CRC patient in Brazil

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klee81
Posts: 38
Joined: Fri May 09, 2014 4:23 pm
Facebook Username: Katie Lee

CRC patient in Brazil

Postby klee81 » Wed Oct 06, 2021 11:53 am

Thought I might try to see if anyone has international experience with CRC. My friends father-in-law who is Brazilian and lives there currently was just diagnosed with stage 4 CRC with bone mets. So far they are planning to do an ostomy surgery to relieve the perforated colon (fluid accumulation in the abdominal cavity). There hasn't been talk of treatment yet because he has lost a lot of weight and needs to gain his strength back, the family has been told he is terminal so far. His daughter lives in Seattle, so they are providing both emotional and financial support from the states.

Can anyone recommend resources for this family? I have so far offered advice on what types of questions to ask the oncologist ie: treatment plan, tumor marker testing, second opinions and such, but wanted to see what else they could be asking or doing during this time.
age 40 F, married two kiddos
Dx age 33 in 2014
4.11:RC - T1N0M0 pre-op
4.15: CT spot on lung will follow
6.9: APR with perm colostomy
6.9: spot on liver benign
6.16: all 16 nodes clear
NED!!!!!
2016 Colondar Model
New Grad RN, future WOC Nurse

catstaff
Posts: 165
Joined: Wed Mar 03, 2021 11:37 am

Re: CRC patient in Brazil

Postby catstaff » Wed Oct 06, 2021 4:10 pm

I don't know of any resources in Brazil but wanted to note that any patient not medically classified as "curable" would be considered "terminal." It does not mean the patient is actively dying. So figuring out treatment options is important. Bone mets alone are pretty rare in CRC, was that all they found? Distal lymph nodes perhaps? They can treat bone mets with radiation as well as chemo if they are symptomatic.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

Claudine
Posts: 562
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: CRC patient in Brazil

Postby Claudine » Thu Oct 07, 2021 10:06 am

I concur with Catstaff; my husband also has a bone met so he will never be called "cured" (since it can't be resected), but it's been almost 4 years since diagnosis and he's still here! At diagnosis he did not have any other mets but the one in his L4 (they never even found the primary tumor). He had EBRT then SBRT radiation for it (EBRT wasn't precise enough, so he travelled to a larger hospital for SBRT). How many bone mets does this person have, and where are they located?
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 81.1, low 3.2, now 66.1
Scan 03/19: Multiple small lung nodules, now gone/calcified
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 09/17/2021: stable

catstaff
Posts: 165
Joined: Wed Mar 03, 2021 11:37 am

Re: CRC patient in Brazil

Postby catstaff » Fri Oct 08, 2021 7:42 am

Honestly I think part of the issue with bone mets is that the standard is *not* to treat them unless they are symptomatic. They can't resect them conventionally, but there are devices that can ablate them and then they can fill the hole with bone cement, but this seems to be rarely done. Even when they use radiation, they don't try to kill them, just "manage" them. I understand that there are risks but they just assume there is no benefit to destroying the met in most cases.

My husband has a single met and it's very small and anterior in the vertebra, so away from the cord, so it seems it would be fairly low risk to destroy it but I doubt that would be considered.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

klee81
Posts: 38
Joined: Fri May 09, 2014 4:23 pm
Facebook Username: Katie Lee

Re: CRC patient in Brazil

Postby klee81 » Fri Oct 08, 2021 5:10 pm

Thank you everyone! I think some of the information getting to the family in the states gets somewhat lost in translation. I don't have exact bone mets info on him, but I wanted to reassure the family that they might make it sound like it is terminal when treatment options should still be explored or considered. I also think there may be some cultural taboos with a CRC diagnosis as well, or just cancer in general as well as religious implications for attitudes towards cancer diagnosis. I did tell the daughter and son-in-law that to seek second opinions, advocate for him, and ask those pertinent questions about treatment options. I did suggest that they may have said terminal, but translation wise it could be incurable but treatable and those are the things they need to ask about.
age 40 F, married two kiddos
Dx age 33 in 2014
4.11:RC - T1N0M0 pre-op
4.15: CT spot on lung will follow
6.9: APR with perm colostomy
6.9: spot on liver benign
6.16: all 16 nodes clear
NED!!!!!
2016 Colondar Model
New Grad RN, future WOC Nurse


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