PET SCAN

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Cherie
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Location: New Zealand

PET SCAN

Postby Cherie » Tue Jun 16, 2015 3:42 am

Had my first Pet Scan and got the results today.

The only thing they said of interest is "Small nodules within pelvis and omentum 252/392 are suspicious. However, none of these are significantly hypermetabolic."

WHF does that mean??? My Ct was clear now I have 392 possible areas of growth??? At christmas when I saw the photos there were about 10 areas the surgeon could see.

I'm so confused.
36Yo F
2000 UC
2013 Stage 4 CC 15/126 LN spread to the omentum
June Collectomy all visible cancer removed
July Folfox + Avastin
2/14 clean scan
8/14 Ileo-anal pouch surgery still NED
1/15 Emergency illeostomy spread to peritoneum and small bowel

Georgie
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Joined: Tue Sep 27, 2011 6:39 pm
Facebook Username: Georgie Adams

Re: PET SCAN

Postby Georgie » Tue Jun 16, 2015 3:55 am

Hi Cherie,

I've been following your story for some time now, you seem to be kicking some major cancer ass, taking each setback and hitting it for 6.

So, could they be referring here to image numbers, not number of suspicious spots? Sometimes, when the images are processed, the slices are numbered. So slice numbers 252 and 392 showing spots that didn't take up the FDG (not significantly hyper metabolic).

When do you go back to see your docs and confer with them?

Georgie
Nuclear Medicine/PET Tech
Stage 3 T4N1M0 Rectal Ca diag 1/11 at age 29
Clinical trial (chemoradiation) 12 wks incl FOLFOX
Surgery 14 June '11
Post op infection
Iliostomy reversal 12 Sept '11
NED 6 years!
2017 Stage II Breast cancer triple positive
BRCA2 mutation
Bilateral mastectomy, chemo, herceptin

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LeonW
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Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: PET SCAN

Postby LeonW » Tue Jun 16, 2015 6:07 am

Hi Cherie

Besides this 'image numbering' confusion, you may expect your specialist to explain what's significant in terms that humans can understand. No reason to talk about 'not significantly hyper metabolic' spots without explaining it.

The PET scan you had, measures metabolism, the process by which cells use sugar to produce energy. Hypermetabolic means those cells are absorbing more sugar than is normal for that type of cell. This is important in terms of cancer diagnostic because cancer cells have a much higher metabolic rate than healthy cells, thus they "light up" the PET scan. Are easier to see.

Thus, most likely, the PET scan showed that the suspicious spots did not behave like cancer cells: they did not absorb as much sugar as cancer cells do typically.

I hope for you that this is what your doctor meant. But, this is just me my interpretation of the jargon your doctor fed you. Be sure to confirm with him/her, when you meet.

Best of luck . . . Leon
Dec 2012 - CC 2 unresect liver mets, CEA 41.8 (MM 65yrs)
Jan 2013 - colectomy @ spleen 2/26 nodes IVa T3N1bM1a
Feb-Jul - 1x Xelox-7x Xelox/Avastin, shrinkage from #3
Aug - 2x PV embolization (both failed)
Sep 2013 - R liver resect, 25d hosp (liver failure/delirium, lung emboli, encephalopathy), no living cancer (pCR)
2014/15 - recovery, scopy: 2 polyps
2016 - new town/life
2018, scopy: 2 polyps
2018/20 low (1.0-1.4) CEAs/clean CTs: 4x2014, 6x2015-17, 3x2018-20
next June 2021!

rp1954
Posts: 1536
Joined: Mon Jun 13, 2011 1:13 am

Re: PET SCAN

Postby rp1954 » Tue Jun 16, 2015 8:49 am

I've got a suspicion about that. How many IV C have you had? How many days before the PET scan was your last IV vitamin C?

Cancer cells absorb the oxidized form(s) of vitamin C as if it were sugar (or FDG), and vitamin C or metabolites accumulate in the cancer. That's partly why C can improve things with the right adjuvants, inhibiting or even killing some/many cancer cells, perhaps with high doses of K2, K3, or hydroxyB12, flavonoids and a little 5FU (and celecoxib).

We need to have an idea how long to space out the IVs before a PET (if it is days) or re-analyze the situation. Bad news is that it might mess with the PET image, good news the cancer cells might be unhappy and their activities inhibited. With a high field MRI, 3-7 teslas, C of some form could be used as the tracer.

Surgeons get interested enough, they might do the operation just to see for themselves.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

Kiwi Debz
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Facebook Username: Deb Goldby

Re: PET SCAN

Postby Kiwi Debz » Tue Jun 16, 2015 9:48 am

Hi Cherie,

From the sounds the numbers are referring to the pictures and non hypermetabolic is a good thing.

