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Old 10-08-2007, 08:09 AM   #1
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Red face False positive PET scan

Hello, I am 1 1/2 years out from my NHL. I had the chemo and radiation and now every time I get a PET scan I pop a positive result. I have had three biopsies--all negative. Thank You God! My onc says I am the first one that she has seen with false positive. My mediastinum glows every time and bits and pieces glow here and there at times. Has anyone else had, or have, regular false, positives?

 
Old 10-14-2007, 09:33 PM   #2
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Re: False positive PET scan

Wow......this sucks....nobody replied.

 
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Old 10-14-2007, 10:10 PM   #3
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Re: False positive PET scan

Hi,
I feel so bad for you, but I don't have any answers.
I, myself, don't know about "false positive Pet scans," although I've heard the term. Do they ever give you a reason, as to why they think this is happening? Are you happy with your medical team?
When I had my last Pet/Ct scan, it was "glowing" due to "some arthritis" and also my Onc mentioned my Neulasta shots (to boost my white blood cells) were showing up in my bone marrow. He scared me to death, when he first started talking, because I misunderstood, and thought my cancer had spread. It took me a whole night of fretting, until the next day, to realize it hadn't.
Anyway, I know the anxiety of the unknown, is absolutely horrible.
I hope someone who knows more than me, will come on here & help you.
In the meantime, try not to fret. I'm on here all the time, fretting, and of course, everyone tells me it does no good....and they're right.
I wish the best for you. Try to stay positive.
S.

 
Old 10-15-2007, 04:53 AM   #4
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Re: False positive PET scan

I cannot help either as I have never had a Pet scan but I have heard they can give false positive results, especially if there is some other condition that lights up with pet scans. As singer says, how does your medical team explain the positive result? Biopsy is usually more reliable than scans when diagnosing conditions. Congrats of the one and a half years out of NHL!
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Husband dx July 2003, advanced rectal cancer stage 111C; myself dx July 2006 indolent lymphoma; husband dx February 2010, stage 2 prostate cancer.

 
Old 10-15-2007, 10:37 AM   #5
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Re: False positive PET scan

I thank you guys for replying. My team does not know what it is. The biopsies have all been negative and so if there is nothing to see with a follow-up CT scan--they have decided not to biopsy anymore as it is quite invasive, as you probably already know. I am good with this decision as I hate pain! I am an oddity and I am not in a small place that I don't have faith in. I have been seen by some of the best doctors in the country for lymphoma (at Duke) and my regular onc is a lymphoma specialist. My regular onc has no idea what is lighting up. I brought up the issues of inflammation from arthritis, brown fatty deposits, sarcoidosis, depleated uranium (I was int he first gulf war), infections, etc,. and all have been shot down. She feel the only way we will know is if my chest is opened up and some tissue samples taken for testing. Yikes! We both decided that is not the route to go. Anyhow, since PET scans are not that old--I was hoping that someone else is out there that also tests positive but who doesn't have cancer anymore.....Surely I cannot be the only one. Can I? My onc calls me an 'anomaly'--I guess this is better than being called an 'unfortunate recurrance'!! LOL

Thanks for responding. I am just very anxious as I just had my scan this morning and now I am in the waiting stage until next week when I see my reg onc...........gulp.

 
Old 10-15-2007, 01:31 PM   #6
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Re: False positive PET scan

Hi,
Throughout this whole cancer-thing, my anxiety levels have shot sky-high.
I think it's only normal...especially waiting for scan results. That's always the pits.
I'm sorry you're going through this, especially since you seem to be stumping your doctors. In the meantime, I was going to suggest you ask for something for your nerves...maybe you already have. If I didn't have anti-anxiety med's, they'd have to peel me from the ceiling sometimes.
Hopefully, you'll get some answers soon. In the meantime, try to keep your stress levels low. I'm right there with you...believe me. I had my first radiation today (19 more to go) and I was a bit of a basket-case.
By the way, can't they rush your results, since you're so nervous?
Sometimes, it pays to ask. I had my last Pet/CT scan in the morning, and thankfully, got the results that afternoon. I think I told you, I misunderstood my Onc with the results. I'll never leave the hospital again, that perplexed and not understanding what was going on. Live & learn.
Good luck, once again.
S.

