Pathology report - some good news, also unexpressed MSH6

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I_will_fight
Posts: 34
Joined: Mon Jun 29, 2020 3:38 pm

Pathology report - some good news, also unexpressed MSH6

Postby I_will_fight » Sat Jul 18, 2020 12:44 pm

Hi all,

I recevied a piece of good news in my first post-surgery report

    Clean margins with closest margin over five inches away from the tumor (the removed 20 inches of colon, apparently)
    No infiltration in spleen (which was removed as part of surgery)
    Out of 37 lymphatic nodes removed none of them showed metastasis!

This puts my disease for now in the T3N0 staging

They will tell me next week whether chemotherapy is required or not.

It is true that I have two milimetric "ground glass" dots in my right lung´s median lobe but my doctor reassured me that it was very unlikely to be metastasis, sice aparently liver metastatis occurs almost invariably before lung metastasis does and my liver appears to be clean.

Another point is that my protein MSH6 is non expressed while the other three MMR proteins MLH1, MSH2 and PMS2 are conserved.

This was a bit of a surprise since deficient-MMR tumors are most common on the right side of the colon, while mine was found in the left side (near the spleen).

Does the loss of MSH6 indicate likelyhood of Lynch Syndrome, should I get genetic testing for the sake of my family?

Does this make me a candidate to Inmunotherapy as first line treatment?

Please, wise people of the forum, let me know what to make of this.

Thank you, love and health

JC
46 yo male at DX
June 2020 - 6 cm T3N0 cancer on left colon
No evidence of liver mets, two milimetric dots in lung (non specific)
July 8th 2020 - 50 cm colon and spleen removed
lymph nodes 37/0
MSH6 non expressed, other MMR proteins present

User avatar
CRguy
Posts: 10205
Joined: Sun Feb 10, 2008 6:00 pm

Re: Pathology report - some good news, also unexpressed MSH6

Postby CRguy » Sat Jul 18, 2020 11:09 pm

I_will_fight wrote:It is true that I have two milimetric "ground glass" dots in my right lung´s median lobe but my doctor reassured me that it was very unlikely to be metastasis, sice aparently liver metastatis occurs almost invariably before lung metastasis does and my liver appears to be clean.

Just FYI : I had NO hepatic involvement and had 1 single upper left lung met after a rectosigmoid primary.
I would be aggressive in any follow up monitoring regardless of what the doc "thinks" = JMO / BTDT

I_will_fight wrote: should I get genetic testing for the sake of my family?

YES I would, If you can possibly add to the knowledge base for your own family and maybe event prevent THEM from having to go through what you have
HELL YEAH !!!

AND congrats on all the good news in your post !!!!

Cheers and best wishes
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
13 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

I_will_fight
Posts: 34
Joined: Mon Jun 29, 2020 3:38 pm

Re: Pathology report - some good news, also unexpressed MSH6

Postby I_will_fight » Sun Jul 19, 2020 3:12 am

CRguy wrote:
I_will_fight wrote:It is true that I have two milimetric "ground glass" dots in my right lung´s median lobe but my doctor reassured me that it was very unlikely to be metastasis, sice aparently liver metastatis occurs almost invariably before lung metastasis does and my liver appears to be clean.

Just FYI : I had NO hepatic involvement and had 1 single upper left lung met after a rectosigmoid primary.
I would be aggressive in any follow up monitoring regardless of what the doc "thinks" = JMO / BTDT

I_will_fight wrote: should I get genetic testing for the sake of my family?

YES I would, If you can possibly add to the knowledge base for your own family and maybe event prevent THEM from having to go through what you have
HELL YEAH !!!

AND congrats on all the good news in your post !!!!

Cheers and best wishes
CRguy


Thanks for your reply CRguy, you are very nice.

Doctor mentioned that it was more common for cancers located in other areas (e.g. closer to the rectum) to bypass the hepatic barrier, but yes, I will definitely ask very insistently about those two little dots, it looks like I will have quarterly CAT scans and if any scan shows any growth action will be taken.

Do you happen to know if the MSH6 deficiency makes me a good candidate for inmunotherapy?

