Quick intro -- diagnosed Friday

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Zackattack
Posts: 14
Joined: Mon Jul 15, 2019 4:28 pm

Quick intro -- diagnosed Friday

Postby Zackattack » Mon Jul 15, 2019 5:48 pm

Hi All,

36 / m , just found out three weeks ago that my first child is on the way (wife is currently 10 weeks pregnant). Was getting excited and used to the idea of that.

I had some streaking of blood on my stool on and off for almost a year now, but I have always been a constipated type so occasional blood didn't strike me as too out of the norm.
This coincided with a urinary problem of not fully being able to empty / drips after i'm done peeing.

Urologist believed early prostate enlargement.
2 days later I go to a Gastro dr and I told him my symptoms and he ordered a colonoscopy for a few days later. I almost backed out as i'm 36, 1/1000 or 1/500 chance of perforation etc freaked me out, but I went through with it and had the colonscopy last Wednesday.
Dr calls me on Friday morning to let me know that there was only one polyp found, but it was large (almost 2cm). It was removed, and biopsied and found to have cancer embedded with less than 1mm margins removed.

It is approx 10cm from the rectum

Today, blood test (no results yet) to check CEA levels (i think that's the acronym). He also tattoo'd where he removed the polyp and referred me to a good colorectal surgeon.
Tomorrow I go in for a CAT scan which we hope is negative.

I've had a hard time coming to terms with this but reading through this message board shows me that it may be extremely tough, but it's possible to win here (with constant maintenance/checkups, etc)

I really want to see my child come into the world, I really want to live as life finally got settled and fun in the last few years.


A) Obviously, it's way too early to stage it until it's fully removed. Is it at all possible I'm stage 1 only?
B) Due to the distance to the anus -- is it possible I won't need a bag at all? I know if it is closer, it's certainly possible that they'd have to remove more. I know it's a minor inconvenience to live but just a thought.

I have three colorectal surgeons scheduled over the next 2 weeks for consults. One of them being @ Sloane Kettering. What questions should I ask? Sorry that i'm posting so early without much information-- just freaking out and i'm happy that there are others who can help lighten the impending tough next few months / years ahead.
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

AmyG
Posts: 218
Joined: Tue Dec 25, 2018 8:08 pm

Re: Quick intro -- diagnosed Friday

Postby AmyG » Mon Jul 15, 2019 10:53 pm

Take a deep breath my dude.

Sounds like you might have just caught it early. And even if not, it's not a death sentence automatically.

I myself was diagnosed two weeks after I found out I was pregnant. Went through a bowel resection at 11 weeks gestation and carried my baby to term before starting any chemo. I'm also stage IV. :roll:

My sigmoid colon was almost completely obstructed. They just found a single polyp for you. I'm not a doctor, but I'm pretty sure you are going to come out of this okay, because I have!

You can do it. I believe in you!
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19

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Green Tea
Posts: 202
Joined: Mon Oct 24, 2016 10:48 am
Location: Nusa Tenggara

Re: Quick intro -- diagnosed Friday

Postby Green Tea » Tue Jul 16, 2019 2:55 am

Zackattack wrote:... I have three colorectal surgeons scheduled over the next 2 weeks for consults. One of them being @ Sloane Kettering. What questions should I ask?

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=60707&p=480762#p480762

boxhill
Posts: 298
Joined: Fri Apr 06, 2018 11:40 am

Re: Quick intro -- diagnosed Friday

Postby boxhill » Tue Jul 16, 2019 7:40 am

Cancer embedded within a polyp is stage 0, right? I'll keep my fingers crossed for you that nothing else is found after a good look around.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED, 2mm indeterminate lung nodule
11/20/18 CT NED, Lung nodule calcified granuloma. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda

Jolene
Posts: 130
Joined: Wed Jan 23, 2019 10:17 am

Re: Quick intro -- diagnosed Friday

Postby Jolene » Tue Jul 16, 2019 9:13 am

Hi Zack,

I haven't been on the forum too long but was diagnosed with rectal cancer about 8 months ago. You can see the details of my diagnosis in my signature. I just want to start off by saying this forum has been my saviour and many posters have been providing advice and pointers to ask all the right questions whenever I check in with my healthcare team. So you are in the right place !

