Stage 3, likelihood of recurrence after resection & chemotherapy

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horizon
Posts: 1638
Joined: Tue Apr 12, 2011 10:10 pm

Re: Stage 3, likelihood of recurrence after resection & chemotherapy

Postby horizon » Wed Nov 25, 2020 9:04 am

LivinginHope wrote:Thank you, I've generally been okay between him coming home after surgery up until the past week. Now I just keep feeling so overwhelmed with worry. A few months ago we were planning our wedding, now I'm just praying we make it through this with as few side effects as possible and it doesn't come back :cry: the thought of losing him is unbearable.


Don't feel bad for feeling that way. It sounds pretty normal to me. You've had your world turned upside down.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 10 years NED). Is this real life?

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John72
Posts: 344
Joined: Fri Jan 28, 2011 3:06 am
Location: Los Angeles

Re: Stage 3, likelihood of recurrence after resection & chemotherapy

Postby John72 » Wed Nov 25, 2020 1:29 pm

45% 5 year survival rate at the time I was diagnosed in 2010.

Back in the 90’s, it was more like 25-30% if I’m not mistaken.

From what I can tell, it seems the current survival rate is about 55% for stage 3c.

Keep in mind there’s a five year lag on survival rates and that’s because the tests and studies necessarily have to start five years prior.

Point being treatment protocols continue to improve. There reason to be concerned but there is also reason for hope.

Btw he should walk as much as possible. It won’t really affect the cancer diagnosis, but it is helpful for recovery surgery and state of mind. He might not be able to do much during chemo, so it’s good to get in mild exercise now.
7/13/10 CC
7/23/10 -3C RC, 7cm,15/33 lymph nodes
8/31/10 5 1/2 weeks of radiation + Xeloda
11/12/10 6 rounds Oxy + Xeloda
3/25/11 Finished chemo
6/15/11 Colostomy reversal followed by infections
9/05/14 Clear CT scan

LivinginHope
Posts: 39
Joined: Sat Oct 31, 2020 4:42 am

Re: Stage 3, likelihood of recurrence after resection & chemotherapy

Postby LivinginHope » Thu Nov 26, 2020 7:46 am

John72 wrote:45% 5 year survival rate at the time I was diagnosed in 2010.

Back in the 90’s, it was more like 25-30% if I’m not mistaken.

From what I can tell, it seems the current survival rate is about 55% for stage 3c.

Keep in mind there’s a five year lag on survival rates and that’s because the tests and studies necessarily have to start five years prior.

Point being treatment protocols continue to improve. There reason to be concerned but there is also reason for hope.

Btw he should walk as much as possible. It won’t really affect the cancer diagnosis, but it is helpful for recovery surgery and state of mind. He might not be able to do much during chemo, so it’s good to get in mild exercise now.



Thank you for this.
Have you had any recurrence since you finished treatment? That's one of my big fears at the moment - that he'll get through the chemo only for it to come back soon after especially before we may have had time to start a family :(

Thank you for the walking tip!
Husband (36):
- 5/10/20 Rectal CA
- 21/10/20 LAR, 21 nodes removed
- 31/10/20 5/21 positive=Adj Chemo. Surgery=R0
- 11/20 Sperm banked
- 1/12/20 Onc appt: confirmed T3N2M0, regional not distant nodes. Pre-op CEA 2.7/post op 0.7. No mutations. Plan 6m of CAPOX.
- 12/20 Round 1
- 4/1/21 Onc appt: new evidence, 3m is as good as 6m, REDUCED regime to 3m! Round 2. Pre-chemo CEA 0.6
- 25/1/21 Round 3. Pre-chemo CEA 1.1
- 17/2/21 Round 4.
- 2/3/21 Chemo ends
- 07/21 CLEAR CT SCAN & CEA 0.7
-10/21 CEA 1.1

prayingforccr
Posts: 158
Joined: Sun Jun 28, 2020 4:44 pm

Re: Stage 3, likelihood of recurrence after resection & chemotherapy

Postby prayingforccr » Thu Nov 26, 2020 4:26 pm

LivinginHope wrote:Husband has been told the the surgery was curative... The cancer is all out on the face of it. 5/21 nodes removed were affected :cry:

Currently awaiting the adjuvant chemo plan which is obviously designed to kill any stray cancer cells that managed to escape.

