Rant - colon vs rectal cancer

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teachpdx
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Location: Portland, OR

Rant - colon vs rectal cancer

Postby teachpdx » Sat Mar 25, 2017 11:59 am

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
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

Lee
Posts: 6133
Joined: Sun Apr 16, 2006 4:09 pm

Re: Rant - colon vs rectal cancer

Postby Lee » Sat Mar 25, 2017 5:22 pm

Hi Kristi,

For me, it's not big deal. When I was diagnosed, I was told I had colon cancer. It would be a week later, I was told it was actually rectal cancer. I guess the medical community lumps them both together because they are the same caner. A person can be diagnosed with anal cancer and that is a totally different type of cancer.

I my self have used the word "colon cancer" when people ask. Or I am typical of saying "colon, actually rectal cancer". When I am in a MD office and someone says colon cancer, I will always follow up with rectal just so we all are on the same page.

Butt I do hear where you are coming from,

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!

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dianetavegia
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Location: Villa Rica, Georgia

Re: Rant - colon vs rectal cancer

Postby dianetavegia » Sat Mar 25, 2017 6:20 pm

At gym this week, two people came up to me since I'd missed a few classes due to my every 6 month tests. One man said 'So now I know why you wear pink so much!' When I said 'What? I just like pink'. He said it was because of my 'breast cancer'! Within 2 minutes an older lady in her 80's came up and said 'Oh I want to hug you but I don't want to hurt you!' and she touched her own breasts.

Really, this bugs the crap out of me! Eight years and I'm still correcting people on things like this AND that I never had LIVER CANCER but a met to my liver..........

UGH
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

11 years since dx and 7 3/4 years post liver resection.
Pronounced CURED and discharged by onc

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

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PGLGreg
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Joined: Sat Nov 04, 2006 12:38 am
Location: Waimanalo, HI

Re: Rant - colon vs rectal cancer

Postby PGLGreg » Sat Mar 25, 2017 6:41 pm

Tell people you just have rectal disfunction.
Greg
stage 2a rectal cancer 11/05 at age 63
LAR 12/05 with adjuvant radiation+5FU,leucovorin 1-2/06
NED for 12 years, cured

Lee
Posts: 6133
Joined: Sun Apr 16, 2006 4:09 pm

Re: Rant - colon vs rectal cancer

Postby Lee » Sat Mar 25, 2017 10:43 pm

Yes the pink ribbon mentality bugs me a WHOLE LOT. Don't know many times, people ASSUMED I had breast cancer. And the phone calls to donate to the pink ribbon. When I say I donate to colon cancer causes, they follow up with surly then you can also donate to breast cancer causes. They don't stop until you hang up on them. Finally had to put a do not call me in place.

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!

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Maggie Nell
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Joined: Wed May 27, 2015 1:57 am
Location: Central Highlands, Victoria, Oz

Re: Rant - colon vs rectal cancer

Postby Maggie Nell » Sat Mar 25, 2017 11:19 pm

Stick to your guns, Kristi!

Anatomical correctness is vital to your psyche, however, I doubt
you are receiving hand-written letters that would indicate a personal touch and awareness of you as
an individual, so you are allowing a computer-generated one-size-fits-all cost-saving notification to get your goat!

Most folks on the admin side can't tell their elbow from their arse and it is fortunate that they're not on
the business end of a scope.

Do you think your anger over this serves to alleviate the anxiety as you go into these scopes? If so, it's all
good, yeah?

All the best for a 'clean' result.

Maggie
[size=85]DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency r. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX

Ordained Dudeist Priest at Dudeism, the Church of the Latter-Day Dude

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CRguy
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Joined: Sun Feb 10, 2008 6:00 pm

Re: Rant - colon vs rectal cancer

Postby CRguy » Sun Mar 26, 2017 1:27 am

I don't get too concerned about formal nomenclature of anything " south of my mouth... " !!!!! :shock:
I am good with colorectal, BUTT, arse, ass, butthole, colon, rectal ...... whatever

IF I am having that conversation ... I will supply the vocabulary ... :mrgreen:

As to others screwing up ...... don't care ... BUTT ....

