Finally staged at IIIc

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jts
Posts: 29
Joined: Sat Aug 24, 2019 3:07 pm

Finally staged at IIIc

Postby jts » Sat Jan 04, 2020 3:27 pm

I had trans-anal TME surgery about 2.5 weeks ago. Recovery is going well I’d say. Within 3-4 days I was outside walking, and I think I went home on the 7th day after surgery. It’s kind-of a blur.

Partly because of the holidays they didn’t complete the pathology and post surgery report until after I checked out. I finally got it yesterday. My actual staging was kind of a shock. After chemo radiation the tumor had barely regressed at all and I had 7/16 cancerous lymph nodes. T3 N2b.

I guess I had let myself get a little optimistic based on the scans showing one or no suspicious nodes and my falling CEA levels. From what i read, the prognosis for IIIc gets dramatically worse than for milder stage 3. The lack of response to neoadjuvant treatment isn’t good either. I can’t help thinking that if the cancer had gotten to (at least) 7 nodes, it must be in more nodes that are left behind. I don’t know if the pathologist finds the 7th bad node node and can just stop hunting because that will determine staging. The surgeon said he was pretty sure he got more than 16 nodes, but 16 is what they dissected.

On the good side the margins were clean. The surgeon seems really happy with the procedure. My blood stats came quickly back up to mostly normal. I’m finding the ileostomy extremely convenient compared to the discomfort and unpredictability I had before.

The oncologists and surgeon had said they will recommend adjuvant chemo no matter what the final staging was. Now it’s obviously really necessary. The onc at the hospital recommends 8 rounds of FOLFOX. I understand that’s considered the minimum to be effective. He cited the results of the ADORE study. I can read the abstract and conclusion online, but the actual articles about that seem to be paid only.

I know it could be much worse, but I’m a little bit in shock still today.
Male 42
DX starting 08/2019
6 cm long tumor, 5cm above anocutaneous line
Clinical: T3 N1 M0
09-10/2019 Chemo-radiation, Capecitabine
12/2019 TME Surgery, clear margins, 7/16 nodes positive
Pathology: ypT3 ypN2b M0 - Stage IIIc

NHMike
Posts: 2363
Joined: Fri Jul 21, 2017 3:43 am

Re: Finally staged at IIIc

Postby NHMike » Sun Jan 05, 2020 10:32 pm

I think that it's pretty rough finding that things were worse than you expected. I'm also surprised that the chemo and radiation didn't improve expected pathology.

On medical studies - I've found that I could read medical journal articles by driving to a university where their library has public access. I can also ask my son as he works for a hospital or my niece who is a student.
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

Rock_Robster
Posts: 425
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Finally staged at IIIc

Postby Rock_Robster » Mon Jan 06, 2020 6:05 am

Sorry mate, obviously not the news you were hoping for. Sounds like you’ve landed in the worst house on the best street (I say this as an adaption of my initial diagnosis - the best house on the worst street).

Clear margins are great news, and 16+ nodes is a very decent harvest so hopefully some comfort there. I doubt they’d stop testing at node 7 - I’ve seen folk report higher positive node counts than this.

Of course most importantly this thing is still highly beatable. There is still a high chance that you won’t have to deal with this thing again, so focus on that outcome.

Best of luck,
Rob

PS: if there’s a paper you’re after you can always email the authors directly and they’ll usually be very happy to send you a copy - it’s the publishers that will charge for it. Some sites like ResearchGate also have a setup where you can message the authors directly too.
Male 37; Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+
3 LN; 4 liver mets
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed a liver spot
08-11/19 - FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 - Liver resection #2
02/20 - Stoma reversal booked

jts
Posts: 29
Joined: Sat Aug 24, 2019 3:07 pm

Re: Finally staged at IIIc

Postby jts » Wed Jan 08, 2020 10:08 am

Thanks guys for the responses.

Rock_Robster wrote:Of course most importantly this thing is still highly beatable. There is still a high chance that you won’t have to deal with this thing again, so focus on that outcome.


Is it, though? I know if you look at stats for all stage III, both RC and CC combined it seems not too bad. But every source I find that breaks down rectal cancer outcomes by detailed stage, especially conditioned on post-therapy yp staging, T3 N2b is pretty grim. Like a 70-80% chance of mets or recurrence, and 5 year survival in the 40s. I know it can be much much worse, but I'm trying not to delude myself about the situation. I am frustrated with the doctors I've talked to post surgery who try to be upbeat and say "oh, stage III with no mets! Prognosis is good!" when it really isn't.

I should be getting a port installed next week, and then los gehts with FOLFOX.

Hopefully the infusional 5-FU with oxaliplatin is more effective than the pills I took neoadjuvant. I don't know of any indication that something else would be better in this situation.

Monitoring will be really important. Unfortunately the official German guidelines for follow-up are pretty feeble IMO (check CEA every 6 months, chest xray every 12?). But it also seems that it's really up to the oncologist and they aren't constrained by the guidelines in this respect.
Male 42
DX starting 08/2019
6 cm long tumor, 5cm above anocutaneous line
Clinical: T3 N1 M0
09-10/2019 Chemo-radiation, Capecitabine
12/2019 TME Surgery, clear margins, 7/16 nodes positive
Pathology: ypT3 ypN2b M0 - Stage IIIc

NHMike
Posts: 2363
Joined: Fri Jul 21, 2017 3:43 am

Re: Finally staged at IIIc

Postby NHMike » Wed Jan 08, 2020 10:23 am

I looked at a stats calculator at MD Anderson and the 5-year survival is 59%. I had 3B and my 5-year survival rate is 68% but I'm also almost 20 years older.

