Newly diagnosed 36 yo male with stage IV

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

Newly diagnosed 36 yo male with stage IV

Postby Rock_Robster » Thu Oct 25, 2018 12:11 pm

Hi all, I’m a 36 year old male, and today I got my diagnosis of stage 4 colon cancer (actually technically in the rectum I believe), with 4 liver mets (2 large, 2 small) and a few lymph nodes involved.

Oddly they also identified a lytic lesion in my hip at the top of my femur (which has been painful), but were convinced it was benign and didn’t even mention it except I asked about the discomfort.

I’ve had a colonoscopy, biopsy, CT, MRI and blood work so far. Only symptoms are bloody stool, a bit of weight loss (could be anxiety), and the hip pain. I’ll update my signature once I work out how. If there’s any other info that’s useful I can add that too.

We are currently living in Europe but likely to return to Australia next week to start treatment. Of course I’m terrified, my wife is terrified, and none of us really know what to do with ourselves. Docs here were suggesting chemo and radio before surgery, which would be resections of both liver and lower colon (in that order). Will be getting more specialist opinions back home.

Anyway I just wanted to say how grateful I am that such a positive resource as this forum exists, and though of course no-one would ever hope to be a member, it is no doubt changing lives for those that need it.

I’ll be trawling the forums for advice and learnings, but always happy to hear any personal tips you might have. Thanks for having me here.
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

User avatar
Maggie Nell
Posts: 1151
Joined: Wed May 27, 2015 1:57 am
Location: Central Highlands, Victoria, Oz

Re: Newly diagnosed 36 yo male with stage IV

Postby Maggie Nell » Thu Oct 25, 2018 6:10 pm

G'day Rock Robster,

I'm in Melbourne and imagine that you'd be touching base with the Peter Mac (Peter MacCullum Cancer Centre). When
you get here, contact the Cancer Council who have a support line open Monday to Friday, 9am to 5pm and staffed by experienced
oncology nurses. You might qualify for financial assistance, a one-off $200 for Telstra (phone) bill or food from Coles supermarket.
The CC will send you out a load of printed information and answer all your questions.

There's a few aussies rattling about in here who may swing by with more information. I live 30km from Melbourne CBD in the boonies
so all the best with your relocation and getting settled with a place to live. Lovely time of the year to come back, all the bottlebrush
are out and Spring Racing Carnival is just around the corner.
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
Stage II CRC, no adjuvant chemo required.

Nohogirl
Posts: 116
Joined: Sun Oct 14, 2018 12:15 am

Re: Newly diagnosed 36 yo male with stage IV

Postby Nohogirl » Fri Oct 26, 2018 11:54 am

Hello and welcome to the club,
Sorry for the reason you have to be here. I don't have cancer, its my husband who has it (rectal cancer), and still with unknown stage, II, III, IV? . When my husband was diagnosed back in April, i was scared, terrified and lost. I then found this site, and have been navigating it , read back and forth throughout the site several times, looking for similar situations, through many posts, new and old, really old, through users profiles, signatures, blogs and trust me, i have come across many Stage IV survivor stories. Even some people who were at the time told to put their affairs in order, have beat the disease and are now long term survivors. Hopefully, they'll come forward with their stories soon.

For now, please, find good doctors, good hospitals, explore your options, and be your own health advocate but most importantly have the attitude that you will beat cancer and never give up

Medicine is way more advanced now than it was years ago, and colorectal cancer is now highly treatable, and in most cases curable.

Good luck to you and keep us posted with your successes throughout your journey.
Last edited by Nohogirl on Fri Oct 26, 2018 3:31 pm, edited 1 time in total.
04/18 DH 49 Stage 2A T3N0M0 rectal cancer moderately differentiated.
05/18 chemorad. (Xeloda) 28 days
08/18 Surgery- 24 cm, including entire rectum out
Path -Stage II T2N0M0 moderate to poorly diff. adenocarcinoma
0 of 15 lymph nodes
No PNI
No LVI
Clear margins
10/18-02/19 8 cycles of Folfox
02/19 Pet Scan. NED
08/19 Pet Scan NED
08/19 Colonoscopy Clear

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

Re: Newly diagnosed 36 yo male with stage IV

Postby Ehut » Fri Oct 26, 2018 1:40 pm

Welcome to the club that no one wants to be a member of. I was age 35 with a very similar diagnosis as you, except a couple more liver tumors. It sounds like your liver is operable, which is VERY good news for you. Definitely find a competent cancer center with experienced doctors, because I believe it makes a big difference in outcome, both in terms of survival and quality of life. I was fortunate to get primary treatment at Mayo Clinic and am thankful every day that I did. Note that I am 6+ years past completion of treatment with no recurrence. Hopefully you have a similar outcome.
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!

