Freaking out of my mind...CEA climb and specks on lungs

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Punky44
Posts: 430
Joined: Mon Oct 01, 2018 4:29 pm

Re: Freaking out of my mind...CEA climb and specks on lungs

Postby Punky44 » Wed Nov 27, 2019 12:15 pm

Thanks for the prayers guys—I would have posted an update yesterday but was waiting for the report to be published to the portal.

So here’s what the PET said:


Left lower lobe pulmonary consolidation has essentially resolved, compatible
with pneumonia. A left upper lobe part solid nodule is decreased with trace FDG
uptake above adjacent pulmonary parenchyma, series 7 image 73. Persistent
emphysematous changes in the bilateral lungs. A right lower lobe partially
cavitary pulmonary nodule is likely stable allowing for differences in
respiratory effort. Additional smaller, tiny bilateral pulmonary nodules are not
significantly changed. No new or increasing pulmonary nodules. Stable calcified
right calcified pulmonary granuloma.

Noncontrast CT demonstrates calcified atherosclerotic plaque, calcified
mediastinal and hilar lymph nodes compatible with prior granulomatous infection,
emphysema.

IMPRESSION:
1. Resolved left lower lobe pneumonia.
2. Stable tiny bilateral pulmonary nodules without significant FDG uptake,
though possibly below PET resolution.
3. No evident recurrence/metastasis.


So obviously the good news seems to be that much of the stuff seen a month ago has resolved, but this main spot that was of most concern is still there, although apparently smaller? The oncologist still said he wants ya back in 2 months for another CT to monitor this spot. I’m honestly not sure what to make of it. I know it’s borderline size to light up on a PET but wouldn’t the fact that it’s smaller be “proof” it’s benign? Or is the measurement variable between machines/radiologists so maybe it’s not really smaller but stable? And the fact that he wants us back in 2 months makes me feel like we aren’t in the clear and he thinks this is cancer. Ugh. We just aren’t sure how to feel or process this.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 2.1; 1.9; 2.6; 2.8
6/28/19 Reversal and port out
10/22/19: CT showed new nodules
1/28/20: CT showed nodules shrinking

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

Trying
Posts: 222
Joined: Sun May 13, 2018 10:11 pm

Re: Freaking out of my mind...CEA climb and specks on lungs

Postby Trying » Wed Nov 27, 2019 7:11 pm

Im sorry about your stress. You are in my thoughts.

Nicole
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy

kiwiinoz
Posts: 1140
Joined: Thu Jan 03, 2013 11:44 pm

Re: Freaking out of my mind...CEA climb and specks on lungs

Postby kiwiinoz » Wed Nov 27, 2019 7:45 pm

Hi Punky,

Seems like pretty good news all around after reading this.
2. Stable tiny bilateral pulmonary nodules without significant FDG uptake,
though possibly below PET resolution.

3. No evident recurrence/metastasis.


Pulmonary nodes without significant FDG uptake & no evidence of recurrence. Don't look for problems that aren't there. Enjoy the good times now and deal with any issues that "may" arise when they arise.
I spent too much of my time worrying about possible recurrance that I spent several years of my life not enjoying my life and I certainly wish I had done differently now. You can perhaps help your Mum by letting her enjoy the "now" instead of letting her worry about the future. I get it that you are scared, but keep that inside and just be mindful that they are your fears.

If the doctor is not worried, then I don't see that you have a lot to worry about until something bites you in the bum, which it may never do.

Kiwi
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - 22 May 2019
Port Out 26 March 2015

CF_69
Posts: 102
Joined: Sat Dec 22, 2018 9:44 pm

Re: Freaking out of my mind...CEA climb and specks on lungs

Postby CF_69 » Wed Nov 27, 2019 8:47 pm

They always leave some ‘wiggle room’ when describing these things. I mean they are never definite.

Looks like a good scan to me. I know it’s next to impossible, but try to relax as much as you can.
47 at diagnosis
Distal sigmoid near rectosigmoid junction adjacent to upper rectum
Adenocarcinoma
2.8 x 1.8 x 3.5 cm
G2
T3N0M0 after pathology
CEA:
Dec 2018 - 1.9
September 2019 - 2.5
Xeloda / radiation x 25
Laparoscopic LAR April 2019
0 of 12 nodes
Stage 2A
4 cycles of adjuvant Xeloda
MRI on liver for 2mm hypodensity not suspicious.
Clear CT - September 2019

AmyG
Posts: 329
Joined: Tue Dec 25, 2018 8:08 pm

Re: Freaking out of my mind...CEA climb and specks on lungs

Postby AmyG » Wed Nov 27, 2019 9:43 pm

Thanks for the update, I'd call it good news!
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!
CEA 3.7 make up your damn mind...

