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Pet Scan Results

cureitall66's picture
cureitall66
Posts: 837
Joined: Aug 2012

Loved one had his first Pet Scan done to see what direction we need to go for treatment. According to the Surgeon base of tongue & neck appeared to be only "hot" spots, but she said she is not a Radiologist and he would confirm. After Radiolgist reviewed, saw a hot spot in stomach. Said it could be gastritis and needs to see specialist and do a scope. Has anyone had the cancer show up there? We are worried now.... thought it was just in the local area of neck and tongue.

D Lewis's picture
D Lewis
Posts: 1518
Joined: Jan 2010

No experience here. This type of cancer will typically metastisize to the lungs, rather than the stomach. It's not cancer till the doctor says its cancer. There are a lot of reasons for uptake and hot spots.

Deb

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

Lot's of reasons for hot spots...it's always easy for us to say "try not to worry" but we all do ...however, as Deb put it best, it's not cancer until they say it is and it's not a common area of this type cancer for mets that I have read, but I am no doctor and I am 8 months out from my last radiation ...

Whispered a prayer it is only in the head and neck :)

By the way ..I was base of tongue with one lymph node HPV+ ..so your loved one sound similar to mine.

Best,

Tim

cureitall66's picture
cureitall66
Posts: 837
Joined: Aug 2012

Tim,

Yes, it is the same as yours. Lft side base of Tongue (primary), with 2 lymph nodes in Lft side of neck (first discovered), and HPV+.

Just makes me sick to my stomach. I did read HPV/stomach can happen. Hoping that is not the case here.

He goes to the specialist Thursday then meets with Rad/Onc Friday.

Thank you for the prayers. This is so tough and scary emotionally.

cureitall66's picture
cureitall66
Posts: 837
Joined: Aug 2012

In all the research I had done I never once came across the association with stomach. But then today after this report I googled HPV/stomach cancer and got a couple hits. Seems it can happen. I'm not sure how good the sources are.

I think at this point, I'm going to stop researching and wait it out until the scope is done Thursday. The research is making it worse.

I will take everyones advice and know that this is just a tool to locate any issues. Praying this issue is not cancer.

Thank you so much for the encouragement.

D Lewis's picture
D Lewis
Posts: 1518
Joined: Jan 2010

No googling allowed.

Deb

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

Don't get ahead of the game.....

You have talked to me and know my history.

Yes, it could be anything, then again, it could be nothing.

When I was Dx with STGIII Tonsils Cancer and the tonsils removed. They did a PET scan within a week or so of the tonsils coming out...base line I guess, and also to determine if I had anything else going on I presume.

I remember that I was so upset with knowing I had cancer, and also a lymphnode had popped up that wasn't being targeted specifcally for Tx.

I remember having bad stomach pains and cramps... I was lying on the PET thinkng, well if I do have something else going on, at least the PET will show it.

And it did......it lit up just like the residual from the tonsils, and the lymhnode which was still active.

So back to the gastro-specialist...

Another colonoscopy and endoscopy....

He found it...., it was diverticulitus.

I guess from being so upset, nerves, whatever, the innards were inflamed, LOL...

Anyways, the magic cocktail of drugs for that, and a few weeks later the rest is history.

Never had any problems with that before, not since.

Sooooo, my point being...it could be anything, and from my history on here, probably not cancer.

Best,
John

cureitall66's picture
cureitall66
Posts: 837
Joined: Aug 2012

I got your message later today. Thank you for sharing this. Just wasn't expecting a "hot spot" to show up. But, I guess we can't assume anything. Hoping this is a minor issue/setback.

Can't wait to get this step past us so we can move to the treatment.
We're trying not to think the worst and trying to also remain positive.

What a ride so far...

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

Just remember the PET is a tool... The MD is the expert, he will determine or investigate further.

All hot spots aren't cancer as I and Matt mentioned. It just shows high activity, infections, residual, and things other than cancer also show up.

Best,
John

cureitall66's picture
cureitall66
Posts: 837
Joined: Aug 2012

Thanks again John!!

We need to remind ourselves of that tool over the next couple days...

I sent you an email too.

CivilMatt's picture
CivilMatt
Posts: 2803
Joined: May 2012

cureitall66,

My PET scan pinpointed the cancer on my neck and base of tongue and also showed something going on in my colon as it turned out (following a colonoscopy) it was diverticulitis and no cancer. I also have acid reflux which required an endoscope. Also, had to have approval from dentist that teeth were ok (required by radiation oncologist). After everybody agreed on the neck and tongue being the “pot-of-gold”, surgery was performed (very successfully) followed by a full round of rads and chemo.

Sounds like they are dotting there I’s and crossing their T’s to make sure (you and they are ready) and firm up their plan. Tell loved one to try and relax, be strong and be ready because this show is getting started and the sooner started the sooner end.

Best,

Matt

cureitall66's picture
cureitall66
Posts: 837
Joined: Aug 2012

Matt,

Indeed we're thankful for the detail that is going on. So hard to hear of another issue and hoping to God it's not another spot of cancer. He's had diverticulitis in the past, but since that's in the lower intestine, we aren't so sure that is it. The ENT (surgeon) specifically said stomach. Don't know what could cause a "hot spot" in the stomach. HPV is mysterious also...so kind of scary.

Going to GI on Thursday for scope. Hoping for some answers that day. Not sure if they will biopsy or what.

Hard to keep focused on the next steps with a hoop like this to jump through.

Thank you so much for sharing your experience with us. What a blessing it is to have people on this forum that care so much to share this with and understand. The fear is so great and the words provide comfort.

Will keep you all posted...

nick770's picture
nick770
Posts: 195
Joined: May 2012

Thanks for the updates, here's hoping it's just a hotspot and nothing more.

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

We are going to have to suspend your Google privledges for a few weeeks if you keep looking for things that you need not look at for now, LOL....

Are you a closet Googler.... :)

JG

Barbara B
Posts: 40
Joined: Sep 2012

My husband also had right side BOT with one lymph node and a hot spot that turned out to be diverticulitis. He also has acid reflux.

I have to echo everyone else here, take it a day at a time.

Praying it is isolated...Barbara

cureitall66's picture
cureitall66
Posts: 837
Joined: Aug 2012

Yep...just removed it from my favorites....for awhile. : )

cureitall66's picture
cureitall66
Posts: 837
Joined: Aug 2012

The small hot spot that was seen before treatment started ended up being nothing. The endoscopy procedure showed nothing unusual as well as the biopsies showed nothing. We are happy with this news and wanted to share.

So for those of you who get scared over hot spots, I hope this helps to ease some of your minds that it doesn't always amount to anything.

Positive thoughts still moving along here...

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

My lungs lit up during a pet and found it was caused from old pneumonia.

Hard not to worry but lots of reasons for optomism.

KareGiver
Posts: 289
Joined: Apr 2011

Hard not to worry, but do your very best ! (easy for me to say ;) )

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

We told you so...., LOL.

But it's always good to be pro-active.

Best,
John

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