Age 30 (M) Recently Diagnosed, Family History

Please feel free to read, share your thoughts, your stories and connect with others!
sealdog
Posts: 7
Joined: Fri Jun 09, 2017 8:23 am
Facebook Username: nathan.seal.3

Age 30 (M) Recently Diagnosed, Family History

Postby sealdog » Fri Jun 09, 2017 8:40 am

Hi all,

Thanks for having me, I'm guessing this is going to be my first post in a very long journey.

I've recently been through a series of tests, Colonoscopy, CT and MRI, after my Mum was diagnosed with colon cancer last month!
Alas, I too have the condition, as did my Grandpa and did my Great Grandpa on my Mum's side. 4 generations!

Mum has thankfully has pulled through with diagnosis, surgery and recovery all within a month and a half. Now it's my battle.
Mum is also very likely Lynch, but more info is confirming that is coming.

Originally the colonoscopy said the tumour was 3cm semi-circumferential, bioposy moderately differentiated adenocarcinoma, located in the sigmoid colon, but CT and MRI are confirming high rectum instead, so my whole treatment plan has changed to rectal cancer focus, being radiotherapy, surgery then chemo. I've had one appointment with an onc and surgeon who are treating it like a stage 3. This obviously was kind of traumatic with the implications of a temporary bag while the bowel join heals, fertility risks, long term side effects etc

A couple of questions:

1) Would you go down this path at my age with treatment? It seems old hat, that much better alternatives might exist.

2) Surgeon told mum that her and I are "100% Lynch" based on what he has seen. He was amazing with Mum but I am struggling to accept his treatment plan armed with more information about our situation (Immunotherapy?)

Thanks for hearing me out. This has turned my long term partner and I's life upside down, but I want to fight the best I can.

Cheers,

Sealy
Diag 30/04/2017 Stage 3A\B Rectal Cancer
3.5cm's Mid Rectum, 50\50 chance suspicious lymph nodes 2-3
Mum Lynch Syndrome due to EPCAM gene, diagnosed 05/01/2017, had checkup because of this! Grandfather and Great Grandfather also had colon cancer
15/06/2017 ChemoRadiation 6 weeks - Xeloda
Peter Mac Second Opinion 05/07/2017 -Re staging process PET, CT, MRI and Flexible Sigmoidscopy
ULAR proposed using Da Vinci Robot 11/2017

CatzinDJ
Posts: 35
Joined: Thu Dec 22, 2016 12:06 pm

Re: Age 30 (M) Recently Diagnosed, Family History

Postby CatzinDJ » Fri Jun 09, 2017 9:39 am

Sealy,

Your are so young, Are you seeing a board certified colorectal surgeon? I don't have any significant advise for you, but I'm sure others will.
53 & Female
DX: Rectal Cancer (RC) diagnosed in Thailand
Tumor Location: Rectum
Tumor type: invasive adenocarcinoma
Tumor size: 4 mm
Tumor grade: low grade
Baseline CEA value (4.46) 5/2016
CEA 6/2/2016 4.8
Lynch- Negative.
LAR 7/13/2016 in Seatle, Wa
Home 7/18/2016.
CEA 12/9/2016 2.8
CEA 6/8/2017 5.6
Colonoscopy and Cat scan June 2017 NED? A nagging suspension of mine about the CEA rising.

User avatar
Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Age 30 (M) Recently Diagnosed, Family History

Postby Maia » Fri Jun 09, 2017 9:40 am

Welcome, Sealy, even if I'm sorry you need to be here. Way to young for this, but that is.
For Lynch, which implies always a Microsatellite Instable High cancer, immunotherapy is the way to go. It has been known since a couple of years ago, but only people in clinical trials benefited from it, or those who had oncologists that worked to get them the immunotherapies. Since a couple of weeks ago, Keytruda --pembrolizumab, an anti PD-1-- is FDA approved for all cancers that are MSI-high. So, now insurance has to cover it, it is standard of care. This information has to be very useful for your mom too.