 
Old 10-15-2007, 06:31 PM   #7
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Re: False positive PET scan

Hi Singer,
Where are you getting radiated? I had the head and neck and chest area for six weeks. Not fun but really a necessity. I was put on Cymbalta about 2 months ago for the anxiety. It is working actually very well--until now. It just this waiting--had the scan now the wait. Then being told I lit up again. Ugh. I keep telling myself it could be much worse. I suppose I could try to see if I could push my appt up to this week. All they can say is 'no' right! I hope you sail right through your radiation without problems! The biggest thing for me is that with the head/neck/chest radiation--pale people tend to suffer with this type of radiation. I am very pale and burn easily--but made it through with flying colors. Although I have lost my taste for beer and very sugary things. Too bad about the beer.......now all beer tastes like it has skunked. I do miss beer.

Yeah, this is a whole new level of anxiety isn't it?

 
Old 10-15-2007, 06:44 PM   #8
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Re: False positive PET scan

Hi,
I'm getting radiated in my upper chest area.
My original tumor was above my collarbone. After my Pet/CT scan, they found 2 smaller one's in my chest. They've assured me my vocal chords (I was a singer for a living--not sure about the future) nor my salivatory glands will be compromised. Whoo...thank goodness for that.
I was told I might get a sore throat, or possibly get that slight burn on the skin, you're talking about. I'm fair, also. Darn.
Yes, if I were you---ask away if they can move your appt. up. I'm finding out, it "never" hurts to ask. Just like today....I have to go to the hospital for 19 more treatments. Well, they scheduled me for 4:30 in the afternoon. After I got to thinking about it, I thought--wait a minute! That's rush-hour traffic!!! So, before I left, I got another nurse, and she came back and said, "How's 10:45?" Ahh.... much better. It pays to ask.

My problem is, I get so darn nervous over this stuff, and I don't retain what they're saying! Yes, it's all very unnerving.

Thanks for saying you "made it through with flying colors." I love to hear stuff like that!

Keep us posted.
S.

 
Old 10-16-2007, 05:38 PM   #9
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Re: False positive PET scan

Hi Singer,
I lost one of my salivatory glands. Yech. I am always sipping on water now and chewing gum. I hate it too. I think its rude to chew gum when you meet people--well used to think that! Now I chew away. It is that or I would not be able to talk after a few sentences when I meet someone new. Did you know you could gag from having a dry mouth? I didn't either! I sure am glad your vocal cords will be okay and you won't have a dry mouth! I have found my voice has changed in that I cannot root-hoot-and holler for my favorite football team like I used to. I loose my voice quickly--so I whistle loudly and scream as best I can for that touchdown. There is going to be a lot of that this season! Pats fan! I really think your radiation will be just fine! Then, next you have your two years to mark off to make the cure! I don't know if my onc has started counting my two years--but I have.....Feb makes 2.

 
Old 10-16-2007, 06:00 PM   #10
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Re: False positive PET scan

That's terrible you lost your saliva gland. Will it ever return, or get better with time?
I had a friend that had tonsil cancer & she had a rough time with dry mouth, too. I don't think chewing gum is rude. You don't have to "smack" it, right? It's the gum "poppers" (cracking of the gum) that drives me crazy! lol...
How many radiation treatments did you have? I'm sorry if you already told me. I'm counting down....18 more. My memory is not the greatest, these days. Chemo brain has really affected me.
I hope my radiation days go fast. Everyone said chemo would go fast, and looking back now, it did---but, when I was in the thick of it, I still remember thinking I'd never get to the end. It was about #6 treatment that I started having big problems.
Is the "2" year mark, when your onc said you're "cured?" I DO hope that happens to me. I'm praying to hear that!
I've been a bit depressed the last few days. I don't know if it's from the chemo, the radiation, or the whole ball of wax. My other friends on here have been so kind and are offering me such wonderful support, but I'm thinking I might be in need of an antidepressant. I tried Zoloft, but couldn't sleep--so I stopped. I don't have the best prescription plan, so there went $140 down the drain!
Anyway, I'm glad you're online. Everyone else seems quiet tonight.
Hope you're doing better.
I should've asked you earlier, did you get to move up your appt.?
Are you feeling more calm about your scan? I know this is all rough....
My thoughts are with you.
XO, S.