What are the chances of it coming back?? I know the first 1-2yrs are most critical in terms of recurrence and the likelihood reduces over time...but how many people on here have experienced recurrence (or not)??

So scared we're going to get through surgery, chemo and then find out that it's come back and it's much worse than this time :cry:


I finished FOLFOX a month ago, and my rectal tumor had a complete response without surgery.

mskcc is concerned that an mri I took two weeks ago shows the presence of tumor deposits.

I am going to be biopsied next week.

“ You’re cured!!!!” “ Except for this new thing we found. Which might be much worse.”

Sucks.
Nov 2019: colonoscopy
Dec 2019: diagnosed with stage 3 rectal cancer 6+cm tumor
Jan-mar 2020: 20 sessions of radiation, mon-fri capecetibine, mon-fri clinical trial drug m3814
Apr 2020: tumor/scar 3.7cm
July 2020: began 8 treatmentsFOLFOX
August 2020: ct scan reveals scarbed reduced to 2.7cm CEA is 1.5
Nov 2020: Primary tumor had complete response. Possible tumor deposits on latest mri. Biopsy negative for cancer.
May 2021: Multiple lung nodules (3-6mm) on ct scan

Nicolouna
Posts: 39
Joined: Fri Nov 08, 2013 6:30 pm

Re: Stage 3, likelihood of recurrence after resection & chemotherapy

Postby Nicolouna » Fri Nov 27, 2020 11:54 am

One of the many things I learned from this 7+ year journey for me, is that while the doctors know a lot about cancer, there is a lot they don't know. Statistics are helpful in determining the plan of action, but a person is an individual, not a statistic. Personally what has helped me has been to make short term goals... ex: get through surgery, recover, 1 chemo at a time, etc. Live day by day. You can't control the diagnosis or see what will happen in the future. Be happy with the decisions you make. My mentality is to do the most you can to treat the disease, whether that's surgery, chemo, radiation (if appropriate), change of lifestyle, etc. Don't take medical advice from Dr. Google. I've found it personally difficult for me to make any long-term goals, especially since I've had multiple recurrences now but I very much live every day to the fullest, I do things that make me happy, do not do things out of guilt, avoid toxic relationships. I understand your stress, trust me, it comes and goes for me but I try not to dwell on it. Cancer is a life-changing diagnosis, truly a journey, whether it is short or long so like others have mentioned, there is a learning curve.
Dx @ 27yo, female w colon cancer (T4N0M0)
Aug 2013: R hemicolectomy
FOLFOX: Oct 2013-April 2014, NED
May 2016: had a baby ❤️
June 2017: L ovary met, surgical removal
July 2017: pancreatic met
Aug 2017: FOLFIRI
Dec 2017: Whipple’s. 1/36 nodes+
May 2018: 12 FOLFIRI done, NED
Sept 2018: abnormal cyst R ovary - surgery, no cancer (false alarm)
Dec 2019: abdo wall met, resected, clear margins
Oct 2020: new primary colon ca (T4N0), partial colectomy
Nov 2020: XELOX reaction, converted to FOLFOX

User avatar
horizon
Posts: 1638
Joined: Tue Apr 12, 2011 10:10 pm

Re: Stage 3, likelihood of recurrence after resection & chemotherapy

Postby horizon » Sat Nov 28, 2020 12:31 pm

Nicolouna wrote:One of the many things I learned from this 7+ year journey for me, is that while the doctors know a lot about cancer, there is a lot they don't know. Statistics are helpful in determining the plan of action, but a person is an individual, not a statistic. Personally what has helped me has been to make short term goals... ex: get through surgery, recover, 1 chemo at a time, etc. Live day by day. You can't control the diagnosis or see what will happen in the future. Be happy with the decisions you make. My mentality is to do the most you can to treat the disease, whether that's surgery, chemo, radiation (if appropriate), change of lifestyle, etc. Don't take medical advice from Dr. Google. I've found it personally difficult for me to make any long-term goals, especially since I've had multiple recurrences now but I very much live every day to the fullest, I do things that make me happy, do not do things out of guilt, avoid toxic relationships. I understand your stress, trust me, it comes and goes for me but I try not to dwell on it. Cancer is a life-changing diagnosis, truly a journey, whether it is short or long so like others have mentioned, there is a learning curve.


