Just got post-surgery results and they aren't good

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mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Just got post-surgery results and they aren't good

Postby mpbser » Fri May 26, 2017 10:31 am

Husband's surgeon just called to tell us that 9 out of 54 nodes are cancerous and the spots on the liver were too. He'll be getting a PET scan next, we figure.

Finally meeting the oncologist Friday the 2nd.

:(
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Just got post-surgery results and they aren't good

Postby mpbser » Fri May 26, 2017 11:21 am

Trying to do my own assessment of stage based on the definitions posted on the very handy sticky post here at this forum.

Stage IV A
Any T, Any N, M1a: The cancer may or may not have grown through the wall of the colon or rectum, and it may or may not have spread to nearby lymph nodes. It has spread to 1 distant organ (such as the liver or lung) or set of lymph nodes (M1a).
Stage IV B
Any T, Any N, M1b: The cancer may or may not have grown through the wall of the colon or rectum, and it may or may not have spread to nearby lymph nodes. It has spread to more than 1 distant organ (such as the liver or lung) or set of lymph nodes, or it has spread to distant parts of the peritoneum (the lining of the abdominal cavity) (M1b).

Surgeon had said that the cancer didn't appear to have breached the wall of the colon but obviously it has spread to 9 nodes and at least 1 distant organ. I guess husband has Stage IV B.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

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LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Just got post-surgery results and they aren't good

Postby LPL » Fri May 26, 2017 12:15 pm

Hi mpbser/CV,
Sorry to hear that you got this news.
However, I am not an expert but if I understand this correct, the 9/54 nodes are referring to nearby lymph nodes. That would be IVa (like my husband). Please see quote below.

Stage IVa
"The cancer may or may not have grown through the wall of the colon or rectum (Any T). It might or might not have spread to nearby lymph nodes. (Any N). It has spread to 1 distant organ (such as the liver or lung) or distant set of lymph nodes (M1a). " https://www.cancer.org/cancer/colon-rec ... taged.html

I hope someone else can confirm this or correct me if I got this wrong.

I'm sure you will get more info when you meet the Oncologist. Kind Regards /L
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Just got post-surgery results and they aren't good

Postby mpbser » Fri May 26, 2017 3:45 pm

LPL,

You are correct. I misread the description in my frazzled state. Thanks for the input!
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

rp1954
Posts: 1525
Joined: Mon Jun 13, 2011 1:13 am

Re: Just got post-surgery results and they aren't good

Postby rp1954 » Fri May 26, 2017 4:04 pm

There's information that likely won't be known immediately about the mets, and information that is typically missed (e.g. some of the blood work). Completeness and accuracy develop with time, and effort.

The decisions we have made with many unknowns included steps like IV vitamin C after surgery, and alternative adjuncts including heavy duty nutrients to recover faster, and second time around, to begin metronomic chemo sooner, much sooner. In the US, Dr Lin's regimens, with capecitabine (an oral 5FU drug) + celecoxib, have been pretty much the only metronomic regimens available.

I notice that milk whey protein got the blame for liquid meal replacement formulas' indigestion in earlier discussions. At least in 2008-2010, these formulas used casein for their protein, a much different proposition. We made a decision to totally overhaul the formulas and use whey protein for cancer post surgery and replace the oils with coconut oil (+ some EV olive oil, EPO - Evening Primrose Oil, and nonrancid fish oil) in the formula, along with tons of vitamins and nutrients selected from the alternative world.

Since we were highly dissatisfied with the answers we initially got on chemo, let me brief you on what we found then after a hard eyed search. For metastatic colon cancer, chemo is essentially a necessity. The real issue is what treatment - which adjuncts, conventional and alternative, for the particular cell phenotypes and real estate involved.

From the conventional oncology world, we retained an oral 5FU drug from Asia applied metronomically (3x daily) and dumped the rest but with a realistic commitment to performance (inexpensive extra tests). The part where it gets a little trickier, are the nonstandard adjuvants that are milder than say, irinotecan and oxaliplatin, but need to be well chosen to achieve the treatment intensity inhibit or kill cancer cells, especially the particular cancer stem cells. Beyond perhaps, cimetidine, aspirin, celecoxib, vitamin D3, and PSK, conventional oncologists are not likely to even entertain anything else, if at all. Support there is typically with separate complementary medicine doctors, DIY or both.

