Quick intro -- diagnosed Friday

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horizon
Posts: 1526
Joined: Tue Apr 12, 2011 10:10 pm

Re: Quick intro -- diagnosed Friday

Postby horizon » Sat Aug 03, 2019 9:02 am

I can relate to so much of what you wrote in your intro because a lot of it mirrors my story. Wanted to let you know to stay strong if they find there was lymph node involvement. That's what happened with me and it meant I was stage 3 and needed six months of chemo. I'm still here 8 years later and the same could be true for you.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 8 years NED). Is this real life?

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Zackattack
Posts: 40
Joined: Mon Jul 15, 2019 4:28 pm

Re: Quick intro -- diagnosed Friday

Postby Zackattack » Mon Aug 05, 2019 12:29 am

horizon wrote:because a lot of it mirrors my story.


Thanks for the reply and so glad you're around and doing well to tell your tale. I have a few questions- I hope that's okay with you

What size was your Tumor in mm? layer? I'm at minimum SM3 depth with 17mm polyp, but they won't know more until Aug 21st and free me of all of those lymph nodes.
Has your life been significantly altered due to the actual surgery or chemo part? (mental or physical)
Have you altered your diet or are you taking anything to attempt to prevent a reoccurrence?

Much appreciated and best,
Zack
Colonoscopy due to occasional blood in stool.
DX: Rectal Cancer, 7-12-19 @ age 36, male
CEA Levels of 3.0, seems to be T1 at first glance (and hopefully forever?).
Moderately differentiated cells. 12 to 15cm from anal verge
7-26-19 --Dr. calls to advise upon rerunning pathology, sm3 depth...
TME surgery scheduled for 8/21/19
Successful surgery and feeling good so far
2/15 Lymph nodes had cancer.
Stage 3A T1cN1M0

retiredteacher
Posts: 109
Joined: Sat Oct 21, 2017 1:34 pm

Re: Quick intro -- diagnosed Friday

Postby retiredteacher » Mon Aug 05, 2019 2:10 am

So much of the story cannot be told until your post surgical pathology. Your very nice distance from the AV is a huge plus. I had what my GP told me was a huge (7 cm) tumor that had been there awhile. Struggled getting a qualified surgeon. But once the insurance approvals came through, absolutely rough and smooth sailing. All the bumps in the road that come with the pre-surgical chemo and radiation - not fun. My qualified surgeon was determined (while I was under) that we could skip the ileostomy and they watched me after surgery for leakage. Not fun at all, quite a bit of drama - poop drama. After that, more chemo - we skipped the wait and watch option. More chemo - not fun. After that, neuropathy pain. Time - about a year.

The hubby is a colon cancer and small cell lung cancer survivor. So, we know the drill and are pretty stoic about it all.

20 months down the road. We've travelled all over with few issues, except that we need to know where the bathrooms are. The neuropathy has waned, the memory of the port and the hanging chemo bag is a distant memory. I will never be the same, although I am "way better" than before diagnosis.

There is a point on the other side. Waking up and realizing your lawn has been neglected, the garage is an absolute mess. Hubby griping about lights left on and the wife complaining about the algae that needs a power washing. Pure heaven.
RC F 63 9/17
Adeno 7 cm MSS G2 PET
T3N0M0
2.5K Cap/RT x 25
"Near complete response" PET 1/18
CEA 0.5 10/17, 0.6 10/18
MRI 2/18 yT2N0 12 cm fr AV 3 cm
LAR 2/18 yT1N0M0 0/21 G1 0.3 cm
CAPEOX 3/18, reduced to 80% at cycle 3
Completed 4 cycles; stopped, gut issues, liver enzymes
CT/ colonoscopy 11/18 NED
4/19 NED Sacral fractures/osteoporosis
"Caregiver" to the Iron Man
Hubby CRC Stage 3 2004 NED, Small Cell Lung Cancer Limited 2011 NED, Non-small Cell Lung Cancer 2019 NED October 2019

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horizon
Posts: 1526
Joined: Tue Apr 12, 2011 10:10 pm

Re: Quick intro -- diagnosed Friday

Postby horizon » Mon Aug 05, 2019 8:23 am

Zackattack wrote:
horizon wrote:What size was your Tumor in mm? layer? I'm at minimum SM3 depth with 17mm polyp, but they won't know more until Aug 21st and free me of all of those lymph nodes.
Has your life been significantly altered due to the actual surgery or chemo part? (mental or physical)
Have you altered your diet or are you taking anything to attempt to prevent a reoccurrence?


