Recurrence

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Dennyp
Posts: 83
Joined: Thu Oct 29, 2020 9:28 pm

Recurrence

Postby Dennyp » Sat Apr 15, 2023 10:51 am

I had a recurrence to my liver, MRI showed a single lesion. When they did surgery they found 5 other small liver lesion plus a few small tumors on my diaphragm. They didn’t finish the surgery, they closed me up and sent me back to my oncologist. I have an appointment with her next wee. This seems unique. I’m reaching out to see if anyone else had anything similar, and what the options are.
5/19 IIIC sigmoid cancer 2/25 lymph nodes positive
5/19 surgery
7/19 FOLFOX 6 months
9/20 recurrence to single lymph node
10/20 FOLFIRI 5 rounds
1/21 surgery to remove lymph node
4/21 CT NED
8/21 CT NED
11/21 CT NED
2/22 CT NED
5/22 CT NED
8/22 PET NED
11/22 CT NED
3/23 PET lesion on liver
3/23 MRI confirmed lesion
4/23 liver surgery aborted lesion found on diaphragm
5/23 chemo started
7/23 CT shows shrinkage of lesion, consult scheduled with surgeon

DarknessEmbraced
Posts: 3815
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Recurrence

Postby DarknessEmbraced » Sat Apr 15, 2023 11:17 am

I'm sorry that your cancer came back. *hugs* I hope your recovery and appointment go well.
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! :)

rp1954
Posts: 1849
Joined: Mon Jun 13, 2011 1:13 am

Re: Recurrence

Postby rp1954 » Sat Apr 15, 2023 2:09 pm

Basicly their default view is that it's a non curative surgical situation, now "chemo forever". Extra effort may turn up better answers than the std SOC.

Sorry for your experience. I suspect the system failed you in the monitoring, by relying primarily on scans when likely there were seriously suspicious blood panels in CEA, CA199, LDH, ALP or others. Too late on the alarm and response, inadequate on the chemistry on several levels, for monitoring and prevention.

I'm not saying you're drs failed the NCCN protocol, I'm saying the NCCN protocol itself was likely inadequate for prevention and for a timely, effective salvage response in your case. If you could share your current CEA, CA199, LDH, vitamin D levels, and any other blood work I talk to others, you might help yourself as well as others, now and in the future.

Although different than your situation, I found this paper on an isolated CRC met to the diaphagm informative in several areas.
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 chemo to almost nothing mid 2018, IV C-->2021. Now supplements

Dennyp
Posts: 83
Joined: Thu Oct 29, 2020 9:28 pm

Re: Recurrence

Postby Dennyp » Sat Apr 15, 2023 2:48 pm

DarknessEmbraced wrote:I'm sorry that your cancer came back. *hugs* I hope your recovery and appointment go well.

Thank you.
5/19 IIIC sigmoid cancer 2/25 lymph nodes positive
5/19 surgery
7/19 FOLFOX 6 months
9/20 recurrence to single lymph node
10/20 FOLFIRI 5 rounds
1/21 surgery to remove lymph node
4/21 CT NED
8/21 CT NED
11/21 CT NED
2/22 CT NED
5/22 CT NED
8/22 PET NED
11/22 CT NED
3/23 PET lesion on liver
3/23 MRI confirmed lesion
4/23 liver surgery aborted lesion found on diaphragm
5/23 chemo started
7/23 CT shows shrinkage of lesion, consult scheduled with surgeon

Dennyp
Posts: 83
Joined: Thu Oct 29, 2020 9:28 pm

Re: Recurrence

Postby Dennyp » Sat Apr 15, 2023 2:49 pm

rp1954 wrote:Basicly their default view is that it's a non curative surgical situation, now "chemo forever". Extra effort may turn up better answers than the std SOC.

Sorry for your experience. I suspect the system failed you in the monitoring, by relying primarily on scans when likely there were seriously suspicious blood panels in CEA, CA199, LDH, ALP or others. Too late on the alarm and response, inadequate on the chemistry on several levels, for monitoring and prevention.

