Primary Tumor Had A Complete Response But Tumor Deposits Now On MRI?

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prayingforccr
Posts: 54
Joined: Sun Jun 28, 2020 4:44 pm

Primary Tumor Had A Complete Response But Tumor Deposits Now On MRI?

Postby prayingforccr » Sat Nov 14, 2020 3:09 pm

So.......a very mixed bag this week.

I went up to msk for confitmation that my primary tumor (rectal 6.3cm) had a complete response!!!!!!!!

BUT now they are concerned about probable tumor deposits in my levator ani showing up on my latest mri.

There are NO suspicious lymph nodes.

There was NO indication of anything in late August when I was finishing FOLFOX

Does anyone have any experience with tumor deposits?

What kind of treatment/prognosis can I expect?

I am terrified once again.

I have ruled out any surgery which would leave me with a colostomy.

THANK YOU FOR ANY REPLY
Nov 2020: colonoscopy
Dec 2020: diagnosed with stage 3 rectal cancer 6+cm tumor
Jan-mar 2021: 20 sessions of radiation, mon-fri capecetibine, mon-fri clinical trial drug m3814
Apr 2021: anoscopy confirmed tumor/scar 3.7cm with significant tumor necrosis but some persistent disease
July 2021: began 8 treatmentsFOLFOX
August 2021: ct scan reveals scarbed reduced to 2.7cm CEA is 1.5
Nov 2021: Primary tumor had complete response. Possible tumor deposits on latest mri. Biopsy scheduled first week of december.

User avatar
beach sunrise
Posts: 298
Joined: Thu Mar 05, 2020 7:14 pm

Re: Primary Tumor Had A Complete Response But Tumor Deposits Now On MRI?

Postby beach sunrise » Sat Nov 14, 2020 4:58 pm

It was considered I might have had some scattered tumor deposits (no significant SUV uptake) but right before surgery nothing showed up so it was radiation damage or dead cancer thanks to radiation. I can't be scientific because it was a yr ago but thats my layman experience with the idea I had some.
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

prayingforccr
Posts: 54
Joined: Sun Jun 28, 2020 4:44 pm

Re: Primary Tumor Had A Complete Response But Tumor Deposits Now On MRI?

Postby prayingforccr » Sat Nov 14, 2020 5:01 pm

beach sunrise wrote:It was considered I might have had some scattered tumor deposits (no significant SUV uptake) but right before surgery nothing showed up so it was radiation damage or dead cancer thanks to radiation. I can't be scientific because it was a yr ago but thats my layman experience with the idea I had some.


Man, I am praying for the same outcome. That it is treatment debris.

God bless you, and thank you for giving me hope.
Nov 2020: colonoscopy
Dec 2020: diagnosed with stage 3 rectal cancer 6+cm tumor
Jan-mar 2021: 20 sessions of radiation, mon-fri capecetibine, mon-fri clinical trial drug m3814
Apr 2021: anoscopy confirmed tumor/scar 3.7cm with significant tumor necrosis but some persistent disease
July 2021: began 8 treatmentsFOLFOX
August 2021: ct scan reveals scarbed reduced to 2.7cm CEA is 1.5
Nov 2021: Primary tumor had complete response. Possible tumor deposits on latest mri. Biopsy scheduled first week of december.

User avatar
beach sunrise
Posts: 298
Joined: Thu Mar 05, 2020 7:14 pm

Re: Primary Tumor Had A Complete Response But Tumor Deposits Now On MRI?

Postby beach sunrise » Sat Nov 14, 2020 5:07 pm

I had a PET that showed it after neoadjuvant but it was not noted on the report (I'm guessing because of low SUV), just my surgeon telling me about it after the MRI before surgery.
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

prayingforccr
Posts: 54
Joined: Sun Jun 28, 2020 4:44 pm

Re: Primary Tumor Had A Complete Response But Tumor Deposits Now On MRI?