SGNYC
Posts: 35
Joined: Mon Sep 03, 2018 9:20 pm

Re: Newly diagnosed 36 yo male with stage IV

Postby SGNYC » Sat Oct 27, 2018 7:10 pm

Hi,

Sorry youve joined the club but this is a great resource. My DH received presurgery chemo (Folfox) at MSK and that has been not only successful for him but was the advice we got from all major cancer centers. Obviously follow your doctors advice, but this seems to be the protocol provided you're not at immediate risk of blockage.

Keep us posted.
Wife to DH, 44
DX July 18 - RC at Rectosigmoid
Adenocarcinoma, Mod diff
T3N1M1
Stage IV (but MSK said not a true Stage IV at Dx)
Pos nodes: 1/18
1 Liver Met and 1 Lung Met - liver Met dead tissue at surgery, hence MSK M1 status
Baseline CEA value of 25, now 3.4
LAR (Robotic)/Liver resect(dead tissue), VATS lung - clear margins
Temp Ileo- Reversal Feb 19
Folfox - 5 Rounds Neoadj, 3 rounds Adj, then discontinued Oxali and 4 rounds just 5FU
NED and Reversal Feb 2019 - clear contrast CT, clear contrast MRI

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

Re: Newly diagnosed 36 yo male with stage IV

Postby Rock_Robster » Sun Oct 28, 2018 4:28 am

Thanks everyone for all the advice and personal experience - it’s really helpful. I’ll be taking up each one of your suggestions

I know I’m getting way ahead of myself here but from trawling the forums it seems people have been getting great results from an HAI pump for the liver mets - is this something I should be pushing for if it’s not in the plan? Of course I need my full diagnostic work up first before this stuff can be landed. I just want the plan to be the best it can be before we get started.

Thanks again everyone, will keep you posted.
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

heiders33
Posts: 363
Joined: Sat Nov 04, 2017 11:08 am

Re: Newly diagnosed 36 yo male with stage IV

Postby heiders33 » Sun Oct 28, 2018 10:32 am

Glad you are getting second opinions. I would recommend looking into the HAI pump if you can, especially since you are young. It delivers powerful chemo directly to the liver with no side effects. You just have to be monitored for liver toxicity.
40 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy, CAPOX six rounds
3/18: reversal
9/18: liver met, resection/HAI pump, 11 rounds 5FU, 1 round FUDR
11/19 - local recurrence, brachytherapy, 3 weeks targeted radiation
12/21 - end colostomy

Stage4jj
Posts: 4
Joined: Sun Sep 16, 2018 6:04 am
Location: Indiana

Re: Newly diagnosed 36 yo male with stage IV

Postby Stage4jj » Mon Oct 29, 2018 9:29 pm

Hello and welcome! This is actually my first post, but I felt like I had to chime in here since your situation is hery similar to mine. I was 39 when diagnosed with Stage 4 colon cancer (sigmoid), along with several legions within my liver. Ended up getting a foot of colon removed, and a few spots ablated. Followed by 6 rounds of chemo. Immediately, more tumors returned to the liver and was told that chemo would be most likely my entire future. Decided to travel 1200 miles to get a second opinion at MD Anderson, it was our best decision ever! I do believe that decision saved my life. Turned out that my right lobe was pretty much dead, wouldn’t of known that if we stayed put. After a cross country move, a hurricane, and half my liver removed.... I can say I have just cleared my 1 year of ned! So, definitely get second opinions, and weigh out every opportunity. Best of luck, God Bless!
12/2016 - Stage 4 Sigmoid CC w/Mets to liver , Kras mutation
1/2017 - Colon Resection, 1 tumor removed from liver for biopsy
3/2017 - 6 rounds of Chemo (folfox, avastin)
5/2017- 2 more tumors on liver....removed via ablation
8/2017 - Liver resection, removed right lobe & gallbladder
9/2017 - Ned

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

Re: Newly diagnosed 36 yo male with stage IV

Postby Rock_Robster » Tue Oct 30, 2018 12:43 pm

Thanks again guys for all the advice. That’s an impressive story Stage4jj - so glad you got the outcome you did (and had the courage to do it); I’ll definitely be getting lots of opinions. I’m in Australia but I’ll travel if necessary!