I'm not saying you're drs failed the NCCN protocol, I'm saying the NCCN protocol itself was likely inadequate for prevention and for a timely, effective salvage response in your case. If you could share your current CEA, CA199, LDH, vitamin D levels, and any other blood work I talk to others, you might help yourself as well as others, now and in the future.

Although different than your situation, I found this paper on an isolated CRC met to the diaphagm informative in several areas.



I kind of think that is what I will be told. I wonder if there is a way it could go from inoperable to operable if the diaphragm tumors go away?
5/19 IIIC sigmoid cancer 2/25 lymph nodes positive
5/19 surgery
7/19 FOLFOX 6 months
9/20 recurrence to single lymph node
10/20 FOLFIRI 5 rounds
1/21 surgery to remove lymph node
4/21 CT NED
8/21 CT NED
11/21 CT NED
2/22 CT NED
5/22 CT NED
8/22 PET NED
11/22 CT NED
3/23 PET lesion on liver
3/23 MRI confirmed lesion
4/23 liver surgery aborted lesion found on diaphragm
5/23 chemo started
7/23 CT shows shrinkage of lesion, consult scheduled with surgeon

Rock_Robster
Posts: 1021
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Recurrence

Postby Rock_Robster » Sat Apr 15, 2023 8:57 pm

I’m sorry about the news. I was planned to have a liver resection (my 3rd), and on the table they discovered extensive distant lymph node disease. So they converted the surgery to a lymphadenectomy, and we treated the liver lesions with radiation instead. As RP said, if a large surgery isn’t likely to be curative then they often aren’t prepared to take the risks associated, and would prefer less invasive treatment.

Good luck, I hope the next steps yield some more treatment options for you (eg you could ask about a combined resection with CRS on the diaphragm, perhaps using radiation or thermal ablation on some of the smaller lesions if necessary).
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev

Dennyp
Posts: 83
Joined: Thu Oct 29, 2020 9:28 pm

Re: Recurrence

Postby Dennyp » Sat Apr 15, 2023 10:05 pm

Rock_Robster wrote:I’m sorry about the news. I was planned to have a liver resection (my 3rd), and on the table they discovered extensive distant lymph node disease. So they converted the surgery to a lymphadenectomy, and we treated the liver lesions with radiation instead. As RP said, if a large surgery isn’t likely to be curative then they often aren’t prepared to take the risks associated, and would prefer less invasive treatment.

Good luck, I hope the next steps yield some more treatment options for you (eg you could ask about a combined resection with CRS on the diaphragm, perhaps using radiation or thermal ablation on some of the smaller lesions if necessary).


Thanks. I would love that option, chemo for life is daunting. I hope maybe a combination of chem, radiation and surgery can get me back to NED. Keeping my fingers crossed.
5/19 IIIC sigmoid cancer 2/25 lymph nodes positive
5/19 surgery
7/19 FOLFOX 6 months
9/20 recurrence to single lymph node
10/20 FOLFIRI 5 rounds
1/21 surgery to remove lymph node
4/21 CT NED
8/21 CT NED
11/21 CT NED
2/22 CT NED
5/22 CT NED
8/22 PET NED
11/22 CT NED
3/23 PET lesion on liver
3/23 MRI confirmed lesion
4/23 liver surgery aborted lesion found on diaphragm
5/23 chemo started
7/23 CT shows shrinkage of lesion, consult scheduled with surgeon

User avatar
beach sunrise
Posts: 1027
Joined: Thu Mar 05, 2020 7:14 pm

Re: Recurrence

Postby beach sunrise » Sun Apr 16, 2023 1:47 am

I am also keeping fingers crossed that you find a good combo therapy.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

Dennyp
Posts: 83
Joined: Thu Oct 29, 2020 9:28 pm

Re: Recurrence

Postby Dennyp » Sun Apr 16, 2023 3:42 am

beach sunrise wrote:I am also keeping fingers crossed that you find a good combo therapy.


