Any young, long term survivors? Need hope

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TiredandTroubled
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Joined: Sat Jul 10, 2021 7:11 am

Any young, long term survivors? Need hope

Postby TiredandTroubled » Fri Jul 23, 2021 5:56 am

Can anyone share positive stories of being diagnosed stage 2/3/4 at a young age and remaining cured/NED?

I see a few from people who are over 50 but I would really like any encouragement from people who started young (under 40) and made it through.

Seeing success stories from everyone is helpful, but I’m only 29 and getting to 5 years NED feels less comforting when I think about how I’ll live with this fear for my entire life (before this was hoping for +40 years)

Is it true that if you make it a certain number of years NED, you are considered cured? Or are you still more likely to get sick again compared to peers?

Thank you in advance.
Last edited by TiredandTroubled on Fri Jul 23, 2021 8:59 am, edited 1 time in total.
29F DX 7/19
CC Sigmoid Colon
Adenocarcinoma
5.2 cm x 2.4 cm
G2
T3N2aM0
Stage III
5/15 positive LN
Baseline CEA: 16
LVI, PNI present
Clear margins
MSS
Sigmoid Colectomy

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Jacques
Posts: 678
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Any young, long term survivors? Need hope

Postby Jacques » Fri Jul 23, 2021 7:23 am

You can scroll through these two threads and scan the signatures for survivors diagnosed under the age of 40. Typically, members who reach the 5-year mark don't stay around here much longer, except perhaps to come back once a year or so on their "cancerversary" to post a reminder of their existence.


Rock_Robster
Posts: 1027
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Any young, long term survivors? Need hope

Postby Rock_Robster » Fri Jul 23, 2021 7:25 am

Realise you asked about stages 2-3, but nonetheless… I was diagnosed stage IV at 36, I’m 39 now and have been clear (NED) for 18 months so far. My total treatment took 14 months; I had a year off work for it. I’m now back at work full time, and do everything I did before I was diagnosed (except thanks to Covid, of course!).

I know of a lot of folk (too many actually) diagnosed in their 30s and 40s that are doing great now. 20s is definitely more rare, but I know of a few.

Rob
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

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: Any young, long term survivors? Need hope

Postby stu » Fri Jul 23, 2021 7:40 am

Hi ,
I have been here on and off for ten years ! In that time many ,many young people have passed through the forum and no longer come here as they have picked up the pieces of their lives and moved on !
Sometimes they pop back up and say Hi !
Take care ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

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horizon
Posts: 1668
Joined: Tue Apr 12, 2011 10:10 pm

Re: Any young, long term survivors? Need hope

Postby horizon » Fri Jul 23, 2021 8:07 am

I'm a ten year stage 3 survivor and I'm still under 50! :)

The fear of not surviving and then the fear of it coming back used to consume me. I can't say that I never worry about it coming back, because that wouldn't be true at all. But I can go good stretches without thinking about cancer and that used to feel impossible. 5 years is a huge milestone and for me is where they started backing off on the scans, blood tests, etc.

stu wrote:Hi ,
I have been here on and off for ten years ! In that time many ,many young people have passed through the forum and no longer come here as they have picked up the pieces of their lives and moved on !
Sometimes they pop back up and say Hi !
Take care ,
Stu


This right here. Some survivors stick around and some don't want any reminders of the awfulness of cancer. Nothing wrong with either approach!
I'm just a dude who still can't believe he had a resection and went through chemo (currently 12 years NED). Is this real life?

mandosquiddy
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Joined: Sat Oct 06, 2018 11:45 am
Location: Colorado
Contact:

Re: Any young, long term survivors? Need hope

Postby mandosquiddy » Fri Jul 23, 2021 8:20 am

I was diagnosed stage 2 at 37 (later upgraded to stage 4). I am now 41 and will be coming up on 3 years NED in October. The more time goes by the less I worry about a recurrence. It will always be a small concern in my head but I've accepted that I just have to move forward and enjoy whatever time I may have.
4/2017 DX: sigmoid colon cancer
colectomy/colostomy
stage II with one positive margin
5/2017 - 11/17 12 rounds of FOLFOX
11/17 - 12/17 Increase in back pain and testicular pain.
CEA increased, CT scan indicated mass on rectal portion of colon
1/18 - 2/18 25 rounds of radiation treatment
5/18 surgery, interoperative radiation, bladder/ureter modification
7/18 normal blood work and CT scan
9/18 increased CEA, mass on small intestine
10/18 Debulking surgery/illeostomy
1/19 Ostomy reversal
12/19 CEA 1.3!!!!