To be honest I can't remember. Mine was complicated by the fact that it was a flat polyp that they couldn't just grab during a colonoscopy. After my resection my surgeon called me and told me there was lymph node involvement and I needed chemo.

I definitely have physical and mental scars from the whole thing. I don't see how you couldn't. Don't get me wrong, I'm thankful to be here and have a good life. I was actually one of the lucky ones that got through chemo without lasting side effects. I had some neuropathy issues but they dialed back my dosage to address that.

I already was barely eating red meat before my diagnosis. I did give up bacon, which was brutal for me. I limit how much processed meat I eat and try to eat more fiber. I take vitamin D3 as well.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 8 years NED). Is this real life?

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juliej
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Joined: Thu Aug 05, 2010 12:59 pm

Re: Quick intro -- diagnosed Friday

Postby juliej » Tue Aug 06, 2019 7:10 pm

horizon wrote:I definitely have physical and mental scars from the whole thing. I don't see how you couldn't. Don't get me wrong, I'm thankful to be here and have a good life. I was actually one of the lucky ones that got through chemo without lasting side effects. I had some neuropathy issues but they dialed back my dosage to address that.

Agree with horizon. I kind of divide my life into BC (before cancer) and AC (after cancer). The AC part is both more exhilarating (there's not a day I don't appreciate just being alive and able to do the things I love like rock climbing, hiking, running, etc.) and more terrifying (staring death in the eye does that to you). It's a double edged sword this experience and knowledge we share. But one thing I can guarantee you is the friends you make along the way will be the most amazing people you'll ever meet.

horizon wrote:I did give up bacon, which was brutal for me.

Dude, I feel your pain.

Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 9/23/2019, CEA<1

camicom
Posts: 22
Joined: Thu Jun 27, 2019 1:39 pm
Facebook Username: david galloway

Re: Quick intro -- diagnosed Friday

Postby camicom » Wed Aug 07, 2019 10:03 am

Before my diagnosis, I was in great physical shape working out 5 days a weeks, and felt invincible. Its amazing how something like this changes your outlook on life and what is important..

Have to admit I broke down reading about your reaction to getting clean scans. The morning after my colonscopy getting my CEA level and getting the results of my chest CT I had the same reaction. Cried like a child.

Congrats on the baby, clean scans, and you beating this.
5/13 Blood in stool CT and Bloodwork Clean
6/17 Colonoscopy 5cm Malignant Neoplasm in Transverse Colon
CEA 1.2 Lung CT clear
6/19 Confirmed Adenocarcinoma Mod Diff
7/19 Extended Right Hemicolectomy
Stage 3A with only Primary node affected 48 total nodes taken
BRAF Neg
Recommended 3 month Folfax
Decided no chemo
5 year DF ration is 81% w/o chemo 80% with

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horizon
Posts: 1526
Joined: Tue Apr 12, 2011 10:10 pm

Re: Quick intro -- diagnosed Friday

Postby horizon » Wed Aug 07, 2019 9:54 pm

juliej wrote:Agree with horizon. I kind of divide my life into BC (before cancer) and AC (after cancer). The AC part is both more exhilarating (there's not a day I don't appreciate just being alive and able to do the things I love like rock climbing, hiking, running, etc.) and more terrifying (staring death in the eye does that to you). It's a double edged sword this experience and knowledge we share. But one thing I can guarantee you is the friends you make along the way will be the most amazing people you'll ever meet.


