Making sense of PET scan report

I had a PET Scan done in July. My report did not provide all of the information that you had in your report. However, I did have a nodule that was 2 cm. This nodule showed up red on the PET Scan which indicated it was probably malignant. I had a biopsy that verified it and due to the size of the nodule, 2 cm or larger, they had to remove the top lobe of my left lung. The PET Scan covered my brain to mid thigh and this was the only red indicator. If you can see your scan that would be a good start to see if there are any nodules or other nodes that show red. During the surgery they collected samples of several lymph nodes and all of them were negative for cancer. Other than the swelling and intense pain for nearly 2 months everything came out OK and I am cancer free. Of course I could not get pain medications after 2 weeks because everyone said that they were on back order from the manufacturer.

Hi Julie (@jcalkins), Seeing these reports can be very worrisome, and a week is a long time to sit and stew over the results. Most of us have been in that waiting game at some point. Try to take a deep breath and take one step at a time. A PET scan is only one step in the diagnostic process. Not all PET SUV activity is cancer. It could be residual effects from the bronchitis or an infection. Your doctor was being cautious in ordering the PET, and that's a good thing. These reports are very clinical, and only your doctor can accurately interpret them for you.

The SUV indicates the level of hypermetabolic activity. Some, but not all, hypermetabolic cells are cancerous. A PET scan (positron emission tomography) identifies areas of hypermetabolic activity.
For reference, the max SUV on my own PET scan at the time of diagnosis was 11. I knew by this point that it was cancer, the PET was being used to confirm spread to other areas.

Thank you so much for sharing your experience with me. I'm so glad you are doing OK!

Thank you for that explanation. Very helpful. I guess I will take a deep breath and wait.

So I’m sure your Dr Google consultation has informed you that SUV is standard uptake value and is a measure of how much glucose a given area or organ or module has taken up. That value CAN be an indicator of increased metabolism in that area/node/nodule. But try not to make any sweeping assumptions because there are scenarios where is doesn’t mean that.

Many of us have been in your shoes and I will just say try to focus on you - meditate, do your yoga - do those things that allow you to center yourself.

My only other strong advice is no matter what you may learn, GET A SECOND OPINION REGARDING ANY TREATMENT. There are a lot of newer and less invasive approaches to treatment that offer options. Make sure you keep your voice in the process. No one else has that voice.
Hang in…

Thank you so much for that encouragement. Yes, I am finding that the best course of action right now is staying well by keeping to my routine of mediation, and connecting to my emotional support people who help me not go down endless stupid rabbit holes that are a complete waste of time.

I do appreciate the encouragement to get a second opinion. We live in a small rural community and this pulmonologist is the only one... But has a very good reputation and the "whole robotic" set up. 😂 . Still I think it is going to be necessary to travel a few hours to the big city to make sure I get the best I for before I make any decisions.

I get that. I’m from a small town myself.

I second PB50's advice about a second opinion. I recommend identifying a large center where they have high volume and experience in lung cancer etc. Have them review your scans for diagnosis. A doctor in a small town just does not have the opportunity to see the variety of cases. I am from a big town, and I still had to change my first Pulmonologist. I read the CT and PET scan reports, and they mentioned potential cancer. Her described major interest was asthma. Specialists have subspecialties and one wants to find the one who is expert in the area important to you. Important to check the background of the Specialist to see where their expertise is.

It seems this spot has been around for 15 years and it is now about 1.7 by 2.0 cm. Do you remember how large it was 15 years ago? It seems to be slow growing. The SUV of 2.6 is low which makes sense for a slow growing spot. Usually 2.5 SUV is the cut off for suspecting cancer in a lung nodule. I am not sure about the node SUVs they talk about.

I had lung cancer 23 years ago which a huge 10-12 cm tumor on my right lung. I had a thoracotomy and they removed 2/3 of my right lung. Very painful. Very scary. I was only 46 so I was strong and recovered well.

All was OK for the next 21 years, then two years ago I had a new spot in my left lung with 4.4 SUV. We were pretty sure it was cancer. They were able to biopsy it to confirm. It was the same kind of lung cancer I had before. No way I was having another thoracotomy plus I didn't have much lung tissue to spare after the first surgery. So I had this tumor zapped with 2 days of SBRT radiation treatment. After the SBRT treatment, it took about a year for the cancer tumor to go away. It is now gone.

About 9 months ago they found a new spot on the remainder of my right lung. I have a CT scan every three months to check it. It can't be biopsied without risk of lung collapse. It had a 2.7 SUV. It has stayed about 1cm for the last 9 months although if they show the last 3 ct scans right next to each other and we squint our eyes it seems to be growing very slowly.

So what to do about a slow growing spot with a low SUV like this? Because I am about 70 and because I have shortness of breath already from previous surgeries, we have opted to keep watching this spot. There is a chance that I won't need to treat it. I am hoping that it will peacefully co-exist with me for the rest of my life. On the other hand, should it start growing again then I will need to treat it with more SBRT or an ablation technique. Even though it has a low SUV, it most likely is the same cancer I've had for the last 23 years.

If I were younger or had more lung tissue then I'm sure they'd treat my newest spot immediately. Not sure what your age or physical situation is. The two nodes that lit up on your PET seem to be concerning too. I don't have any nodal involvement showing on my PETs.

So it is hard to know what to do. I can tell you that instead of a thoracotomy like I had 23 years ago (major scar and pain and risky surgery), they often can now do something called VATs which is laparoscopic surgery leaving smaller scars and less recovery time. Also supposed to be less painful.

@yellowstonelady- Hello. I've just celebrated 26 years of lung cancer survival. I had my third SBRT last October, and they aren't sure what they'll do if another zapping or something else. I have also lost a lot of tissue. I hate that it limits me at almost 77 and still kicking.

Things have changed so much in the treatment and discovery of lung cancers. Sometimes nodes just act up to keep us on our toes, it could be inflammation and nothing else.

I think that waiting another 3 months for a CT scan is a conservative thing to do now, don't you?