second guessing everything right now . . .

Please feel free to read, share your thoughts, your stories and connect with others!
jep
Posts: 206
Joined: Sun Jun 11, 2017 7:45 pm

second guessing everything right now . . .

Postby jep » Thu Aug 29, 2019 4:34 pm

I just got off of the phone with my husband's oncologist . . . we are having the DNA sequencing testing done at Yale, and hopefully there will be a clinical trial available . . . I'm really pissed at myself right now because I thought this testing had been done already. My husband sees a local oncologist, but we've been checking his treatment every step of the way with his doc at MSK. Part of me feels like I should have been more vigilant, but I thought we were covering all of our bases. My husband has tried 3 different types of chemo, and he also did radiation to the colon. Is this abnormal to wait this long to do the DNA sequencing test? I feel like this should have already been in place . . . I've been reading up on it, and some sources suggest that this type of testing is done when more standard meds aren't working . . . can anyone chime in here and let me know your thoughts . . . I really appreciate it . . . we have no clear answers right now . . . surgeon thinks we should do radiation to the lymph nodes . . . oncologist isn't sure about radiation and wants to get the sequencing results first . . . we have an appointment at MSK on 9/18, and I'm in panic mode . . . please help.
Thank you all,
jep
Wife of DH (47) Stage IV CC 5/16/17
T Loc: recto-sigmoid
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8/20
Baseline CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irinotecan + Vectobix (started in 11/18)
CEA: 1.7 (2/19)
Xeloda + radiation (5/19)
Surgery: 8/21/19 (aborted)
Phase 1 Trial 10/19 - 12/19
Bypass surgery 12/6/19
Folfox + vectibix 1/2/19 - 4/3/20
?

Punky44
Posts: 437
Joined: Mon Oct 01, 2018 4:29 pm

Re: second guessing everything right now . . .

Postby Punky44 » Thu Aug 29, 2019 5:28 pm

I am sorry I don’t have an answer but I didn’t want to read and not respond—just hoping you get answers and can get out of panic mode bc we all know that’s the worst feeling. ((Hugs)).
Caregiver to my amazing mom (68)
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
CEA 2.1; 1.9; 2.6; 2.8
6/28/19 Reversal and port out
10/22/19: CT showed new nodules
1/28/20: CT showed nodules shrinking

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

NHMike
Posts: 2401
Joined: Fri Jul 21, 2017 3:43 am

Re: second guessing everything right now . . .

Postby NHMike » Thu Aug 29, 2019 9:20 pm

There are two types of DNA testing: Genomic testing which looks at the DNA of the tumor, so a tumor biopsy is required, and, Genetic testing which is DNA of the person (as in a blood test). Genomic testing can tell you the specific mutation or mutations in the tumor. My mutation is KRAS G12D, either the most common or among the most common mutations in Colorectal Cancer. There are some mutations that are aggressive and I think that it would be good to know that up front. Some mutations may have targeted therapies. Sometimes knowing the mutation tells you that a particular therapy shouldn't work. Sometimes there are genetic factors that would indicate that some targeted therapies may work.

Genomic testing is not standard of care so insurance may not cover it unless the doctor argues for it. I asked my local oncologist for genomic testing and he blew me off. My son's manager offered to do it for me which is why I know what it is.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

jep
Posts: 206
Joined: Sun Jun 11, 2017 7:45 pm

Re: second guessing everything right now . . .

Postby jep » Fri Aug 30, 2019 4:27 am

Thank you Punky, and thank you Mike!
Yes, I have read quite a bit lately (on this forum) about the difference between genetic testing and genomic . . . so we are finally getting the genomic testing done. My husband's only mets that we know of are these 2 para aortic lymph nodes and a very small spot (that has been radiated) very low in the colon (basically his rectum). I am very upset with myself for not pushing for this sooner, but we can't look back now . . . we have to get a healthy tissue sample done at Yale ASAP and get things rolling. I guess there are other more standard types of chemo that we can try as well, so that's good. I'm just happy that the genomic testing will be done and in place if/when an appropriate clinical trial becomes available.

My husband's surgeon (who actually had eyes and hands on the lymph nodes) thinks that radiation is still a viable option, but not everyone on the tumor board agrees with him (but they also weren't in there like he was). I think I need to take some deep breaths and let these consultations at Yale and MSK happen before I totally lose my mind. Thank you all for your knowledge and support . . .
jep
Wife of DH (47) Stage IV CC 5/16/17
T Loc: recto-sigmoid
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8/20
Baseline CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irinotecan + Vectobix (started in 11/18)
CEA: 1.7 (2/19)
Xeloda + radiation (5/19)
Surgery: 8/21/19 (aborted)
Phase 1 Trial 10/19 - 12/19
Bypass surgery 12/6/19
Folfox + vectibix 1/2/19 - 4/3/20
?

