Rant - colon vs rectal cancer

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LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Rant - colon vs rectal cancer

Postby LPL » Fri Mar 31, 2017 11:42 am

Hi Kirsti,
I'm a caregiver. DH is Not diagnosed or treated as rectal. BUT in his 2 latest CT Scan reports it says: "rectal". It didn't look correct to me.
One thing I wonder is that I see members Signature saying: "recto-sigmoid junction" (just like DH's) but some are diagnosed & treated as Colon and some Rectal.
Can anyone explain that to me?
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

JudeD59
Posts: 726
Joined: Sun Apr 12, 2015 12:16 pm

Re: Rant - colon vs rectal cancer

Postby JudeD59 » Fri Mar 31, 2017 4:14 pm

I don't really care what people call it except when people assume it's a one-size-fits-all situation. I had a section of colon removed in 2010 because of a bowel obstruction and recovered fully within months, but recovering from having almost my whole rectum removed has been a lot harder. And having colon removed because of cancer plus the chemo and other treatments involved isn't the same as having a section removed for non-cancerous reasons. So I get annoyed when people say things like, "My brother-in-law had a part of his colon removed a few months ago and he's back to normal. You had your surgery like a year and a half ago. Shouldn't you be back to your old self?" @$#%^*()*&^^

People close to me know the full details and understand what a battle recovering from the treatments and the reversal has been, but I don't feel like explaining to acquaintances that I no longer have a holding tank for my poo so it comes out whenever it damn well pleases. Most people don't even know I had a temporary ileostomy. Not something I tried to hide, but I didn't walk up to people and say, "Would you like to see the bag that holds my poo" either. Not something I was ashamed of, but while I talk about poo on here pretty much all the time, it doesn't come up in my regular conversations in daily life outside my family and closest friends. And I didn't even discuss it with them until this lovely cancer made my bowel movements a subject of family discussions. Sigh.

I just wish people would understand that every person with any kind of cancer is an individual with different issues and challenges and not everyone is going to recover in the same way. I not only don't want to be compared to the people they know who have colon cancer and bounced back quickly, I don't want to be compared to the people they know who bounced back from rectal cancer. We all have different experiences. Just respect that.

Judy
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
Reversal 2/17/16
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4

stu
Posts: 1223
Joined: Sat Aug 17, 2013 5:46 pm

Re: Rant - colon vs rectal cancer

Postby stu » Fri Mar 31, 2017 5:33 pm

Hi Jude,
Good to see you posting. You brought back a memory of my friends son who has a colostomy. Half way through a gaming session with my sons he decided to show them his bag. They gave a quick look , thanked him for sharing and continued gaming. I think it was initially too much info but it really helped them understand when he talks about managing it. I was quite proud to see them all put on tops to go swimming so he had company. They got it .
Kids!!
Take care,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

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Phuong
Posts: 1481
Joined: Mon Jun 14, 2010 10:43 pm
Facebook Username: Phuong Ly Gallagher

Re: Rant - colon vs rectal cancer

Postby Phuong » Fri Mar 31, 2017 6:15 pm

Typically it doesn't bother me - much more important that I'm having a conversation about it. Sometimes I will take it as an opportunity to educate the person I'm talking to, sometimes I don't bother correcting them. But when it comes to people who should know better I will in fact make the correction...even if it's on an XM radio interview (sorry Dr. Steve)! Colondar 2.0 promo interview starts around 19:30. :lol:
https://www.youtube.com/watch?v=DifD5J6QAsU&t=1159s
Phuong
http://sonofamotherlessgoat.net/
dx'd Stage III Rectal (T3 N1 M0)
Now Stage IV mCRC

JudeD59
Posts: 726
Joined: Sun Apr 12, 2015 12:16 pm

Re: Rant - colon vs rectal cancer

Postby JudeD59 » Fri Mar 31, 2017 7:06 pm

stu wrote:Hi Jude,
Good to see you posting. You brought back a memory of my friends son who has a colostomy. Half way through a gaming session with my sons he decided to show them his bag. They gave a quick look , thanked him for sharing and continued gaming. I think it was initially too much info but it really helped them understand when he talks about managing it. I was quite proud to see them all put on tops to go swimming so he had company. They got it .
Kids!!
Take care,
Stu


Stu!! Good to see you, too!

