Low key freak out.

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AmyG
Posts: 352
Joined: Tue Dec 25, 2018 8:08 pm

Low key freak out.

Postby AmyG » Tue Sep 08, 2020 8:08 pm

Met my new oncologist today. He's okay.

He is concerned about tissue in my chest, that I could have a thymoma. It's residual thymic tissue that's been noted since my March CT. So there was nothing there in December, something in March, June and September. I'm waiting on a biopsy appointment.

Last time I had a biopsy things didn't work out so well. :roll:

This guy made it sound like having something malignant right in front of my heart was no big deal. I suppose it isn't when it's not your chest cavity? I'm not overly excited about the idea. I totally get it that it could be nothing. But I don't know that yet and I'd like to get my hand wringing out of the way. The way he talked he sounded like he was trying to get me used to the idea of making friends with a thoracic surgeon. Yeehaw.

Very familiar with the saying about when I hear hoof beats to think horses, not zebras.

So, any of yall have something like this come up?
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...
CEA 1.5 that's a new low!

michelle c
Posts: 1906
Joined: Wed Dec 02, 2009 3:58 am

Re: Low key freak out.

Postby michelle c » Wed Sep 09, 2020 5:05 am

Never a dull moment, hey?

Did they not raise a concern in March when it first appeared? Has it grown since first reported?

It sucks not knowing and having to wait for appointments, results etc. It’s a scary and unsettling time but it could well be benign. Good that your oncologist is following it up though.

Best wishes to you and hoping and praying, along with you, that it’s benign. Hang in there!
25 May 09 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
3 Jun 09 LAR - Stage III 3/10 lymph nodes
6 Jul - 10 Dec 09 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 12 port removed & hernia repair

Lee
Posts: 6128
Joined: Sun Apr 16, 2006 4:09 pm

Re: Low key freak out.

Postby Lee » Wed Sep 09, 2020 2:53 pm

Can they do a PET scan? Have you ever had one?

I hope it nothing. The waiting is the hardest.

Good luck,

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 - 16 years and counting!

AmyG
Posts: 352
Joined: Tue Dec 25, 2018 8:08 pm

Re: Low key freak out.

Postby AmyG » Wed Sep 09, 2020 6:10 pm

Never had a PET, he's going right to biopsy.

In somewhat good news, my CEA is 2.2 and AFP is 3.7, which for our lab, under 9 something is normal. CEA has always been a good indicator for me, idk if AFP is or not.

So, that's a step in the right direction. I'm hoping chemo messed with my thymus and I'm just special because I have extra. :lol:

If not, it will just be another adventure. Woo.
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...
CEA 1.5 that's a new low!

DarknessEmbraced
Posts: 3499
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Low key freak out.

Postby DarknessEmbraced » Sat Sep 12, 2020 11:03 am

I'm sorry you're going through this and I hope it's benign. *hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

Trying
Posts: 250
Joined: Sun May 13, 2018 10:11 pm

Re: Low key freak out.

Postby Trying » Thu Sep 24, 2020 5:41 pm

Hi Amy,

I have always admired your strength and have no doubt you will come out on top. Sending love and strength

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
Oxy failed- irinotecan as of of Sept 2020

Koreysue
Posts: 154
Joined: Mon Apr 30, 2018 2:36 pm

Re: Low key freak out.

Postby Koreysue » Sun Sep 27, 2020 4:34 pm

I know the waiting is so hard!
Thinking of you ❤️
Diagnosed: June 2017 stage 3 colon cancer
Sigmoid colon, 2 nodes affected
CEA at diagnosis: 6
Sigmoid Colectomy and folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/2018 clean
PET scan 8/20/18 NED
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT NED 6/18/2019 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8
CT NED /CEA 6/17/20: 3.8

Punky44
Posts: 446
Joined: Mon Oct 01, 2018 4:29 pm

Re: Low key freak out.

Postby Punky44 » Fri Oct 02, 2020 11:25 pm

Amy! I am thinking of you! Any updates?
Caregiver to my amazing mom (68 at dx)
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
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3; 2.4
Latest update: 6/20–Clear CT; 9/22—CEA 2.4

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

AmyG
Posts: 352
Joined: Tue Dec 25, 2018 8:08 pm

Re: Low key freak out.

Postby AmyG » Thu Oct 15, 2020 9:05 am

Would you belive i still don't have a biopsy scheduled? I have a CT at the end of November, appointment with the oncologist at the beginning of December.

CEA and AFP were both hella low, so I guess that's okay?

Idk.
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...
CEA 1.5 that's a new low!

Claudine
Posts: 433
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Low key freak out.

Postby Claudine » Thu Oct 15, 2020 9:57 am

Well I'd say that's good news - if they felt there was something really amiss, wouldn't they rush your biopsy? And if CEA is a good marker for you, then low values are another good sign!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 24.1
Scan 03/19: Multiple small lung nodules up to 5mm
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20
Scan 09/20: nothing to report

Punky44
Posts: 446
Joined: Mon Oct 01, 2018 4:29 pm

Re: Low key freak out.

Postby Punky44 » Tue Oct 20, 2020 1:06 am

Can you push for a biopsy? And maybe if they aren’t super concerned to rush it that’s a good sign in and of itself, but I’m always a pushy self-advocate. :)
Caregiver to my amazing mom (68 at dx)
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
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3; 2.4
Latest update: 6/20–Clear CT; 9/22—CEA 2.4

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


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