This is all fantastic advice! Short terms goals are what I ended up focusing on also.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 10 years NED). Is this real life?

LivinginHope
Posts: 39
Joined: Sat Oct 31, 2020 4:42 am

Re: Stage 3, likelihood of recurrence after resection & chemotherapy

Postby LivinginHope » Mon Nov 30, 2020 12:20 pm

Little update:

Husband just had his Oncology appointment.

His staging was: T3 N2 M0
5/21 nodes (only nodes close to the tumour site, no distant ones)
Everything has been totally removed.
No genetic mutations.
CEA pre-op was 2.7...CEA post op was 0.6

Recommended to have 6 months of CAPOX as adjuvant chemotherapy to mop up any cells that may have escaped. 3 months would've been chosen if it was less than 3 lymph nodes involved - however Oncologist is open to discussion after 3m whether to stop Oxilaplatin (if the side effects are too difficult) and just continue with Xeloda.

Overall feeling a bit better that we have a plan in place. Still apprehensive to see whether he has any side effects but we will take it as it comes.
Husband (36):
- 5/10/20 Rectal CA
- 21/10/20 LAR, 21 nodes removed
- 31/10/20 5/21 positive=Adj Chemo. Surgery=R0
- 11/20 Sperm banked
- 1/12/20 Onc appt: confirmed T3N2M0, regional not distant nodes. Pre-op CEA 2.7/post op 0.7. No mutations. Plan 6m of CAPOX.
- 12/20 Round 1
- 4/1/21 Onc appt: new evidence, 3m is as good as 6m, REDUCED regime to 3m! Round 2. Pre-chemo CEA 0.6
- 25/1/21 Round 3. Pre-chemo CEA 1.1
- 17/2/21 Round 4.
- 2/3/21 Chemo ends
- 07/21 CLEAR CT SCAN & CEA 0.7
-10/21 CEA 1.1

boxhill
Posts: 737
Joined: Fri Apr 06, 2018 11:40 am

Re: Stage 3, likelihood of recurrence after resection & chemotherapy

Postby boxhill » Mon Nov 30, 2020 12:29 pm

Excellent!

You can definitely get good advice here about managing any side effects he may have. While it's good to pounce on things like nausea with meds rather than suffer in silence, also remember that not everyone has everything. :)
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs 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
Stop Key
All MRIs NED

Lee
Posts: 6205
Joined: Sun Apr 16, 2006 4:09 pm

Re: Stage 3, likelihood of recurrence after resection & chemotherapy

Postby Lee » Mon Nov 30, 2020 2:44 pm

LivinginHope wrote: . . . Recommended to have 6 months of CAPOX as adjuvant chemotherapy to mop up any cells that may have escaped. 3 months would've been chosen if it was less than 3 lymph nodes involved - however Oncologist is open to discussion after 3m whether to stop Oxilaplatin (if the side effects are too difficult) and just continue with Xeloda.

Overall feeling a bit better that we have a plan in place. Still apprehensive to see whether he has any side effects but we will take it as it comes.


My advice, do all that you can now. You don't want to look back with regrets. If he should progress to a stage IV (God forbid), you don't want to look back & wonder maybe we should have done 6 months instead of 3 months. They threw the kitchen sink at me & I am alive & kicking today, with good quality of life.

As boxhill stated, you can get some advice here managing side effects.

Something else to consider, maybe get a 2nd opinion regarding chemo advice/opinion, especially if he is not being treated a major cancer hospital.