She speaks the truth Zack! People who will really *get* what you're going through because they've been there.

camicom wrote:Before my diagnosis, I was in great physical shape working out 5 days a weeks, and felt invincible. Its amazing how something like this changes your outlook on life and what is important..


Yep, I was hitting the gym 4 days a week and was in the best shape of my life. My dad is completely sedentary and has a train wreck of a diet. Somehow I'm the one that got CC. Still boggles my mind.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 8 years NED). Is this real life?

Maelleous
Posts: 125
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

Re: Quick intro -- diagnosed Friday

Postby Maelleous » Thu Aug 08, 2019 8:59 am

First, congratulations on the baby.

Second, wow you story is almost identical to mine. I was same age, we even look similar based on your picture lol.

You "may" have a bag for a short while depending on how much they have to take. I went to a crappy imaging place instead of a big institute so they missed a bunch on my lymph nodes so I had to do chemo unfortunately. If yours ends up just being the tumor, no chemo and you are good to go. The reversal wasn't fun since I had to have a jpouch, but after a month, it gets a lot better. Regardless if it is stage 1 or 3, you have a great chance at life and being watching your kids grow up.

I'm going on 3 years cancer free, and I couldn't even complete chemo etc.
M 35 yr
DX Rectal Cancer, 10/16 (symptoms Feb 2016)
Dx stage 2 - Surgery Oct 25 201 Loop ileo w/ j-pouch
Close margins within 1mm
9/38 lymph nodes involved on path / Stg IIIc,pT4, pN2 B, p.M0. MSS, K‐ras, NRAS, no mutation
Started Folfox - 3rd Treament, Dec 30th 2016 Cardiac Arrest - Lucky to be part of the 6% to survive!
S-ICD installed / Port Removed
Vaccine Clinical trial at UPMC - last shot June 2017
Reversal 8/1/17 - Praying this is it!
Still NED

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Zackattack
Posts: 40
Joined: Mon Jul 15, 2019 4:28 pm

Re: Quick intro -- diagnosed Friday

Postby Zackattack » Sun Aug 18, 2019 11:18 am

Maelleous wrote:congratulations on the baby.


Thank you for your comment! I'm hopeful we don't see/have lymph node cancer deposits. I believe that i shouldn't need a j pouch or a colostomy bag but I will know until after I wake up.

When you say that they missed a bunch on your lymph node imaging, what do you mean?

Anyone that I missed, thank you for your replies and they have been read and appreciated. The surgery is on schedule for this Wednesday and I'm looking forward to finally getting it out of the way and facing whatever results/healing ahead.

If anyone's around, I'll be at memorial Sloan-Kettering from Wednesday through the weekend probably.
Colonoscopy due to occasional blood in stool.
DX: Rectal Cancer, 7-12-19 @ age 36, male
CEA Levels of 3.0, seems to be T1 at first glance (and hopefully forever?).
Moderately differentiated cells. 12 to 15cm from anal verge
7-26-19 --Dr. calls to advise upon rerunning pathology, sm3 depth...
TME surgery scheduled for 8/21/19
Successful surgery and feeling good so far
2/15 Lymph nodes had cancer.
Stage 3A T1cN1M0

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Zackattack
Posts: 40
Joined: Mon Jul 15, 2019 4:28 pm

Re: Quick intro -- diagnosed Friday

Postby Zackattack » Sun Aug 18, 2019 11:21 am

Forgot to mention, I've had a swollen lymph node under my right jawline /ear for the last few weeks, it has me concerned that it's related but obviously it wouldn't be swollen from that lower area more than likely
Colonoscopy due to occasional blood in stool.
DX: Rectal Cancer, 7-12-19 @ age 36, male
CEA Levels of 3.0, seems to be T1 at first glance (and hopefully forever?).
Moderately differentiated cells. 12 to 15cm from anal verge
7-26-19 --Dr. calls to advise upon rerunning pathology, sm3 depth...
TME surgery scheduled for 8/21/19
Successful surgery and feeling good so far
2/15 Lymph nodes had cancer.
Stage 3A T1cN1M0