Postby prayingforccr » Sat Nov 14, 2020 5:15 pm

beach sunrise wrote:I had a PET that showed it after neoadjuvant but it was not noted on the report (I'm guessing because of low SUV), just my surgeon telling me about it after the MRI before surgery.



Thank you!!

The weird thing is this.......you guys had surgery and THEN they saw the possible TDs.

Ive had total neoadjuvant therapy which ended just a month ago and a complete response on the primary tumor confirmed by multiple biopsies and a sigmoidoscopy.

Just NOW do they see possible tumor deposits in the levator ani.

Please, please, please let it be anything other than that
Nov 2020: colonoscopy
Dec 2020: diagnosed with stage 3 rectal cancer 6+cm tumor
Jan-mar 2021: 20 sessions of radiation, mon-fri capecetibine, mon-fri clinical trial drug m3814
Apr 2021: anoscopy confirmed tumor/scar 3.7cm with significant tumor necrosis but some persistent disease
July 2021: began 8 treatmentsFOLFOX
August 2021: ct scan reveals scarbed reduced to 2.7cm CEA is 1.5
Nov 2021: Primary tumor had complete response. Possible tumor deposits on latest mri. Biopsy scheduled first week of december.

User avatar
beach sunrise
Posts: 298
Joined: Thu Mar 05, 2020 7:14 pm

Re: Primary Tumor Had A Complete Response But Tumor Deposits Now On MRI?

Postby beach sunrise » Sat Nov 14, 2020 5:21 pm

My MRI was before surgery.
Make sure you are watched carefully.
Like CRguy says "You miss more by not looking....than not knowing"
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

prayingforccr
Posts: 54
Joined: Sun Jun 28, 2020 4:44 pm

Re: Primary Tumor Had A Complete Response But Tumor Deposits Now On MRI?

Postby prayingforccr » Sat Nov 14, 2020 5:28 pm

beach sunrise wrote:My MRI was before surgery.
Make sure you are watched carefully.
Like CRguy says "You miss more by not looking....than not knowing"



MSK is going to biopsy the suspected lesion dec 2

I have been, and am DESPERATE, to avoid surgery/colostomy.
Nov 2020: colonoscopy
Dec 2020: diagnosed with stage 3 rectal cancer 6+cm tumor
Jan-mar 2021: 20 sessions of radiation, mon-fri capecetibine, mon-fri clinical trial drug m3814
Apr 2021: anoscopy confirmed tumor/scar 3.7cm with significant tumor necrosis but some persistent disease
July 2021: began 8 treatmentsFOLFOX
August 2021: ct scan reveals scarbed reduced to 2.7cm CEA is 1.5
Nov 2021: Primary tumor had complete response. Possible tumor deposits on latest mri. Biopsy scheduled first week of december.

User avatar
beach sunrise
Posts: 298
Joined: Thu Mar 05, 2020 7:14 pm

Re: Primary Tumor Had A Complete Response But Tumor Deposits Now On MRI?

Postby beach sunrise » Mon Nov 16, 2020 2:14 am

You sound like my brother who is scared of docs, needles, etc...
I hope you get a complete response. Let us know.
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

prayingforccr
Posts: 54
Joined: Sun Jun 28, 2020 4:44 pm

Re: Primary Tumor Had A Complete Response But Tumor Deposits Now On MRI?

Postby prayingforccr » Mon Nov 16, 2020 10:02 am

beach sunrise wrote:You sound like my brother who is scared of docs, needles, etc...
I hope you get a complete response. Let us know.


Not scared of anything other than colostomy.
Nov 2020: colonoscopy
Dec 2020: diagnosed with stage 3 rectal cancer 6+cm tumor
Jan-mar 2021: 20 sessions of radiation, mon-fri capecetibine, mon-fri clinical trial drug m3814
Apr 2021: anoscopy confirmed tumor/scar 3.7cm with significant tumor necrosis but some persistent disease
July 2021: began 8 treatmentsFOLFOX
August 2021: ct scan reveals scarbed reduced to 2.7cm CEA is 1.5
Nov 2021: Primary tumor had complete response. Possible tumor deposits on latest mri. Biopsy scheduled first week of december.

