Children Monitoring

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saltygirl
Posts: 164
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Children Monitoring

Postby saltygirl » Sun Jun 19, 2022 2:38 pm

My daughter is heading for 1st colonoscopy and endoscopy at the Stanford hospital. Hope they will do a good job. She is a college student. My genetic testing didn’t show any known genes. But I think that doesn’t mean anything. I know both my kids should have regular colonoscopy / 5 years schedule.
Stage 4, distant lymph nodes May 2020, braf/kras mutations
11 folfoxiri
Intense radiation 1 week on distant lymph nodes
Surgery, hysterectomy, colon resection, distant lymph nodes resection
Complete pathological response to chemo.
NED 2021
NED 2022
NED 2023

aquarian_asian
Posts: 48
Joined: Wed Jul 07, 2021 7:07 am

Re: Children Monitoring

Postby aquarian_asian » Mon Jun 20, 2022 4:47 am

Best wishes for the tests. It is good to have them tested.
Cheers
Feb 2021 - Dx Stage3B - rectal cancer (Age is 48, Male)
April 2021 - Radiation - for a week (5 mins x 5 days)
May 2021 - LAR surgery
Pathology: G2, LN+ PVI+, Lymph Nodes 5 out of 22
Temporary Ileostomy
Jun-Aug 2021 - Chemo 4 cycles 3 months (CAPOX)
Feb 2022 - Ileostomy reversal

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Children Monitoring

Postby claudine » Mon Jun 20, 2022 9:36 am

That's a really good thing to do; my daughter has digestion issues and given her dad's history (Crohn's disease and now rectal cancer) I think she should get a colonoscopy/meet with a GE doc sooner than later. I hope your daughter's tests come back clear!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

aquarian_asian
Posts: 48
Joined: Wed Jul 07, 2021 7:07 am

Re: Children Monitoring

Postby aquarian_asian » Tue Jun 21, 2022 6:24 am

i haven't done any tests for my children (daughter & son); my pathology says no defect in MMR, also i am on a queue for gentic test in August 2022.

Thanks
Feb 2021 - Dx Stage3B - rectal cancer (Age is 48, Male)
April 2021 - Radiation - for a week (5 mins x 5 days)
May 2021 - LAR surgery
Pathology: G2, LN+ PVI+, Lymph Nodes 5 out of 22
Temporary Ileostomy
Jun-Aug 2021 - Chemo 4 cycles 3 months (CAPOX)
Feb 2022 - Ileostomy reversal

saltygirl
Posts: 164
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: Children Monitoring

Postby saltygirl » Wed Jun 22, 2022 12:19 pm

Thank you. Both my kids will start with regular colonoscopy early 20s
Stage 4, distant lymph nodes May 2020, braf/kras mutations
11 folfoxiri
Intense radiation 1 week on distant lymph nodes
Surgery, hysterectomy, colon resection, distant lymph nodes resection
Complete pathological response to chemo.
NED 2021
NED 2022
NED 2023

Sunnycd
Posts: 88
Joined: Fri Feb 26, 2021 10:36 am

Re: Children Monitoring

Postby Sunnycd » Sat Jun 25, 2022 8:40 pm

I have been wondering about when my kids, who are 18 and 20 y.o., should start having colonoscopies. There was no history of colon cancer in my family, and testing showed it wasn’t genetic. I read in this forum that it would be a good idea for them to get a life insurance prior to getting colonoscopies, since depending on diagnosis, they could be uninsurable down the road…
DX Feb. ‘21 CC IIB @ 51
Jan. ‘21 ER surgery, temp. colostomy
Sigmoid, adernocarcinoma
T4aN0MX, G2
0/24 lymph nodes
LVI: indefinite
PNI: not identified
Margins: clear
March ‘21 started 4 rounds of CAPOX
06/17/21 last day of CAPOX
06/25/21 CT scan clear
CEA: @ dx 4, post surgery 1.9, post chemo: 2.9; 09/21: 1.5
07/14/21 colostomy reversal
09/24/21 CT clear
10/12/21 colonoscopy; 1 polyp
12/05/23 colonoscopy clear
MSS, RAS/RAF wild, PIK3CA mutant

Rock_Robster
Posts: 1027
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Children Monitoring

Postby Rock_Robster » Sun Jun 26, 2022 1:23 am

Sunnycd wrote:I have been wondering about when my kids, who are 18 and 20 y.o., should start having colonoscopies. There was no history of colon cancer in my family, and testing showed it wasn’t genetic. I read in this forum that it would be a good idea for them to get a life insurance prior to getting colonoscopies, since depending on diagnosis, they could be uninsurable down the road…

Both great questions. My view would be ‘as early as possible’, ie as early as you can find a good GI that’s willing to do them. The main thing then will be to make sure they keep them up regularly - if there’s no polyps found (and no know genetic link with your CRC) then you should discuss this with a good GI, but I would have thought 3 yearly is probably reasonable (they may prefer 5 however, though this feels a little long for me). The risks of a scope in an otherwise healthy person are very low (all complications rate is less than 0.3%), compared to the downside of missing something early. You may also have a battle with health insurance, depending on where you’re based.