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Any young, long term survivors? Need hope

Postby Lee » Fri Jul 23, 2021 7:46 pm

As others have said, many young people have received this cancer diagnoses, especially if it runs in the family. I am a 17 yr survivor, been on this forum for about 15 yrs. Was told I was cured after 11 yrs. When I was diagnosed, my cancer was deeded advanced, only had about 30% chance of making it to 5 yrs. A lot of those stats included old people who died from other things other than cancer. Believe me, there has been a lot of advancements since my diagnoses.

The youngest person I know was 16 yrs old when diagnosed, at 26, he was very much alive. While he posted here a few times here, it was his mother who posted here for a few years. At 16, he told his parents he was passing blood, mom passed info on to doctor, doctor just assumed it was hemorrhoids. One day, mom was putting son's clothes away, when she found blood soaked underwear stuff in son's drawer. She called his doctor, said she was bring son in. Called school, have him ready. Son was a bit confused, what is going on. Then saw the blood soak underwear, broke down into tears, not because he was scared, rather because he knew he was not facing this alone anymore. He was admitted into the hospital that day. Surgery was a few days later.

Another young women, early 20's stage IV, very much alive today. I never actually met her, butt she was a niece of a good friend of mine. She was pregnant with her 1st child when she started passing blood, everyone assumed hemorrhoids. Can't remember all the details, but within 6 months of giving birth, she was diagnosed with colon cancer & one met in liver. This was a few years prior to my diagnoses, & they were just starting to experiment with stage IV diagnoses. At the time of her diagnoses, most doctors told her stage IV was inoperable. MD Anderson took her case simply because she only had one met. They were successful, she had to wait 5 yrs before she was given the okay to try & get pregnant again. Took a few years, butt she did have a 2nd child.

They found out when she was diagnosed that she had relatives who died from colon cancer. They were going to start screening (scoping) her kids starting at age 10. She was my inspiration. I did not have this forum when I was going through treatment.

Know in your heart, YOU CAN & WILL BEAT THIS!!!! Hope this helps,

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!

henny-crc
Posts: 17
Joined: Mon Sep 14, 2020 6:09 pm

Re: Any young, long term survivors? Need hope

Postby henny-crc » Sat Jul 24, 2021 2:03 pm

Check out survivor section on the colonclub main website, there are plenty of young survivor stories there.
https://www.colonclub.com/our-stories/colon-cancer
Dx 06/20
23 yo
Stage 3A
T1N2a

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John72
Posts: 349
Joined: Fri Jan 28, 2011 3:06 am
Location: Los Angeles

Re: Any young, long term survivors? Need hope

Postby John72 » Sat Jul 24, 2021 4:56 pm

Hi, just short of my 38th birthday when diagnosed in July 2010 with stage 3c and extensive lymph node involvement.

I just turned 49 on the 15th.
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

plastikos
Posts: 351
Joined: Wed Jan 14, 2015 6:09 am

Re: Any young, long term survivors? Need hope

Postby plastikos » Sat Aug 07, 2021 10:52 am

Me. Sorry have not logged on in a while. Stage 4 survivor since a 2014 diagnosis. NED.
St. IV Colon CA @ 37, male, Kras wild, MSI-high (2014)
11/2014 Right Hemicolectomy + Liver Resection
12/2014 - 6/2015 FOLFOX + Cetuximab
10/2015 - Recurrence liver
Liver resection 10/2015
FOLFIRI 11/2015 - 5/2016
Recurrence liver, nodes 11/2016
Pembrolizumab started 12/2016 -> pseudoprogression(?) -> biliary obstruction -> biliary stenting
Chemo 4x: most mets inactive and smaller on PET-CT
March 2017 - Back on Pembrolizumab again
Sept 2017 - SIRT - > NED
2019 NED