BUTT ... if your doc's office is sayin' colon and you be rectal = READ MY FILE BUTTHEADS ! :twisted: :twisted: :twisted:

Like I said I don't lose sleep over this .. BUTT if folks who should know are still OTL ....
givem' a CTalk tuneup

Cheers
CR
Caregiver x 4
Stage IV A rectal cancer/lung met
13 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

mct
Posts: 35
Joined: Sat Nov 12, 2016 10:08 pm

Re: Rant - colon vs rectal cancer

Postby mct » Sun Mar 26, 2017 7:19 am

I agree with you Kristi. I'm a fan of using the correct terminology....and if it all gets lumped into 'colorectal' or 'colon', it diminishes the opportunity to educate and raise awareness specific to rectal cancer. Surgery, treatment and prognosis is different for colon and rectal cancers.
Breast cancer 2009
Rectal cancer Nov 2016, T3N0M0, CEA - 10.3
28 days rads/Xeloda - finished Jan 19 2017
Surgery ULAR Mar 17, 2017
Anastomotic leak, surgery for ileostomy April 4, 2017
May 2017 CEA - 2

DBF
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Location: New York

Re: Rant - colon vs rectal cancer

Postby DBF » Sun Mar 26, 2017 8:46 am

I once had a terminology incident with someone when she admonished me for saying I had colon cancer and not "colorectal cancer." I use the term colorectal when I'm speaking in general, but I say colon cancer when I'm speaking of my specific case. Her point was that people don't want to say the word rectum, and that's why I was saying colon cancer. It was annoying because I really don't give a rat's ass (or a rat's colon) about saying rectum, anus or any other word for that matter.

On a more humorous note, my elderly mother cannot understand the concept of metastatic disease. She told her (equally elderly) friends that I had colon cancer AND liver cancer. I tried to explain it: "When you go to your friend Gladys's house, that doesn't make you Gladys. You're still Marilyn, but in Gladys's house..." I think she still doesn't get it.
6/13 Dx @ 29 Wks pregnant, 42 yo
Adenocarcinoma, mucinous
7/13 C-sec/col resec/part. hysterectomy
8/13 Pulm embolism
8/13 Spread to liver
9/13 Liver resection
FOLFOX
CEA UP
ADAPT: Xeloda/Celebrex
2/14 oopherectomy
10/15 obstruction surg
10/17 Scar tissue removal/vsg surg
2019: NED :D
2020: NED
Mom to 3 boys: 22, 10 & 7

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

Re: Rant - colon vs rectal cancer

Postby MissMolly » Sun Mar 26, 2017 9:35 am

Kristi:
My sense is that your underlying well-deserved frustration and anger is lack of being recognized for the individual that you are with the specific condition that you have.

No one likes to be lumped into generalities. Be the generality the issuing of the phrase "colon," "rectal," or "colorectal cancer."

For anyone who has faced a serious, life-altering health challenge and who has expended the emotional and physical energy to face a serious health challenge, at least you want to be recognized for the individual uniqueness that is yours.

But your frustration is also an expression of an important factual distinction. Rectal cancer and colon cancer are not one and the same. Just as Lee pointed out that anal cancer is not colon cancer nor rectal cancer. There are inherent differences in the cancers.

Your frustration is one of bringing awareness to the distinctions between colon and rectal cancers and to the unique individuals so affected.

I have both Addison's disease and secondary adrenal insufficiency. Extremely rare. I guarantee you that most endocrinologists are not able to make the distinction between primary adrenal insufficiency (Addison's) and secondary adrenal insufficiency (hypopituitary based). There point being: There is a lot of sloppy verbiage in medical terminology.

You have every right to be frustrated. Continue on with your efforts to heighten awareness.
- 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.

PainInTheAss
Posts: 663
Joined: Tue Jul 02, 2013 3:08 am

Re: Rant - colon vs rectal cancer

Postby PainInTheAss » Sun Mar 26, 2017 9:45 am

Ignorance is frustrating, but we only know this so thoroughly because we have experienced it and learned about it. I did not have a clue about the difference between rectal and colon cancer before this. Not every person in the medical field really thinks about the rsmiguvations of terminology, especially staff.

I say rental cancer sometimes, colorectal others, and don't correct the term "colon" when I hear it depending on the situation.