Good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

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horizon
Posts: 1638
Joined: Tue Apr 12, 2011 10:10 pm

Re: Stage 3, likelihood of recurrence after resection & chemotherapy

Postby horizon » Mon Nov 30, 2020 11:13 pm

LivinginHope wrote:Little update:

Husband just had his Oncology appointment.

His staging was: T3 N2 M0
5/21 nodes (only nodes close to the tumour site, no distant ones)
Everything has been totally removed.
No genetic mutations.
CEA pre-op was 2.7...CEA post op was 0.6

Recommended to have 6 months of CAPOX as adjuvant chemotherapy to mop up any cells that may have escaped. 3 months would've been chosen if it was less than 3 lymph nodes involved - however Oncologist is open to discussion after 3m whether to stop Oxilaplatin (if the side effects are too difficult) and just continue with Xeloda.

Overall feeling a bit better that we have a plan in place. Still apprehensive to see whether he has any side effects but we will take it as it comes.


That sounds great. Make sure that he reports any side effects to his oncologist. Mine dialed back my Oxi dosage immediately when I reported neuropathy (which went away and I do not deal with now luckily).
I'm just a dude who still can't believe he had a resection and went through chemo (currently 10 years NED). Is this real life?

LivinginHope
Posts: 39
Joined: Sat Oct 31, 2020 4:42 am

Re: Stage 3, likelihood of recurrence after resection & chemotherapy

Postby LivinginHope » Wed Dec 02, 2020 9:59 am

Thanks all for your support.

Totally agree Lee (& Horizon), he's keen to do the full 6 months as it gives the best chance of it not coming back but it's comforting to know that Oxilaplatin can be reduced or stopped IF the side effects are too severe. The oncologist seems to be confident that younger patients don't have severe/long term side effects so let's hope they're right!
We're in the UK so are treated through the NHS but the treatment has been incredible so far.
Husband (36):
- 5/10/20 Rectal CA
- 21/10/20 LAR, 21 nodes removed
- 31/10/20 5/21 positive=Adj Chemo. Surgery=R0
- 11/20 Sperm banked
- 1/12/20 Onc appt: confirmed T3N2M0, regional not distant nodes. Pre-op CEA 2.7/post op 0.7. No mutations. Plan 6m of CAPOX.
- 12/20 Round 1
- 4/1/21 Onc appt: new evidence, 3m is as good as 6m, REDUCED regime to 3m! Round 2. Pre-chemo CEA 0.6
- 25/1/21 Round 3. Pre-chemo CEA 1.1
- 17/2/21 Round 4.
- 2/3/21 Chemo ends
- 07/21 CLEAR CT SCAN & CEA 0.7
-10/21 CEA 1.1

User avatar
horizon
Posts: 1638
Joined: Tue Apr 12, 2011 10:10 pm

Re: Stage 3, likelihood of recurrence after resection & chemotherapy

Postby horizon » Fri Dec 04, 2020 6:44 pm

LivinginHope wrote:Thanks all for your support.

Totally agree Lee (& Horizon), he's keen to do the full 6 months as it gives the best chance of it not coming back but it's comforting to know that Oxilaplatin can be reduced or stopped IF the side effects are too severe. The oncologist seems to be confident that younger patients don't have severe/long term side effects so let's hope they're right!
We're in the UK so are treated through the NHS but the treatment has been incredible so far.


Are you planning on updating this thread when he starts chemo or start a new thread? I want to make sure that I keep up with it.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 10 years NED). Is this real life?

LivinginHope
Posts: 39
Joined: Sat Oct 31, 2020 4:42 am

Re: Stage 3, likelihood of recurrence after resection & chemotherapy

Postby LivinginHope » Sat Dec 05, 2020 9:13 am

horizon wrote:
Are you planning on updating this thread when he starts chemo or start a new thread? I want to make sure that I keep up with it.