Thank you,

JC
46 yo male at DX
June 2020 - 6 cm T3N0 cancer on left colon
No evidence of liver mets, two milimetric dots in lung (non specific)
July 8th 2020 - 50 cm colon and spleen removed
lymph nodes 37/0
MSH6 non expressed, other MMR proteins present

brokenwings
Posts: 127
Joined: Mon Jan 07, 2019 1:50 am

Re: Pathology report - some good news, also unexpressed MSH6

Postby brokenwings » Sun Jul 19, 2020 4:11 am

Hi.

I second what CRguy said: colon cancer can bypass the liver and go straight to the lungs. Yes, it's less likely to act this way and yes, rectal cancers tend to do this more often than cancers in the colon. But don't forget this wise observation: "Cancer does whatever it wants."

As for your immunotherapy question, I'll send you a DM.

Hugs,

Paola
DX 2019 Adenocarcinoma Sigmoid colon. PC + ovarian met.
Obstruction. Temporary colostomy.
Folfirinox + Avastin: 6 cycles. Scans: partial response.
Surgery (CRS + HIPEC) 04/29: too much disease, surgery cancelled. Right ovary removed.
2nd ptotocol: IP chemo (oxaliplatin) + IV chemo (Folfiri + Avastin). 8 cycles
10/31/2019: 11 hour-long Hipec + 6 weeks in hospital
12/30/2019: liver met
02/05/2020: reversal surgery. New peri mets discovered
March 2020: 5fu+Avastin
May 2020: fistula
Back to 1957: 5fu.

brokenwings
Posts: 127
Joined: Mon Jan 07, 2019 1:50 am

Re: Pathology report - some good news, also unexpressed MSH6

Postby brokenwings » Sun Jul 19, 2020 4:36 am

I can't seem to send you a DM. Please, send me an email at allauda61@gmail.com
DX 2019 Adenocarcinoma Sigmoid colon. PC + ovarian met.
Obstruction. Temporary colostomy.
Folfirinox + Avastin: 6 cycles. Scans: partial response.
Surgery (CRS + HIPEC) 04/29: too much disease, surgery cancelled. Right ovary removed.
2nd ptotocol: IP chemo (oxaliplatin) + IV chemo (Folfiri + Avastin). 8 cycles
10/31/2019: 11 hour-long Hipec + 6 weeks in hospital
12/30/2019: liver met
02/05/2020: reversal surgery. New peri mets discovered
March 2020: 5fu+Avastin
May 2020: fistula
Back to 1957: 5fu.

I_will_fight
Posts: 34
Joined: Mon Jun 29, 2020 3:38 pm

Re: Pathology report - some good news, also unexpressed MSH6

Postby I_will_fight » Sun Jul 19, 2020 7:31 am

brokenwings wrote:I can't seem to send you a DM. Please, send me an email at allauda61@gmail.com


Thank you Paola,

I got your PM , and have replied, but the reply seems to be stuck in my outbox (maybe it needs to be approved, as I am fairly new here...)

Anyhow, I will send you an email

JC
46 yo male at DX
June 2020 - 6 cm T3N0 cancer on left colon
No evidence of liver mets, two milimetric dots in lung (non specific)
July 8th 2020 - 50 cm colon and spleen removed
lymph nodes 37/0
MSH6 non expressed, other MMR proteins present

User avatar
beach sunrise
Posts: 157
Joined: Thu Mar 05, 2020 7:14 pm

Re: Pathology report - some good news, also unexpressed MSH6

Postby beach sunrise » Sun Jul 19, 2020 11:41 am

I am very happy that you got a good report! Breathe
Yes, what CRguy said!
Be your own advocate, its your life not theirs. My onc was just going to send me home after SOC chemo even though I still had a high CEA, smh...We had a talk and I am continuing xeloda and its now working plus I have involved several other dr's in my care. CRguy's quote is what I tell them "You miss more by not looking...than not knowing". Also, research rp1954 posts. He has posted valuable info you won't find anywhere else.
Dx 8/19, RC, CEA 86, clinical T3N0M0
Neoadj 5FU/rad 6 wks
Surg 1-21-20 APR ostomy, - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
Adj mFOLFOX6, cea 7
8 rds 6-10 CEA 11.4, 4 more no oxa
6-17: CEA 11.1 AFP 11.2 CA125 25.7 CA199 9
7-2: CEA 11.1 AFP 5.3 CA125 24.8 CA199 8
7-16: CEA 10.3 AFP 5.3 CA125 26.6 CA199 8
7-28 CEA 8.8 AFP 7.7 CA125 27 CA199 7
MHL1+
PMS2+
MSH2+
MSH6+
Chemo sensitivity test NCI "Test failed, neo-adj chemorad did its job. Not enough ca. cells to test."