Yeah, kids can surprise you. Sometimes they can be extraordinarily cruel and sometimes they can be so supportive you just want to hug them to pieces. I'm glad your friend's son has good friends.

For me, I think it would have been different if it had been a permanent ileostomy or colostomy. Then I would have told more people because it would have been a part of my life from here on out. But since it was temporary, I didn't see the need. But that's just me. :)

Take care, Stu!
Judy
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
Reversal 2/17/16
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4

TXLiz
Posts: 249
Joined: Thu Sep 22, 2016 3:31 pm

Re: Rant - colon vs rectal cancer

Postby TXLiz » Fri Mar 31, 2017 8:48 pm

As a newbie here, I have to carefully read posts and distinguish rectal vs colon cancer...I realize now they are treated differently, and those with rectal cancer face different challenges. It's very eye-opening.

My 19 year old is VERY offended that breast cancer gets all the attention. My deepest sympathy is with any cancer patient, regardless of where they have cancer. But breast cancer does get it all. Today at Walmart they had little boxes at the checkout for donations for breast cancer awareness. I put money in it, because I am all for helping my fellow cancer patients and survivors. But colorectal cancer, brain, pancreatic, kidney...never see much about those cancers.

People have gotten me items for cancer awareness- fuzzy socks, a lanyard, etc- and they had the pink ribbon. I thank them for their thoughts and use them, but I don't have breast cancer. It's the one cancer everyone focuses on.
Vomiting and blockage 9/19/16 46 y F
R hemi colectomy 9/20/16
Stage 3 B CRC, located in cecum
3 out of 16 lymph nodes positive
perineural invasion/lymphovascular invasion
infiltrating, mod differentiated adenocarcinoma with a mucinous component
separate tumor nodules present in pericolonic adipose tissue
MSI-high
Baseline PET scan clear 9/16 CEA 0.5
FOLFOX 10/16- 3/17
April 16th, CT scan clear. CEA 1.1
Lynch "inconclusive"
Colonoscopy 10/5/2017 clear

CatzinDJ
Posts: 45
Joined: Thu Dec 22, 2016 12:06 pm

Re: Rant - colon vs rectal cancer

Postby CatzinDJ » Thu Apr 06, 2017 1:30 pm

I had rectal cancer- but I never say that. I always say colon cancer. I'm not fully adjusted to telling anyone that it's rectal.
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
CEA 3/2018 2.9
TB latent recently diagnosed.

Badass
Posts: 1166
Joined: Sun Jan 15, 2012 11:42 am

Re: Rant - colon vs rectal cancer

Postby Badass » Thu Apr 06, 2017 8:27 pm

FWIW-- the rectum is part of the colon. It is the last section-- so technically your surgeon's office is correct. However, I also agree that our treatment experience is so different from those who have NRCC (non-rectal colon cancer-- a term I just coined) that it is an important distinction. I used to tell people, loud and proud, that i have/had rectal cancer. Kind of like my own coming out. But then I got over that phase and all of my treatment and I just feel private about the whole thing and prefer not to have people picturing my rectum or lack thereof and wondering about my bowel movements, so I usually say colon. I know- I'm a traitor to the cause.

Jane
R.C. 12/23/11 at age 52 T3N0M0
3/1/12 completed Xeloda and radiation
5/4/12 LAR & Ileostomy
6/7/12-10/4/12 6 rounds Xelox
11/27/12 Reversal
7/13/13 1 liver met
8/13 Met resection /hai pump
4/14 Chemo completed (Irinotecan/5fu/fudr in pump)

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Rant - colon vs rectal cancer

Postby MissMolly » Fri Apr 07, 2017 8:49 am

JudeD59 wrote:I just wish people would understand that every person with any kind of cancer is an individual with different issues and challenges


JudeD59 wrote:We all have different experiences. Just respect that.


Judy: It is nice to have you back and posting, although I am sorry that your return to the forum is an indicator that your reversal has not been smooth sailing.

Your posts and writings are eloquent and the wisdoms and insights you share valuable. I always learn from your posts. Keep 'em coming.