I am much more bothered by the constant barrage of pink. We are soooooooo aware of breast cancer thanks to relentless breast cancer awareness.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

sadysue
Posts: 986
Joined: Tue Aug 02, 2011 6:59 pm
Location: Charleston, TN

Re: Rant - colon vs rectal cancer

Postby sadysue » Sun Mar 26, 2017 12:58 pm

Definitely no big deal to me. I know what I've got and it doesn't matter to me what others call it. When I first was diagnosed, I had a hard time saying rectal cancer. Now I just blurt out that I have no rectum to anyone who asks! LOL
Rectal dx 4/2011 (Stage 3B - T3N1M0)
5FU/Rad - daily/6 wks ending 6/2011
Surgery 8/19/2011
Finished 8 rounds Folfox 2/2012
Ileo reverse and port out 3/2012
NED

prs
Posts: 172
Joined: Sat Dec 12, 2015 7:09 pm
Location: Central California

Re: Rant - colon vs rectal cancer

Postby prs » Sun Mar 26, 2017 9:55 pm

When I was first diagnosed with rectal cancer I was so embarrassed that only my wife knew my secret.

Two years later the number of people who have seen my bare ass is approaching triple digits. Also as my tumor was very low, and magically disappeared during radiation, and I am being treated at a teaching hospital, the number of Drs who have stuck their fingers up my bum is in the double digits. Needless to say I am no longer embarrassed that I have RECTAL cancer, in fact I have shared this with everyone on both sides of the family, and urged them to go get their colonoscopies.

When I was first diagnosed I didn't know the difference between rectum and colon and I found it all very confusing, it took me a few weeks to figure it all out. I very much agree with the OP, particularly given the treatment for rectal cancer is very different from the treatment for colon cancer.

PS
I didn't share with family how many Drs have stuck their fingers up my bum, I know you all will understand, we have to retain a little dignity! :wink:
Peter, age 65 at dx
DX 4 cm x 4 cm very low rectal adenocarcinoma into the sphincters 01/15
Stage III T3 N1 M0 with two suspicious lymph nodes
26 sessions IMRT radiation with 1,000 mg Xeloda twice per day 03/15 to 04/15
Complete clincal response to the chemoradiation...the tumor shrank completely away 06/15 :D
No surgery...Habr-Gama watch and wait protocol instead
Xelox chemotherapy 07/15-12/15
MRI and rectal exam every three months starting 07/15
MRI and rectal exam every six months starting 07/17
NED

Cj51
Posts: 893
Joined: Thu May 13, 2010 5:58 pm
Location: Midwest

Re: Rant - colon vs rectal cancer

Postby Cj51 » Mon Mar 27, 2017 9:51 am

I stopped saying that I have "rectal cancer" when the 10th person said "Oh! Just like Farrah Fawcet..." (Anal Cancer,) I started calling it "colorectal" because I'm not always up for an in depth conversation about what an anus is vs. a rectum. :roll: Besides, it's none of anyone else's business what the specifics of my disease was, and the admonishment to make sure they get their colonoscopy at 50 is just as valid either way. I see where you're coming from, though, and as Maggie Nell says, if it helps you deal with this to educate people, then go for it. It's all good.
DX Stage IIIb RC, T3N1M0, April 2010, 51
6 wks Xelox/rad 6/10
resection, temp illeostomy 8/10 Complete response!
12 rounds FOLFOX for clean up 9/10, Allergic to Oxi, started Xeloda only 12/10
Ileo takedown 9/28/11
4/2020 NED

Aqx99
Posts: 403
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Rant - colon vs rectal cancer

Postby Aqx99 » Fri Mar 31, 2017 7:58 am

I'm new to all of this, but I can already sympathize with what you are saying. I like to be accurate when speaking with people. I very often have to explain what the rectum is. I also can't count the number of times that I have seen a visible reaction when I say the word "rectum" or "rectal" to people. Like it is a dirty word that should only be spoken in dingy bars. I have quickly learned to get over any shyness I had about that part of my body.

I also sort of have a hard time when I go in for my radiation treatments. I feel out of place. So far I am the only one I have seen in the locker room that has to remove their bottoms and have the gown close in the front. All of the other ladies have their tops removed and the gown closed in the back. Granted there can be a number of different cancers that require the tops to be removed, but most of the women talk about their breast cancer. Then they ask me, and I clarify "I have rectal cancer" and describe my treatment course, which is totally different from theirs. Some of them even stop making eye contact.

I told my husband, I have no shame in telling people that I have rectal cancer. It is a part of the body just like any other, it just so happens that it is part of our waste system. I didn't look at a menu of available cancers and select rectal cancer, it's where my body decided to grow abnormal cells.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy


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