Rock_Robster
Posts: 509
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Pathology report - some good news, also unexpressed MSH6

Postby Rock_Robster » Sun Jul 19, 2020 9:14 pm

brokenwings wrote:Hi.

I second what CRguy said: colon cancer can bypass the liver and go straight to the lungs. Yes, it's less likely to act this way and yes, rectal cancers tend to do this more often than cancers in the colon. But don't forget this wise observation: "Cancer does whatever it wants."

As for your immunotherapy question, I'll send you a DM.

Hugs,

Paola

Quite right - around 24% to lungs first on average for colon (not rectal): https://www.karger.com/Article/Fulltext/454687

Completely agree with all advice to be conservative around this; but hopefully all fine.

Cheers
Rob
38M Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1
11/18 FOLFOX x6
3/19 Liver resect
5/19 25x pelvic VMAT radiation; complete met. response
07/19 Robot ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resect #2
02/20 Ileo reversed
03/20 NED (PET+MRI)
06/20 NED (CT+MRI)
07/20 Clear scope

boxhill
Posts: 569
Joined: Fri Apr 06, 2018 11:40 am

Re: Pathology report - some good news, also unexpressed MSH6

Postby boxhill » Mon Jul 20, 2020 12:10 pm

Congratulations on all the good news!

Regarding your ground glass lung nodules, I would not be complacent, but also not leap to the conclusion that it is cancer. Ground glass nodules are also caused by infections and other conditions. Especially if they are so tiny--2mm?--just keeping an eye on them for now is very reasonable. There is some statistic that I forget, but a large percentage of people are found to have lung nodules on scans, and a definite majority of those are harmless. According to what I've read, pure ground glass opacities are less likely to be lung cancer than part solid ones. (Although I would wonder whether this distinction can even be made in something that small!) FWIW, I was found to have a 2mm lung node which has been deemed harmless after a few scans.

If you are dMMR as a result of MSH6 I think at this point it would be considered *routine* to have genetic counselling and testing done on both tumor samples and a blood sample to determine whether this is somatic or germline. This should be done for YOUR sake as well as that of your family. There are a variety of other genes that need to be checked, notably BRAF and KRAS. Since more is known about genes and cancer therapy all the time, it is vital to have this info.

When I was diagnosed in 2018 and the tumor was found to be MSI-H dMMR, the first thing my oncologist did was recommend further genetic testing, which we were eager to do. The second thing he did was ask if I would like to get a second opinion from one of the research doctors at Dana Farber. He's a good oncologist. :D

I *think* you would also be considered eligible for first-line immunotherapy. From an FDA press release:

Today, the U.S. Food and Drug Administration approved Keytruda (pembrolizumab) for intravenous injection for the first-line treatment of patients with unresectable or metastatic microsatellite instability-high (MSI-H) or mismatch repair deficient (dMMR) colorectal cancer. This marks the first immunotherapy approved for this patient population as a first-line treatment and which is administered to patients without also giving chemotherapy.


What to do in the way of adjuvant treatment can be a complex decision partly depending on your tumor genetics.

Best of luck.
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 CT NED
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
Suspend treatment

I_will_fight
Posts: 34
Joined: Mon Jun 29, 2020 3:38 pm

Re: Pathology report - some good news, also unexpressed MSH6

Postby I_will_fight » Thu Jul 23, 2020 3:14 am

boxhill wrote:Congratulations on all the good news!

Regarding your ground glass lung nodules, I would not be complacent, but also not leap to the conclusion that it is cancer. Ground glass nodules are also caused by infections and other conditions. Especially if they are so tiny--2mm?--just keeping an eye on them for now is very reasonable. There is some statistic that I forget, but a large percentage of people are found to have lung nodules on scans, and a definite majority of those are harmless. According to what I've read, pure ground glass opacities are less likely to be lung cancer than part solid ones. (Although I would wonder whether this distinction can even be made in something that small!) FWIW, I was found to have a 2mm lung node which has been deemed harmless after a few scans.