Punky44
Posts: 430
Joined: Mon Oct 01, 2018 4:29 pm

Re: Freaking out of my mind...CEA climb and specks on lungs

Postby Punky44 » Wed Nov 27, 2019 11:07 pm

Thank you all. Really trying to not dwell on it during the holidays and just pray it ends up being nothing but in the meantime not let it ruin the “now”. Easier said than done for sure but I’m trying.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 2.1; 1.9; 2.6; 2.8
6/28/19 Reversal and port out
10/22/19: CT showed new nodules
1/28/20: CT showed nodules shrinking

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

Punky44
Posts: 430
Joined: Mon Oct 01, 2018 4:29 pm

Re: Freaking out of my mind...CEA climb and specks on lungs

Postby Punky44 » Mon Jan 27, 2020 1:37 am

Scanxiety is setting in hard.

Please send prayers/good vibes for my mom as she gets her follow up scan/bloodwork tomorrow. We will know the results of the bloodwork tomorrow and CT results on Tuesday.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 2.1; 1.9; 2.6; 2.8
6/28/19 Reversal and port out
10/22/19: CT showed new nodules
1/28/20: CT showed nodules shrinking

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

Punky44
Posts: 430
Joined: Mon Oct 01, 2018 4:29 pm

Re: Freaking out of my mind...CEA climb and specks on lungs

Postby Punky44 » Mon Jan 27, 2020 8:51 pm

CEA has now risen to 2.8.

This CEA continues to creep upward. Also a lot of the CBC bloodwork levels continue to trend to the high point of normal (platelets, lymphocytes, etc.) I am so worried that this is all “evidence” that a recurrence is in the making.

Will know more tomorrow when we get CT results.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 2.1; 1.9; 2.6; 2.8
6/28/19 Reversal and port out
10/22/19: CT showed new nodules
1/28/20: CT showed nodules shrinking

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

stu
Posts: 1259
Joined: Sat Aug 17, 2013 5:46 pm

Re: Freaking out of my mind...CEA climb and specks on lungs

Postby stu » Tue Jan 28, 2020 8:29 am

Hopefully tomorrow will put your mind at rest . It’s still very low . I don’t think my mum has ever had such a low reading . It’s a case of finding out what’s normal for her .
I totally get the anxiety it brings . Hoping for the best for you both ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Punky44
Posts: 430
Joined: Mon Oct 01, 2018 4:29 pm

Re: Freaking out of my mind...CEA climb and specks on lungs

Postby Punky44 » Tue Jan 28, 2020 11:39 am

Thank you so much Stu!

She just got out of the meeting and they said everything looked great! The spots on her lungs got smaller even. They still want her back in 3 months for another scan but if that looks good they can go back to every 6 months. This is also when she will have her colonoscopy.

I do still worry about creeping CEA values because of articles like this: https://www.ncbi.nlm.nih.gov/m/pubmed/17573747/

But I also know the many things that can cause increase and fluctuation so I am hoping it’s that and praying that maybe it can go down on the next draw and break the upward trend.

Ok I can breathe again for three months.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 2.1; 1.9; 2.6; 2.8
6/28/19 Reversal and port out
10/22/19: CT showed new nodules
1/28/20: CT showed nodules shrinking

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

Basil
Posts: 265
Joined: Thu Mar 16, 2017 12:33 pm

Re: Freaking out of my mind...CEA climb and specks on lungs

Postby Basil » Wed Jan 29, 2020 9:40 am

My CEA was 1.4 after treatment and has fluctuated between 2 and 2.8 thereafter. At my last checkup my lab results weren't back yet but he sent me on my way. I was all like, "what about my CEA?" He said he wasn't concerned no matter what it was, unless it was something super, crazy high. It was 2-something; I can't remember exactly. I wouldn't get bent over a 2.8. The number is always going to change. I know very little about lung mets but shouldn't the nodules shrinking be pretty definitive they're not cancer? Mets just don't up and shrink on their own, do they?
40 y/o male, kids 8&11
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear
2 year scans - clear

stu
Posts: 1259
Joined: Sat Aug 17, 2013 5:46 pm

Re: Freaking out of my mind...CEA climb and specks on lungs

Postby stu » Wed Jan 29, 2020 11:56 am

All sounds like good news . Phew . You can concentrate now on packing in good times .
Take care ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .


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