With the right choices, we were able to get chemo in sooner, longer, with more success, with more comforts.
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 to almost nothing mid 2018, mostly IV C

DarknessEmbraced
Posts: 3444
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Just got post-surgery results and they aren't good

Postby DarknessEmbraced » Fri May 26, 2017 5:02 pm

I'm sorry it wasn't better news!*hugs* I hope his PET scan goes well!*hugs*
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! :)

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Just got post-surgery results and they aren't good

Postby mpbser » Tue May 30, 2017 10:04 am

Cheers, DarknessEmbraced.

I just had my follow up visit with surgeon and received the pathology report. There are a few pieces of information I haven't had time to look into, particularly what the "margins" mean. I have updated the data in my signature. The report also states "Margins: Uninvolved by invasive tumor." Does anyone know what this means?
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

SarahS
Posts: 49
Joined: Sat Mar 11, 2017 12:44 pm

Re: Just got post-surgery results and they aren't good

Postby SarahS » Tue May 30, 2017 10:26 am

The "margins" as far as I understand it mean that the tumor was removed along with a small amount of non cancerous tissue so that there was no cancer left in the area where the surgery took place.
You want "clear margins" and it sounds as though this is what your surgeon achieved.
I may not be explaining it as well as some but I hope that makes some sort of sense
Good luck on your journey, it sounds like you are asking all the right questions starting out.
Wife and caregiver to husband diagnosed with stage 4 colon cancer Nov 2016
Emergency surgery to remove blockage in cecum 12/03/2016
Stage 4 colon cancer. Mets to liver, peritoneum, possibly lungs
K-Ras G12C MSS
01/05/2017 Begin Folfox 6 plus Avastin
CEA pre surgery 114, post surgery 70, 02/2017- 35 03/2017- 23 04/2017- 12

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Maggie Nell
Posts: 1134
Joined: Wed May 27, 2015 1:57 am
Location: Melbourne, Australia

Re: Just got post-surgery results and they aren't good

Postby Maggie Nell » Tue May 30, 2017 10:31 am

Yup, means that the surgeon cut out enough tissue surrounding the invasive tumour.
The edges of the excised tissue are called 'margins'. The pathology is confirming that the
surgeon has got all the invasive tumour and done a proper job.

Best for Friday.
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency r. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
July 2019 : pending liver U/S, colonoscopy
rut roh

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Just got post-surgery results and they aren't good

Postby mpbser » Wed May 31, 2017 8:31 am

Thanks, Maggie and Sarah.

On another note, is it normal to have internal pain 12 days after surgery? My husband is a left side sleeper and his surgeon said it would be no problem whatsoever for him to resume his usual sleeping position. So, last night he tried sleeping on his left side (left hemi-colectomy, 54 nodes removed and large size margins) but the dull pain was too much for him to be comfortable. Granted, last night was his first night without Lyrica, so it is difficult to tell if the discomfort was from the position or just from being without Lyrica. In any case, what did you all experience two weeks post surgery in terms of pain and discomfort?

P.S. His surgical site became infected last week. We had not been shown any post-operation incision site care or anything when he was discharged (I wasn't there for his discharge and husband's paperwork didn't contain any information about this nor did he recall any instructions.). When the transitional nurse visited last Thursday, she showed me how inflammed the site was and demonstrated how to use gauze during the day. On Friday, there was yellow pussy discharge which I cleaned thoroughly and have been taking care of twice a day. By Saturday, the redness was greatly diminished but there is a spot of dark red that could be ulceration. The surgeon yesterday didn't seem overly concerned, removed all the staples, and prescribed him 500 mg Cephalexin 4x/day.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

benben
Posts: 314
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: Just got post-surgery results and they aren't good

Postby benben » Wed May 31, 2017 9:27 am

mpbser wrote:Thanks, Maggie and Sarah.