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Russian27
Posts: 491
Joined: Sun May 17, 2009 9:47 am

Re: Any young, long term survivors? Need hope

Postby Russian27 » Sat Aug 07, 2021 11:41 am

Me too. NED since 2009. Stage IV. I was diagnosed at 39.
Dx at 39(12/2008), Stage IV, omentum mets,
0/16 lymph nodes positive,
right colectomy 1/2009,
FOLFOX + avastin 2/2009-7/2009
Thank You Colonclub! 2015

I_will_fight
Posts: 148
Joined: Mon Jun 29, 2020 3:38 pm

Re: Any young, long term survivors? Need hope

Postby I_will_fight » Tue Aug 10, 2021 6:55 am

henny-crc wrote:Check out survivor section on the colonclub main website, there are plenty of young survivor stories there.
https://www.colonclub.com/our-stories/colon-cancer


Interesting site, thank you!
46 yo male Spain
06/2020 - 6cm T3N0M0 CC splenic flex
3 and 4 mm lung ground glass
lymp 0/37
dMMR MSH6
KRAS mt G13D
V/LNI absent
PNI present
07/20 - hemicol surg, optimistic surgeon.
11/20 - 4 x CAPOX completed.
12/20 - Clear colonoscopy
02/21 - MRI liver lesion unchanged.
11/21 - Clear CT
02/22- Colonoscopy: Sessil polyp 3mm
05/22- Clear CT
06/22- Negative Signatera
12/22- Negative Signatera
01/23- Clear CT
07/23- Clear CT, normal markers.
09/23 - Negative Signatera
01/24 - Clear CT

kiwiinoz
Posts: 1170
Joined: Thu Jan 03, 2013 11:44 pm

Re: Any young, long term survivors? Need hope

Postby kiwiinoz » Tue Aug 10, 2021 6:01 pm

Diagnosed Stave IV in 2012 when I was 49.
NED since 2013 and am currently 48.

Like Horizon, spent a long time being consumed by fear of cancer, but now have other fears (daily ones like everyone else) so don't log on very often.
There are more of us around than you would suspect.
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - August 2020
Port Out 26 March 2015

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horizon
Posts: 1668
Joined: Tue Apr 12, 2011 10:10 pm

Re: Any young, long term survivors? Need hope

Postby horizon » Wed Aug 11, 2021 10:47 am

kiwiinoz wrote:Diagnosed Stave IV in 2012 when I was 49.
NED since 2013 and am currently 48.

Like Horizon, spent a long time being consumed by fear of cancer, but now have other fears (daily ones like everyone else) so don't log on very often.
There are more of us around than you would suspect.


fist bump to my pal on the other side of the world!
I'm just a dude who still can't believe he had a resection and went through chemo (currently 12 years NED). Is this real life?

Ehut
Posts: 233
Joined: Wed Sep 26, 2012 4:24 pm
Location: Algonquin, IL

Re: Any young, long term survivors? Need hope

Postby Ehut » Wed Aug 11, 2021 4:12 pm

I was DX'd stage IV at age 35 in late 2011. I've been NED since treatment ended in mid-2012, so 9 years clear at this point. See my signature for treatment details.
Dx 12/11 rectal stage IV w/ 6 mets to liver, age 35
4 cycles FOLFOX 12/11 to 2/12
short course radiation 2/12
rectal/liver resection 3/12, temp ileostomy
8 cycles FOLFOX/FOLFIRI 4/12 to 8/12
ileostomy reversal 10/12
port out 10/13
1/17: Added daughter to family!
12/19: Added son to family!
NED for 11+ years and counting!


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