BREAKING: Pembrolizumab/Keytruda APPROVED for MSI-High CRC

You also can read through this forum all those who are MSI-high --some Lynch, others, no-- to see they usually are seeing good responses after most chemotherapies failed them. In the cases where the immunotherapy doesn't work well on its own, as monotherapy, even if someone is MSI-high, now the possibility of combining with other agent is open.


You can reach out to BIG ROB 69 , Wonderfullymade, BeansMama, plastikos, to name some MSI-high in the forum viewtopic.php?f=1&t=55586#p448526

And you can read this recent story too, very hopeful, about other young one :) https://www.washingtonpost.com/national ... 7e02a89d7c

Where are you treated --just State, not exact location? Are you treated at a main cancer center?

sealdog
Posts: 7
Joined: Fri Jun 09, 2017 8:23 am
Facebook Username: nathan.seal.3

Re: Age 30 (M) Recently Diagnosed, Family History

Postby sealdog » Fri Jun 09, 2017 10:15 am

Wow thank you for those quick replies!

I'm Australian, I'm in Victoria and we are lucky with public healthcare paid with taxes, so lucky that money isn't a barrier, just acting on the right information and time.

My surgeon is stated as having Colorectal expertise and was advised by my family doctor.

Those stories are very hopeful.

When do you find out the Lynch status of your tumour? Any chance you can find out prior to any of the dangerous procedures?
Diag 30/04/2017 Stage 3A\B Rectal Cancer
3.5cm's Mid Rectum, 50\50 chance suspicious lymph nodes 2-3
Mum Lynch Syndrome due to EPCAM gene, diagnosed 05/01/2017, had checkup because of this! Grandfather and Great Grandfather also had colon cancer
15/06/2017 ChemoRadiation 6 weeks - Xeloda
Peter Mac Second Opinion 05/07/2017 -Re staging process PET, CT, MRI and Flexible Sigmoidscopy
ULAR proposed using Da Vinci Robot 11/2017

ronnieciao
Posts: 88
Joined: Sat Nov 08, 2014 1:58 pm
Location: Northern Italy and UK

Re: Age 30 (M) Recently Diagnosed, Family History

Postby ronnieciao » Fri Jun 09, 2017 10:17 am

sealdog wrote:Hi all,

Thanks for having me, I'm guessing this is going to be my first post in a very long journey.

I've recently been through a series of tests, Colonoscopy, CT and MRI, after my Mum was diagnosed with colon cancer last month!
Alas, I too have the condition, as did my Grandpa and did my Great Grandpa on my Mum's side. 4 generations!

Mum has thankfully has pulled through with diagnosis, surgery and recovery all within a month and a half. Now it's my battle.
Mum is also very likely Lynch, but more info is confirming that is coming.

Originally the colonoscopy said the tumour was 3cm semi-circumferential, bioposy moderately differentiated adenocarcinoma, located in the sigmoid colon, but CT and MRI are confirming high rectum instead, so my whole treatment plan has changed to rectal cancer focus, being radiotherapy, surgery then chemo. I've had one appointment with an onc and surgeon who are treating it like a stage 3. This obviously was kind of traumatic with the implications of a temporary bag while the bowel join heals, fertility risks, long term side effects etc

A couple of questions:

1) Would you go down this path at my age with treatment? It seems old hat, that much better alternatives might exist.

2) Surgeon told mum that her and I are "100% Lynch" based on what he has seen. He was amazing with Mum but I am struggling to accept his treatment plan armed with more information about our situation (Immunotherapy?)

Thanks for hearing me out. This has turned my long term partner and I's life upside down, but I want to fight the best I can.