The fact that you have scheduled to see 3 colorectal surgeons means you will have 3 different opinions for comparison and you sound like you know what you are doing !

Urologist believed early prostate enlargement.
2 days later I go to a Gastro dr and I told him my symptoms and he ordered a colonoscopy for a few days later. I almost backed out as i'm 36, 1/1000 or 1/500 chance of perforation etc freaked me out, but I went through with it and had the colonscopy last Wednesday.
Dr calls me on Friday morning to let me know that there was only one polyp found, but it was large (almost 2cm). It was removed, and biopsied and found to have cancer embedded with less than 1mm margins removed.


2cm sounds too large to be considered a polyp... If it was biopsied and found to have cancer embedded then is it considered a malignant tumour is a question that I would raise ?

Today, blood test (no results yet) to check CEA levels (i think that's the acronym). He also tattoo'd where he removed the polyp and referred me to a good colorectal surgeon.
Tomorrow I go in for a CAT scan which we hope is negative.


Do note that CEA levels might not be the most accurate gauge. I was diagnosed at stage 3c but my CEA levels returned all negative and within range. I would also find out which part of the body are they ordering the CT scan for ? When my colorectal doctor suspected my 2cm tumour during the colonoscopy to be malignant, he sent me straight to a CT scan for my liver and lungs to see if there are any metastasis (spreads) as those organs are usually the first to get hit by colorectal cancer.

Also - will they be ordering an MRI / PET scan too ?

A) Obviously, it's way too early to stage it until it's fully removed. Is it at all possible I'm stage 1 only?


I believed it is possible to do an approximate staging but just not specific until fully removed.

B) Due to the distance to the anus -- is it possible I won't need a bag at all? I know if it is closer, it's certainly possible that they'd have to remove more. I know it's a minor inconvenience to live but just a thought.


My tumour is about 7-9cm away from the anus and the doctor told me there shouldn't be a bag for life situation. You may require a temporary bag if you are going down the surgery pathway for healing purpose.

Another thing I would ask about is the possibility of a Wait and Watch approach seeing as your 2cm cancer embedded polyp has been removed ? You can find out more about this on a separate thread.


http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=53498

Would you also be requiring radiation at all ?

Basically - ask for a treatment plan to assess your options !
Dx @ 39 F, married
Nov 18 - Scope + MRI + CT = Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT, 28 sessions + Capecitabine at 3000mg daily
End Dec 18 - Completed CRT with little side effects
Feb 19 - Second MRI showed a speck of residual tumour - continue to wait
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - Complete clinical response. Surgery on hold. 6 cycles of Xelox.
Aug 19 - Completed 6 cycles of Xelox. Wait and watch protocol in place !

tminor5
Posts: 30
Joined: Wed Jun 13, 2018 11:46 am

Re: Quick intro -- diagnosed Friday

Postby tminor5 » Tue Jul 16, 2019 2:00 pm

If you read my signature you can see about my husband. He went in for his year scan and they found a nodule on his lung. His scans had not shown his lung in the past. He has to go back at 4 months to scan again to make sure the nodule didn’t grow and may be a met. They said it could’ve been there before and it is just scar tissue. But because we didn’t have a scan we have to check it. His CEA levels are way down but they still want to make sure. So I agree the scan should include lungs and stuff. Lots of good suggestions above. I just wanted to give an example of why the scan should include the other organs.
DH DX at 46  pT4a,pN1a CEA 1.6
5/25/18 ER suspected bowel obstruction, found infection and diverticulitis
5/27/18 Colonoscopy found colon cancer, couldn't insert stint to do chemo first
5/27/18 Surgery to remove 18" of colon and cancer 1/33 lymph nodes not seen on any near by organs, has colostomy because of infection could reattach after removing tumor
6/25/18 First FOLFOX chemo treatment (12 cycles)
11/26/18 Last chemo treatment
12/17/18 Colonoscopy showed surgeon got all cancer

del
Posts: 109
Joined: Thu Mar 03, 2016 11:21 pm
Location: Sydney, Australia

Re: Quick intro -- diagnosed Friday

Postby del » Wed Jul 17, 2019 9:01 am

Very sorry for what you are going through. It must be especially difficult knowing you have a baby on the way. You have come to the right place on this forum, and by the sounds of it you have done your research and are taking all the right steps.