If you are dMMR as a result of MSH6 I think at this point it would be considered *routine* to have genetic counselling and testing done on both tumor samples and a blood sample to determine whether this is somatic or germline. This should be done for YOUR sake as well as that of your family. There are a variety of other genes that need to be checked, notably BRAF and KRAS. Since more is known about genes and cancer therapy all the time, it is vital to have this info.

When I was diagnosed in 2018 and the tumor was found to be MSI-H dMMR, the first thing my oncologist did was recommend further genetic testing, which we were eager to do. The second thing he did was ask if I would like to get a second opinion from one of the research doctors at Dana Farber. He's a good oncologist. :D

I *think* you would also be considered eligible for first-line immunotherapy. From an FDA press release:

Today, the U.S. Food and Drug Administration approved Keytruda (pembrolizumab) for intravenous injection for the first-line treatment of patients with unresectable or metastatic microsatellite instability-high (MSI-H) or mismatch repair deficient (dMMR) colorectal cancer. This marks the first immunotherapy approved for this patient population as a first-line treatment and which is administered to patients without also giving chemotherapy.


What to do in the way of adjuvant treatment can be a complex decision partly depending on your tumor genetics.

Best of luck.



Thanks for the reply, the info and the kind words boxhill.

I will definitely keep an eye on those pesky lung nodes, I think the plan is to get a CT every three months for now.

I am not sure if Keytruda is available in Spain for colon cancer, I think our Social Security only approves it for lung cancer. And while you can have it privately i doubt my insurance covers it (and this is a 100K euro per year drug)

Regarding genetic testing, yeap, I will definitely push for it.

I am also surprised my report says nothing about KRAS or BRAS, I will ask this question in my appointment later today.

Another source of concern that I forgot to mention is that my report says perineural invasion present. I have read a bit about it seems to be a risk factor even if Limphatic Nodes are not affected.

I will see if there is any thread in the forum that discusses this in depth, else I will start another thread.

Thanks again, best regards.

JC
46 yo male at DX
June 2020 - 6 cm T3N0 cancer on left colon
No evidence of liver mets, two milimetric dots in lung (non specific)
July 8th 2020 - 50 cm colon and spleen removed
lymph nodes 37/0
MSH6 non expressed, other MMR proteins present

brokenwings
Posts: 127
Joined: Mon Jan 07, 2019 1:50 am

Re: Pathology report - some good news, also unexpressed MSH6

Postby brokenwings » Thu Jul 23, 2020 6:23 am

Neither Keytruda nor any other immunotherapy drugs are approved for CRC in France (even for MSI-H folks). However, my oncologist told me her MSI-H patients get access to those drugs through clinical trials... not an ideal situation but better than nothing I guess.
DX 2019 Adenocarcinoma Sigmoid colon. PC + ovarian met.
Obstruction. Temporary colostomy.
Folfirinox + Avastin: 6 cycles. Scans: partial response.
Surgery (CRS + HIPEC) 04/29: too much disease, surgery cancelled. Right ovary removed.
2nd ptotocol: IP chemo (oxaliplatin) + IV chemo (Folfiri + Avastin). 8 cycles
10/31/2019: 11 hour-long Hipec + 6 weeks in hospital
12/30/2019: liver met
02/05/2020: reversal surgery. New peri mets discovered
March 2020: 5fu+Avastin
May 2020: fistula
Back to 1957: 5fu.

boxhill
Posts: 569
Joined: Fri Apr 06, 2018 11:40 am

Re: Pathology report - some good news, also unexpressed MSH6

Postby boxhill » Thu Jul 23, 2020 1:08 pm

Regarding trials as a means of access to Keytruda, I was consistently told that because I had no known masses after surgery, like you, I wouldn't be able to get into one. Someone on another forum joked that NED sometimes is said to stand for "not enough disease." :D It's very nice not to have any known masses, of course, but I was very frustrated. Especially when I found out that people who are MSI-H with a KRAS mutation were considered less likely to respond to FOLFOX. (The info about this is not clear, at least from what I've found.)

But that was 2 years ago and things change rapidly.

At this point, whether or not you decide to do adjuvant chemo, and if so, what kind, you can be happy that you do not appear to have any obvious, crucial masses, and that you probably have Immunotherapy in your back pocket for the future. And treatment options and availability only get better as time passes and science advances.
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 CT NED
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
Suspend treatment


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