Post treatment PET scan turns up new cancer cells in my lungs

Hello Chill,

I am in North Carolina at Wake Forest University School of Medicine and Comprehensive Cancer Center. We are the #1 Ranked Comprehensive Cancer center in this state, we are ahead of Duke and Chapel Hill.  If you would like I can Private Message you and we can talk very specifics, doctors surgeons, etc. Our head & Neck team is very highly ranked.....

Glad you are in North Carolina!

LitlCJdoll

You as you contemplate these results. I am figuring you had a PET scan before you started treatment and it only showed the area that was treated as having cancer, no spots on lungs. So I am figuring new cancer they are seeing in your lung, and thankfully only one spot may have been there but too small to detect. If there was cancer in the nodes in your neck may be the same case they were too small to show. But you would think the treatment in the area would have cleared all the node cancer. If you don't mind I think I would get a second opinion at this point. The hospitals can share records and see all your scans and history. I am not sure why your docs are ruling out surgery as there are many on here that have had lymph node removal in what they call a radical neck dissection. I myself have had lymph node cancer but mine was not encapsulated in the node and had spread into tissue which made it more involved of an operation. That is the key to if they operate to get the bad lymph nodes out while the cancer is still contained. I can imagine how you feel figuring all that treatment and you would be good. So what we say on here is NEGU (Never Ever Give Up). So stay strong and keep positive as much as possible, and if you can get a second opinion and take heart the immunotherapy these days is very promising. I have a neighbor lady who has been taking immunotherapy for several years. It sounds like you have good docs and that they are very surprised to see this result. My sister also had a small spot on her lung and they watched it for years till it started growing and then used I think a thing called cyber-knife on it which is more accurate radiation. I myself have a small node on my liver and lung they are watching. They may not grow or they may but many times on some of this stuff the docs take a wait and see. Ask your docs if it is possible at all that the scan is wrong. I have heard folks talk on here of scans showing something and on the next scan not. A second opinion would be good and they will match or maybe not. And another hospital may have a different approach as to moving forward. If you can take someone else with you to all doctor meetings you have now and if you get a second opinion and a tablet and paper for notes and record with video and or voice your meetings because we can forget or confuse things in these situations and there is a lot going on. A good app for voice is called just that "Voice Recorder". So I have rambled a bit here but I hope there are some things that help you-Wishing You The Best-Take Care-God Bless-Russ

I had same, HPV+ right tonsil, currently 4 weeks post treatment.

Sorry to hear about your scan, but considering how you toughed it out through the brutal treatment and the medical capabilities these days, I would still remain positive. Like Russ says, NEGU! YOU GOT THIS!

Cancer decided it was boring just hanging out in my throat and decided to show up in my right lung nine years later. I was lucky because they found it by mistake on a CT Scan for a hernia and I only needed five high doses of radiation and it was gone. I am thinking they found yours during the early stages and like me treatment will be a walk in the park compared to throat cancer treatments. A second opinion wouldn't be a bad idea. 

StayPositiveStayStrong

Jeff

went through something very similar. 90 day PET and was told it had spread to my heart, lungs and back of my neck. Was told it was 'very bad' and that they would come up with a plan to delay the inevitable.

15 days later a thoracic surgeon had me retested and the results? ..... zero cancer! Apparently the PET lit up from infection that had since gone away.

I actually recorded the doctor telling me the 'bad news' 

https://youtu.be/zVtAGkZz1gs

Have you had a confirmation test? I hope the same happened to you.

im now 4 years post and life is completely normal now.

Good luck.

Chillg8r I was wondering how things are going with your treatment decisions. I had a Pet/Ct scan yesterday and the spot found on my lung by Pet and Ct scan has grown by 1.9 mils in 7 weeks. The Ent doctor rang me and gave me the good news. He said he will discuss my results at the MDT meeting tomorrow and call me. The report recommended I have a biopsy to confirm and that he was going to make an appointment for me to see the pulmonary specialist. Any info would be greatly appreciated.

There are a lot of hoops to jump through and paperwork and approvals involved with a clinical trial I don't know but I am sure it is frustrating waiting and it drags out a little more.
Then throw in the low blood count and another small delay.
I know where you are at we want to get this done and get cancer out.
You will come out ok and sometimes these delays work for the good not always.
I am glad they are starting Keytruda and not waiting on the clinical trial beyond a certain point.
I also know how you feel when you say you feel great, so did I till I got a sore throat in 2012-throat cancer.
Then a sore spot on the tongue 5 years later-tongue cancer.
Then a year and a half later a sore neck-lymph node cancer-not capsulated in the node starting to spread into my body.
We don't know something is going on and feel fine till cancer affects something enough to let us know.
So yours hasn't let you know yet so hopefully that means they are way ahead of it.
Take Care-God Bless-Russ