Cheers,

Sealy


Hi Sealy,

I am very surprised at your surgeon's statement that you are 100% Lynch. Where is he getting this information? As far as I know only pathology/genetic testing of the tumour could confirm this. Familiarity doesn't always mean you have Lynch. As an example- my mother, grandmother, and great grandmother all had colon/ rectal cancer. My mother at a relatively young age (early 50s).er My uncle (her brother) had early onset bladder cancer in his late 40s. And my cousin (again on my mother's side) had very aggressive ovarian cancer in her 30s. It all seemed to point towards Lynch but genetic testing came back normal. No abnormaliies of the MMR system.

If you do have Lynch in a way it will be very good so you can pursue immunotheraphy. But wait for your genetic testing before making any decisions. However, if it were me I would never turn down traditional treatment at stage 3. This is just my personal opinion.

I wish you the very best of luck
DD of Mum, 53
Diagnosed CC Stage IVb, October 2014
Mets to liver and peri
Folfox + Panitumumab
5fu+Panitumumab
Folfiri + Avastin
Cetuximab monotherapy
Tecenriq monotherapy- failed
Left us Feb 2017

Lee
Posts: 5258
Joined: Sun Apr 16, 2006 4:09 pm

Re: Age 30 (M) Recently Diagnosed, Family History

Postby Lee » Fri Jun 09, 2017 6:38 pm

Hi and welcome,

So sorry for the reason you are here. Maia has given you some wonderful info. The only thing I might add, if it's possible, 2nd opinions at major cancer treatment center in your area.

All the best,

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 - 10 years and counting!

Basil
Posts: 207
Joined: Thu Mar 16, 2017 12:33 pm

Re: Age 30 (M) Recently Diagnosed, Family History

Postby Basil » Fri Jun 09, 2017 7:25 pm

Sealy,

I was diagnosed with rectal cancer in March and do not have the institutional knowledge of others but can offer at least a question to consider with your onc. Standard treatment for my cancer (stage 3) has been radiation/surgery/12 rounds chemo for decades (or so my surgeon said).

I enrolled in a trial that has no radiation. Instead it's six rounds chemo (FOLFOX), surgery, then more FOLFOX. I'm on round five of the initial six, no scans yet, but blood in stool went away over a month ago and my bowel function has gone from messed up to pristine (for the first time in a long time). The docs are confident the FOLFOX is doing its job on the tumor. Advantages are no long term effects from radiation and it's highly unlikely I'll have even a temporary bag. Not sure if it's available outside of the states but the trial is called PROSPECT if you want to ask about it.
40 y/o male, kids 6&9
Dx 3/16/17, rectal cancer S3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED

DarknessEmbraced
Posts: 2832
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Age 30 (M) Recently Diagnosed, Family History

Postby DarknessEmbraced » Sun Jun 11, 2017 5:23 pm

I'm sorry you're going through this!*hugs* A second opinion if possible can't hurt.
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17

Swirdfish
Posts: 267
Joined: Sun Jun 19, 2016 3:57 am

Re: Age 30 (M) Recently Diagnosed, Family History

Postby Swirdfish » Mon Jun 12, 2017 2:12 am

Hi Fellow Aussie,

I've recently been through it all, and now onto 6 months scans. The temp bag, isn't too bad you get use to it, and the only side affect I have that is really annoying me is neuropathy. Although each aspect of treatment has its own side effects, their is medication to combat it. Your young like me. Wish you well.
06/2016 Went in for colonoscopy came out with a tumor. Age 35
12cm from verge at junction. Rectal cancer.
Clinical stage T3 NO MO
Temp illestomy
Completed 5FU and Radiation
LAR surgery planned 13 Oct 2016
Completed ULAR surgery 11-10-2016.
0/22 nodes
pT3 N0 M0 R1
Stage 2A

Pathology reviewed and changed
ypT3 N0 M0 R0

Started folfox 21-11-2016
5-4-17 NED
Reversal 12-4-17

sealdog
Posts: 7
Joined: Fri Jun 09, 2017 8:23 am
Facebook Username: nathan.seal.3

Re: Age 30 (M) Recently Diagnosed, Family History

Postby sealdog » Tue Jun 13, 2017 1:01 am

Hi swirdfish,

Can't wait to be in your position on the otherside of treatment, it sounds like a long road.