20mm is not very large so hopefully it has been caught early. Mine was 27mm and still stage 1. Once you get those scan results you should have a better idea of what you are up against. Until then, try to keep your mind occupied. Whatever the results are, you will find the strength to fight it.

Good luck and keep us posted!
Male, 33 @ dx, stage 1 RC (T1N0M0 0/29 LNs)
2016-02 - Cancerous polyp removed during colonscopy, 0.5 mm margin
2016-03 - ULAR & TME surgery, temp ileostomy
2016-04 - DVT, pulmonary embolism
2016-11 - Ileostomy reversal
2018-10 - Another DVT & PE

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GreenLakeGirl
Posts: 768
Joined: Mon Jan 18, 2010 5:55 am
Location: Pacific NW

Re: Quick intro -- diagnosed Friday

Postby GreenLakeGirl » Thu Jul 18, 2019 5:01 pm

Congrats on the baby! Now...for you, the most important thing is that you stop the Googling, and try not to get ahead of yourself. You've got doctor appointments scheduled, so try not to do too much research on your own until you have a little more information to go on.

You asked about staging; it could be super early! Stage 0, 1, or 2 if the cancer is only in the polyp. You should definitely ask about watching and waiting as Jolene suggests if you are 0 or 1.

You asked about surgery and an ostomy bag; I think you are getting ahead of yourself in worrying about this though. It is entirely possible that the cancerous cells have been contained in the polyp and your GI got it when s/he removed the polyp! You can ask about the appearance of the polyp (flat, blobby or stemmed) and how confident they feel in the margins. You can ask about genetic testing, especially for Lynch or FAP. To be honest, I would think it's good news that your doctor found only one polyp, and the likelihood of a genetic component is probably low. Now would be a good time to ask your parents or extended family about any cancer or GI diseases (Crohn's or UC) in your family tree. If that information is hard to get (adoption, estrangement, no one to ask), don't stress about it.

And a positive anecdote: A friend had some cancerous polyps removed at around age 36. He was either stage 0 or 1, and the follow up initially has been quarterly colonoscopies and blood tests, with no chemo or surgery. He's doing great! I know it's hard, but try to believe that your medical team will do all they can to support you while you focus on your wife and the pregnancy.
2009, age 37 with a 2yo: CC, IIIB (T4N1M0). IBD history
2010-11: FOLFOX, 12 rounds. 5 surgeries (3-step Ileal j-pouch, infection, VATS)
Currently NED.
Mom, you can go the hard way if you want, but the easy way is much easier. ~my 3yo

NHMike
Posts: 2082
Joined: Fri Jul 21, 2017 3:43 am

Re: Quick intro -- diagnosed Friday

Postby NHMike » Fri Jul 19, 2019 8:58 am

You said that the polyp is 10 cm from the Rectum. This should be colon cancer unless you meant to say that it's 10 cm from the Anal Verge.

If it is colon cancer, then I think that they just do surgery and then talk to you about adjuvant chemo.

It sounds like you caught this pretty early (my tumor was over 100 cubic inches).

