PET scan results :(

[Jenniferp2122]

hi everyone- my dads pet scan results were just posted on the portal. Wasn’t exactly what we wanted to see / hear. He is BRCA2 positive and has been on Ibrance lupron letrozole and xjeva since June of 2022.

no organ involvement on his PET scan and stable bone lesions but it does say: “developing right retropectoral soft tissue area”

His SUV max for a lymph node in that area is 5.6. The other two spots are SUV Max of 2.3 and 1.9. All in the right pectoral chest area. Do you have any ideas as to what would be next for treatment? Really in need of some calming words right now

[jersey-jazz]

My calming words to you are that the cancer doctors are so wonderful. They will prescribe and you father will take the medicine. Everything will calm down. God bless you for taking all this on yourself!

[Jenniferp2122]

I also wanted to follow up with this post that my dad did have some potential chest infection. He was coughing up yellow phlegm from a cold/ cough he caught from my mom. Has anyone’s PET scan results ever been skewed or showed progression from an upper respiratory infection?

[13plus]

Jennifer, the portal access for us all is convenient but then the downside is this very situation. Most of us are lay people when it comes to medicine, and we're trying to read and understand these reports because that's our nature to get the answers asap. The trouble is we don't have the training to understand everything in them, and can often unnecessarily panic when we assume something is bad news. Please wait until you have heard from his doctor. I don't know what the bit about the pectoral muscle means but in my humbke opinion those SUV levels are not enouhg to be alarmed about. I had spots that were above 5 SUV my entire time for the 3 years I spent on iBrance. Try not to stress until you have the solid facts explained to you

[NShaft]

Most of the time PET results are read and interpreted in relation to previous scans. Dr look for trends. No new Mets or involvement of organs is a good thing. Not sure what the other means. My SUV sometimes goes up and down. I have had radiation to quiet those spots and stayed on the same med. My onc told me that the downside of PET scans is that they are so sensitive they show areas that may not be a concern yet. SUV if 2.3 and 1.9 is pretty low.

[Jenniferp2122 in reply to NShaft]

Thank you so much. Ever since you radiated those spots how long have you been on the medication for?

[NShaft in reply to Jenniferp2122]

The first rads helped me to get almost 2 years. I ultimately had progression after 4 years on Ibrance and am on Orserdu since I developed the ESR1 mutation. It is usually better to stay on each med as long as possible. Of course each case is different. You are doing what you should by asking questions and researching.

[Jenniferp2122 in reply to NShaft]

I hope they suggest this for my dad. Thank you very much