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Once more unto the breach, dear friends, once more

Jimbo55's picture
Jimbo55
Posts: 572
Joined: Jun 2010

7 months out and had a PET/CT scan this week which shows a hot spot at the site of the original tumor at the BOT. Not exactly the results I was looking for. After consultation with the ENT, he is recommending surgery to remove the 'Primary site residual tumor'. He doesn't see anything to lead him to believe the hot spot is from inflammation and said he could palpate the tumor. No biopsy as tumor is inaccessible except through a surgical procedure. Surgery choices are conventional or robotic.

It seems that hot spots on post treatment PET's are a fairly common occurrence for folks posting on this board, especially only 3-4 months out, though my doctors seem quite sure this is the real thing. I will be looking for 2nd and 3rd opinions for what steps to take next. It seems to me that a biopsy should be done 1st to confirm the diagnosis.

Ain't this a real kick in the head. Cheers

Jimbo

ratface's picture
ratface
Posts: 1238
Joined: Aug 2009

I just hate that breach when the barrel is pointing at me. Let's turn it around on that small tumor and remove it. Recently at my monthly head and neck group we had a guest speaker who uses the Da Vinci Robot for this and to hear him talk you have to think this machine can get anything out. We also saw a video of it doing surgery. If I had an option, no question I would choose the robot.

Skiffin16's picture
Skiffin16
Posts: 8071
Joined: Sep 2009

I think I would opt for the robotic also....and having it removed. Pet's do tend to show residual early after post treatment. But I would think that sevem nonths out, might be worth investigating further...definitely not the news you'd want. But at least they, you and your team sound on top of things.

Best,
John

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

So sorry to hear your news and can only imagine how you are feeling right now. I agree completely on getting other opinions before making your decision.

I haven't been able to have any operations because of the locations of my cancers so I can't help you there but reading Ratface's post made the robotic surgery sound like it might be the best way to go.

Wishing you the best in whatever you decide.

Stay strong,
Glenna

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

Sorry to hear that Jimbo. I like the idea of 2nd and 3rd opinions as there are false positives so soon after rads. Stay strong and positive.

Bob

mixleader
Posts: 267
Joined: Oct 2010

Hi, Jimbo. I am very sorry to hear of your recurrence. I suspect you must feel scared and discouraged as I know that's how I felt when my cancer recurred. Luckily, my recurrence was near the surface of the neck and was rather easily removed. My docs did not recommend a biopsy of the second tumor because they knew I was high risk after having the previous cancer. And, they said, the biopsy might not be conclusive, so I consented to the surgery to remove it. However, this happened after I got a 'clean' PET/CT so that was crushing news. But, I had the second surgery and I am doing pretty well right now. I wish you the best and hang tough. I am still amazed at all the crap I have been through in the past two years and I am still giving Mr. Cancer the 'one finger salute'.

Roger

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Jimbo,

Sorry to hear this. Hope your 2nd and 3rd opinions will give better results, but even if not, you've got one of the best attitudes I've seen on this site. So if you gotta go at it again, I'm sure you'll turn around and kick this thing's butt!!!

Positive thoughts!!

Greg

DrMary's picture
DrMary
Posts: 527
Joined: Nov 2010

They still involve cutting - I'd go for the removal, as it might be not that much harder to recover from, and you might get the "clear margin" report afterward. I'm always afraid that cancer cells will see biopsies as "look a new door!" and run rampant. Unreasonable, I know, but. . . I'd rather see a benign tumor removed and checked than run the risk of doing a biopsy and then follow-up surgery (and hoping the little buggers didn't decide to branch out in the mean time).

Remember, needle biopsies can miss cancer cells - you really don't end up with more information and you still have a palpable tumor. . .

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

It is called TORS (Trans Oral Robotic Sugery) in Philly. I am an "aye" for the robot. It can get in there and move around unlike any human hand. I also agree with Dr. Mary...might as well cut just once.
Sucks that this is going on. It is what the every 3 month scans are for...to catch it early. We are with you Jimbo.
Kim

Jimbo55's picture
Jimbo55
Posts: 572
Joined: Jun 2010

Ratface, John, Glenna, Bob. Roger, Greg, Mary, much appreciated.

Doc Mary, your post echoes what the ENT explained to us. He would much rather cut it out on the first go and not give the cancer cells an opportunity to spread their wings. And if does turn out to be benign, all the better.

Cheers

Jimbo

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Jimbo,

Man, sorry to hear this c#@p has raised it's ugly head again. Not what you or any of us need. Just do what you gotta do and maybe more. Hit the beast with everything you can. Trip the b#@$%rd up at every point possible. You've got the fighting spirit. Hoping they get a good clean result with the Surgery. 2nd & 3rd opinions good idea.

Scam

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Hi Jimbo, sorry to hear you probably have a surgery to go. Personally, unless a sugery is radical, I would prefer surgery over chemo or radiation, and it doesn't sound like you are talking about a large mass. Kick in the head indeed. I know you are the man to return the favor.

best, Hal

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Sorry to hear this news, man. Agree about the 2nd opinion. Hope things work-out good for you, Jimbo, and the best result happens. Gonna be a heckuva note if what's taken comes back Negative, though. But, if it really is a residual Primary- maybe surgery taking it out would be best. Again, sorry to hear of this.

kcass

Hondo's picture
Hondo
Posts: 5738
Joined: Apr 2009

Remember all my first PET scans for NPC kept showing a hot spot in the same place where the C was, but it was not C again it was the old dead tumor lighting up the scan giving a false positive, doctors did not find that out until they radiated me the second time for nothing. Even when they did a biopsy it came back positive because they were biopsying dead tumor scar tissue.

Don’t let them put you through this hell I live for nothing my friend get another opinion and question the doctor about the old dead tumor still in your head.
Hondo

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Jimbo,
Sorry to hear about your scan. I know the strain you must be under. I hope you get the additional opinions quickly; waiting is so stressful. Easy for me to say "It's probably benign - focus on that, and don't fret needlessly". I hope it IS benign, but I must admit that until I had a doc tell me that, I would fret needlessly (with the full understanding that there is no reason to worry, since worrying never accomplished anything positive, and it would only make me feel worse). My post treatment "iffy" scans turned out to be an issue, but surgery removed the issue. Here's hoping that, if you need surgery, you can get it out of the way quickly and breathe freely again soon.

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