Get the docs to explain but it sounds like you may well have turned this around!

Go girl

Deb
6/14 DX mCrc stage 4
7/14 R. hemicolectomy; 4/17 LN; liver res. peri met; repair to illiac artery
8/14 FOLFOX
10/14 PET recurrence LN; liver ? Peri met Continue FOLFOX
12/14 PET: stable .Liver only! FOLFOX
02/15 Liver resection. NED
03/15 foundation One testing - BRAF mutant
05/15 progression; Hilum node; both lungs?
08/15 NED !!!!
Age 51 Mum to Tom (RIP) and Jose 18
KIA KAHA - Be strong!

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natee19
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Joined: Mon Jun 15, 2015 11:39 pm
Facebook Username: James.toh

Re: PET SCAN

Postby natee19 » Tue Jun 16, 2015 10:50 am

Hi there, is there any difference between PET or MRI after RT to identify any traces of polyps ?
Caregiver to 70 yo father
DM Type II age of 45
CORS - 50/70/90
Stage T3N1M0
X-ray - 27/01/15
MRI scan - 31/01/15 & 27/4/15
CT scan - impression of 5 cm tumor seen 01/02/15
Biopsy - 01/02/15
Neoadjuvant chemoRT - Xeloda + 28x RT + 11x blood tests completed in 16/06/15
Next steps - To go for MRI scan + surgery date in August

orcasres
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Joined: Mon Jul 01, 2013 10:23 pm
Location: Orcas Island, WA

Re: PET SCAN

Postby orcasres » Tue Jun 16, 2015 2:37 pm

Cherie, you definitely need to check with your doc, but it is VERY likely that those numbers refer to the "slices" or images. Lois
63 yo F
Colon resection Sept. 2010
pT3N0M0 Stage 2A
Medullary Tumor 6.5cm long
Lymphovascular invasion
Lynch negative
12 FOLFOX 11/2010 to 5/2011 8 w/Oxi
NED so far

PainInTheAss
Posts: 663
Joined: Tue Jul 02, 2013 3:08 am

Re: PET SCAN

Postby PainInTheAss » Thu Jun 18, 2015 5:17 am

I had a lymph node that just faintly lit up, especially on the edges. My onc said it wasn't clear it was cancerous and it could be lighting up from inflammation. So, sounds like something lit up faintly but not enough to be clearly cancerous.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

ab123
Posts: 120
Joined: Tue May 21, 2013 12:25 pm
Location: Boston

Re: PET SCAN

Postby ab123 » Thu Jun 18, 2015 8:04 am

In my experience all radiology reports hedge a little bit. They never say definitive things like "no cancer detected" and there's always some amount of uncertainty expressed. This report sounds very very good to me. Make sure to get your oncologist to interpret it in regular language.
Aug 2012: RC DX Stage IIIC, T3N2M0 by MRI - 38M
Fall 2012: Chemorad
Nov 2012: LAR - Path report: 0/13 LNs, tumor reduced to "microscopic foci"
Jan-Apr 2013: 8 rounds FOLFOX
May 2013: Ileostomy takedown, port removal
July 2013 (and since): NED!

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Cherie
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Location: New Zealand

Re: PET SCAN

Postby Cherie » Fri Jun 19, 2015 1:16 am

Hi Everyone,

The numbers did refer to the slides. At this point no one is saying the cancer is gone. The suspicious spots that were noted everyone is labelling as cancer...even through that are not burning sugar like cancer does...... BUT in July the surgeon is going to crack me open and take a look.

rp1954 I had vitamin C on Friday and my Pet was on the following Wednesday five days latter. I take vitamin C with some B vitamins and take Celebrex daily with some other natural stuff.

I'm not sure if I have dumb slow growing cancer or the vitamin c had halted what was there at christmas. But I have not done any chemo. It just makes me too sick even the smallest amount. So here I ponder what will the surgeon find....I pray vitamin c will be my hero.
36Yo F
2000 UC
2013 Stage 4 CC 15/126 LN spread to the omentum
June Collectomy all visible cancer removed
July Folfox + Avastin
2/14 clean scan
8/14 Ileo-anal pouch surgery still NED
1/15 Emergency illeostomy spread to peritoneum and small bowel

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NZJay
Posts: 640
Joined: Mon Dec 16, 2013 3:00 pm
Location: NZ

