Newly Diagnosed Stage III colorectal cancer

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Ruthless17
Posts: 2
Joined: Fri Nov 06, 2020 3:47 pm
Facebook Username: Sharon.Murillo

Newly Diagnosed Stage III colorectal cancer

Postby Ruthless17 » Fri Nov 06, 2020 4:23 pm

I’m scared shitless (pun intended). I have stage III colon cancer and it is very close to the anus so I am facing 5 days of radiation, 3 months of chemo and then surgery and a permanent colostomy. Literally 3 weeks ago I felt fine and then started bleeding and went in for colonoscopy. I am overwhelmed by it all. First and foremost I’m afraid I might die and I am an otherwise healthy 59 year old who still has a lot of living to do. And secondly I’m afraid my life will never be the same. I’ve been trying to research life with a colostomy but most of what I see are from people with Crohn’s disease or IBS and obviously their situation is very different. I’m not sure what I’m looking for or asking exactly. Maybe top things I should know as I start this battle? Maybe words of advice or encouragement? Right now I just feel very alone.

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beach sunrise
Posts: 299
Joined: Thu Mar 05, 2020 7:14 pm

Re: Newly Diagnosed Stage III colorectal cancer

Postby beach sunrise » Sat Nov 07, 2020 1:05 am

Hi, my suggestion is back read rp1954 and CRguy for guidance on the start of your treatment. Valuable info you can put to use there.
Oh, and if you are due for a teeth cleaning or need dental work done it would be a good time to do it before treatment begins. I had no idea (no one mentioned it to me) and when dentist appt time came my onc said I needed to wait. Well, its been 19 months since I've had my teeth cleaned and its not a good feeling.
It is very scary facing cancer, no doubt! Everyone copes in their own way which is why I love this forum. For me, I had to get all the info I could about this devil inside me then work to kill it in a mixture of Joe Kenda and Van Helsing mindframe.
Last edited by beach sunrise on Sat Nov 07, 2020 1:39 am, edited 1 time in total.
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

Punky44
Posts: 453
Joined: Mon Oct 01, 2018 4:29 pm

Re: Newly Diagnosed Stage III colorectal cancer

Postby Punky44 » Sat Nov 07, 2020 1:21 am

Sorry you find yourself here. Very scary to digest at the beginning for sure—everyone here can remember that feeling (you can research my first posts to see documented evidence of my freaking out on behalf of my mom.) Once you get a plan and get fighting, you will feel a little less head spinning and a little more in control. There are also very inspirational posts to read on here of stage 3/4 survivors.

It sounds like you are taking a neoadjuvant approach and short-course radiation? This is also what my mom did (you can see my signature for the timeline.)

Did they tell you you had to have a permanent colostomy vs a temporary ileostomy? I know a few folks here who were borderline and the doctor decided in surgery. There are also varying opinions/outcomes between the two, and there are some people that have such a difficult time after the surgery/reversal that they actually prefer the permanent colostomy.

People here are great for any specific questions you may have.
Caregiver to my amazing mom (68 at dx)
10/1/18 DX with rectal cancer; CEA 17
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
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3; 2.4
Latest update: 6/20–Clear CT; 9/22—CEA 2.4

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

roadrunner
Posts: 63
Joined: Sun Jan 12, 2020 8:46 pm

Re: Newly Diagnosed Stage III colorectal cancer

Postby roadrunner » Sat Nov 07, 2020 10:20 am

I am by no means saying it’s an option for you — that’s up to you and your doctors), but there is a treatment approach called TNT (“total neoadjuvant therapy”) in which 8 cycles of chemo (usually FOLFOX) and long-course radiation are delivered before surgery is considered. Studies have shown that up to 30% of patients with a Stage 3 diagnosis can achieve a “complete clinical response” or “cCR,” and then enter a “watch-and-wait” protocol, avoiding surgery in the absence of recurrence. Since you are facing a permanent colostomy, this may well be worth researching.

I should note that some patients who pursue a more traditional approach (chemorad, surgery, chemo) also achieve “watch and wait,” but it is a lower %. Also, your doctors must be willing to do “watch and wait” — my oncologists are with a cancer center that won’t do it, but I was able to get them to work with a surgeon at another center who was a pioneer. There is a thread on this site that you may wish to read. Two notes: This approach is not for everyone, and even if you want it your body may not cooperate (I am so far right on the line — my tumor is gone, I’ve got a negative MRI and biopsy, but some clinical observations are still iffy). Short course RT can induce a cCR, but I think it is less likely than long-course. I don’t know how many centers are doing long-course in the pandemic environment, so that may also be a complication. But the idea may be worth research.
7/19: Rectal cancer: Initially staged as IIIA, T2N1M0
Initially approx 4.25 cm, low/mid rectum, mod. well diff. adenocarcinoma
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (lots of side effects/reduced size est. 70-75%)
Switched to neoadjuvant chemorad in 11/19 (Xeloda and approx. IMRT, 60 Gy, 33 fractions)
Trying to achieve cCR.

