New and confused

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Confused
Posts: 4
Joined: Tue Feb 07, 2023 8:42 am

New and confused

Postby Confused » Tue Feb 07, 2023 9:06 am

Hi all. I'm not even sure I should be here. I'm not sure on the diagnosis. The waiting is torture. Please could someone help me understand the pathology report as discussions at the hospital are ongoing, but I'm not in the loop with them.

Pathology report:
Tubulovillous adenomatous lesion with widespread high grade dysplasia. There is surface ulceration extending into submucosa. In one area there are occasional glands extending into the submucosa showing minor element of desmoplasia.

Further check with deeper levels and special stains:
Confirming the original diagnosis of neoplastic glands surrounded by desmoplastic reaction. To regard this as early infiltration of the submucosa.

I've just had a CT scan. Is this reading as benign? Caught early? Opinions welcome, please

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

Re: New and confused

Postby aquarian_asian » Mon Feb 13, 2023 4:21 am

Looks like some pre-cancerous stage from what your wordings tells , but get it clarified with your medical team.
Dont get panic , stay relaxed and our best prayers; Update us once you get any information from the doctors.
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

Confused
Posts: 4
Joined: Tue Feb 07, 2023 8:42 am

Re: New and confused

Postby Confused » Sun Mar 05, 2023 3:43 am

Thanks for the reply. It turns out it was cancer of the sigmoid part of the bowel. Due surgery to remove the section and lymph nodes. It'll be keyhole surgery. I'm assuming lots of members here have unfortunately had to go through this.

Any advice on encouraging quick recovery, what to take to hospital and any general advice?

I'm not so worried about the surgery, more about whether there is a spread into the lymph nodes.

Thanks in advance.

rp1954
Posts: 1855
Joined: Mon Jun 13, 2011 1:13 am

Re: New and confused

Postby rp1954 » Sun Mar 05, 2023 1:01 pm

Here's my point of view, from what we did.

First I had substantial family history with CRC and was aware of important "first aid" plans for CRC and CRC surgery. Decisive actions that started best on Day 1 or during the first week. (see Day1, Week1 post in the link at the bottom)
We did those with great benefit. It was a lifesaver for my wife.

Second, there were substantial inefficiencies that made timely information difficult, confused, confusing and slow - taking a year to uncover stuff or bits to dribble in. The biggest keys for us were in missing blood data, that done best, needs to start close as possible to diagnosis. Mistakes get made, and better data can help you see, stop and recover from them. Better data can remove or narrow unknowns and uncertainties, and create opportunities.

Some of the data is irreplaceable and will be lost if you don't get it now. Some of the data may or may not be irreplaceable. I have observed that if time is short before first treatment, surgery or radiation, the best data coverage is to self- order additional blood tests now if the drs haven't already ordered them. I often wonder how many patients suffer or die because they waited on their doctors or insurance to approve something of minor cost. initial blood tests before surgery

Third, get a board certified colorectal surgeon.

Fourth, if things look bad, don't panic. Read, research, think and plan as much as possible. Extra money spent wisely the first weeks and year can pay great dividends. Hold on to a cash reserve, try to avoid spending too much in one place.

Fifth, ask questions and consider second or multiple opinions from different kinds of drs.

Here's a prior version of this discussion with links Checklist and Day1, Week1
Last edited by rp1954 on Sun Mar 05, 2023 2:02 pm, edited 3 times in total.
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 chemo to almost nothing mid 2018, IV C-->2021. Now supplements

roadrunner
Posts: 465
Joined: Sun Jan 12, 2020 8:46 pm

Re: New and confused

Postby roadrunner » Sun Mar 05, 2023 1:57 pm

It sounds like you had a scan. Were any suspicious lymph nodes found? Any other concerning indications? What is your team saying about initial staging?
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

Confused
Posts: 4
Joined: Tue Feb 07, 2023 8:42 am

Re: New and confused

Postby Confused » Sun Mar 05, 2023 2:04 pm

Thanks for replies.

CT scan done. No evidence of distant metastasis. Which sounds good.

As I understand it, I think currently thought as early evidence of invasion of submucosa, but no formal staging given. I am guessing stage 1 or 2? I think they said staging after procedure to remove colon section and glands. Stage 3 if found in lymph glands? But hopeful that if it seemed ok on the CT scan, that it'll be a good outcome? It was all a bit of a blur

Rock_Robster
Posts: 1028
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: New and confused

Postby Rock_Robster » Sun Mar 05, 2023 8:21 pm

Confused wrote:Thanks for replies.

CT scan done. No evidence of distant metastasis. Which sounds good.

Under the circumstances, this is fantastic news. You have every right to be optimistic and hopeful.

Confused wrote:Stage 3 if found in lymph glands? But hopeful that if it seemed ok on the CT scan, that it'll be a good outcome? It was all a bit of a blur

Short answer is yes, stage 3 if found in local lymph nodes. But CT imaging isn’t always perfect for this area, so the only way to be certain is the pathology that is done after surgery.

Stage 2 vs 3 may determine what further treatment, if any, you do after surgery. They will also look at other risk factors associated with your pathology. Either case still have good prospects for a very good long term outcome. The most important thing is getting accurate staging and appropriate treatment for your particular presentation (including, as rp suggests, the best certified surgeon you can get).

Best of luck.
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

Confused
Posts: 4
Joined: Tue Feb 07, 2023 8:42 am

Re: New and confused

Postby Confused » Mon Mar 06, 2023 8:55 am

Thanks for the replies on this - really helpful.

Trying my best to keep my chin up. Based in the UK, so I wonder if we don't 'shop around' as much for surgeons here, but just take who we get at the hospital?

Thanks for the responses though - will mention about blood tests at the pre op meeting. Did anyone who had similar surgery have an idea of time taken to get sent home after the operation? Not sure how out of it I will be and how much to take with me to keep occupied.

Thanks

nmorgen
Posts: 82
Joined: Sat Nov 05, 2022 10:31 am

Re: New and confused

Postby nmorgen » Tue Mar 07, 2023 8:20 pm

I just want to wish you good luck on your surgery and recovery.
DH age 47
DX 10/22 stage 4
2 tumors in sigmoid colon 2 Mets liver
adenocarcinoma
MSI-H, TMB-H 38, KRAS G13V, ERBB2 neg, BRCA2, Lynch Syndrome
Grade 1 well differentiated
12/1/22 Yervoy and Opdivo CEA 5.4
12/19/22 Yervoy & Opdivo CEA 4.6
01/12/22 Yervoy & Opdivo CEA 3.9
2/13/23 Yervoy& Opdivo CEA 3.4
3/7/23 ct scans no change
3/9/23 Opdivo CEA 3.4
4/4/23 Opdivo CEA 2.3
6/1/23 Opdivo CEA 2.6


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