New PET scan , not good.

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Tanya
Posts: 116
Joined: Fri Jul 03, 2015 10:34 am
Location: Kings park NY

New PET scan , not good.

Postby Tanya » Thu May 26, 2016 5:10 pm

I did a PET scan on May 24. My oncologist it is too busy to call me, so I picked up my results today.
So , evaluation the chest demonstrate new hyper metabolic lymphadenopathy in the mediastinum and bilateral perihilar regions. A reference 2.1 by .8 cm prevascular node demonstrate SUV 5.3. A difficult to delineate right lower pirates heal focus was trace SUV 8.8. 2 by 2.2 cm right hilar node demonstrate
SUV 7.4.
The liver SUV 2.8, previously 2.3
The report said:
These are concerning for metastases.metastatic disease cannot be excluded.
My oncologist maybe call me after Memorial weekend.
It's look like it is not over , maybe I don't understand this numbers?
It is scary and I don't know what is next.
Dx-32y.o. Anal cancer-stage 3.
Aug-Sep xeloda & radiation-30
November 12-MRI-bones clear
November 30-NED
Moms of two (3 & 12 y.o.)
Recurrence -01.19.2016
Colostomy and APR surgery - 01.27.2016
Possibly chemo - June

Lee
Posts: 5740
Joined: Sun Apr 16, 2006 4:09 pm

Re: New PET scan , not good.

Postby Lee » Thu May 26, 2016 5:18 pm

Tanya I am sorry for your news. It is something we all hope we never hear.

If it is confirmed to be a met. Please consider getting a 2nd opinion at a major cancer treatment center. Regardless of what ever plan your Dr.(s) decide. I've been around for awhile and there are MANY people who have received your news and go on to become NED again. Never give up the hope!

One day at a time,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Colon King
Posts: 52
Joined: Tue May 17, 2016 9:13 pm
Location: Canada
Contact:

Re: New PET scan , not good.

Postby Colon King » Thu May 26, 2016 6:42 pm

Totally. You need another doc to go over the results with you. Trying to work it out on your own will drive you mad. Focus on your breath work and mindfulness and take it one step at a time. That next step is to go over the results with someone who has on the ground experience.
39 year old male, Canada.
Husband; father of 4.

5/16/16: 3cm x 4cm Intermediate Serrated Polyp found by fluke (elective colonoscopy)
5/20/16: CEA 1.7 (phew)
06/10/16: EMR complete
06/16/16: Biopsy result: Fragments of tubulovillous adenoma; negative for high grade dysplasia
09/08/16: Follow up Colonoscopy scheduled.

My blog: https://colonking.com

jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: New PET scan , not good.

Postby jhocno197 » Thu May 26, 2016 8:33 pm

Tanya, I am so sorry to hear this. Praying for you.

If your doctor is too busy to give you important results like this, you need a new doctor.
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

Lydia666
Posts: 674
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: New PET scan , not good.

Postby Lydia666 » Thu May 26, 2016 9:17 pm

I hope your doc can explain- I don't understand much of it. I don't know what SUV stands for.
I am sorry you are left to worry about this. If those nodes are positive, i am pretty sure there are solutions: surgery, radiation...
Thinking of you and please update us. Are you doing ok after surgery?
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
July 2016- ileo reversal
August 2016- DCIS
Feb 24,2017- prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Mom to 4 & 7 yrs kids (6 mo. & 3.5 yrs at diagnosis in June 2015)

jens22
Posts: 999
Joined: Wed Jun 09, 2010 9:26 am
Facebook Username: jspirio
Location: Long Island, NY

Re: New PET scan , not good.

Postby jens22 » Thu May 26, 2016 9:46 pm

HI tanya,,,,,I never had a pet scan so I'm not good at reading...But I'm from Kings Park too...Check you PM
Colonoscopy 3/10 for ? hemmorrhoid.
Diag Colon Cancer 3 days later
Colon Ressection 3/30/10
Stage 3B 5/14 Nodes positive.
Power Port and 7 months of Chemo
Port removed 11/11
8 negative Cat Scans..... 7 years cancer free and Discharged from Sloane Kett!!
Diag age 47 , now 54 Mom of 3 boys.