Thank you!
5/19 IIIC sigmoid cancer 2/25 lymph nodes positive
5/19 surgery
7/19 FOLFOX 6 months
9/20 recurrence to single lymph node
10/20 FOLFIRI 5 rounds
1/21 surgery to remove lymph node
4/21 CT NED
8/21 CT NED
11/21 CT NED
2/22 CT NED
5/22 CT NED
8/22 PET NED
11/22 CT NED
3/23 PET lesion on liver
3/23 MRI confirmed lesion
4/23 liver surgery aborted lesion found on diaphragm
5/23 chemo started
7/23 CT shows shrinkage of lesion, consult scheduled with surgeon

Dennyp
Posts: 83
Joined: Thu Oct 29, 2020 9:28 pm

Re: Recurrence

Postby Dennyp » Sun Apr 16, 2023 3:46 am

rp1954 wrote:Basicly their default view is that it's a non curative surgical situation, now "chemo forever". Extra effort may turn up better answers than the std SOC.

Sorry for your experience. I suspect the system failed you in the monitoring, by relying primarily on scans when likely there were seriously suspicious blood panels in CEA, CA199, LDH, ALP or others. Too late on the alarm and response, inadequate on the chemistry on several levels, for monitoring and prevention.

I'm not saying you're drs failed the NCCN protocol, I'm saying the NCCN protocol itself was likely inadequate for prevention and for a timely, effective salvage response in your case. If you could share your current CEA, CA199, LDH, vitamin D levels, and any other blood work I talk to others, you might help yourself as well as others, now and in the future.

Although different than your situation, I found this paper on an isolated CRC met to the diaphagm informative in several areas.


Sorry, I forgot to post my CEA levels. They were steadily rising for about a year ranging from 2.7 topping out at 13 when the found the liver lesion. We did several Ct, PET and MRIs in that year looking for the recurrence and didn’t find it until last month.
5/19 IIIC sigmoid cancer 2/25 lymph nodes positive
5/19 surgery
7/19 FOLFOX 6 months
9/20 recurrence to single lymph node
10/20 FOLFIRI 5 rounds
1/21 surgery to remove lymph node
4/21 CT NED
8/21 CT NED
11/21 CT NED
2/22 CT NED
5/22 CT NED
8/22 PET NED
11/22 CT NED
3/23 PET lesion on liver
3/23 MRI confirmed lesion
4/23 liver surgery aborted lesion found on diaphragm
5/23 chemo started
7/23 CT shows shrinkage of lesion, consult scheduled with surgeon

rp1954
Posts: 1849
Joined: Mon Jun 13, 2011 1:13 am

Re: Recurrence

Postby rp1954 » Sun Apr 16, 2023 5:25 am

Dennyp wrote:
rp1954 wrote:Basicly their default view is that it's a non curative surgical situation, now "chemo forever". Extra effort may turn up better answers than the std SOC.

Sorry for your experience. I suspect the system failed you in the monitoring, by relying primarily on scans when likely there were seriously suspicious blood panels in CEA, CA199, LDH, ALP or others. Too late on the alarm and response, inadequate on the chemistry on several levels, for monitoring and prevention.

I'm not saying you're drs failed the NCCN protocol, I'm saying the NCCN protocol itself was likely inadequate for prevention and for a timely, effective salvage response in your case. If you could share your current CEA, CA199, LDH, vitamin D levels, and any other blood work I talk to others, you might help yourself as well as others, now and in the future.


Sorry, I forgot to post my CEA levels. They were steadily rising for about a year ranging from 2.7 topping out at 13 when the found the liver lesion. We did several Ct, PET and MRIs in that year looking for the recurrence and didn’t find it until last month.

The more of your bloodwork that you can post, the more we can talk about biological differences, timelines and possibilities. A lot of us just order the extra panels ourselves. It costs more time and money explaining, arguing, begging things vs just simply done.