I think it's easier for me to update this thread...at least all of our story and worries are kept together and in one place! New people will also be able to read through and see the journey in its entirety!
Husband (36):
- 5/10/20 Rectal CA
- 21/10/20 LAR, 21 nodes removed
- 31/10/20 5/21 positive=Adj Chemo. Surgery=R0
- 11/20 Sperm banked
- 1/12/20 Onc appt: confirmed T3N2M0, regional not distant nodes. Pre-op CEA 2.7/post op 0.7. No mutations. Plan 6m of CAPOX.
- 12/20 Round 1
- 4/1/21 Onc appt: new evidence, 3m is as good as 6m, REDUCED regime to 3m! Round 2. Pre-chemo CEA 0.6
- 25/1/21 Round 3. Pre-chemo CEA 1.1
- 17/2/21 Round 4.
- 2/3/21 Chemo ends
- 07/21 CLEAR CT SCAN & CEA 0.7
-10/21 CEA 1.1

LivinginHope
Posts: 39
Joined: Sat Oct 31, 2020 4:42 am

Re: Stage 3, likelihood of recurrence after resection & chemotherapy

Postby LivinginHope » Sat Dec 05, 2020 9:38 am

Small update:

First Oxi IV infusion is on Tues 15th Dec. Then the Xeloda (Capecitabine) tablets will start that evening and finish on the morning of Day 15 (day 1 of the 7 day break).

We've got prepared, he has a big warm coat, scarf and gloves at the ready. We've also roughly worked out the dates of all 8 rounds (assuming all goes to plan and on time etc) so we can visualise and come to terms with it all I guess. Also helped us to know when we can have sperm analysis and start trying to conceive naturally.

He is feeling okay about it all, obviously not looking forward to it but knows its for the best and just wants to get started. I'm very up & down, I'm also keen to just get it started so we're on the start of the journey and one step closer to the end of treatment.

But I'm also ridiculously anxious about what side effects he may get, how bad they'll be, how and if I can help, then whether the chemo will do what it's meant to and stop it coming back. I know no-one knows what will happen in the future, I hope that over time the worry and anxiety will become manageable. Biggest fear right now is that he'll get through a few months of the chemo and then have a scan that shows mets and upgrades it to stage 4 and the treatment becomes longer and means we can start a family. Not a good day, I'll probably be okay tomorrow aha.
Husband (36):
- 5/10/20 Rectal CA
- 21/10/20 LAR, 21 nodes removed
- 31/10/20 5/21 positive=Adj Chemo. Surgery=R0
- 11/20 Sperm banked
- 1/12/20 Onc appt: confirmed T3N2M0, regional not distant nodes. Pre-op CEA 2.7/post op 0.7. No mutations. Plan 6m of CAPOX.
- 12/20 Round 1
- 4/1/21 Onc appt: new evidence, 3m is as good as 6m, REDUCED regime to 3m! Round 2. Pre-chemo CEA 0.6
- 25/1/21 Round 3. Pre-chemo CEA 1.1
- 17/2/21 Round 4.
- 2/3/21 Chemo ends
- 07/21 CLEAR CT SCAN & CEA 0.7
-10/21 CEA 1.1

Blakeacw
Posts: 11
Joined: Thu Nov 05, 2020 12:24 pm
Location: Atlanta

Re: Stage 3, likelihood of recurrence after resection & chemotherapy

Postby Blakeacw » Sat Dec 05, 2020 11:02 am

I just finished round 5 of FOLFOX this week - Colon Caner adjuvant. He will weather the side effects - just be patient and talk with the doctors each round , I had a one week break between round 4 and 5 and that helped my body a ton.

The cold sensitivity is no fun , I'm avoiding being outside right now

I have the exact same future worries , prayers for you and your husband

Blakeacw
Colonoscopy 8/2020 - cancer diag. 9cm mass
Colectomy 8/2020 - successful -margins cleared
2 /16 lymph nodes -m1 tumor deposit
Pt3 n1b

Port installed 9/20
Folfox - 10/12 rounds complete

CEA
8.6.20 - 8.7 Prior Surgery
9.4.20 - 3.0 Post Surgery
4.14.21 - 2.7
6.16.21 - 3.0
9.29.21 - 2.3
CT Scan 3/18/21 - NED
Signatera 3/16/21 & 6/16 & 9/16 - ALL NEGATIVE


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