Re: PET SCAN

Postby NZJay » Fri Jun 19, 2015 1:29 am

Hey Cherie. Happy to hear your good news! Dumb slow growing cancer is the best kind to have. Fingers crossed for a good lap report.
Question: do you have recent CEA readings? Curious to know what your bloods are showing. Also when is the HIPEC happening?
Annnnnd... do you live around Roto? I'm there next Friday and Saturday if you're bored :)
11-13 Dx CC
SPS T4b(touched stomach organ),N1(3/23),M0(Stage 3B)
11-13: resect + partial gastrect
2-14: 1 Tx Cape + Oxy; renal failure, colitis
4-14: 7 Tx Capecitabine
1-15: clear CT
7-15: clear scope
1-16: clear CT
3-17: clear CT
10-17: clear scope (5 year gap now!)
CEA@dx: 8.4 / 6-15: 4.0 / 10-15: 4.2 / 2-16: 4.9 / 7-16: 4.9 / 11-16: 5.0 / 6-17: 4.5
NED since resection

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Cherie
Posts: 590
Joined: Fri Jul 12, 2013 11:20 am
Facebook Username: cherie
Location: New Zealand

Re: PET SCAN

Postby Cherie » Fri Jun 19, 2015 8:04 am

Hey Jay My CEA was 1 two weeks ago. Infact all of my bloods look the best they have in ten years. I can tell that my surgeon was excited by my scan. The fact that these nodes/spots??? are not burning sugar gives me hope that something is killing of the cancer. I don't want HIPEC this body is to skinny and tired to recover from surgery.

I'd love to meet you but I'm off to the USA tomorrow for some sun, fun and a second opinion. I wonder how they will take the vitamin C treatment I'm doing here?
You are traveling a lot. Work?
36Yo F
2000 UC
2013 Stage 4 CC 15/126 LN spread to the omentum
June Collectomy all visible cancer removed
July Folfox + Avastin
2/14 clean scan
8/14 Ileo-anal pouch surgery still NED
1/15 Emergency illeostomy spread to peritoneum and small bowel

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vilca11
Posts: 730
Joined: Fri Feb 14, 2014 11:19 am
Location: Moscow, Russia; Baltimore, USA 1992; Vilcabamba, Ecuador 2012

Re: PET SCAN

Postby vilca11 » Fri Jun 19, 2015 2:52 pm

Dear Cherie, hope you are going to have a very nice vacation and do some other "not so pleasurable" medical encounter....

I absolutely agree with RP - I think, you have small nodules that are becoming necrotized from Vit C. Lots of alternative clinics in the US do IV Vit C, so your consultant at least is not going to be that surprised. There were studies on IV Vit C for cancer in Kansas University with a very positive results some years ago.... So, do not worry about that part.

How much Vit C you were getting? What is the dose? B/C Kansas tried even 100gm if I remember correctly.
Hugs and thanks, I think that surprisingly everything could be quite all right, just continue Vit C and Celebrex.... I just feel it...
Vilca
11/2005 CC stage 1, F,50yo@dx
Mod dif adenocar, MSS, APC, TP53, CEAs1.6-4.8
1/12 1met liver@Vena Cava, RFA, 3oxi,11 5FU
8/13 2 mets same place,SBRT
4/14 2 Xeliri+Avastin
5/14 Nano Knife liver same 2 mets
6/14 2 Xeliri, ADAPT
4/15 PET, 2 same mets,Cryo Liver
5/15 MJ Oil, Herbs, Suppl, ADAPT
10/15 PET, same area, doubled in size, high SUV
10/15 RH, HAI, visceral involv., no LN
2/16 red FF, 50% red dose FUDR, CEA trends up
3/16 CT, PET, MRI L.Lobe all in small tumors
4/16 No acceptable options, going home

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Cherie
Posts: 590
Joined: Fri Jul 12, 2013 11:20 am
Facebook Username: cherie
Location: New Zealand

Re: PET SCAN

Postby Cherie » Fri Jun 19, 2015 9:38 pm

Thanks vilca11 for the encouragement. I take one gram per kg of body weight. So 60grams because I'm about 60 kgs. I do it once a week but if everything is going I want more!!! Why aren't more people do Vitamin C in the USA? It's the next big thing here in New Zealand.
36Yo F
2000 UC
2013 Stage 4 CC 15/126 LN spread to the omentum
June Collectomy all visible cancer removed
July Folfox + Avastin
2/14 clean scan
8/14 Ileo-anal pouch surgery still NED
1/15 Emergency illeostomy spread to peritoneum and small bowel

Maddielolo
Posts: 140
Joined: Tue Apr 08, 2014 4:57 pm

Re: PET SCAN

Postby Maddielolo » Fri Jun 19, 2015 9:52 pm

Cherie, are major cancer hospital(s) in NZ using it, or just as alternative treatment?


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