It never seems to end. I feel like I've spent the last 1 and 1/2 years with a black cloud over my head. For the last month I've been having problems with what felt like a pain under my rib cage and chronic indigestion, not to mention the usual extreme neuoprathy in my hand and both feet, fatigue wherin I'm sleeping 10 hours a night and the thick saliva coming from the back of my throat with mild pain. I eat everything ok except I find myself eating lots of fatty meats as they are so easy for me to swallow. So for the last month I'm getting stressed about that I may have lung mets due to the chest pain and the knowledge I have a PET Scan sceduled on June 10th. I meet my ENT Surgeon on June 12th and she tells me my scan shows some UPTAKE in my throat but she is not overly concerned about it even though she see's some swelling in my throat when she scopes me. She thinks its probably GERD and that I need to follow all the instructions on the paper she gives me and not only take Prilosec but live the lifestyle suggested. Then says I'll see you in 3 months,.. so I figure all is well. On June 17th, I have an appointment with my Oncologist who actually views the PET scan himself and tells me he is concerned enough that he wants me to have another PET scan in 6 weeks, tells me to take two 20mg of Prilosec twice a day...so now I'm taking 80mg instead of 20mg per day and that he called the ENT surgeon to ask her to see me again in 6 weeks instead of 3 months to scope me again! I ask him if he is concerned and he says "of course I am". I get a copy of my PET Scan and it says: "Interval development of asymmetric mild hypermetabolic activity in the hypopharynx extending to the piriform sinus with maximum SUV of 5.8, new since prior examination."...
Everything else is normal. So I go from feeling all is well to now waiting about 8 weeks to get to the bottom of this. My oncologist said if the next scan was abnormal a biopsy would need to be done. So I wonder why not just do the biopsy now? My ENT Surgeons office said she could not see me for 9 days (like their doing me a favor) after the next PET Scan is performed on July 29th. I'm tempted to get on a airplane and go back to see the ENT surgeon I previously saw at John Hopkins for a second consult and opinion. Any thoughts about all of this would be appreciated. I'm obviously depressed again out of my mind! I also would appreciated any info about this SUV rating of 5.8 as it seems high based upon other things I've read here before? Does GERD cause swelling and uptake in the hypopharynx to the piriform sinus? This is on the left side which is the same side as where I initially had my BOT cancer so that also concerns me as well. I assume this area is in close proximity to the base of tongue?
Thanks, Steven

Go back and get the second opinion as it sounds like it will be helpful all the way around.

Steven, I see you are in the Atlanta area. Where are you being treated? If you are that concerned you should do as David suggested and get a second opinion. BB

Steve,
Have you seen a gastroenterologist? I also have GERD with the same painful symptoms you describe. Sometimes I feel that I need to be burped like a baby. It is particularly bad when I eat cold chicken or turkey with skin or fatty meat like the end piece of a roast or when I overeat. I have been on both Nexium and Prilosec and found the Nexium works better for me. I asked what to do about the indigestion and the Gastroenterologist said I could take Zantac. (Some of my problem is also due to the fact that I had gall bladder surgery.)
I find that meat is easier to swallow if I use a little mayo, ketchup, gravy, bbq sauce, etc. Also, hot food is better than cold.
Do get the GERD under control as it can lead to serious problems with the esophagus.

Wishing you good health,
Malka

Well last week I went to my new RO at Emory (3rd visit since the old one left)and he spent about an hour and a half with me. He examined me under my arms, all around my head and neck, thought he might have suceeded in pulling my tongue out of my mouth and looking down my throat with a mirror and then spent about 10 minutes scoping my throat. Pulled up my Pet Scan and showed me the uptake which he said was on the surface of the interior wall of my throat, so if it was a reocurrance he should be able to see something with the scope. The good news was he did not see anything which appeared abnormal. He actually left me for about 30 minutes to walk to another building to talk to my ENT surgeon in person about the need to keep a close eye on my situation. It was decided that he would recheck me in 2 weeks and then I would have a repeat Pet Scan in 4 weeks and see him again for the results. We talked about False Posatives on Pet Scans and he said he wished he could feel the spot to make sure it felt normal as well as his visual examination which looked normal.Unfortunately this could not be done with my being awake. Needless to say I felt a lot better after seeing him. I must say this Doctor was wonderful. Our visit was on the afternoon of July 3rd and he spent a lot of time with me talking about my side effects and my overall situation. It was great having a Doctor who really made me feel like he cared so much about my current fears and concerns. He was very sympathetic to the different reactions I had gotten from my other Doctors and understood my fears and fustrations.
Thanks to those of you who responded to my initial post. Best regards to all, Steven

I, like many, had 2 Cat scans that showed areas of concern that turned out resolving themselves in a few months so lets hope thats all it is. Not many of us had a Pet so soon after Tx because of the likelihood of false positives.

Steven, I have had new areas of uptake that is in the grey zone a couple of years out of treatment. That is a scarier situation than what David describes where you have something showing up after treatment and then it resolves itself. But I went through the same thing you are going through where the ENT (in my case I do followup with him, not my RO) had me in for a really thorough examination and didn't see anything or feel anything in the area that had that ambiguous uptake and has concluded that I just need careful followup, not a biopsy. It is a nerve-wraking situation, but the fact is things can light up for all sorts of reasosns other than cancer on a PET (in my case my ENT thinks it's throat irritation from trying to swallow more) .

Good luck with this.

Nelie

I just got back the results of the new Pet Scan and all is
well;-)))). Of course I'm happy but now I'm having a Brain/ Sinus CT Scan being Ordered since I told the my RO I get headaches in the afternoon and evening when I talk a lot during the day at work. Being a civil trial attorney its kinda hard not to talk... too much! I also get a ringing in my ears with the dull headache in the top of my head and itching around my eyes and jaw sometimes. Just thinking that if I had Brain Cancer do I really want to know? Is their anything they could do really? Can brain cancer only cause symtoms in the afternoon and evenings?? I would think I would have headaches all the time if it was from a mtastisis to my brain..right? Any thoughts would be appreciated. Thanks, Steven

Hydration? are you drinking enough water (as opposed to coffee).
Glasses? could you need glasses or did you prescription change? Especially do you need glasses to read?
Other than that nothing constructive comes to mind.

M

Steven, It's unlikely to be brain cancer but it's good they are being careful. Not all brain cancer is metastatic cancer and not all brain tumors are cancer. Through an accidental finding on an MRI that mistakenly included my brain, two years ago I found I had a meningioma--a non-cancerous brain tumor. I had (and have) no symptoms whatsoever even though this thing is the size of a large olive and it hasn't grown at all in the two years since so they aren't doing anything at all about it. But of course I did research on menoingiomas and found that they are really pretty common (more so among women) and usually are very operable. They grow (can grow, minen isn't), like cancerous tumours but don't sperad to other parts of the body so theya re non-cancerous. I think there are some cancerous brain tumors that are also very operable.

Anyway, probably you don't have any of that. Do you have any tightness around your jaw? Due to my own circumstances, I've become much more aware how widespread the jaw muscles are--they go under your eyes and up to the top of your head. Perhaps your symptoms are related to fibrosis in one of thsoe muscles. If so, if you can find a massage therapist trained in cranio-sacral massage (it has to be specifically that), they may be able to help you.

Good luck.

Nelie