roadrunner
Posts: 63
Joined: Sun Jan 12, 2020 8:46 pm

Re: Newly Diagnosed Stage III colorectal cancer

Postby roadrunner » Sat Nov 07, 2020 10:52 am

I would also add: I think someone else said this, but even if you don’t want to pursue watch-and-wait or your biology doesen’t cooperate, choice of surgeon can be a huge deal for low tumors. Mine was just high enough that I can avoid a permanent bag, but I worried enough to research it, and with lower rectal tumors a top surgeon is key, and honestly, it just is generally best to have an experienced, capable surgeon here. This is a big, complex surgery, and lots of important stuff is down there. On the bag front though, you should keep in mind that it can be a good thing for some people. I would consider it if I do the surgery and suffer too many side effects going forward. Patients with stomas (I like that word best) often report better QOL, and I’m still working in a demanding job where I would not be able to manage a lot of side effects from reconstructive surgery (which can be common). And I see no reason why people with stomas from cancer surgery would be any worse off than those with stomas from Crohn’s or ulcerative colitis. Just maybe older and less likely to post on YouTube :D

There are at least a couple of folks on here that post about positive long-term experience with stomas. Anyway, good luck! This is a wonderful forum with lots of great, real world experiences, knowledge, and support to tap into — you made a good move posting here.
7/19: Rectal cancer: Initially staged as IIIA, T2N1M0
Initially approx 4.25 cm, low/mid rectum, mod. well diff. adenocarcinoma
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (lots of side effects/reduced size est. 70-75%)
Switched to neoadjuvant chemorad in 11/19 (Xeloda and approx. IMRT, 60 Gy, 33 fractions)
Trying to achieve cCR.

Koreysue
Posts: 186
Joined: Mon Apr 30, 2018 2:36 pm

Re: Newly Diagnosed Stage III colorectal cancer

Postby Koreysue » Sat Nov 07, 2020 11:27 am

Hello.
I’m sorry you have joined this club, but you have found the right place for knowledge, experience and support. Folks on here who have had a similar treatment plan will chime in, I’m sure.
As another poster mentioned, there are also lots of stories of survival, and in turn...hope!
My thoughts are with you as you navigate through this. Keep us updated if you’d like,
Ksue
Diagnosed: June 2017 stage 3 colon cancer
Sigmoid colon, 2 nodes affected
CEA at diagnosis: 6
Sigmoid Colectomy and folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/2018 clean
PET scan 8/20/18 NED
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT NED 6/18/2019 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8
CT NED /CEA 6/17/20: 3.8
CEA 11/4/20 4.6 <——— whyyyy? (will retest in a few weeks)

Koreysue
Posts: 186
Joined: Mon Apr 30, 2018 2:36 pm

Re: Newly Diagnosed Stage III colorectal cancer

Postby Koreysue » Sat Nov 07, 2020 11:32 am

Oh and I also wanted to say-
I don’t know if you have instagram, but you can find people on there living great lives with stomas. You can search colon cancer related words like #coloncancer #rectalcancer #stoma and it should pull up people survivors to follow
Lindsay Norris is one name that comes to mind. She is an oncology nurse that got colon cancer. Her story may be helpful.
ksue
Diagnosed: June 2017 stage 3 colon cancer
Sigmoid colon, 2 nodes affected
CEA at diagnosis: 6
Sigmoid Colectomy and folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/2018 clean
PET scan 8/20/18 NED
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT NED 6/18/2019 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8
CT NED /CEA 6/17/20: 3.8
CEA 11/4/20 4.6 <——— whyyyy? (will retest in a few weeks)

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beach sunrise
Posts: 299
Joined: Thu Mar 05, 2020 7:14 pm

Re: Newly Diagnosed Stage III colorectal cancer

Postby beach sunrise » Sat Nov 07, 2020 2:02 pm

Yes, research what roadrunner mentioned.
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

Lee
Posts: 6165
Joined: Sun Apr 16, 2006 4:09 pm

Re: Newly Diagnosed Stage III colorectal cancer

Postby Lee » Sat Nov 07, 2020 4:00 pm

Hi, sorry for the reason you are here.

I am a 16+ year survivor of stage IIIC rectal cancer. I too have a permanent colostomy bag. Yes there is an adjustment period, butt after awhile it is a part of your life. My friends know I have one, very open about it, butt my friends tell me they would not have know without me telling them.

Radiation destroyed my rectal muscles (I had 5-6 weeks of radiation), I had no control. That bag gave me my life back, I have no regrets. As I told my surgeon, I give you carte blanc to take all she wanted, just get all the cancer. She did!! Since it looks like you are dealing with rectal cancer, make sure you have a board certified Colon Rectal Surgeon vs a General Surgeon. They have the experience when dealing with rectal area.

There is a forum you may want to check out UOAA, United Ostomy Association of America. People can get a colostomy bag for many different reasons, cancer is just one example. Really there are a lot of us out there. Here is there web site.

ttps://www.uoaa.org/forum/index.php?sid ... c8fe0dc8eb

If you have questions, I will be happy to answer. Know that you are not alone here,

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!

