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Pet Scan Results - Two Lymphnodes suspicious , all else fine


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Janet W.

It is hard to tell from the scanty information you've provided. The staging will depend on WHERE the pesky lymph nodes are, IF they are indeed involved. I was staged IIa, even though 2/10 lymph nodes were malignant, because they were not in the mediastinum area (wherever THAT is???) Try not to anticipate the worst...I know that is easier said than done. Please keep us updated and I'll pray for the VERY BEST prognosis!

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The report said the lymphnodes were suspicious for metastasis (sp?) were in the left hilam and the supraclavicular (I hope I spelled these right) area - From what I understand, that means one is upper left lung area, and other right below the collar bone on that same side -

The lung that had the 1.8 cm tumor was on the right side - they took out the upper right lobe - there were no nodes involved when they did the surgery.

So I guess this means it traveled all the way across to the other side to those nodes.

If they light up on the PET scan, then they ARE cancer, right? I was hoping they might light up because of abcess tooth or something - I am forever battling abcess tooth...these two lymph nodes showed up on cat scan in July as slightly swollen, not much....but doctor wasn't concerned.....

A few days ago I had tiny cough, productive - not much productive but some - it was gone within a couple days - but that terrified me.

Please, Tiny, tell me if you know anything different about lymph nodes. The doctor I spoke to said, "I'm sorry" ......but she isn't a lung doctor or an internal medicine doctor - she's a doctor that does counseling, prescribes antidepressants, etc.

If they light up, they ARE cancer?

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Hi Janet-

I'm sorry I don't know more about the lymph nodes, but I DO know that there can sometimes be a false positive reading because of other factors such as infections, inflammations, etc. I wish I had more knowledge to share with you.

When will you see another doctor to go over the report with you? Who do you work with to follow up on your case... a surgeon, a pulmonologist, an oncologist??

John might have more information on the lymph nodes for us.

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My surgeon is on medical leave until first of October. There is currently a stand-in for him. My doctor who took the place of my pulmonologist when he moved out of state - she wouldn't talk to me because she didn't have "consultation notes" from the visit to the oncologist - I had those faxed to her - she said they hadn't come - so they RE-faxed them and by then she was gone. I believe she is mad - she sent me away in june - said I was fine and didn't need any cat scan - ever - or anything else, go way and come back in 6 months for appointment. I think she is mad because I went elsewhere on this..

The oncologist who had this PET scan run - he won't be back for another week.

How much xanax can a person take in one day and still be safe? I am a WRECK. I've taken my ultracet - they seem to help the pain some - xanax doesn't help pain much but several calm me down a little. I am so depressed. I wanted to live. Maybe not a long time, but long enough to raise my children, at least!!

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Dear Sweet Janet-

My heart is aching for you...you are WAY too young to be dealing with this crap. But nothing I say is going to help you get through the next few days...you simply have to keep breathing and putting one foot in front of the other. I KNOW the anxiety level is really high. Try to stay busy. Do you have a support system that you can rely on (other than us)?

It sounds to me as if the onc who ordered the PET scan is your best bet at the present time.

I wish I could be there in person to hold your hand and listen and give you hugs and cry with you and yet find something small somewhere, somehow to be thankful for in the midst of all this uncertainty. Love and empathy.

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I read your post and just wanted to let you know that I am thinking of you. I don't know much about this stuff myself, but I do know from the boards and from what my doctors have said that there are times when results are not accurate and something that supposedly is there, really isnt.

I had a Pet Scan myself, back in February and my tumor did not register that it was malignant. They had me wait 3 months to get another Cat Scan to see if it had grown, and that is how they found that it was most likely cancer. The Pet Scan, in my case, was not accurate at that time.

I wish, like Tiny, that I had some magic words to help you get through the next few days, but I don't. All I can say is that I will be thinking of you and will be here to read whatever words you need to write to get yourself through this. Hoping for the best!!!!!!!!!


46 years old

Surgery June 16, 2003

Stage 1A, upper and mid lobe removed

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Hi Janet, my doctor feels that one of the problems with pet scans is that they can give false positive or false negative results. Suspicious doesn't mean it is a problem, only that it may be a problem. As Tiny said, there are other things that can cause the same symptoms. Hang in there. It doesn't mean you are stage 4, it does mean that you have to go through more medical crap, even if it's just more tests.I'll be sending my best wishes your way.

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When I had my lobectomy, the surgeon left the next day. I was left with a stand in. I was there for 14 days with that stupid machine attached to me the whole time, shocked that a person's doctor could just up and leave like that when you were in such a preposterous condition! When I was a girl, if a person took sick and had to go to the hospital - the local doctor went with them and stayed with them - and that was a 3 hour drive!