One other question - I’ve been having a decent amount of inner groin / pelvic pain lately. It moves around a bit but seems to largely follow the lymph node pattern. Gets worse as a get more tired throughout the day, or with heat (eg hot bath). Is this common with rectal tumours? I do have several suspicious lymph nodes from the MRI, but my reading suggests involvement of these particular glands is fairly rare. Seems to coincidental to me though. Thanks.
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

Stage4jj
Posts: 4
Joined: Sun Sep 16, 2018 6:04 am
Location: Indiana

Re: Newly diagnosed 36 yo male with stage IV

Postby Stage4jj » Tue Oct 30, 2018 8:14 pm

I don’t know if the groin pain is related to that type of rectal tumors or not since mine was further up, but I did have similar pains in that area. Mine weren’t excruciating, but it would range from dull pains to sharp quick stabbing pains in the groin. However, they were significant enough to get it looked at. I even went to the ER a week before being diagnosed, finally fed up with my symptoms. Unfortunately, nothing was found (somehow they missed my 7cm tumor on the CT, and just told me I was “backed up”). An ultrasound showed no abnormalities either in that area. I always assumed the pain was possibly related to the tumor, I can’t say I’ve had it since.
12/2016 - Stage 4 Sigmoid CC w/Mets to liver , Kras mutation
1/2017 - Colon Resection, 1 tumor removed from liver for biopsy
3/2017 - 6 rounds of Chemo (folfox, avastin)
5/2017- 2 more tumors on liver....removed via ablation
8/2017 - Liver resection, removed right lobe & gallbladder
9/2017 - Ned

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

Re: Newly diagnosed 36 yo male with stage IV

Postby Rock_Robster » Wed Oct 31, 2018 4:03 am

Thanks Stage4jj - appreciate the response. I’m sorry they missed it on the scans - that really sucks. Hope you’re doing ok
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

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

Re: Newly diagnosed 36 yo male with stage IV

Postby Rock_Robster » Wed Oct 31, 2018 5:53 am

Just to add, I just found out I have NRAS mutation, MMR-proficient
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

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

Re: Newly diagnosed 36 yo male with stage IV

Postby Rock_Robster » Tue Dec 18, 2018 5:15 am

Hi all, just a brief response to say thanks for everyone for the support and replies so far - you’ve all been a huge help! I’ve just had my 3rd round of neoadjuvant FOLFOX, after one more we’ll be scanning then hopefully proceeding to the liver resection after a short break, if all goes well.

I got second opinions from Dana-Farber and another smaller centre, and have one underway with MSKCC for my peace of mind. All generally aligned so far, but of course it’s early days.

I had one piece of bad luck early on where my port catheter tip migrated and I ended up with a DVT in my shoulder, so the port’s now out and I’ll likely be on clexane for a while! Hopefully that’s the bad luck over with early though :)

Best wishes to everyone for the holidays
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

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

Re: Newly diagnosed 36 yo male with stage IV

Postby Rock_Robster » Tue Dec 18, 2018 5:18 am

Also to add for completeness - turns out the groin pain was an undiagnosed femoral hernia, and the bone lesions were all benign (no PET activity). For the time being, anything that is “not cancer” is something I’m OK with!
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

User avatar
Maggie Nell
Posts: 1151
Joined: Wed May 27, 2015 1:57 am
Location: Central Highlands, Victoria, Oz

Re: Newly diagnosed 36 yo male with stage IV

Postby Maggie Nell » Tue Dec 18, 2018 6:39 am

Best wishes to you too, rockrobster.
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
Stage II CRC, no adjuvant chemo required.


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