I was T3N1b and my tumor was large, just a tad bit smaller than yours. But it shrunk 90% from Chemo and Radiation. I had three suspicious lymph nodes as well but they couldn't make a determination after pathology as they'd been fried by radiation. Did you have a big drop in tumor size from radiation?

I have not looked at recurrence rates yet - I never thought to look at them - I've mostly only looked at survival rates. People with recurrence do survive too - I've seen many cases of that here. I've seen lots of stage 4s living normal lives too.
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

Claudine
Posts: 225
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Finally staged at IIIc

Postby Claudine » Wed Jan 08, 2020 11:54 am

There was a time when a cancer diagnosis was a death sentence. Then it moved to you're either cured, or dead. Now it's entering a third phase - cancer as a chronic disease. Since my husband's diagnosis, I don't know how many people have told me about loved ones that have been living with cancer for 5, 10, 20 years. And that's the key - LIVING with cancer, not DYING of cancer! It takes a while to wrap one's head around this, that maybe there won't be a "final fix" but instead a series of steps forward, then steps back, then forward again, for a (hopefully) long time.
Try not to get too bogged down in statistics, whether recurrence or survival. Each individual is unique and they're improving all the time!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT radiation 04/18, SBRT 02/19
Resection small intestine 05/18 (no cancer found - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin since 03/19
6.7 cm left adrenal mass 03/19, 3.67 cm 12/19, surgery scheduled for 02/11
CEA since 03/19: high 58, low 3.2, now 10.2
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: 2 calcified granulomas, one 1mm stable nodule

Rock_Robster
Posts: 425
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Finally staged at IIIc

Postby Rock_Robster » Wed Jan 08, 2020 7:34 pm

Hey mate, firstly I’d say - absolutely yes.

As you no doubt know, the recurrence/survival stats are based on the outcome of a large number of people. Of course your outcome will be binary - either you will or won’t have a recurrence, and nothing can tell you this definitively now. The question is, which side of the ‘recurrence’ plot will you fall on?

Three things:

1. We think we’re getting pretty detailed talking about stage IIIc disease with a T3 tumour. However there are many other risk factors at play which I believe you are mostly on right side of - RAS/BRAF mutation (yours isn’t), T4 tumour (yours isn’t), EMVI+ (yours isn’t), perforation (nope), obstruction (don’t think so), no adjuvant chemo (not you), positive margins (nope), and fewer than 12 nodes sampled (no). The fact that you have essentially none of the higher risk factors for stage IIIc stands you in good stead to be on the right side of the recurrence/survival plot.

2. The survival/recurrence statistics are disgracefully outdated. This is particularly relevant for rectal primaries, where treatment has improved massively in the last 10-15 years. As an example, the MSK stats nomogram uses patient data from 1990-2000 - so 30 years ago for some patients! MD Anderson uses 1990-2005, so not much better. To compare, recent MSK trials are now showing 50-70% 5-year survival rates in their resected stage four patients, so I can only imagine how good the stage 3 stats must be.

3. Finally, as NHMike says, even if you did have a recurrence this is by no means the end of the road. Particularly given you will be on heavy surveillance, any issues are likely to be caught very early.

You make a good point about surveillance though. The German guidelines seem to be within but at the lighter end of the NCCN guideline range for stage III; personally I’d be pushing for 3 monthly CEAs, 6 monthly scans (at least for 2 years), and an annual scope. This is the more cautious end of the range.

Hope it all continues to go well.

Rob
Last edited by Rock_Robster on Thu Jan 09, 2020 6:07 am, edited 1 time in total.
Male 37; Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+
3 LN; 4 liver mets
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed a liver spot
08-11/19 - FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 - Liver resection #2
02/20 - Stoma reversal booked

michelle c
Posts: 1888
Joined: Wed Dec 02, 2009 3:58 am

Re: Finally staged at IIIc

Postby michelle c » Thu Jan 09, 2020 4:48 am

I was diagnosed with stage III colon cancer 10 years ago. To be honest I don’t know if I’m a,b or c. I know that my cancer was low grade and I think that’s good. I believe my odds of surviving 5 years was 50%, according to some websites. I decided not to research any longer on google as it was only heightening my anxiety. My oncologist said that with stage III, they don’t know if we are already cured from surgery and adjuvant chemo is just kill off any stray cells that “may” have gotten through. All the local nodes to your tumor would have been removed. In the end I had to trust my doctors looking after me, they were optimistic that I would be ok so I tried my best to have the same positive outlook. Believe me, it wasn’t easy at times but worrying excessively didn’t help me. I’m still here after 10 and a half years when I was worried about not making five. Focus on the positives and all the best for your chemo treatments.
25 May 09 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
3 Jun 09 LAR - Stage III 3/10 lymph nodes
6 Jul - 10 Dec 09 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 12 port removed & hernia repair


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