On another note, is it normal to have internal pain 12 days after surgery? My husband is a left side sleeper and his surgeon said it would be no problem whatsoever for him to resume his usual sleeping position. So, last night he tried sleeping on his left side (left hemi-colectomy, 54 nodes removed and large size margins) but the dull pain was too much for him to be comfortable. Granted, last night was his first night without Lyrica, so it is difficult to tell if the discomfort was from the position or just from being without Lyrica. In any case, what did you all experience two weeks post surgery in terms of pain and discomfort?


I had a lot of physical discomfort after my left hemi resection, on the left side.
It took a good couple weeks before I could sleep on my side at all. By the time I started sleeping on my sides again, I had the port installed so was back to sleeping on my back. That took another week before I could sleep on the side again.
As for the discomfort after 3 weeks it was vastly reduced, but could still feel some pain when pressure was applied to the area. Even to this day (6 weeks post op), I feel just an ever so slight sensation when applying pressure.
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
zarxio all treats
Treat 7 - 75% OXI
Treats 8-12 - NO OXI, Luke & 5FU
10/20/17 CT- NED
3/18 Scope - Clean
11/8 PORT OUT!
6/19 CT - NED (2 years!)

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Jacques
Posts: 579
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Just got post-surgery results and they aren't good

Postby Jacques » Wed May 31, 2017 11:02 am

mpbser wrote:Cheers, DarknessEmbraced.

I just had my follow up visit with surgeon and received the pathology report. There are a few pieces of information I haven't had time to look into, particularly what the "margins" mean. I have updated the data in my signature. The report also states "Margins: Uninvolved by invasive tumor." Does anyone know what this means?

Clear Margins
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=46277&p=338098#p338098

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LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Just got post-surgery results and they aren't good

Postby LPL » Wed May 31, 2017 3:46 pm

mpbser/CV,
About the surgical site.
Hubby has had 2 abdominal surgeries (not counting the emergency colostomy) and as I recall we/I was shown how to clean the site before DH left the hospital. Also we got a prescription for a local nurse to visit our home to make sure it was/I did it OK. She also came to our home and removed the huge number of staples when it was time for that. DH's surgeries were open so maybe that is different, also we live in Europe.
That "the redness has diminished" and that "the surgeon didn't seem overly concern" sounds good !
Hoping the pain will get better.
Kind Regards /L
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Just got post-surgery results and they aren't good

Postby mpbser » Wed May 31, 2017 6:08 pm

Thanks benben, Jacques, and LPL!
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Just got post-surgery results and they aren't good

Postby mpbser » Mon Jun 05, 2017 1:02 pm

Update:

So, we met with husband's oncologist on Friday. As expected, she first recommended FOLFOX which husband was not very happy about. The idea of a port and pump terribly disturbs him. He asked if there were any alternatives and oncologist spoke about Xeloda. We then asked if one was medically preferable over the other and we were told no. The oncologist said there were no comparative studies, but there was at least one very recently cited here in this forum. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2409640/ Based on this, and the fact that we have received forewarning here about how some doctors lean towards infusions because they are more lucrative for their practice than pills, I don't entirely trust this oncologist. My husband also remains skeptical and wary.

Because the liver biopsy came back positive, the next step is for him to have a liver MRI and a full-body PET. The oncologist will be scheduling them for mid to late June, four weeks post-surgery. He may need liver surgery or the alternative radiofrequency ablation (RFA). As soon as the MRI and PET results are available, we will be going to Dana Farber for a second opinion.

My only concern right now is the MRI. He has "40-80" metal staples in his abdomen which, although are mostly titanium, could contain a small percentage of nickel. I had read that MRIs of patients with internal staples should not be done until at least 6 weeks post-surgery. Since husband is diabetic and healing slower than the average patient, I would think that 8 weeks would be the earliest. However, his oncologist dismissed my concerns.

I will start a new thread for the staple issue so the topic subject catches attention.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED


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