I totally agree re life insurance. I’m so grateful I already had life and income protection insurance before I was diagnosed stage IV at 36 years old. I would like to get more now but of course that isn’t really an option, except through our pension programs (Australia) where they can’t exclude pre-existing conditions (but can enforce a waiting period). Life/IP insurance is generally cheaper the earlier you get it, so in my mind it makes sense to get it as soon as they start working (or if affordability is an issue, then perhaps as soon as they have a family or mortgage).
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
3/24 VAXINIA (CF33 + hNIS) trial

roadrunner
Posts: 460
Joined: Sun Jan 12, 2020 8:46 pm

Re: Children Monitoring

Postby roadrunner » Sun Jun 26, 2022 5:04 pm

This kinda stopped me in my tracks. I have 18- and 16-year-old kids, and I hadn’t considered this. My father died of colon cancer at 64, and of course there’s me. As with Sunnycd, there’s no other evidence of any genetic component )I was told there’s about “a 10% chance”). I hadn’t wanted to start them on colonoscopies (my eldest gets to make that call anyway) so soon simply because it seems too dark for their phase of life. Is there evidence of anything other than a very remote risk in this stage of life without evidence of a heritable component (e.g., Lynch Syndrome)? Are there recommendations to start this early?
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
6/20/22 TAE rectal polyp benign)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy for radio resistant met 7/7/23

saltygirl
Posts: 164
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: Children Monitoring

Postby saltygirl » Sun Jun 26, 2022 7:34 pm

Honestly I doubt in your case there is no genetic link. Your father and now you. Likely the link hasn’t been discovered. That’s my personal observation. I have no genetic link known. But already had melanoma and very close to cervical cancer in my 20s. I think there is a genetic link in my family. But it is unknown. My mom and her sister both had breast cancer. Nobody that I know of had colon cancer. My daughter is planing on led school. She is fully educated about my situation. At almost 21 she will have her 1st colonoscopy / endoscopy. Will repeat every 5 years depending the findings. The same my son.
Stage 4, distant lymph nodes May 2020, braf/kras mutations
11 folfoxiri
Intense radiation 1 week on distant lymph nodes
Surgery, hysterectomy, colon resection, distant lymph nodes resection
Complete pathological response to chemo.
NED 2021
NED 2022
NED 2023

saltygirl
Posts: 164
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: Children Monitoring

Postby saltygirl » Sun Jun 26, 2022 7:37 pm

My genetic counselor told me it was believed 95% of cancers are sporadic. The more genes are discovered the number is going down. So who knows eventually what % will be.
Stage 4, distant lymph nodes May 2020, braf/kras mutations
11 folfoxiri
Intense radiation 1 week on distant lymph nodes
Surgery, hysterectomy, colon resection, distant lymph nodes resection
Complete pathological response to chemo.
NED 2021
NED 2022
NED 2023

roadrunner
Posts: 460
Joined: Sun Jan 12, 2020 8:46 pm

Re: Children Monitoring

Postby roadrunner » Sun Jun 26, 2022 8:49 pm

I’ve had this thought. And my uncle (father’s brother) had CRC too. Used to tell myself that was likely from the inch of heavy metal soot my grandmother used to sweep off their porch every morning from the steel mill across the street. But I got hit quicker than my father. So yeah.

I already had a discussion with my wife. This thread was a good shake up in this regard.
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
6/20/22 TAE rectal polyp benign)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy for radio resistant met 7/7/23

saltygirl
Posts: 164
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: Children Monitoring

Postby saltygirl » Mon Jun 27, 2022 7:58 am

Generally the Dr say your child should start with colonoscopy 15 years before the age you were diagnosed. I hope for our children there will be other tools than just colonoscopy. I am hoping that eventually they will just have annual blood test to confirm no solid tumors are active etc.
Stage 4, distant lymph nodes May 2020, braf/kras mutations
11 folfoxiri
Intense radiation 1 week on distant lymph nodes
Surgery, hysterectomy, colon resection, distant lymph nodes resection
Complete pathological response to chemo.
NED 2021
NED 2022
NED 2023


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