I had this PET scan - the doctor is gone for another week before I can talk to him. Not very considerate. I am growing to dislike and distrust physicians more and more as time goes on. Honestly, I think they only do what they do for money! If you don't have the money, they don't have the time. What kind of integrity is that?! They take some kind of oath mentioning Apollo (?!) as well as an image of a snake - I have a hard time seeing that as anything but evil. Apollo the destroyer? Hello? Who, in good conscience, can charge as much as doctors do for something as simple as an office call and sleep at night? Do they realize there are hundreds of families who just plain don't go to doctors because they don't have the money? Been there, done that.

They hold out promises of extending life - told my dad he would only live a short while without treatment but if he took treatment it would extend his life a few short years - My dad ended up spending his last year miserable beyond belief - it was a horrid existence that year for him - and ended up dying in about the same time they gave him for survival without treatment. He suffered needlessly - their medicine no good.

Sometimes I think lung cancer is a back door approach to population control, that chemo and radiation are designed to poison and burn a patient to death on purpose, so that when people come of age for social security, they won't be there to GET it -

But that theory holds no weight here - If I die, then nope, I won't be collecting SSI twenty five years from now when I'm old enough,as I'm only 41 now...but SSI will have to provide for my four children - one of them would need to be supported for 14 years yet -

I don't HAVE a support system. I'm divorced, mother of 4, sole income for my family. There isn't a family member within my state - no folks as they are passed on. The closest thing I have to support would be my co-workers who are holding their breath waiting for me to get sick enough so that I have to give up my position and they can usher in their favorite friend into my position.

Quite simply, my only reason for staying alive would be my children - and I desperately want to be here for them - after they are grown and don't need me, then fine, whatever. But not now, not while they're so young.

I'm rambling, forgive me. I'm just thoroughly disgusted with doctors who don't understand what "care" is - disappearing into the wild blue yonder when their patients are left to flounder about in the dark - that isn't CARE!!

I asked doctor in June if I would need a cat scan - it'd been 1 1/2 years since surgery ..."Oh no!! The cancer is gone! You don't NEED a cat scan! You're fine..."

As if she would make doggone sure no tests were done, nothing would be found that way until it made itself painfully obviously months down the road, when it was really really too late.

Wonder if insurance companies pay doctors to let diagnostics slide, to let patients go until impossible to deny the disease is there - so as to escape the expense of caring -

Sounds awful, I know, but hey, why not? The tobacco companies are allowed to push their death causing drugs because of the money they fork over - it just makes too much money for them to be abolished. And to think - now they are running our food companies!!

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Hi... I just found out today my brother... who had surgery for melenoma a couple of months back now has cancer in his lungs, kidneys, and liver... there are 20 different masses of it in his body! His wife died of breast cancer just last october.. I just feel so very depressed ... its so very hard to remain positive.

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Janet----I also had enlarged nodes my last scan---they were biopsied and all negative for cancer----

do not read anything into the reports----I have spots that appear then disappear and the report also says"suspicious for metastic cancer" next month all is ok---as far as pets and Cats---they will light up for infections---I have had both done on the same day and they both showed something different----has my surgeon scratching his head

so please do not be too alarmed about this---until you find out all the results and have a consultation with the Dr.

regards Eileen

nscl lobectomy 6/00 stage 1A

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Guest Karen C

Janet - where do you live? Your signature says Appalachians. We are in Virginia. I have tons of relatives in WV.

I really feel for you because you have no support system, no one to talk to or to help you through this emotionally. It's hard, really hard, because even if you did, no one really knows what you are going through. I really am a big advocate for counseling, especially in situations like this. Have you seen a clinical psychologist? Can you find a good one nearby?

Let me back up and introduce myself - I am David C's wife, Karen. He was diagnosed in March with SCLC. We just adopted a baby girl from China, last fall. She will be two on September 3. We went through hell trying to have a baby and only had three miscarriages. Consequently I had a severe bought of clinical depression. Not suicidal but close to it (why am I here on earth kind of thing). Anyway, the counseling (plus some good drugs which I will take forever) really helped me. Now we're going through this. Like you, having a child has given him more fight than he would have had anyway.

Contact me directly if you need to talk. You can email me at home at cacres@erols.com and I'll send you a phone number, too.

And remember that prayer is always helpful. God cannot answer prayers that he doesn't hear!

Karen C.

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I feel for you sweetie!!! I have been living with the "big C" for 10 years now. And the lung was by far the scariest.