You are now looking for biological and statistical hints on escape routes to NED. Only a few routes are conventionally available, tend to be low %s, and often not offered by the onc shop around the corner. The more the better and you often need to be your own facilitator.
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 chemo to almost nothing mid 2018, IV C-->2021. Now supplements

JulesW
Posts: 32
Joined: Thu Jun 21, 2018 1:48 pm

Re: Recurrence

Postby JulesW » Wed May 24, 2023 6:03 pm

I had peritoneal involvement and got Folfiri last fall which dropped my CEA levels significantly and then I interviewed a number of surgeons from around the country. I had a cyto reductive surgery in December of last year. I'm aware that there's a fairly high rate of recurrence but some people seem to be doing okay years later.
My top surgeon recommendations would be Dr Turaga at Yale, Dr Kasspooles in Kansas or any of the surgeons at UCSD. You may get some pushback but it's the surgeons who can tell you yes or no definitively. The liver involvement makes it a little more tricky but I had lung involvement when the surgery was done and then had a final spot ablated earlier this month in my right lung close to some important blood vessels FYI
46 rectal ca. 12/16
LAR 1/17, 0/30 nodes +
CT 6/18 - 4 nodules R lung + 3 spots in left lung (largest 1.7cm)
Laser pulm. metastectomy B Germany 10/18 and 11/18
12/18 blood in urine -> rectal ca met on bladder
3/19 partial cystectomy
4/19 MSK self referral
Avastin + 5fu x 6 mos
3/21 blood in urine ->bladder recurrence + R ext iliac node
10/21 MSK partial cystectomy node turned out to be peritoneal implant
12/22 UCSD CRS surgery PCI score 8, 1m small bowel resected
NED after 6 and 1/2 years

Dennyp
Posts: 83
Joined: Thu Oct 29, 2020 9:28 pm

Re: Recurrence

Postby Dennyp » Thu May 25, 2023 3:55 am

After giving it thought I’m a little disappointed my surgeon didn’t just remove the diaphragm lesion and do the liver surgery. I think a more aggressive surgeon would have done it and spared me a second surgery. I really like him and I have faith in his skill but I think he’s too conservative. I will discuss using a different surgeon with my oncologist for my next surgery.
5/19 IIIC sigmoid cancer 2/25 lymph nodes positive
5/19 surgery
7/19 FOLFOX 6 months
9/20 recurrence to single lymph node
10/20 FOLFIRI 5 rounds
1/21 surgery to remove lymph node
4/21 CT NED
8/21 CT NED
11/21 CT NED
2/22 CT NED
5/22 CT NED
8/22 PET NED
11/22 CT NED
3/23 PET lesion on liver
3/23 MRI confirmed lesion
4/23 liver surgery aborted lesion found on diaphragm
5/23 chemo started
7/23 CT shows shrinkage of lesion, consult scheduled with surgeon

User avatar
beach sunrise
Posts: 1027
Joined: Thu Mar 05, 2020 7:14 pm

Re: Recurrence

Postby beach sunrise » Thu May 25, 2023 10:22 am

That is disappointing. I hope you find an aggressive skilled surgeon!
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

Dennyp
Posts: 83
Joined: Thu Oct 29, 2020 9:28 pm

Re: Recurrence

Postby Dennyp » Thu May 25, 2023 12:03 pm

beach sunrise wrote:That is disappointing. I hope you find an aggressive skilled surgeon!

Thanks, I’m confident I will.
5/19 IIIC sigmoid cancer 2/25 lymph nodes positive
5/19 surgery
7/19 FOLFOX 6 months
9/20 recurrence to single lymph node
10/20 FOLFIRI 5 rounds
1/21 surgery to remove lymph node
4/21 CT NED
8/21 CT NED
11/21 CT NED
2/22 CT NED
5/22 CT NED
8/22 PET NED
11/22 CT NED
3/23 PET lesion on liver
3/23 MRI confirmed lesion
4/23 liver surgery aborted lesion found on diaphragm
5/23 chemo started
7/23 CT shows shrinkage of lesion, consult scheduled with surgeon


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