It's scary stuff and we're hoping that your scans are otherwise clear.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

DarknessEmbraced
Posts: 3308
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Quick intro -- diagnosed Friday

Postby DarknessEmbraced » Sat Jul 20, 2019 11:31 am

I'm sorry for your diagnosis and I hope your CT scan shows it hasn't spread.*hugs*
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
NED 12/21/18

jmn
Posts: 48
Joined: Sat Aug 11, 2018 8:20 pm
Location: New York/Philadelphia

Re: Quick intro -- diagnosed Friday

Postby jmn » Sat Jul 20, 2019 7:24 pm

Welcome to the forum, Zack, though I’m sorry about what brought you here. Sounds like you’re doing all you can at this point. I certainly understand your anxiety about all of this—especially with your first child on the way. Hope you get some good news from your doctors.
DX: CC, 7-9-18 @ age 61, male
Severe anemia (4.5 g/dl), 5-11-18; colonoscopy, 6-29-18
Lap-assisted right hemicolectomy, 7-16-18
G2, moderately differentiated adenocarcinoma in cecum, 4.2 x 3.7 x 0.7 cm
Stage IIB, pT4aN0 (first pathology DX: pT3N0)
0/24 lymph nodes, LVI present, PNI present, surgical margins clear, MSS
CEA: 3.0 (pre-op, 7-10-18); 0.7 (post-op, 8-8-18)
TX: Xeloda (capecitabine) monotherapy, 10-16-18 to 4-21-19
CEA: 4-19, 3.4; 5-19, 3.0; 7-19, 3.0
NED: 5-28-19 :D
Clear colonoscopy, 7-15-19 :D

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Zackattack
Posts: 14
Joined: Mon Jul 15, 2019 4:28 pm

Re: Quick intro -- diagnosed Friday

Postby Zackattack » Sun Jul 21, 2019 1:12 am

Hi All.

Thanks so much for the replies. It really helped me get through the days of the unknown. My friends and family have really stepped up to the plate and been there keeping my spirits high during the last week.

I have a lot of information I've digested (pun intended) and I'll try and timeline it for you all.

So I'll do a TLDR at the end of this but for those who are interested in details:

From the 'you have cancer' news on Friday throughout Tuesday evening, I was working on accepting this new chapter by reaching out to those I consider my best friends and just talking about how I was feeling. I could only really wrap my head around an early stage/mid stage cancer. Trying to envision a late-game scenario was hard. Lots of marijuana helped to numb the pain and sort through my thoughts.

I eat clean and make good food decisions, I don't drink or take drugs (sans THC), I go to the gym 2 x a week and also stay fairly active. I'm 36. I am a good person. I try and give off positive vibes and always am active to make a random person smile every single day. How can this be?

Tuesday evening -- the CAT scan happens-- Dr. comes from his office to be around during the radiologist reading the scan. Last appointment of the day. I try to go back to the regular waiting room but am unable to stop crying and stay strong knowing that the news forthcoming will ultimately determine what sort of story the next chapter of my life will bring. They call my wife into the inner waiting room and the entire time I am shaking uncontrollably. What feels like a lifetime goes by and the Dr. comes in with two thumbs up and goes over the results. A fluid-filled cyst on the liver (deemed non-cancerous) and a kidney stone which helps explain why I had a trace amount of blood in my urine. Other than that -- totally clear!

I give the Dr a huge hug and am next level ecstatic that my worst fear was quelled, not stage 4.

Wednesday (nearly just 16 hours later) -- like some sort of sick and twisted but mildly dark humorous reality at the same time, my wife has her/our first appointment at the OBGYN in the SAME building, probably 50 feet down the hall from where I just was. Baby is healthy, 10.5 weeks, seeing it move and hearing the heartbeat was surreal. With the combination of that and yesterday's negative CAT scan I feel so grateful to be given a real chance.

Thursday -- I go to Sloan Kettering and meet with an extremely esteemed and impressive Colorectal surgeon to discuss and review my case. To summarize: He believes it to be most likely stage 1. 85% chance cancer has already been removed fully with the polyp, but...less than 1mm margins. There is an enlarged lymph node near the excision spot and if that were to be affected then it would be stage 3a. He carefully considers the wait and see approach vs. surgery. Due to the numerous factors and mostly the concern about the enlarged lymph node, he believes a robotic surgery removing (I don't remember how much) inches of my colon and a ton of lymph nodes is the right treatment for this but my case will be presented to peers over the near term to come to a groupthink decision. Surgery is scheduled for approx a month from now. Wouldn't need a colostomy bag.

This upcoming Monday, I have an appointment for another opinion. I do completely trust MSK and agree with their analysis but have been told that it's always good practice to get a second opinion.

