Pet Scan Results - Looking for layman answers.

Welcome to Mayo Connect @lori7034. While the members on Connect are not doctors or medical staff, many of us have been through what you are going through. We know how stressful this time can be, and it's normal to be scared.
PET scans show metabolic activity. Cancer, infections, inflammation, etc. are metabolically active in our bodies. The standardized uptake value (SUV) shows that level of activity. The uptake on one of your lymph nodes is concerning.
Quitting smoking can only help you going forward. That's a big accomplishment.
What type of doctor are you scheduled to see? Pulmonology? Oncology?
Does your medical center offer an appointment waiting list where you may be able to be seen sooner? You may want to call and see if there are options for an earlier appointment.

@lori734, take a deep breath. Any mention of the possibility of lung cancer is scary for sure, but it's no longer a death sentence. I've been living with Stage 4 for 3 1/2 years, and no one can tell unless I mention it.

The most recent research I've seen indicates they won't even treat a nodule under 1.0 cm, so these are very small nodules you're referring to. An adenoma is benign.

The fact that your doctor's visit is scheduled for a month from now indicates your doctor is not overly concerned. Is your doctor an Oncologist? If not, you should spend your time finding the best in your area. I've moved since my original diagnosis, so I had to go through finding one in a new part of the country. I've always started my search with healthgrades.com.

If you're comfortable with research, you can really dive in by going to iaslc.org, the website of the International Association of Lung Cancer. Click on "Research & Education" and then "Lung Cancer 360," where you'll find papers, courses, and over 200 podcasts. My Oncologist and I use this resource to keep up with the current lung cancer treatments, diagnoses, and research. I'm starting as a patient research advocate, providing the patient/caregiver/public perspective to lung cancer researchers, and I've been a patient advocate for several years.

I've just got to say, take anything you find in a general Google search with a huge grain of salt. I stick to the recognized medical authorities such as Mayo Clinic, Cleveland Clinic, MD Anderson, Johns Hopkins, and the like.

I'm not an Oncologist, but I don't believe your diagnosis is urgent. The mediastinal is the only one I see to keep aware of. The mediastinal region is in the middle of your torso, about halfway between from and back and between the lungs. It's a crowded region.

I always think it's a good idea for patients, myself included, to keep in touch with our doctors. If you're concerned, they should be the first person you turn to. Good doctors are as concerned with your mental well-being as they are with your physical well-being.

Thank you for the response and kind words. I am seeing a pulmonologist and am scheduled for a bronchoscopy on May 6th. This was scheduled prior to the results of my pet scan, which was scheduled after my doctor saw my CT scan.
I’m really concerned about the lymph node as it wasn’t there in my CT scan from one year ago.

Thank you for reminding me to take a deep breath and the advice on Dr. Google. I am also suffering from a tremendous amount of guilt and regret for smoking both cigs and pot for many years. Thought I was invincible and didn’t really care what happened to me. Now I’m 64 and wanting to live life and this happens. So the emotions are all over the place.

I was referred to a pulmonologist after my low dose ct and ct with contrast showed the nodules had grown since my last ct a year ago. I met with him and he scheduled a bronchoscopy for the first part of May. Since I met with him last week, I have had a PET scan and received the information stated above. I haven’t talked to him since the results of the PET scan were complete and I don’t know if those results would change the need for the bronchoscopy.

Thank you for the research info. I will definitely check that out and avoid Dr. Google.

@lori7034, I can certainly relate to your feelings. I was first diagnosed in 2018 at age 58 after smoking pot almost daily for decades. I smoked 2 packs of cigarettes a day from when I was 21 until 28, but then I moved to another state and didn't smoke after that. There is no history of lung cancer in my family, so I was shocked when I learned I had nonsmokers lung cancer.

If your pulmonologist hasn't recommended an oncologist, personally, I'd start looking. A pulmonologist is a lung specialist and will be familiar with lung cancer. However, an oncologist specializes in lung cancer. The world of lung cancer diagnosis and treatment has been changing ever faster over the last 10 years or so, and it's practically a full-time job just trying to keep up with all the advancements as I'm learning myself! Another sign of how fast it's changing is the fact that my Oncologist is pursuing a plan that maximizes the odds of my progression-free survival (PFS) for another three years because who knows what new treatments will be developed in that time.

I was lucky that my Hematologist was also an Oncologist and, in fact, the Head of Oncology.

I agree with Lisa that the uptake on that one nodule is attention-getting. But, again, we're not Oncologists. And kudos to you for regularly getting low-dose CT scans! Since fewer than 4% of eligible patients get screened nationally, you're already ahead of the game. If you do have lung cancer, catching it early is the key to long-term success.

I wish you all the best. Now, this 6-year survivor has to go outside and cut down a few tree limbs that broke in the last storm and plant a few azaleas. It's a beautiful Spring day here in the Tennessee Valley.

Thank you for the words of encouragement and signs of hope. I really needed that. I'm calling my pulmonologist tomorrow to see about a referral to an oncologist since the PET scan did confirm a cancer diagnosis. I'd rather jump on this now than wait until the bronchoscopy in May.

Thank you for taking the time to respond. Enjoy the beautiful spring days. Ours are coming on very slowly here in Oregon.

On my 8th yearly CT scan for lung cancer at our local hospital they found a few tumors on my left & right lungs.

I went to the Mayo for my biopsy & treatment and now my 3a lung cancer is 100% cured. 1st step was to use radiofrequency Ablation on my tumor, next I had two rounds of Chemo & immunotherapy. The last step was the removal of part of my left lung to prove the cancer was cured. I could of got by without the surgery but it was the only way to make sure I was cured, the Mayo said.

After my lung cancer was 100% gone the Mayo wanted me to start on a year long course of treatment with the "as seen on TV" durg Keytruda but my insurance company said no because I no longer had any cancer. Sometimes they don't know when to ease back on the treatments...

Wow! Congratulations on being cancer free. That gives me so much hope. I just pray that we have found it in time. What was the timeframe for you from discovery of the tumors to being cancer free?

I was scheduled for the first of two knee replacements on April 1st. I’ve put it off for five years because my dad lost his leg after knee replacement. Had to quit smoking two months before surgery, finally worked up the courage to do it. Thought I would get my annual lung test out of the way and that’s when they found the nodules. Needless to say surgery cancelled, I can’t hardly walk and now I don’t know how this cancer is going to affect my ability to have knee surgery. It’s been a rough couple of weeks. I appreciate all of the positive comments received on this forum.

Can you tell me about your chemo and radiation treatments?

@mrnootz, I've been cancer-free 3 times since my original diagnosis. I use the exact same words, "and I was cancer-free!" every time I mention it in my lung cancer awareness / pre-screening presentation. I hope it's true for you. Are you still going to be tested/scanned? If so, how often?