I hope that your neo-rectum finds a point of balance and contentment.
- Karen -
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

DixieBelle
Posts: 8
Joined: Wed Jun 10, 2015 12:50 pm
Location: North Carolina

Re: Rant - colon vs rectal cancer

Postby DixieBelle » Fri Apr 07, 2017 9:20 pm

The pink "thing" reminds me:

Ran into someone I hadn't seen in years. We were catching up and I said I had cancer. He looked at my breasts. I said "NO, not boob cancer, I had ass cancer".
People always look at my breasts when I say I had cancer.
Debbie, 66 years old
diag 4/4/15, colon cancer
Fist sized tumor and
15" of colon removed 4/7
BRAF V600E Mutation, MSI High
Stage IIA, T3N0M0
0/33 Lymph Nodes
No treatment
3 years NED

Utwo
Posts: 260
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

Re: Rant - colon vs rectal cancer

Postby Utwo » Sun Apr 09, 2017 7:32 pm

I had caecum cancer.
Should I be upset every time they call it colon cancer?
Am I missing one more reason to be upset? :)
Last edited by Utwo on Tue Apr 11, 2017 8:15 am, edited 1 time in total.
58 yo male at diagnosis: T1bN0M0, 0/15 nodes, low grade/moderately differentiated adenocarcinoma
03/2016 colonoscopy #1: 2 small polyps removed in left colon; CEA = 1.3
04/2016 colonoscopy #2: caecum sessile 3.5 cm polyp piecemeal removed with kind of clear margins
05/2016 "prophylactic" laparoscopic right hemicolectomy - bleeding, leak, infection
06/2017 CT scan, colonoscopy OK; CEA = 1.6
A lot of funny stuff discovered by CT scans in liver, kidney, lungs, arteries, gallbladder and a lymph node

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kellywin
Posts: 492
Joined: Wed Jan 23, 2013 4:46 pm
Location: Northern CA

Re: Rant - colon vs rectal cancer

Postby kellywin » Mon Apr 10, 2017 6:59 pm

I totally get it Kristi! And the funny part is that I just had this same problem last week! I was filling out the damn questionnaire that I fill out every fricking year for my CT scans and this time I noticed where they type in the reasons why you are there said "follow up for colon cancer" - um HELLO, this is the radiology place, where you ought to know exactly what I had since you've been doing every scan I ever had and you should definitely know where the @%^& my tumor was and why I'm here.

I don't really mind people that aren't familiar with the differences using the wrong terminology - but I do explain it to them - people need to understand what it is and how vital they get checked, especially if they have symptoms that they brush off to hemorrhoids or IBS. I never knew that colon or rectal cancer was so prevalent in younger people, and everyone I talk to is shocked. It just isn't talked about enough and it needs to be.

And don't' get me started on pink. I totally cut it out of my wardrobe.
Kelly, mom 14 yo girl
Dx 11/15/12 Rectal Cancer @ age 40
Stage IIIC
5.5 weeks Xeloda & Radiation - complete 2/5/13
Colectomy 3/12/13, 7 of 14 nodes positive - no ileo
4/24/13-8/20/13 - 5 rounds Xelox, 1 Xeloda only

JudeD59
Posts: 726
Joined: Sun Apr 12, 2015 12:16 pm

Re: Rant - colon vs rectal cancer

Postby JudeD59 » Mon Apr 10, 2017 11:23 pm

Wanna hear another frustrating story? Talking about the hospital sending you a form for the wrong cancer, how about the hospital sending you a form telling you that you have cancer when the doctor said you didn't?? :shock:

I had a total hysterectomy in 2006 because they found masses in both ovaries. After the surgery, the surgeon said, "Good news! It's not cancer and you won't need chemo." Yay! Fantastic news!

Followup appointment at two weeks, again he says, "So we won't be doing chemo. We'll just keep an eye on it and if you have symptoms, call me." I thought, "That's odd. Why does he keep talking about chemo when it's not cancer."