I remember calling my onc prior to s urgery and asking how often I could take the ativan. At that point I was on Paxil (anti-depressent), Buspar (anti-anxiety) and ativan when I needed a big boost. I remember taking 1/2 and ativan just prior to walking in the door to work -- just enough to settle me for the day.

I also did a lot of emailing test results and consults to friends and family. I'm glad you wrote to us here and are keeping us up to date.

10 years ago I called 1-800-4-cancer, and got some help there. I know that some places provide couseling, and possibly even the phone. My insurance did cover my therapist, who specializes in women and cancer. I had to speak to a supervisor at my insurance to get the okay.

I spent many sessions just crying. And realizing an accident could take me quicker then cancer. That helps me stay focused on the hear and now.

I took a lot of anger out on my surgeon initially. He seemed the easiest to be angry at. I also listened to A LOT of Bernie Siegel's tapes. Some I got at amazon.com

Let us know.


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I talked with pulmonary doctor about this - she doesn't want near this with a ten foot pole. I guess because she didn't find anything wrong when I saw her and she never ordered anything more than an xray.

She told me that pet scans aren't absolute- that when a spot lights up it isn't ALWAYS cancer. I think maybe she says that just to be nice, and thinks it is cancer -

but Eileen, you said infections will light up the PET scans - are you for sure on that? The only thing that lit up were the two lymphnodes - nothing else - I guess cancer could be in two lymphnodes but nowhere else? I mean, wouldn't you expect to see it in a lung or chest wall or something besides just two lymphnodes? If it was infection - then maybe just the lymphnodes - ?? ON the cat scan they did in July, the lymphnodes looked a bit enlarged but doctor wasn't concerned -thought it stemmed from infection of abcess tooth - These that lit up on PET scan are same two lymphnodes I think - I guess there is something going on with them, hope not cancer - could it really be just infection?? if it IS cancer, can't they just take out the lymphnodes since it isn't showing anywhere else? Or..if the lymphnodes are lit up, does that signal there is cancer in the lung somewhere that just isn't lighting up yet??

The PEt scan also showed a hydronephrosis in right kidney just like the bone scan showed a year ago. They did an ultrasound on the kidney and it was fine (a year ago) - but it doesn't drain quite right. I don't guess this is something to worry about, unless there is cancer in the kidney and it is spreading to lymphnodes now -

The one lady doctor spoke as if it were all over now - that it was cancer. The pulmonologist is saying there's always a chance it isn't cancer - (when they say that, it sounds like "There's a .013429 % chance it isn't cancer"!!)....

I would love for it to be a little infection - from the abcess tooth, or the touch of bronchitis, that little tiny cough I had that is now gone- and not be cancer - but what I'm hearing from doctors here is it lit up - and that's like a death sentence......

Are you sure that infection will light up on a PET scan? For real?

I started a new batch of broccoli sprouts last night, and starting a new batch of essiac tea today. Going to juice carrots and cabbage for tonight's dessert, start back on pcynogenols. Am I nuts? Will I just grow real healthy cancer if I feed myself all those healthy things?

Are we nuts to try and do all those healthy things to overcome cancer? I mean - look at chemo - it's poison - they try to poison the cancer to death, and hope the chemo kills the cancer before it kills us - Maybe we should approach cancer the same way - try to pickle it with alcoholic drinks or something - give it a really unhealthy environment to live in and maybe it'd croak.

Marie, Karen, all thank you for your thoughts. I'm just not dealing well right now with the thought of having to die right away. I have things to do, children to hug, scrapbooks to make, gardens to plant, weight to lose, dresses to fit into, shopping sprees yet to go on!! Okay, so maybe I'm shallow but yes, there are days I LIVE to shop !! :wink:

I'm not big on counseling - if I'm that down, then antidepressants will do nicely. Counseling takes time, money - both of which I'm kind of short on .

Karen, I'm in West Virgina. Everyone here still smokes and chews and everyone is dropping left and right. I swear though - those who have smoked forever - and never see a doctor - and cough their heads off every time you look at them - you KNOW they are probably eaten up with cancer -but they never see a doctor and never have this ordeal with surgery/chemo/radiation - and they keep right on going for years and years and years - I'm beginning to believe that the best thing to do is to leave it alone and maybe it will grow very very slowly if left be.


