1st PET Scan Post Treatment - not NED

Steven,

I am sorry to hear your report.  A number of members have had similar occurrences and it turns out good for them.  You can do it, just take it as it comes.

Best of luck,

Matt

Steven, I had the same experience. I had 6 1/2 weeks of radiation for stage 3 tonsil cancer and the 1st pet scan 4 months post radiation showed hyper activity with the involved lymph node. I got conflicting interperetaion from radiation oncologist and the radiologist, possibly scar tissue and possible cancer left respectively.

I opted to wait another 5 months for a follow up pet scan which showed the hyperavtivity was all gone.

I am sure you will have the same experience. You will be in my prayers.

Arman

Hi Steven, 

I am sorry to read your post.  I have been stressing out a couple days myself.  I have a spot in the back of my tongue, which ENT said yesterday doesn't look light cancer, but we are going to monitor it.  I am 8 months out of treatment, having had 2 clean scans and 1 clean exam.  But I just feel the anxiety of recurrence will never end.  I feel mentally exhausted.  I am thinking about you and hope the biopsy comes back negative.  Hang in there.  Cancer does suck.

I'm sorry to hear this. Hoping it's just a reactive node. Hang in there.

Not making light of any situation, I absolutely understand the concern, Im positive everyone here does. I swore after my diagnosis I had cancer in my foot, lungs, eye, etc. You name it, I most likely told the Onc I had cancer there. No joke. He was very patient with me and kept reminding me it would be exceedingly rare that another tumor was present so close to my last scan (like a month) that I could actually feel. Doesn't mean it can't happen but I do feel a tad silly in retrospect saying I may have toe cancer...anyway, physical exams and future scans are your friend. I don't mean to start any dissent but I will say I trust a needle biopsy about as much as I trust Santa to bring me a million dollars this year. A surgical biopsy or gland/tissue removal followed by labs should be 'the defacto' standard for determination. I say that after a horrible biopsy experience in January came back normal followed by a cancer diagnosis in March once my saliva gland was removed and sent to lab. Not trying to scare anyone, just saying needle biopsies and imaging, in my opinion and experience, they can both be coolmpletey mis-leading if not wrong. Think of radiology imaging kind of like the ENT looking at your throat. Sure they can tell its irritated but with out a swab of throat material to culture, you won't know for sure if it's strep. Hope that made sense. Mostly I sincerely pray that it's nothing. I know this sounds odd, but even if it is positive, take some comfort in that it is in a treatable location. I'm just 3 weeks out from 35 rads and like most everyone I suspect, waiting to see if there is another shoe to drop. Gods will be done.

Much love

-PC

Oh Steven, I'm so sorry to hear this.  Been thinking of you and wondering how you were doing.  I am 10 weeks out of rads, and dealing with the usual stuff that comes up. Going for my first checkup at MDA the second week in October.  Their plan is a CT Scan and not a Pet Scan because they said it could show activity when it fact its inflammation in the area. I hope yours is just that.  Also, I don't have any confidence in needle biopsies as mine came back negative, and even the Pet Scan was inconclusive, when in actuality, I did have cancer. I have had needle biopsies that came back positive in the past, and lo and behold, surgery and biopsies were negative for cancer.  I sincerely hope this is the case and it's not another round with the Deamon again.  I feel for you :-(.  Take care and lots of positive tboughts and prayers coming your way. 

stevenpepe said:

I met with my doctor first on

I met with my doctor first on Monday. The results arrived in my portal on Wednesday. Thank you for the prayers!

Ah, I got it. I was messed up on the timeline. Still praying!

Steven, I am sorry you didn't get the much desired 'all clear' on the first scan. My first scan still showed some activity in a different  area, and so did the second one three months later. It was determined to be inflammation and the next two scan were clear. I hope that will be the case with you. You are in my prayers. 

Stg IV-a base of tongue, induction chemo, concurrent chemo radiation and a PET scan 3 months after the last rad, at first the RO said that the scan looked good with minor uptake that they felt could just be monitored, though the tumor board recommended a selective neck dissection.  Had the surgery, pathology noted minor, weak, inactive disease.  Next PET 5 months later, my expectations were that it would be clear, not so - new uptake values and areas not previously seen on the last PET. 

A second selective neck dissection, pathology showed ALL of the suspicious nodes to be simply scar tissue that was still healing. 

I feel bad that you're going through this again, but there is the possibilty that the biopsy could come back negative.  After all, its not cancer until they say it is.

Hang in there