TLDR:
CAT scan negative for tumors. Oncologist confirms it has not spread to organs. Believes it to possibly be already removed fully but due to an enlarged lymph node and being young(ish)/etc -- in order to get to 95% chance of being cancer-free (if stage 1) he recommends surgery removing a number of lymph nodes and some inches of my rectum. If stage 3, would require chemo, but he believes its stage 1.


I have mostly come to terms, though am really sad to have hit a bump in the road of life while at the same time be so grateful and happy that I have a great chance to grow old with my wife and raise a child (or two). I'd love opinions on treatment and again -- thank you very much from the bottom of my heart for reaching out and reading my current journey.
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

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Zackattack
Posts: 14
Joined: Mon Jul 15, 2019 4:28 pm

Re: Quick intro -- diagnosed Friday

Postby Zackattack » Sun Jul 21, 2019 1:34 am

Feel bad that I didn't respond to all the messages, but read and appreciate every response.

AmyG wrote:might have just caught it early.
Hi Amy - what incredible strength and reading about your journey is truly inspiring and I hope that you stay well.
Jolene wrote:Would you also be requiring radiation at all ?
Thank you for all the helpful tips and your story. I asked about the wait and see due to your post and it seems like we'll wait and see what their verdict is.
tminor5 wrote:you can see about my husband. He went in for his year scan
What a crazy wildcard to have in our lives. Wishing him and you the best.
NHMike wrote:You said that the polyp is 10 cm from the Rectum.
Thx so much for the positive well-wishes and for the clarification. I think it was between 10-15 cm from the anus -- very high up the rectum.
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

jmn
Posts: 48
Joined: Sat Aug 11, 2018 8:20 pm
Location: New York/Philadelphia

Re: Quick intro -- diagnosed Friday

Postby jmn » Sun Jul 21, 2019 2:05 pm

Thanks for the update. So glad it’s not more serious than a noncancerous cyst and a kidney stone; thrilled that your wife and baby are doing well. Kudos to you for keeping your head through the fear and anxiety of the past week and for doing your due diligence. I agree that it’s always a good idea to get a second opinion—though I know firsthand that the doctors and specialists at Sloan Kettering are among the best in the world. Dr. Leonard Saltz, head of their colorectal oncology section, is my oncologist and I could not be more pleased with care that I have received from him and all of the folks there. I’m keeping you and your family in my thoughts and prayers as you navigate the next steps in your journey.
DX: CC, 7-9-18 @ age 61, male
Severe anemia (4.5 g/dl), 5-11-18; colonoscopy, 6-29-18
Lap-assisted right hemicolectomy, 7-16-18
G2, moderately differentiated adenocarcinoma in cecum, 4.2 x 3.7 x 0.7 cm
Stage IIB, pT4aN0 (first pathology DX: pT3N0)
0/24 lymph nodes, LVI present, PNI present, surgical margins clear, MSS
CEA: 3.0 (pre-op, 7-10-18); 0.7 (post-op, 8-8-18)
TX: Xeloda (capecitabine) monotherapy, 10-16-18 to 4-21-19
CEA: 4-19, 3.4; 5-19, 3.0; 7-19, 3.0
NED: 5-28-19 :D
Clear colonoscopy, 7-15-19 :D

k0chr
Posts: 19
Joined: Wed Jun 05, 2019 5:08 pm

Re: Quick intro -- diagnosed Friday

Postby k0chr » Sun Jul 21, 2019 6:02 pm

First, congratulations on the baby. New additions to the family are such a special and exciting time.

Next, thanks for the update; positive news is always a good thing. :) You're spreading the hope around.

I'm new to the board myself and have gained a lot of good information and support from the people here. There's so much new information and things to learn I found the advice and experience of the good people here helped a lot.
DX: 54
05/24/19 DX: CC rectosigmoid adenocarcinoma
06/07/19: laparascopic
5.8cm tumor
clear margins
G2 IIIA T2N1AM0
1/10 positive
07/08/19: starting FOLFOX, 12 cycles


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