Deb m
Posts: 557
Joined: Tue Jan 14, 2014 10:08 am

Re: second guessing everything right now . . .

Postby Deb m » Fri Aug 30, 2019 9:24 am

We had our genetic testing all done at MDA and I remember it taking about 4-5 weeks.

jep
Posts: 206
Joined: Sun Jun 11, 2017 7:45 pm

Re: second guessing everything right now . . .

Postby jep » Fri Aug 30, 2019 10:57 am

Wow, really? I didn't realize that it would take that long :( . . . thank you for the heads up . . . I will ask my husband's doctors about that.
Wife of DH (47) Stage IV CC 5/16/17
T Loc: recto-sigmoid
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8/20
Baseline CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irinotecan + Vectobix (started in 11/18)
CEA: 1.7 (2/19)
Xeloda + radiation (5/19)
Surgery: 8/21/19 (aborted)
Phase 1 Trial 10/19 - 12/19
Bypass surgery 12/6/19
Folfox + vectibix 1/2/19 - 4/3/20
?

NHMike
Posts: 2401
Joined: Fri Jul 21, 2017 3:43 am

Re: second guessing everything right now . . .

Postby NHMike » Fri Aug 30, 2019 11:31 am

I asked my son how long it typically takes and he said two to four weeks. If it’s not done on-site, it has to be shipped to a hospital or lab to do it. I should ask my son for more details but I think that lab techs have to prepare the sample, queue it into the sequencing machine, anspd then process the data. I’ve looked at some of the code that processes the genomic data and it takes a long time to run on very powerful computers. Then a pathologist has to review the results and do a write up.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

jep
Posts: 206
Joined: Sun Jun 11, 2017 7:45 pm

Re: second guessing everything right now . . .

Postby jep » Fri Aug 30, 2019 11:35 am

Thank you Mike . . . I wonder if Yale/Smilow does theirs on site (?) . . . again, I will definitely ask the docs when we see them or speak with them.
jep
Wife of DH (47) Stage IV CC 5/16/17
T Loc: recto-sigmoid
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8/20
Baseline CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irinotecan + Vectobix (started in 11/18)
CEA: 1.7 (2/19)
Xeloda + radiation (5/19)
Surgery: 8/21/19 (aborted)
Phase 1 Trial 10/19 - 12/19
Bypass surgery 12/6/19
Folfox + vectibix 1/2/19 - 4/3/20
?

Pyro70
Posts: 156
Joined: Mon Jan 21, 2019 4:25 pm

Re: second guessing everything right now . . .

Postby Pyro70 » Fri Aug 30, 2019 1:26 pm

Many leading oncologists now recommend tumor sequencing to be done at diagnosis. It’s important, but also not all that likely to identify an actionable mutation. I can’t comment on the radiation / lymph node issue. I’d consult with a radiation onc now and get his opinion. I see no benefit in waiting for NGS results before getting a rad oncologist consult.
Dx Jan 2017 stage IVB w/ PC age 35
FOLFOX
SEP 17 HIPEC 1, anastamosis leak
XELODA
MAR 18 HIPEC 2
JUN 18, ileo reversal and 2nd anastamosis leak

jep
Posts: 206
Joined: Sun Jun 11, 2017 7:45 pm

Re: second guessing everything right now . . .

Postby jep » Fri Aug 30, 2019 1:39 pm

Thank you pyro70 . . . my mom's friend is an oncologist and he told me the same thing last night . . . "speak to a radiation oncologist" . . . I totally agree with you . . . we can't wait for those results to take action . . .
I appreciate your advice!
jep
Wife of DH (47) Stage IV CC 5/16/17
T Loc: recto-sigmoid
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8/20
Baseline CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irinotecan + Vectobix (started in 11/18)
CEA: 1.7 (2/19)
Xeloda + radiation (5/19)
Surgery: 8/21/19 (aborted)
Phase 1 Trial 10/19 - 12/19
Bypass surgery 12/6/19
Folfox + vectibix 1/2/19 - 4/3/20
?

User avatar
juliej
Posts: 3098
Joined: Thu Aug 05, 2010 12:59 pm

Re: second guessing everything right now . . .

Postby juliej » Fri Aug 30, 2019 3:52 pm

jep wrote:I think I need to take some deep breaths and let these consultations at Yale and MSK happen before I totally lose my mind.

Exactly! Very wise advice to yourself! Let the experts pore over all the information. Make sure both locations share their notes and possibly get them involved in a group phone conference if necessary.

Hugs to you!
Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: JJH and 41 guests