Pet Scan Results-Less than stellar

jcortney

Well, the PET is done and every time I read the report it just seems uglier.  Here are some quotes:

Evaluation of the chest demonstrates multiple new hypermetabolic foci that are worrisome for malignancy.  All of these finding could potentially be inflammatory/infectious; however unless there is a clear cut history of such a process, histologic evaluation should be strongly considered.

New hypermetabolic right thyroid lobe lesion has an approximately 30 to 40% likelihood of representing a malignant lesion.

No definite evidence for local recurrence in the region of the base of the tongue; however, small hypermetabolic foci in the neck are highly worrisome for new lymph node metastases.

Well, a hell of a lot going on there, huh?

Now some background.  I do have a history of infectious lung items due to aspiration.  Not too long (1 month) before this pet I had the flu and woke up many times during the night choking on mucous.  So, I may dodge the bullet there.  My MedOnc agrees and doesn't want to do anything about it except CT it in 2 months to see if there's some shrinkage.  He did however give me the choice of just whacking it out or having a needle biopsy.  I'm seriously thinking about the biopsy even though, his comment was "If it's positive, it's definitely positive.  If it's negative, it still might be positive".  I'm also having another swallow survey next week.

I am concerned about the lymph node and the thyroid.  I go to the Ent next week so we'll see where we go from there.  Man, I thought I'd have more time before this crap would raise it's ugly head.

More to come....

Joe

phrannie51

Well....

you DO have a "clear cut history" of infectious/inflammatory.....that was the first thing I thought of when I read that part....you were just talking on here about being sick in the last 3 weeks or so.  As for the thyroid....it says 30 to 40% likelihood of being malignant, but that means there's a 60 to 70% chance it isn't....As for the lymph node....tho now, a swollen lymph node would send me over the top,  I remember that none of us got here until after Drs. had pooh poohed our swollen lymph nodes and gave us antibiotics, because lymph nodes swell more often than not over infection in the body (and you were just sick).  Soooo....tho I absolutely KNOW how upsetting this is for you, Joe.....I can see why the MedOnc wants to do a short wait and see...

Sending positive thoughts......and you're going into my pocket (no protesting because it's linty!!)....Remember, it's not cancer till somebody (in the know) says it is.....

p

Redbanker

It's Just Data With Guesses

No critter on earth is scarier than a radiologist with a scan and dictation software.  We had terrifying MRI results a year ago and stewed until we got to our wonderful rad/onc who ventured that the guy was a little too dramatic and something of a fussbudget. He thought what was showing up was just a byproduct of living in New Jersey.   A year later we went with another radiologist and he said not only were the nodes seen a year ago gone, but that they had not been there in the first place. It all depends, clearly.  Phrannie has it right.  You need the trained eyes and experience of the real expert.  

CivilMatt

good thoughts

Joe,

Let’s stay optimistic about this report.  Your team is on top of things. Right now they are maybe, well maybe it is nothing and that is what I will hang my hat on for now.

I am sorry about the anxiety this crap causes us. 

Matt

Ladylacy

PET Scan

The first PET/CT scan my husband had showed activity in the lungs.  While he was in the hospital for another biopsy and trach, the lung specialist went down into his lungs because they all felt he had junk that needed to be cleaned out.  Well he came out and told me his lungs were clear nothing there.

Fast forward after radiation, chemo and surgery for laryngeal cancer he was NED for about 14 months.  Then when undergoing a procedure for a TEP the specialist couldn't do it because he found a tumor at the cervical of his esophagus.  More radiation and chemo.  Now my husband had his follow up PET/CT scans every 3-4 months after his surgery in March 2011 and no one say anything about his lungs.  Well during a follow-up PET/CT scan they saw nodes in his right lung (small) but they had been growing since his last PET/CT 3 1/2 months before.  His cancer was also back at the cervical of his esophagus.  Our specialist pushed for a needle biopsy even though the nodules were small, the other doctors didn't want to do it.  He had the needle biopsy and it took them 4 tries to get cells, collapsed his lung ended up in the hospital for 3 days.  Bad news it is cancer.  Now he had have a serious lung infection in the past which they thought was lung cancer then, but it wasn't and all his chest x-rays showed signs of the lung infection.

