lung pet scan hot spots

[gloria1951]

I'm a healthy (cept for one basal cell skin cancer episode, fibrods, & molar pregnancy 15 yrs ago), 54 female, nonsmoker, with no respiratory symptoms (and can't recall having any such problems, like pneumonia).  As a fluke of a January stomach CT, a 2.5 cm mass was observed in my lower left lung.  This was confirmed with a March lung CT, along with other lung masses.  An April PET scan showed uptake in numerous regions including the left lung base above the diaphragm (SUV 3.5), mediastinum (6), periaoric or left hilar (6), lesion along the aorta (5.4), left suprahilar location , thoracic inlet, right paratracheal location (3).  The lung specialist is referring me to a cardiac thorastic surgeon, to perform a biopsy, starting with the top lymph node, and working down, employing VATS or through the chest wall, if that is needed to reach lower lobe mass.  I got the impression that if the top areas are cancerous, they just may quit the surgery and regroup.   I know from this excellent forum that PET positive nodules can be false positives, due to numerous other conditions.  But can PET positive lymph nodes also be false positives?  Should I be preparing myself for a cancer diagnosis?  and me, a nonsmoker!?  I would appreciate any guidance you can provide, like what questions I should be asking, what options to consider. Any hopeful comments especially! Thank you very much!  Gloria

[National Jewish]

From the information that you provided it sounds like lymph nodes as well as nodules were positive on your positron emission tomography (PET) scan.  In addition to cancer that may have spread from somewhere else, this could be lymphoma or sarcoidosis.  Please read our sarcoidosis information at http://www.nationaljewish.org/disease-info/diseases/sarcoidosis/index.aspx to learn more.

[usnvet]

gloria, i heve commented on this before.my situation was simular 3 yrs ago. one nodule in each lower lobe.had a pet scan and showed 3 hot spots in lungs and one in my neck.had neck biopsy first as it was easier and it was negative. then had lung biopsy which also came back negative. 3 years later i am still here.i have some lung problems(bronchitis shortness of breath inflammation which nothing i take seems to help. point is it may not be cancer,only tests will tell, and a biopsy is still the gold standard,that is what my doctor at sloan kettering cancer center told me. good luck and try not to worry. keith

[Grand Rapids]

Gloria - I can't provide you as much information as Keith did but I recently had a PET for 2 nodules that were found on my CT.  In preparation for that, I did a fair amount of research and found that hot PETS do not always mean malignancy. Here is a list I found for false positive readings.

• Granulomatous disease
•       Infections
• Recent radiotherapy
• Inflammatory process
• Repair process
• Recent surgery
• Injection site and lymph nodes proximal to injection

I also learned that malignancy scores are more typically:

Squamous carcinomas (score 11)
Adenocarcinomas (score 9)

There is a Bronchioloalveolar Carcinoma (BAC) that shows less uptake (score 3.5), but what I found is that these generally are slow growing and appear as solitary nodules.

My PET came back cold and I am very grateful for that.  I know you must be worrying about this.  When I was waiting for test results, I spent a lot of time trying to educate myself as much as I could with all the resources the Internet has to offer.  I also changed my diet, began drinking tons of water, and taking a regimen of vitamins.  Exercise helped me keep my mind off it.  And I began praying a lot more.  I believe God answered those prayers.

I wish you all the best and I hope you keep us posted.

God bless,

Tom

[gloria1951]

Tom and Keith, thank you very much for your comments!  It's information like this that gives one hope and helps get through the days before getting final word.  I guess what I'm especially confused about is lung masses/nodules versus lymph nodes.  I know that lung masses can be caused by other things - Tom gave a comprehensive list.  But can a lymph node go "bad" for these same reasons?  What I fear is that lymph node involvement means that something bad has spread into existing body parts and the fact that lymph nodes showed up on the PET scan means a higher probability of cancer.  I have a fine needle aspiration of the thyroid schedule for next Monday now- so I might hear those results before the surgeon goes on his exploration of my lung!   thanks again!  Gloria

[Grand Rapids]

Gloria - I read NJC-R.N.-DC's answer to your questions and that this could be lymphoma or sarcoidosis. I suppose sarcoidosis would be good news at this point.  I think it's like Keith said, the only real way to know is through a biopsy, which you said they had scheduled for next week.  As I said before, educating yourself on these subjects will help immensely.  And keeping a positive attitude really helps.

And with all that said, miracles really do happen.  My wife was at a wedding shower just last night and there was a lady there that told her she had been diagnoised with cancer of the mouth, based on a biopsy.  It was a tumor nearly the size of a golf ball on the roof of her mouth.  After preparing herself for surgery and then chemo, the doctors told her after it's surgical removal that it was completely benign.  The doctors were shocked.  She said she had prayed for God's healing and she believed that's why she had such a wonderful outcome.