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Connie B,

My heart goes out to you! Please, please, don't think of this as a sure thing yet. I've had several PET scans where things lit up and the onocologist said I would probably have to start chemo. Each and every time it turned out to be false. It even showed something "lit" in the spinal area which turned out to be inflamation from a bad back (I've had back problems for years). Nothing more than that. I sat down with the surgeon who looked at my last 3 CT scans, my last 3 PET scans, and said that it's not cancer. They have been watching a small something or other on my left lung for 9 months now. It has not changed in size. The surgeon said where it is located would only be a 2-3% chance it could be cancerous. He also said if you took everybody over the age of 50 and gave them scans, something would show up. We all have scar tissue and other junk from pollutants and the such in our lungs. But, with careful analysis from everything (CT scans, PET scans, age, previous history) they can usually determine the truth. Even now the radiologist who reads my CT Scan still calls it cancerous and the surgeon ( a specialist in lung cancer at Cedar Sinai Hospital in Los Angeles says, "no, it's not."

So, you see, it's not always what they think. Please stay your positive self! We all love you and will help you get through this. Just remember that waiting is the most difficult part. Keep us informed, Connie B!

Hugs and BEST WISHES..............................

Cathy R

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Guest Karen C

Janet - you sound a little better - see, doesn't it help just to "talk" to someone? I tell you, NO ONE in my life understood all the things running through my head better than my shrink.

And I don't think shopping is shallow, I think it is very therapeutic! I don't have time for it, so now I do all my therapeutic shopping on-line, what fun!

Where in WV? You may know (or know of, unfortunately) some of my family there.

My two cents on PET Scans - Dave hasn't had one yet (but might) but a co-worker of his sister's, in L.A., had one for melanoma (I had melanoma this year so I was in touch with this gal) and some lymph nodes in her thigh showed up hot (her cancer was in her leg) and she had quite a scare but it turned out to be from an infection she'd had. So you never know!

Hang in there, and take me up on my offer of contacting me directly if you need to.

Karen C.

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Dearest Janet,

I've read your posts and all those who have responded back to you, then, with much heartache, i got up from this computer and took a shower. all the while i had you on my mind.

:roll: I sure don't have any answers to your tests but i do know that worrying ahead of time only makes us old and wrinkled. From what some of the responses said, it may be nothing.

why don't you grap up the children that are home right now, get into the car, go to your local McD's or Ky Fried Chicken, pick up a bag full and head to your local park, with ball gloves and bats or just some checkers or whatever and spend a few hours just enjoying your children and to heck with everything else for the day. Be like Scarlet and worry about it another day. God Bless and keep you clean.....

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I'm not Connie - but I hope Connie is okay.

I'm not over 50 - I'm just barely past the 40 mark.

My little cough - I though it was gone - it came back this afternoon - it's done that on and off for a couple weeks now - just a TINY little cough, productive a little but NOTHING compared to when I used to smoke and coughed each morning - but hurts inside afterwards a bit -

So! Either I've got a touch of bronchitis (how? I haven't had a cold or anything for a long time) or it's some kind of cancer thing - I much prefer the bronchitis -

And if that'll make the nodes light up on the scan, far out. What I'm getting from the doctors I've talked to here, is that it MIGHT not be cancer...as SOMETIMES it isn't...but....


I'm not sure why I want to know now, as they have practically nothing to offer the vast majority.

The nodes that are lighting up - they are on the left side of the chest - the lung they cut the lobe out of , where the cancer was, is on the right side - seems like it'd show up again in the right before appearing in the left -

I'll see the oncologist Monday - I hope he has very very good tranquilizers if it's bad news.

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I do know for a fact that a node can light up on a PET Scan for an infection, inflammation, or a malignancy. I have been reading this board for a while, even before I really had a diagnosis, and have seen posts from several people who have had nodes show up enlarged, lit with a pet scan, etc., and they have turned tout to be false alarms.

I can certainly understand the fear you are experiencing. This is my second trip around with cancer--both within the last two years. It doesn't get any easier the second time around. My first was a small malignancy in my left breast which was removed, then I had radiation, and take tamoxifen to try to prevent recurrences and new breast cancers. This spring, at a follow-up with my breast surgeon, he suggested I get a chest X-ray, as I had not had one since before my breast surgery two years. That led to a CT scan, PET scan, and surgery with a 3.1cm stage 1b lung malignancy.

I am fully with Gail when she says therapy and anti-depressant and anti-anxiety drugs help tremendously. I never in my life thought I would have a need to seek psychiatric help, but the difference it has made since my last diagnosis is amazing. I want to live and I didn't want to live on the verge of tears all the time. I now enjoy myself despite all this.

By the way, today was my first chemo treatment--I have had opinions from two oncologists that chemo would be right for me--I had cisplatin/gemzar--took most of the day, but next week and the week after, I only get gemzar (less than an hour). So far so good. I am armed with anti-nausea meds and Immodium AD, but so far everything is fine.

By the way, my insurance has paid for every dime of my therapy. You may want to find out if yours does. Just trying to be helpful--I understand how you feel.

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