User avatar
beach sunrise
Posts: 298
Joined: Thu Mar 05, 2020 7:14 pm

Re: Primary Tumor Had A Complete Response But Tumor Deposits Now On MRI?

Postby beach sunrise » Tue Nov 17, 2020 12:11 pm

Ya, I get it but on the other hand NOT seeing the sunrise hit you in the face is scarier. I swear, you do sound like my brother :)
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

boxhill
Posts: 641
Joined: Fri Apr 06, 2018 11:40 am

Re: Primary Tumor Had A Complete Response But Tumor Deposits Now On MRI?

Postby boxhill » Tue Nov 17, 2020 12:25 pm

I don't know if this is your first MRI, but more will show up in the liver with an MRI than a CT scan. Also the liver loves to throw up weird little things that are non-cancerous. So don't freak out about this. If it turns out that you do indeed have small active mets in your liver, they can be treated in multiple ways without performing surgery on your rectum.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
8/20 MRI NED

prayingforccr
Posts: 54
Joined: Sun Jun 28, 2020 4:44 pm

Re: Primary Tumor Had A Complete Response But Tumor Deposits Now On MRI?

Postby prayingforccr » Tue Nov 17, 2020 1:59 pm

boxhill wrote:I don't know if this is your first MRI, but more will show up in the liver with an MRI than a CT scan. Also the liver loves to throw up weird little things that are non-cancerous. So don't freak out about this. If it turns out that you do indeed have small active mets in your liver, they can be treated in multiple ways without performing surgery on your rectum.


The possible tumor deposits are in my pelvis......on the levitor ani :(
Nov 2020: colonoscopy
Dec 2020: diagnosed with stage 3 rectal cancer 6+cm tumor
Jan-mar 2021: 20 sessions of radiation, mon-fri capecetibine, mon-fri clinical trial drug m3814
Apr 2021: anoscopy confirmed tumor/scar 3.7cm with significant tumor necrosis but some persistent disease
July 2021: began 8 treatmentsFOLFOX
August 2021: ct scan reveals scarbed reduced to 2.7cm CEA is 1.5
Nov 2021: Primary tumor had complete response. Possible tumor deposits on latest mri. Biopsy scheduled first week of december.

boxhill
Posts: 641
Joined: Fri Apr 06, 2018 11:40 am

Re: Primary Tumor Had A Complete Response But Tumor Deposits Now On MRI?

Postby boxhill » Fri Nov 20, 2020 3:24 pm

I'm sorry, I think I just saw something beginning with 'l" and assumed liver.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
8/20 MRI NED

prayingforccr
Posts: 54
Joined: Sun Jun 28, 2020 4:44 pm

Re: Primary Tumor Had A Complete Response But Tumor Deposits Now On MRI?

Postby prayingforccr » Sat Nov 21, 2020 3:58 pm

boxhill wrote:I'm sorry, I think I just saw something beginning with 'l" and assumed liver.


Whatever they picked up on the mri is about an inch higher than the primary tumor (which had a complete response)

I am PRAYING it is inflammation or tumor debris as it wasn’t there in August.

It’s bad news if it is tumor deposits as I have finished FOLFOX only on month ago and the mets would have had to have occurred either during chemo, or immediately thereafter :(

My biopsy is the first week of December.

It’s been a difficult year.
Nov 2020: colonoscopy
Dec 2020: diagnosed with stage 3 rectal cancer 6+cm tumor
Jan-mar 2021: 20 sessions of radiation, mon-fri capecetibine, mon-fri clinical trial drug m3814
Apr 2021: anoscopy confirmed tumor/scar 3.7cm with significant tumor necrosis but some persistent disease
July 2021: began 8 treatmentsFOLFOX
August 2021: ct scan reveals scarbed reduced to 2.7cm CEA is 1.5
Nov 2021: Primary tumor had complete response. Possible tumor deposits on latest mri. Biopsy scheduled first week of december.


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