I know of other stories similar to this.

Your biopsy may come back negative and I pray that it does.  If it's positive, you can still beat it, especially with His grace.

Please keep us posted.

Tom

[Jane1]

Hi

Can you talk to the specialist about Sarcoidosis possibility before they do an invasive biopsy? I was Dxg with sarcoid 3 years ago and just recently received the all clear, after a bronchoscopy,and some tests they ran on it and full blood tests , I was in a position to hope that my Sarc was burning itself out, but 3 years ago I was in a similiar position to you where they believed the lymph nodes swelling and scars on my lungs were secondary cancer.
I had a needle biopsy then which I'm lead to believe isn't as invasive as an open lung or Vats.

Can you talk to them about possiblities before they do the procedures?

Jane

Hope it works out.

[gloria1951]

Better news from the cardiothoratic surgeon than I expected!!

He found the "christmas tree" lit up results of PET scan of lymph nodes, especially around windpipe,as mysterious, as he can't see anything abnormal on the CT scan (they were not enlarged, etc.).  He doesn't plan to cut and dice for them, at the moment, and believes they are false positive. Said if these were all cancerous like the signals show, I should be sick as a dog.  

However, the mass in the lower lung lobe is too large and too irregular to not make a 100% confirmation of its nature.  (although he said "if I was a betting man, I think it is not cancer...).  Unfortunately, it's in the absolute worst position to explore with outpatient tests.  He plans to try VATs (video assistive technology) with 3 small incisions, one for camera, other for instruments, but where it is located (on top of the diaphram?), it may be hard to manipulate the lung lobe to get it removed.  Plan B is to make an incision on the side and go it for it.  Plan C is to take the whole lower lobe out.  So, unless the fine needle biopsy next Monday on thyroid is cancer, perhaps there's light at the end of this tunnel!!!!  He was optimistic, yet warned me of complications and uncertainties.  Surgery should be at the end of this month.  Thank you all for your support!  I'll keep you posted!  gloria
PS  Turns out this doctor had my (now deceased) father as a Biology prof at a small private college for his undergraduate degree and has fond memories of him!  "It's a small world!"

[usnvet]

that is encouraging news!my thoracic surgeon has said he has seen inflammation do this. all the best gloria and keep us posted. keith

[Grand Rapids]

Gloria  -  That is GREAT news!!!  I pray the biopsy provides the same assurance for you.  Since they discovered my lung nodules, I have learned so very much, particularily that the majority of them are not malignant.  Mine of all things appear to be from coccidioidomycosis.  A month ago, I never heard of it, and now I can spell it.  Lol  

I do hope you will keep us updated and we'll keep praying for you.  He does hear us.

Tom

[gloria1951]

I'm home!  late wed aft: surgery, thurs: off oxygen 8am, suction off chest tube later on,  Fri: chest tube out, Sat: came home, Sun: off narcotics.  They couldn't use the camera-VATS-- less invasive procedure, and had to do open lung surgery.  Now have a long scar on my back and they had to "open up ribs some" (and I don't want to know what THAT means!)  

They were able to take out majority of mass and decided it was not cancerous and didn’t explore other PET hot spots.  To date, the pathology report shows pulmonary histoplasmosis.  According to web it's a fungal infection (common to midwest river valleys) from breathing spores from bird droppings, contaminated soil, bat areas, etc. - which I've been exposed to ALOT being the daughter of a field biologist, but not at all the past 40 years?!  So, could this have been in me all my life, explaining why I had no recent respiratory symptoms?  If so, I question whether I should follow the “treatment”, going on "Itraconazole" for six weeks that could hurt the liver?  I'm beginning to think that I could have lived dumb and happy if they had never seen this mass on a belly Ct scan!  What I don't want to do now is make matters even worse if I shouldn't be taking this medicine.  

Thanks for keeping me in your prayers!  Gloria

[Grand Rapids]

Gloria  -  OMG…. I hope everything is going well for you.   The last you posted before this, you said you were going for a thyroid biopsy so it’s a bit of a shock to hear you had open lung surgery.  And then only to find histoplasmosis.  That is very scary that something like that can happen.  I am totally surprised that they had tested you for histo before they did surgery.  Your post didn’t say, but it doesn’t sound like they took the lobe out.  Please keep us updated on your situation.

Tom

[Lily40]

I am 40 years old and a smoker for 27 years.  I just quit.  Anyhow, CT Scan showed a 2cm lesion and inflamed lymph nodes in right lung.  PET Scan came back positive.  I have a biopsy scheduled for Wednesday and I'm insanely scared and going through the internet to find out what is the liklihood that positive may mean anything other than cancer.

[MICHELLE66]

A related discussion, WHITESPOTSONLUNGS was started.

[nanabowen]

A related discussion, positives on pet scan was started.