User avatar
Nik Colon
Posts: 5210
Joined: Thu Jan 08, 2015 3:35 pm
Location: MN

Re: New PET scan , not good.

Postby Nik Colon » Thu May 26, 2016 9:49 pm

Sorry to hear, hope all goes well.
Here is some info on SUV

There can be other causes of intense activity such as inflammation, infection, or muscle activity. Measuring the SUV (Standardized Uptake Value) is a semi?quantitative way to assess the activity in a given focus. It represents the amount of activity in the focus relative to the activity in the other (normal) areas of the body. Typically, the SUV value of metastatic lesion is above 2.5. The pattern of activity (the distribution of lesions in the different parts of the body) is also very important as different cancers have different preferential sites of metastasis. Also, patient's history and findings on other anatomic imaging like CT scans and MRI are taken into consideration while reading the PET scans.

Incorrect fasting or eating/drinking prior to PET can cause error also (like too much sugar or caffeine prior, etc). See link below

http://www.oncolink.org/experts/article.cfm?id=1848

You can search for more detailed info.
Last edited by Nik Colon on Thu May 26, 2016 10:01 pm, edited 1 time in total.
KRAS-mut G12V,MSS
Stage IVa Sig CC 2 lvr mets 1/12 Ln
(3, =<3 lng spots at dx til 5/16)
=T3N1aM1a 4cmX4mm (lng not included)
dx 12/2014 at age 39
CEA 1/15-4.9, 12/16-4.9 again
neoadj FOLFOX 1/15-3/15 (4tx, 3w/1wo oxi)
Col/Lvr surg 4/23/15 NED
adj FOLFIRI start 6/15-9/15 (8tx, 5w/3wo iri)
1 sml lvr spot/cyst
12/6/16 multi lung spots/mets?
No longer NED :(
My tx ongoing-start 1/20/15
Adding your SIGNATURE, etc

User avatar
Cowgirl918
Posts: 319
Joined: Sun Jan 17, 2016 12:55 am
Location: Indiana

Re: New PET scan , not good.

Postby Cowgirl918 » Thu May 26, 2016 9:58 pm

I found Nik's info very informative. Hope it helps until you review your test with the physician. I have learned after many years that the physician's job is to interpret the findings as they relate to me. Please do your best to stay calm until you have the answers you need and deserve. Keeping you in my thoughts.
HX Colon Polyps Villious and Tubillovillous
12/29/15 Colonoscopy/Endoscopy - Ascending Colon Mass- Hemicolectomy Scheduled
1/17/2016 Right Hemicolectomy Cancelled
1/25/2016 CT No evidence of other disease
2/12/2016 EMR-ascending colon mass 80% removed
5/29/2016 Compressed lumbar spinal fracture (riding accident)
8/12/2016 EMR #2 ascending colon mass curative
8/13/16 NED
10/18/16 Autoimmune Diseases confirmed

User avatar
Nik Colon
Posts: 5210
Joined: Thu Jan 08, 2015 3:35 pm
Location: MN

Re: New PET scan , not good.

Postby Nik Colon » Thu May 26, 2016 10:15 pm

Cowgirl918 wrote:I found Nik's info very informative. Hope it helps until you review your test with the physician. I have learned after many years that the physician's job is to interpret the findings as they relate to me. Please do your best to stay calm until you have the answers you need and deserve. Keeping you in my thoughts.

Thanks, I was doing alot of reading up on it recently because of my last scan which showed my highest SUV on one of my liver spots at 2.9. So, I wanted to know more.
KRAS-mut G12V,MSS
Stage IVa Sig CC 2 lvr mets 1/12 Ln
(3, =<3 lng spots at dx til 5/16)
=T3N1aM1a 4cmX4mm (lng not included)
dx 12/2014 at age 39
CEA 1/15-4.9, 12/16-4.9 again
neoadj FOLFOX 1/15-3/15 (4tx, 3w/1wo oxi)
Col/Lvr surg 4/23/15 NED
adj FOLFIRI start 6/15-9/15 (8tx, 5w/3wo iri)
1 sml lvr spot/cyst
12/6/16 multi lung spots/mets?
No longer NED :(
My tx ongoing-start 1/20/15
Adding your SIGNATURE, etc

Tanya
Posts: 116
Joined: Fri Jul 03, 2015 10:34 am
Location: Kings park NY

Re: New PET scan , not good.