So I guess I'd say to be on the safe side I go for the biopsy.  Today it has been 13 months since we found out.  My husband declined all further treatment, only thing offered was chemo since we were told up front neither cancer was curable.  And we got a second opinion and all doctors agreed with my husband.   He isn't doing too bad but not good either.  Funny thing I note your name is Joe and so is his.

Wishing you peace and comfort -- Sharon

Hondo

Hi Joe

I agree with Matt sometime no matter how bad it might sound the thing to do it to try and keep positive. In 2006 my doctor told me sorry but they did all they could do and he gave me 6 months to a year at best. That was 8 years ago and I am still here, I have a lot of problems and live with paid and a PEG tube. So no matter how ugly it looks there is always hope my friend, glad to have you as part of the family.

God Bless

Hondo

Skiffin16

Dang Reports....

Well hoping it's just the inflammation and your history... While it's always to say try not to worry..., I know it's useless words at times.

I too would opt for the FNA though... The ENT can only see so much..

Thoughts & prayers your way...

John

hwt

Skiffin16 said:

Dang Reports....

Well hoping it's just the inflammation and your history... While it's always to say try not to worry..., I know it's useless words at times.

I too would opt for the FNA though... The ENT can only see so much..

Thoughts & prayers your way...

John

Joe

Sorry you have all of this worry. Within the last week, I found out that my sister, sister-in-law and husband are all having lung biopsies in the next couple of weeks. I took my husband for a PET last Saturday and they put the radioactive crap in an artery instead of a vein and completed the scan. Well, it was useless so had to repeat yesterday. Thankfully, he did not have a reaction. None of them have any head/neck related issues.

My recurrence came at 15 mos. Recently, my primary called and said my thyroid showed low and had me repeat bloodwork, came back normal. Recent CT showed spot on lung but it was felt there was nothing to indicate cancer from it. If you do have lymph nodes affected best that they find them now and get them removed. I was originally told clear margins but biopsies showed my recurrance was same as original SCC. Since I have had 2 recurrences, there are obviously miscroscopic cells out there. The 1st recurrence was around carotid and following SBRT at Mayo, is completely gone. Second recurrence is on opposite side. I just finished 10th tx of Taxol/Erbitux with 2 more Erbitux to go, in an effort to destroy any thing microscopic. Then back to Mayo to zap 2nd tumor. Hopefully, you won't need any further tx. but if you do, I can only say chemo alone has been a walk in the park compared to chemo w/rads.

Prayers that all turns out as false alarm for you.

God Bless,

Candi 

debbiejeanne

joe, i'm sorry you got back a

joe, i'm sorry you got back a less than great report.  i know how worried you will be for the next 2 months.  i wish there was a magic pill to help us all with that anxiety.  jump in phrannie's pocket and try not to think about it so much.  praying for a better report in 2 months.

God bless you,

dj

donfoo

uggg....

Dude,

You and me are in the same class of late 2013. Unsettling is too understated a word to express how you must feel. Tthe bright side is whatever it is, it has been picked up very early and being evaluated by a team you trust. Does not get better than that. You're a pretty cool dude so hang in there until the next visit and get more informed on just what the report is saying and where you stand and what your options are.

Good luck,

Don

jcortney

Thanks all

I definitely know it can be all explained away, just so much of it at once that's giving me the jitters.

Anyway, ENT on Tuesday and Swallow Survey on Wednesday.  After that, I'll have more information.  As for the lungs, waiting three months might be more anxiety that I'm willing to do, though the thought of them collapsing my lung doesn't sound very appealing.

Thanks again for the good wishes.

Joe

jim and i

So sorry Joe. I know how

So sorry Joe. I know how anxious you must be and the thought of waiting 3 more months is scarry too. I am praying all turns out well and for your peace as you await results.

Debbie