 
Old 10-17-2007, 04:23 PM   #11
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Re: False positive PET scan

Howdy Singer,
Sorry I missed you yesterday. I hope all is well. I have found that my memory is just crappy after the chemo. It wasn't great to begin with but the chemo took out the last bit. I had six weeks of radiation--so that would be 30 or so sessions. I also had the 6-cycles of CHOP-R prior to that. I had a GREAT radiation oncologist. She was very good and understood what was going on with people who have this. I had large B-cell NHL with a 'bulky' type tumor in my neck. There is one good thing about having an impaired memory. I have found that I have forgotten (almost) a lot of the crap involved with going through chemo! Chemo was the pits...the worst....saved my life! I hope!!! I am sorry that you are feeling depressed. I did too at times and I still do. My biggest symptom though was/is anxiety. What a new level this is! I was tried on Cymbalta and it works rather well for me. My anxiety has been cut in half and I am able to concentrate at work. Before the Cymbalta, I was a basket case about one month out from my scan--couldn't do anything. I'd stare at the coumputer screen and nothing would happen. I think it is normal to feel depressed at times. Think of all the rearranging our brains are doing when we are fighting to stay alive and how much toxins we get put into our bodies to hunt down each and every abnormal cell. It is a fight-from-the-inside and this type of fight requires a different attitude than the one we carried for our many years here in this life. I slowed down my life--literally. Life existed for the moment--no more and no less. I did not think of next week, next month or next year. I simply was. I began to enjoy the simple sensation of the wind running over my bald head and it felt good (yes--I went outside around my house with no head covering). To see my daughter enjoying herself and to see each individual in their own cars while on the way to work in their own little worlds. Each moment was seperate from the hour. This is how I got through. My future is now a future--I dare to think in terms of a year--but no more. I hope I haven't bummed you out. You will feel better. I hope you keep at it and find a medication that works for you--if this one was no good try another. I know you have to give them great consideration though--I am lucky and have good drug coverage so the cost isn't really a consideration for me--I just got lucky with the Cymbalta--good for depression and anxiety! well, I've got to run--dishes are piled up and I need to get my beauty rest! I'm thinking good thoughts for you! Radiation will be over before you know it.

 
Old 10-26-2007, 04:02 PM   #12
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Re: False positive PET scan

McElroy,
Just wondering how you're doing. I haven't seen you on here for awhile.
I finished up half of my radiation treatments today and I'm counting down.
No bad side effects....just a few. Some minor throat issues & some allergy problems---other than that, I'm good. I'm crossing my fingers, it stays that way.
Hope you're o.k.
S.

 
Old 10-26-2007, 06:11 PM   #13
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Re: False positive PET scan

Hello Singer,
I went for the onc visit after the PET scan and had bad news. I'm glowing all over my thoracic/pelvic area and I had a biopsy yesterday. I've been holding my breath.....waiting. My onc is out next week and they expected me to wait around for her to get back to tell me the results? They scheduled me for like the 2nd week in Nov to get the results. I made them make me an appt Mon the 29th. I know that will be too soon--but it keeps them knowing I will not wait. I spoke with a nurse today to let her know that they had better tell me the results over the phone if they are not ready Monday. I don't know--it seems we have to fight the staff at my onc office at every turn. I have made another appt for a 2nd opinion at a hospital that is one of the top ones in this part of the country (NC) and is a University type teaching hospital. Hopefully, no matter how next week goes--I can get some answers. It is unrealistic to keep telling me & my family that I have tested positive for cancer (by the PET scan) every three or four months. It is a real test of our constitutions, let me tell you. I've had it with her administrative staff and I am ****** off that my onc did not bother to tell me that she was off next week and made no provisions to tell me with whom to speak about this latest biopsy. What does she think--I'd be okay with a 2 or 3 week wait? Ughhhh.........

 
Old 10-26-2007, 06:31 PM   #14
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Re: False positive PET scan

I'm sorry Singer................
I am glad you are half way through radiation! It will fly by and be in your rear-view mirror soon and will only be an afterthought in life's quiet moments. Life--BE IN IT!!!! I too have cats so one thing my onc is thinking about is cat scratch fever......I didn't know it was an actual thing...just a Ted Nugent song........

 
Old 10-26-2007, 07:25 PM   #15
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Re: False positive PET scan

I hear the "angst" in your post.
I'm so sorry you're dealing with this. I'm already worrying about my next Pet/Ct scan, and I'm not even done with radiation, nor have they even scheduled it.
Wait = worry
(waiting equals worrying, is what I was trying to say)....
So, where did they take your biopsy?
Are you hurting?
I just saw you posted again...Ted Nugent, what a character!
You know, I was praying I had "cat scratch fever" before my diagnosis (did mucho research online)---I'd much rather take a round of antibiotics, than chemo & radiation.
Yes, I'd be upset, too, at my onc, the way she's dissing you, knowing you need some answers.-- And I think that's great you're seeking out a 2nd opinion. The best of luck to you.

I'm so excited I don't have to get up early & get radiated tomorrow....
Ahhh....the small things in life are great, aren't they??
XO

 
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