The Colon Club

I did a PET scan on May 24. My oncologist it is too busy to call me, so I picked up my results today.
So , evaluation the chest demonstrate new hyper metabolic lymphadenopathy in the mediastinum and bilateral perihilar regions. A reference 2.1 by .8 cm prevascular node demonstrate SUV 5.3. A difficult to delineate right lower pirates heal focus was trace SUV 8.8. 2 by 2.2 cm right hilar node demonstrate
SUV 7.4.
The liver SUV 2.8, previously 2.3
The report said:
These are concerning for metastases.metastatic disease cannot be excluded.
My oncologist maybe call me after Memorial weekend.
It's look like it is not over , maybe I don't understand this numbers?
It is scary and I don't know what is next.

Tanya I am sorry for your news. It is something we all hope we never hear.

If it is confirmed to be a met. Please consider getting a 2nd opinion at a major cancer treatment center. Regardless of what ever plan your Dr.(s) decide. I've been around for awhile and there are MANY people who have received your news and go on to become NED again. Never give up the hope!

One day at a time,

Lee

Totally. You need another doc to go over the results with you. Trying to work it out on your own will drive you mad. Focus on your breath work and mindfulness and take it one step at a time. That next step is to go over the results with someone who has on the ground experience.

Tanya, I am so sorry to hear this. Praying for you.

If your doctor is too busy to give you important results like this, you need a new doctor.

I hope your doc can explain- I don't understand much of it. I don't know what SUV stands for.
I am sorry you are left to worry about this. If those nodes are positive, i am pretty sure there are solutions: surgery, radiation...
Thinking of you and please update us. Are you doing ok after surgery?

HI tanya,,,,,I never had a pet scan so I'm not good at reading...But I'm from Kings Park too...Check you PM

Sorry to hear, hope all goes well.
Here is some info on SUV

There can be other causes of intense activity such as inflammation, infection, or muscle activity. Measuring the SUV (Standardized Uptake Value) is a semi?quantitative way to assess the activity in a given focus. It represents the amount of activity in the focus relative to the activity in the other (normal) areas of the body. Typically, the SUV value of metastatic lesion is above 2.5. The pattern of activity (the distribution of lesions in the different parts of the body) is also very important as different cancers have different preferential sites of metastasis. Also, patient's history and findings on other anatomic imaging like CT scans and MRI are taken into consideration while reading the PET scans.

Incorrect fasting or eating/drinking prior to PET can cause error also (like too much sugar or caffeine prior, etc). See link below

http://www.oncolink.org/experts/article.cfm?id=1848

You can search for more detailed info.

I found Nik's info very informative. Hope it helps until you review your test with the physician. I have learned after many years that the physician's job is to interpret the findings as they relate to me. Please do your best to stay calm until you have the answers you need and deserve. Keeping you in my thoughts.

Cowgirl918 wrote:I found Nik's info very informative. Hope it helps until you review your test with the physician. I have learned after many years that the physician's job is to interpret the findings as they relate to me. Please do your best to stay calm until you have the answers you need and deserve. Keeping you in my thoughts.

Thanks, I was doing alot of reading up on it recently because of my last scan which showed my highest SUV on one of my liver spots at 2.9. So, I wanted to know more.

Thanks to everyone, it's a good filling, you not along.
Thanks for explaining and support

Hi Tanya,
I'm sorry that you are going through this. Try not to jump to worse case scenario while waiting to hear from your doctor. I think you should be on the phone demanding to speak with someone about your results. Having to wait through the weekend seems unacceptable to me. Be pushy if you have to. I also agree, you should get another opinion. I'm praying for you and hoping your news is better than it seems.

Lisa

I speak with doctor(after I call her three times), she said probably it is metastases but she want to do the biopsy. I ask her my prognosis, she said if biopsy it is positive I have 12-24 months, because it is mean my cancer too aggressive...
I will go to Sloan to see what they said, but really 24 month???
I can't believe that.

Tanya, my heart breaks that you had to hear that news. Keep in mind that she doesn't have all the info yet and even so I have read so many stories on this board of people who have heard news like this and went on to prove those doctors wrong. Please call mskcc ASAP to get in for second opinion. Sending prayers and hugs to you. Stay strong.

Don't know what to say. I'm glad you can get to MSK. I'll hope she's wrong & MSK will fix it.

Oh man- she should not have said that as she doesn't know. Did she talk about any treatment?? Tanya, i am sorry you are going through this but stay focused on what can be done, second opinions etc. They can do all sorts of things these days.