Ruthless17
Posts: 2
Joined: Fri Nov 06, 2020 3:47 pm
Facebook Username: Sharon.Murillo

Re: Newly Diagnosed Stage III colorectal cancer

Postby Ruthless17 » Sat Nov 07, 2020 7:18 pm

Thanks to everyone that posted. I should say that I have temporarily relocated to Houston, TX to be able to get treatment at MD Anderson. At least I know I am at the #1 cancer hospital in the US. They said that they have found that 5 days of radiation is just as effective as 5 weeks and with much less damage. The location of my tumor means that I would probably suffer from incontinence if I didn’t have a permanent bag and they think the quality of life would be far better with a colostomy. There is a small chance that the radiation and chemo could wipe out the tumor and allow a wait and see approach and while I’m praying for that I’m also preparing for the fact that might not be the case. I’m told that many people with ostomy’s life a full life and I am hopeful of getting there but it is daunting to think what lies ahead and how long it will take to get there. My son is getting married in June and I feel like I will be a total mess still which is hard to swallow. I will definitely research past posts and continue to reach out for support. Again, thank you to all that posted. Although I’m sorry anyone has to go through this it is also comforting to know I’m not alone.

User avatar
beach sunrise
Posts: 299
Joined: Thu Mar 05, 2020 7:14 pm

Re: Newly Diagnosed Stage III colorectal cancer

Postby beach sunrise » Sun Nov 08, 2020 1:37 am

Don't let an ostomy scare you at all. I have one and its no big deal.
My sister was born with a terminal illness and used to say all the time "I would give up both arms and legs for a good set of lungs." So for me, giving up normal bathroom way was no big deal and turns out it isn't. My "LIFE" has not changed. No one would know unless I told them and quite frankly its none of anyones business to know but me, my husband, mom and docs.
Although I think my rad onc might be a lil twisted. he keeps wanting to examine me and I refuse. He has no good reason as to why in my opinion (ostomy has nothing to do with radiation and radiation was a yr ago, smh) and told my surgeon about it. Surgeon said "its your body, your choice with that doc." Just crazy!
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

Lee
Posts: 6165
Joined: Sun Apr 16, 2006 4:09 pm

Re: Newly Diagnosed Stage III colorectal cancer

Postby Lee » Sun Nov 08, 2020 6:51 pm

Ruthless17 wrote: . . . The location of my tumor means that I would probably suffer from incontinence if I didn’t have a permanent bag and they think the quality of life would be far better with a colostomy. . .


Best advice I can give you, "Give it all you've got the 1st round", don't look back with regrets. MD Anderson is one of the best. Incontinence is no fun. Your bowels control your life with incontinence, mine did for awhile. Me today, I just carry a few supplies (bags) with me & can go about my day. Dealing with my colostomy is like taking a shower, brushing your teeth, sitting on the toilet. It becomes a normal part of your day.

If possible, talk to a ostomy nurse. Radiation destroyed my rectal muscles, I was tied to the toilet anytime I ate. 10, 20 BM daily, sitting on the toilet, hours at a time, was my normal. My only solution was to not eat ANYTHING until I knew I was home for the day. Most days that meant after 3 or 4 pm. My surgeon wanted me to see an ostomy nurse, ostomy nurse requested both my husband & I attend. That was when I/we learned what a colostomy bag was. I walked out of that meeting knowing what I wanted, I had my husband's FULL support. As he put it " you can beat this (cancer) AND get your life back." Best decision I made.

Hope this helps, again I am a 16+ yr survivor.

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!

Gravelyguy
Posts: 330
Joined: Thu Jul 05, 2018 6:03 pm

Re: Newly Diagnosed Stage III colorectal cancer

Postby Gravelyguy » Sun Nov 08, 2020 9:03 pm

Sorry you are here but it is a good group!

I had a very low, under 1 cm from the anal verge, tumor. Mayo suggested short course as well and 4 rounds of chemo before surgery (8 rounds after). I was totally ok with a permanent ostomy going into surgery if that meant I could have some more time with my family. As a stage 4 guy I wasn’t eligible for watch and wait but after the surgery there really wasn’t much of any cancer left and that was just 4 days after finishing radiation.

My surgeon was able to somehow reattach my plumbing. 3 years later and I am by no means the same as I was pre surgery but qol is good. As I said earlier I would have been fine if he wouldn’t have been able to. Either way my Speedo wearing days are over!

Hang in there. You’ve got this!

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0
12/19/19 clear scans CEA 1.0 still NED!
6/17/20 clear scans CEA 1.1 still NED!

IodineJ
Posts: 1
Joined: Sat Nov 14, 2020 4:08 pm

Re: Newly Diagnosed Stage III colorectal cancer

Postby IodineJ » Sat Nov 14, 2020 4:12 pm

I finished surgery and chemo with the team at MD Anderson in July. You’re in good hands!


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