Just had MRI and the surgeon said I'll be having an ULAR surgery as it is more mid than high. Still distraught with how the colonoscopy measurements were so off, sigmoid at 20cms, it baffles me, a totally different part of the colon from an experienced doctor

Now I'm dealing with what's to come, but first is six weeks of radiotherapy + chemo. Surgeon said I wouldn't need to have a bag for life, just while it heals.

You find bowel movements are bearable after reversal?
Diag 30/04/2017 Stage 3A\B Rectal Cancer
3.5cm's Mid Rectum, 50\50 chance suspicious lymph nodes 2-3
Mum Lynch Syndrome due to EPCAM gene, diagnosed 05/01/2017, had checkup because of this! Grandfather and Great Grandfather also had colon cancer
15/06/2017 ChemoRadiation 6 weeks - Xeloda
Peter Mac Second Opinion 05/07/2017 -Re staging process PET, CT, MRI and Flexible Sigmoidscopy
ULAR proposed using Da Vinci Robot 11/2017

Swirdfish
Posts: 267
Joined: Sun Jun 19, 2016 3:57 am

Re: Age 30 (M) Recently Diagnosed, Family History

Postby Swirdfish » Tue Jun 13, 2017 1:45 am

sealdog wrote:Hi swirdfish,

Can't wait to be in your position on the otherside of treatment, it sounds like a long road.

Just had MRI and the surgeon said I'll be having an ULAR surgery as it is more mid than high. Still distraught with how the colonoscopy measurements were so off, sigmoid at 20cms, it baffles me, a totally different part of the colon from an experienced doctor

Now I'm dealing with what's to come, but first is six weeks of radiotherapy + chemo. Surgeon said I wouldn't need to have a bag for life, just while it heals.

You find bowel movements are bearable after reversal?


Hi Seal Dog,

Seems like your going to walk the same shoes as me, I also had ULAR surgery and mine was upper rectal cancer. I think I could have had just LAR but I think they took abit out. Yes 6 Weeks of radiation/chemo, 6 - 8 week break, surgery, 6 week break, then folfox for 8 cycles. Each different section of treatment has its different side effects, but don't be scared of a little pain meds etc. Surgery is also hard, and well chemo is horrible.

But hey im back at work now almost to start my FIFO lifestyle again. Neuropathy is a bitch from the folfox, and this may be an issue for you too. It, besides my bowel issues, is the only long lasting side affect. Its like on cold days having feet and fingers affected by frostbite. They are just so numb. But during treatment chemo I didn't have it in the feet, it actually got worse when I finished chemo and also after a couple of weeks.

Post reversal. I had my bag from the very beginning before radiation. They where scared that the radiation could cause me a complete blockage so in went the port and bag. Now post reversal. Life is like hell the first couple of days post reversal. I couldn't believe what they had done to me was what I was thinking in my head. Be prepared to lose a few pairs of shorts.

Im 12 weeks or 14 weeks post reversal. Life is great and most days im free to do whatever. I think immodium and Metamucil is my best friends. One the weekend I didn't take the medication, and I got stuck in a portaloo at a residential building site for 2 hrs 100 meters from a friends house as we were going for a walk. I thought right im good to go after two hrs, walked 50 meters and my shorts were ruined.

I appreciate everyday that I didn't get stuck with the bag, and if daily medication is what I need for the rest of my life to not keep losing pants, then I can deal with that.

I hope you get a good staging, and don't be afraid. You will fly through this and be on the other side like me back to a near normal life.
06/2016 Went in for colonoscopy came out with a tumor. Age 35
12cm from verge at junction. Rectal cancer.
Clinical stage T3 NO MO
Temp illestomy
Completed 5FU and Radiation
LAR surgery planned 13 Oct 2016
Completed ULAR surgery 11-10-2016.
0/22 nodes
pT3 N0 M0 R1
Stage 2A

Pathology reviewed and changed
ypT3 N0 M0 R0

Started folfox 21-11-2016
5-4-17 NED
Reversal 12-4-17

[Ana & Alex]
Posts: 82
Joined: Tue Feb 14, 2017 5:14 pm
Location: Austria

Re: Age 30 (M) Recently Diagnosed, Family History

Postby [Ana & Alex] » Tue Jun 13, 2017 4:20 am

Dear Sealy,

You have already got some pretty good insight in the answers in your post.