MeAndMine
Posts: 149
Joined: Mon Aug 05, 2019 2:40 pm

Re: Quick intro -- diagnosed Friday

Postby MeAndMine » Sun Aug 18, 2019 1:50 pm

It's great that your surgery is just around the corner. I'm just starting so I don't have any information to share to help you but I'm here rooting for you!
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine

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Zackattack
Posts: 40
Joined: Mon Jul 15, 2019 4:28 pm

Re: Quick intro -- diagnosed Friday

Postby Zackattack » Mon Aug 19, 2019 1:50 am

MeAndMine wrote:I'm just starting so I don't have any information to share to help you but I'm here rooting for you!


Good luck to you my friend. If you want to chat anytime, i'll make myself available. Surgery is 2 days from now. Xanax helps to take the edge off but I'm frightened in many ways, as i'm sure you must be. Will be on here at times through the recovery. Crossing fingers for 0 lymph nodes have cancer and no leak or blood clots. Family and friends support has been great. It's go time.
Colonoscopy due to occasional blood in stool.
DX: Rectal Cancer, 7-12-19 @ age 36, male
CEA Levels of 3.0, seems to be T1 at first glance (and hopefully forever?).
Moderately differentiated cells. 12 to 15cm from anal verge
7-26-19 --Dr. calls to advise upon rerunning pathology, sm3 depth...
TME surgery scheduled for 8/21/19
Successful surgery and feeling good so far
2/15 Lymph nodes had cancer.
Stage 3A T1cN1M0

annieliz
Posts: 38
Joined: Fri Jul 26, 2019 5:13 pm

Re: Quick intro -- diagnosed Friday

Postby annieliz » Mon Aug 19, 2019 9:34 am

Hi Zack,

Just wanted to let you know that I am thinking of you as your surgery date approaches. Stay positive and know that you are getting the best care at MSK.

anneliz
66 Female
7/15/19 Colonoscopy
7/26/19 DX: Rectal Adenocarcinoma
CEA 8/8/19-1.9, 12/6/19-2.3
8/16/19 - 11/23/19 FOLFOX - 8 rounds
11/6 flex sig ~30% shrinkage 11/27/19-a bit more shrinkage
Neulasta 9/29/19, 10/27/19, 11/24/19
28 days Xeloda and radiation starts 12/16/2019

KathyLynn
Posts: 68
Joined: Thu Aug 31, 2017 3:40 pm
Location: Rock Hall, MD

Re: Quick intro -- diagnosed Friday

Postby KathyLynn » Mon Aug 19, 2019 9:43 am

Sending you strength, stay positive. I know it’s hard but you’ll feel better when you have a plan. I worried up till they put me out. Then woke up and I try not to look back. It’s always in my mind, but I take everyday and keep moving. You got this!

KathyLynn
8/2017. RC
11/27/2017. Robotic LAR. No chemo/rad
12/2017 Moderatley differentiated, 3.0 cm in greatest dimension
Macroscopic tumor perf: not identified. All margins of resection and proximal neg for tumor.
Lymphovascular and perineural invasion: not identified.
1/13/2018. T2N0M0 with isolated tumor cell (ITC)
7/2018. CEA 2.0. 10/18: 2.0. 1/19: 2.3 11/19. 2.1
11/19 CT NED

Punky44
Posts: 403
Joined: Mon Oct 01, 2018 4:29 pm

Re: Quick intro -- diagnosed Friday

Postby Punky44 » Mon Aug 19, 2019 11:36 pm

Another person sending you positive vibes for your upcoming surgery!!
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1; 7/24: 1.9; 10/22: 2.6
6/28/19 Reversal and port out
10/22 — nodules on lungs—possible infection or mets—PET scheduled for 11/25

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.


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