Two weeks later I get a letter from the hospital addressed to Ovarian Cancer Survivor. :shock: The whole letter was about a study for ovarian cancer survivors in which they wanted me to participate. I called my surgeon's office and asked them to send my surgical report and I looked up the terms online. Turns out my tumors are in a gray area where there isn't a solid consensus whether they are cancer or not. The American Cancer Society lists them as ovarian cancer, but doctors are still debating the issue. They are also debating the best followup treatment. I asked my surgeon at the next appointment and he said they are "borderline" cancer in his opinion. But on my hospital records and my GP's records, it says I had a hysterectomy for ovarian cancer.

The tumors for the "borderline" cancer were also in my lymph nodes so when they found the tumor in my rectum, they told me they would check to see if it was a colorectal primary or spread from the ovarian. If it can spread, how can it be borderline?? So I guess I am a "borderline" two-time cancer survivor?

This medical stuff can drive you insane.

Judy
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
Reversal 2/17/16
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4

tarheelmom
Posts: 168
Joined: Mon Mar 07, 2016 5:55 pm

Re: Rant - colon vs rectal cancer

Postby tarheelmom » Wed Apr 12, 2017 6:02 pm

I have to join in the peripheral rant. I took this afternoon off to celebrate my 1 year anniversary of being free from rectal cancer. While lounging around, my cell phone rang; and the caller introduced herself as someone from some breast cancer charity wanting a donation. I politely explained to her that I had rectal cancer so my donations were directed to causes that supported research for colorectal cancer. She actually started arguing with me that I really needed to donate to breast cancer research. For some reason, it made me sooooo angry. I hung up on her, but it sort of ruined my afternoon celebration ... who in their right mind argues which cancer is more deserving of donations?????
52 y at dx, mom to 4
DX: RC on 2/22/2016
Stage I, T2N0M0, 0/32 LN
23 mm x 7 mm moderately differentiated invasive adenocarcinoma
3 cm from anal verge
4/12/16: ULAR, TME, & temp ileostomy
6/14/16: ileo reversal

JJH
Posts: 167
Joined: Mon Apr 24, 2017 7:26 am
Location: Europe

Re: Rant - colon vs rectal cancer

Postby JJH » Wed Sep 20, 2017 2:25 pm

teachpdx wrote:So I just got my reminder from my gastroenterology clinic telling it's time for my colonoscopy because of my COLON cancer. I didn't have colon cancer, I had RECTAL cancer. I'm tired of being lumped in as having had colon cancer when I don't have a rectum which is evidence of having had RECTAL cancer. And I don't think most colon cancer patients would agree that rectal and colon cancer are the same.

I'm almost 5 years post diagnosis and every time I get sideswiped with 'colon' cancer I still react with rage. In Europe they call it "bowel" cancer and that pretty much covers everything. Also, no one has rectal cancer they have "colorectal" cancer to save the feelings of the people they are talking to or appealing to. Just because your eyes cross when I say the word "rectal" isn't my problem. Imagine how I feel NOT having one. :evil:

Anyway I'd appreciate input from other rectal cancer patients and no diss to colon cancer patients as I had my sigmoid colon removed as well for precautionary measures.

Peace,

Kristi

It's interesting to note that, for a number of months, NCCN has had a 'Colon Cancer ' Quick Guide suitable for access by patients with Android devices but no equivalent Android guide for 'Rectal Cancer' patients, Now (as of last month) they have apparently rectified this omission by adding a mobile-friendly, easy-to-access patient guideline for Rectal Cancer to their list of easy-to-understand guidelines. See link below:
https://www.healio.com/gastroenterology/oncology/news/online/%7B6ef7868f-48a7-46a9-b75d-257bc2213265%7D/cancer-network-offers-new-resources-for-rectal-cancer-patients

It took them a while to get around to doing this.

https://www.nccn.org/patients/guidelines/rectal/index.html
https://www.nccn.org/patients/guidelines/quick_guides/rectal/index.html#

This easy-to-understand guideline for Rectal Cancer wasn't there a number of months ago, but the Colon Cancer version was. Why did it take them so long to create the Rectal Cancer version when they apparently have had access to the basic information all along in their main series of technical PDF Guideline documents for Rectal Cancer? Why does Rectal Cancer always seem to take a back seat to Colon Cancer?


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