I just wanted to answer your first answer, as in, if this treatment path would be adequate to your age and situation.

I am MSS, but i am a 29 year old with a Rectum Adenocarcinoma Stage IIIb. So I can understand a little bit of the surreal feeling of having to give up on your vagina, your fertility, your bowl routine, your body image and on your normal to expect life expectancy at such a young age and so violently.

Many of my thoughts and decisions are reflected in this forum and if you search under my Nickname you will find all the helpful answers I had the privilege of receiving in the process of figuring things out.

That said, I've done radiation therapy and chemotherapy, I chose to take 25 cm of my rectumsigmoid colon and end up with a permanent colostomy and now im choosing to do chemotherapy with everything my oncologist has to offer. So, the same path that it is being suggested to you: radiation, surgery, chemo.

I want to live. At least another 20 years or more if I get lucky. And there is nothing I won't do, nothing I won't try, to be here in this world to be able to accompany my daughter into adulthood.

Cancer kills. A lot of good people. I've seen it so many times as an Nurse working in Oncology - it broke my hearth so bad i hab to change my department. But maybe because of it it gives me another perspective of what I'm ready to do for this to go well for me...

To have an ostomy or to have other issues to deal with maybe very difficult, but as long as you are alive and are able to take some quality of your daily life experience i say everything goes and it's worth it.

To me, my colostomy already paid of. I am a nurse and could manage it perfectly from the beginning. After radiation I would spend hours in the bathroom everyday from the damage to my bowels. Now, I only think about it a couple of times a day. I can dress everything I've dressed before and I don't care what other people think. I can eat everything I want. I can decide that I want to leave my appartment in the next five minutes and dont have to think about a thing. I don't need to think about taking medications or what problems chronic drugs will have in the future. Only to have supplies and I'm on my way.

After all this is done, I'm planning to start to irrigate and if it works it will be even better.

But that's a very individual perspective.
Because I am young, I will do everything there is to do so that I can live as long as can with quality.

Because I'm young I know that I'm more open to everything, I can heal faster, I can learn better, I can adapt to everything as long as I have quality and am alive.
It is sad to experience such a thing at a young age - but try to think about it as something in your advantage. That was for me the stage where I stopped feeling sorry for myself to actually feel that I'm "lucky" to have youth on my side.

I'm sorry for you to be here - but know that we are strong in ways that we can't even phantom. You too, will manage and stand in the other side of treatment soon enough.

And these guys will help you get through it!
All all the best, lots of courage and keep strong!

Ana
Dx @ 29 yo. Mum (22. Mo) & Wife

12/2016: Rectal AdenoCa G2. CEA 4.3. RAS Wild. MSS. IIIB.
01 - 03/2017: 28 RTx + CHT 2,5 g/d Capecit.
03 - 06/2017: Suplemments and Cimetidine.
05/2017: TME/TAMIS + permanent Colostomy CEA 0.5
05/2017: ypT2N2aM0 (4/15), good cCR, limited pCR
06 - 8/2017: 4x CapOx 3,5 g/d (2x Oxi reduced to 80%)
09 -11/2017: 3x Capecit. monotherapy 4g/d

User avatar
Maggie Nell
Posts: 655
Joined: Wed May 27, 2015 1:57 am
Location: Melbourne, Australia

Re: Age 30 (M) Recently Diagnosed, Family History

Postby Maggie Nell » Tue Jun 13, 2017 11:58 pm

sealdog wrote:Wow thank you for those quick replies!