Postby Tanya » Thu May 26, 2016 10:31 pm

Thanks to everyone, it's a good filling, you not along.
Thanks for explaining and support
Dx-32y.o. Anal cancer-stage 3.
Aug-Sep xeloda & radiation-30
November 12-MRI-bones clear
November 30-NED
Moms of two (3 & 12 y.o.)
Recurrence -01.19.2016
Colostomy and APR surgery - 01.27.2016
Possibly chemo - June

LB10
Posts: 106
Joined: Tue Mar 17, 2015 5:25 pm

Re: New PET scan , not good.

Postby LB10 » Fri May 27, 2016 7:23 am

Hi Tanya,
I'm sorry that you are going through this. Try not to jump to worse case scenario while waiting to hear from your doctor. I think you should be on the phone demanding to speak with someone about your results. Having to wait through the weekend seems unacceptable to me. Be pushy if you have to. I also agree, you should get another opinion. I'm praying for you and hoping your news is better than it seems.

Lisa
Stage III Rectal cancer
Dx 3/14
4/14-7/14 8 rounds Folfox
8/14-9/14 Radiation/Xeloda
1/15 APR colostomy
46 yo wife & mom

Tanya
Posts: 116
Joined: Fri Jul 03, 2015 10:34 am
Location: Kings park NY

Re: New PET scan , not good.

Postby Tanya » Fri May 27, 2016 2:04 pm

I speak with doctor(after I call her three times), she said probably it is metastases but she want to do the biopsy. I ask her my prognosis, she said if biopsy it is positive I have 12-24 months, because it is mean my cancer too aggressive...
I will go to Sloan to see what they said, but really 24 month???
I can't believe that.
Dx-32y.o. Anal cancer-stage 3.
Aug-Sep xeloda & radiation-30
November 12-MRI-bones clear
November 30-NED
Moms of two (3 & 12 y.o.)
Recurrence -01.19.2016
Colostomy and APR surgery - 01.27.2016
Possibly chemo - June

LB10
Posts: 106
Joined: Tue Mar 17, 2015 5:25 pm

Re: New PET scan , not good.

Postby LB10 » Fri May 27, 2016 4:26 pm

Tanya, my heart breaks that you had to hear that news. Keep in mind that she doesn't have all the info yet and even so I have read so many stories on this board of people who have heard news like this and went on to prove those doctors wrong. Please call mskcc ASAP to get in for second opinion. Sending prayers and hugs to you. Stay strong.
Stage III Rectal cancer
Dx 3/14
4/14-7/14 8 rounds Folfox
8/14-9/14 Radiation/Xeloda
1/15 APR colostomy
46 yo wife & mom

Sams wife
Posts: 749
Joined: Sun Jan 11, 2015 2:49 pm

Re: New PET scan , not good.

Postby Sams wife » Fri May 27, 2016 5:34 pm

Don't know what to say. I'm glad you can get to MSK. I'll hope she's wrong & MSK will fix it.
Husband dx 1/13/15 St.2 CEA 7.1
Chemo/25rad 2/15 till 4/24/15
5FU/leucovorin
Surgery 6/8/2015 Stage IIa T3N0MX microscopic cancer left
Watching 4 lung spots
0/5 lymph nodes. Lap. APR
25% less 5FU/leucovorin 7/14/2015 x 26 CEA 3.4
25% more 5fu 9/2015
9/16/15 CEA 7.7
1/16/16 @ 9.2 during allergy?
3/16 New lung spot 4x4 mm
6/16 CEA 6.9 spot 5x5

Lydia666
Posts: 674
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: New PET scan , not good.

Postby Lydia666 » Fri May 27, 2016 6:36 pm

Oh man- she should not have said that as she doesn't know. Did she talk about any treatment?? Tanya, i am sorry you are going through this but stay focused on what can be done, second opinions etc. They can do all sorts of things these days.
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
July 2016- ileo reversal
August 2016- DCIS
Feb 24,2017- prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Mom to 4 & 7 yrs kids (6 mo. & 3.5 yrs at diagnosis in June 2015)


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