed scar tissue in September, but this scan says it has grown and has a higher SUV rate (from 5-7.5) and should be further tested because it appears to be tumor. Would they get that wrong the first time? Any ideas?
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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Joined: Apr 2006 Posts: 794 | Amy, you are sweet to be writing for your mom. I have been reading her CarePage, and I feel like I have gotten to know all of you wonderful girls.
I can't believe that they allowed you to pick up her scan results without being there to interpret them for you/her. That only makes us amateurs worry, often needlessly.
Try to get into "neutral" until you can get the doctor to interpret the scan. It does sound like some sort of follow-up is recommended, if only to clarify the questionable findings.
Which doctor ordered the scan? He should be the one to give you the results and to make the recommendations about the next step.....and if it were I, that would happen TOMORROW. With that in my brain, I know I would have to camp out on his doorstep.
They should NOT have done that to you....to let you take the results without having an appointment to get his interpretation.
Please keep us posted. There are a million explanations, and until you get the professional interpretation, your imagination is, of course, going to go wild. Try not to let that happen, and call the doctor first thing tomorrow.
I looked up "SUV's" and it says that it is the acronym for Standardized Uptake Values. (????) I guess it (obviously) means that she has some increased uptake in those areas, but everybody here knows that, as wonderful and valuable as PET scans are, they give many false positives. There are a number of benign reasons that an area can have an increased uptake rate, including inflammation and infection and active healing.
We'll all be waiting to hear what the dr. says.
XOX
Last edited by August; 04-08-2008 05:56 PM.
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
| | | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Amy, I agree with August that Minnie's doctor should be interpreting that scan and not just give you the results direct from the scan first, which is a way to scare yourself badly. I had one last year which would have scared me badly because there were some areas that had values in the gray area where it might be a tumor or might not. If I had read the results before my ENT looked at it, I would have gotten scared but both he and my MO went over it with me and convinced me there was probably nothing to worry about. The one I had this year, I just took the ENT's words when he said the results looked fine. The people who write those scan reports have to mention somehting might be cancer if there's even any remote chance from the results because of fear of being sued. But Minnie's doctor will be a better judge of whether there is something to really be concerned about. And I do really hope it is not. Sending prayers tonight....
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"
| | | | | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Hi guys, Minnie here. It's almost 3am and I cannot get to sleep. I want to clarify that it's not my doc at Hopkins that gave us the written report, it's the local facility here where I had the scan done. They also gave us a CD of the PET to take to Hopkins with us tomorrow (well, today actually!).
My biggest concern is the new uptake on the left side of my neck. We've been watching the node on the right side since August and this is the first time there has been any change. But it's the first time the report has shown any uptake on the left side, which is the side of my cancer. I've already had a disection on that side. What I have had issues with the past 6 weeks or so is that the left side of my neck has started pulling more and it's affecting the right side now. It's visable under my chin that it has become tighter, pulling at the right side. So, I'm hoping it's all to do with new scar tissue developing.
The area in my lung is the same area that they ruled out as scar tissue 6 months ago. If they come back now and tell me it's a tumor, than someone will have some explaining to do. After it showed up on my first PET in September, a CT with contrast showed it to be scar tissue.
I'm pretty sure I'm facing a neck disection on the right side and maybe some type of surgery on the left side to see if anything is there??? Not sure.
One good sign is that as far as my mouth goes there is no evidence of disease. Here I spend all my time worrying about it coming back in my mouth and they have me worrying about everywhere BUT my mouth. This is so tough on my family, I'm tired of it. It seems surreal at times..........I'm worrying about new cancer and new tumors while I'm helping the 17 year old pick out her JR/SR Prom dress, babysitting for the oldest so she can work an extra day, going to softball games to watch the youngest two play..........amazing how we learn to continue on with our daily lives even when our fears are overwhelming. I've even went from 104 pounds to 121 pounds, which has really boosted my energy. I hate to dive back into recovering from surgery, I have such a tough time healing. The graft area on my thigh still isn't healed and it's been 6 months. I still have an open area approx. 3inches by 2 inches. Imagine having a neck disection on radiated tissue.
I'll post tomorrow night and let you know how it went.
Minnie
Last edited by minniea; 04-08-2008 09:07 PM.
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.
| | | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Ditto to all the above. Call as soon as the office opens and leave a detailed message if you can not speak to the doctor or nurse leave 2 numbers,one should be a cell phone, and ask when you can expect a call back. I add my prayers that all will be well with your mother. Please do post and let us know as we all worry about each other.
Malka
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
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| | | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Minnie,
Ugh - facing another round of what-if, could be, hope it isn't is definitly a sleep robber. i hope you get a good report in the morning
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
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Joined: Jun 2007 Posts: 10,507 Likes: 7 | Minnie:
Facing this for a third time must be terrible. You are such a strong person caring for everyone with this burden on your mind. Im praying for good results for you today.
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: Jun 2007 Posts: 221 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2007 Posts: 221 | Minnie,
I'm thiking about you today and hoping that you get good news.
Keep us posted.
Joy
CG to Father, 75 yo with SCC of the mouth; upper maxillectomy and neck diss. performed on 5/23/07. Father also suffered heart attack during surgery and now has CHF. RT complete on 8/28/07. Cancer back 11/27/07. RT and Chemo to start on 12/17. Cancer back 6/17/08. Finally at rest 08/08/08.
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Minnie- My prayers are with you today. Good Luck!
Sue
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Minnie,
Words fail me but I am sending thoughts and prayers your way and hoping that you and your family can find the strength to get thru this next hurtle. I just can't imagine how tired and scared you all are!
Hugs, Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
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