I'm Australian, I'm in Victoria and we are lucky with public healthcare paid with taxes, so lucky that money isn't a barrier, just acting on the right information and time.



G'day Sealy,

Another Victorian here. Get in touch with our Cancer Council in Victoria, phone number 131120, as they have Cancer Nurses that you can talk to
in Aussie time and can answer your questions. You can also access free financial, legal and career support. They'll also send you out some
booklets.

Good to hear that money isn't a barrier for you but you might want to still collect $200 to go towards your phone bill, or to purchase groceries. Not
shitting you mate, get cancer in Victoria, you pass GO and get $200!

All the best for navigating our public health services which can be stressful.
If you can go private, DO.

Look up AussieAssCancer in this forum, he also has a blog on wordpress. He's in Sydney but don't hold that against him.. :P
DX April 2015, @ 54
35mm poorly diff. tumour found upon emergency r. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX

sealdog
Posts: 7
Joined: Fri Jun 09, 2017 8:23 am
Facebook Username: nathan.seal.3

Re: Age 30 (M) Recently Diagnosed, Family History

Postby sealdog » Mon Oct 16, 2017 7:54 pm

Thanks everyone for your calming replies in the early days. I know I haven't posted any updates but I haven't felt myself at all, it's a strange limbo where some days I don't even feel like I exist, not to be too dramatic ha! Four months in and I've realised you just have to ride the rollercoaster, I'm impatient at the best of times so this is the ultimate test.

I'm approaching surgery in a couple of weeks, an ULAR using the Da Vinci Robot at Peter Mac in Melbourne after I got a second opinion with another surgeon. Needless to say I'm terrified of the surgery and the potential life long side effects, but more terrified of the cancer inside me. My tumor was located at between 7-8 cm, so while I've read an ULAR is total removal of the rectum, they're saying they will still leave me with a stump of rectum.

The tumor itself has shrunk to the size of a small ulcer supposedly, a near complete response so that's good news I guess. Still no avoiding surgery in my Doctors eyes though, but at least the odds are better for the treatment plan to work entirely.

Mum got her genetic results back and it's been confirmed she has lynch syndrome via the EPCAM gene, which correlates with MSH2. Once they confirm my genetic results after surgery then they are proposing a possible mix of immunotherapy + chemotherapy post surgery but more on that to come, one researcher even hinting at a possible vaccination coming out next year for this strain I guess, they were pretty flippant about it but just had to tell me. Where was it last year mate!?
Diag 30/04/2017 Stage 3A\B Rectal Cancer
3.5cm's Mid Rectum, 50\50 chance suspicious lymph nodes 2-3
Mum Lynch Syndrome due to EPCAM gene, diagnosed 05/01/2017, had checkup because of this! Grandfather and Great Grandfather also had colon cancer
15/06/2017 ChemoRadiation 6 weeks - Xeloda
Peter Mac Second Opinion 05/07/2017 -Re staging process PET, CT, MRI and Flexible Sigmoidscopy
ULAR proposed using Da Vinci Robot 11/2017

Aqx99
Posts: 245
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Age 30 (M) Recently Diagnosed, Family History

Postby Aqx99 » Mon Oct 16, 2017 10:44 pm

I was diagnosed with rectal cancer in February. I have been down the path of chemoradiation, LAR with temporary loop ileostomy (mine was Da Vinci as well), and am currently in adjuvant chemotherapy. Sometime early next year I will have my reversal. If you are having any sort of doubts as to your treatment plan, get a second opinion. It can't hurt to either hear a different approach to your care, or have it confirmed that the current plan is best. Feel free to PM me if you want to ask me any questions, or even if you just need to talk, rant, etc.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
Diagnosed at age 39
2/21/17 Diagnosis
2/21/17 CEA 0.9 ng/mL
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR with temp loop ileostomy, ovaries and fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 Started CapeOx, 6 Cycles
7/24/17 Diagnosed with precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
1/18ish Reversal


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Google [Bot], Robino1 and 42 guests