For GUESTS who don't have Colon Cancer...

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KarMel
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For GUESTS who don't have Colon Cancer...

Postby KarMel » Sun Dec 11, 2011 1:05 pm

...and don't have family members or dear friends or significant others with colon cancer, either.

I ran this by some moderators before I posted this to make sure it was appropriate. Some of you might be offended. That is not my intent. I have thought this for awhile, but since Jessica's, Tim's, and Patrick's deaths, and Liz's mum and Clarabelle's daughter, and all the others, I have really been feeling like I need to say this, and get it off my chest. I guess if I was being unnecessarily intrusive on a forum to which I really didn't belong, I'd want someone to point it out to me, and I would accept that with all humility and grace .



TO ALL GUESTS:
If you feel the urge to post a question, please consider the follwing information and decide whether it is really necessary and appropriate for you to engage us in a discussion.

A. This is a forum for patients with colon cancers and their friends and family members to provide information, education, support, and generally uplift the spirits of those affected by this life threatening and life altering disease. We try to be good advocates of health , and specifically colon cancer awareness
B. This is not a medical advice site.
C. If you have any symptoms suggestion of colon cancer, such as rectal bleeding, abdominal pain, bloating, frequent nausea , changes in your bowel habits, or any other symptoms suggestive of gastrointestinal complaints, please discuss this with your physician.
D. Do we think you need a colonoscopy? Possibly, but you should discuss it with your doctor.
E. If you don't like what your doctor says, go get a second opinion. Seek out a board certified gastroenterologist, if necessary.
f. Do we think you have Colon cancer? WE DON'T KNOW, but probably not. Still, we urge you to discuss this with your physician. There is a long list of other diagnoses that are greater in incidence than colon cancer, such as Irritable Bowel Syndrome, Inflammatory Bowel Disease, diverticulosis,hemorrhoids, cholecystitis, Gastroesaphageal reflux, and (if you are female) endometriosis and other benign gynecologic conditions.

We can't tell you that you don't have colon cancer. 99% of the people on this forum will respond this same way.... Go see your physician if you have symptoms that are worrying you. If you are worried enough about them to list your entire medical history here on this board, then it really should be discussed with a doctor, not us. And if you see a different doctor for a second, or third opinion and you still don't like what you hear, there is absolutely nothing we can do except suggest you go to a large world renowned medical center such as Mayo Clinic or the Cleveland Clinic.


Peace to all.
Stage IV, April 2009.
Treatments...multiple .
Currently none
"It is well, with my soul"

simon031003
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Re: For GUESTS who don't have Colon Cancer...

Postby simon031003 » Sun Dec 11, 2011 1:14 pm

I second that. I have almost stopped reading those posts, but then I find that I miss out missing the newly diagnosed and welcoming them.
Michelle wife of Esteban
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Ashlee H.
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Re: For GUESTS who don't have Colon Cancer...

Postby Ashlee H. » Sun Dec 11, 2011 1:54 pm

Perfect. Wonder if there is a way when such a question is posted if a moderator could post a generic response. I know after 2 1/2 years on the site, I don't even respond to these types of postings anymore, for the reasons stated. We don't give medical advice and they need to see a doctor.
Stage IV w/liver met dx 7-1-09
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BrownBagger
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Re: For GUESTS who don't have Colon Cancer...

Postby BrownBagger » Sun Dec 11, 2011 4:37 pm

KarMel thought it would make a good sticky, and I agree.
Eric, 58
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Recurrences: (ongoing, lung, bronchial cavity, ribs)
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Guinevere
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Re: For GUESTS who don't have Colon Cancer...

Postby Guinevere » Sun Dec 11, 2011 5:17 pm

I wondered about that as well. Maybe a mod will do that for us.
Hrt atk - Feb 11
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Xeliri - Nov 11
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CRguy
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Re: For GUESTS who don't have Colon Cancer...

Postby CRguy » Sun Dec 11, 2011 5:50 pm

Hey Karmel, I just sent you a quick PM.

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

disco nap
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Re: For GUESTS who don't have Colon Cancer...

Postby disco nap » Sun Dec 11, 2011 6:09 pm

I agree with a sticky topic for FAQs for visitors who have symptoms and have arrived here probably after a panicked google search.

I don't agree with some of the messaging in this particular post: specifically, referring to these visitors as "unneccessarily intrusive". I think much of what this site is about it to promote awareness and I wouldn't like to have people feel shut out or unwelcome.

Perhaps a very emotionally-neutral informational post with some good resources written by a moderator would be appropriate. I certainly don't mean to disqualify Karmel's feelings on this and I'm sure many (including myself at times) have shared those feelings.

And, let's be honest: a guest in a panic typically won't read a stickied post anyway. Everyone thinks their case is unique and if they mention one little nuance that someone will offer them individualized comfort.

Then, someone can simply and gently direct them to the stickied post.
DX July 2 '10 CC Stage IIIC, 11/18 nodes+
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Gaelen
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Re: For GUESTS who don't have Colon Cancer...

Postby Gaelen » Sun Dec 11, 2011 6:30 pm

Actually - a moderator can stop posts like that before they even hit the board, and send the poster a generic FAQ behind the scenes. Which the guest poster might actually read. Or not. But as someone who's run forums for a long time, I agree that a panicked newbie isn't going to stop and read a FAQ post first - s/he'll just post the panicked story.

But what strikes me is that these answers don't just apply to "guests" or people worried that they have CRC. They also apply to registered members who do have, or have a loved one with, some stage of this disease. Because people ask questions here all the time that we can't answer, that we have no business trying to answer, and that should be asked in a doctor's office.

Specifically:
- we can't tell you what will happen with your treatment, only what happened with ours, with the disclaimer that everyone is different.
- we can't interpret your lab or scan results; that's a conversation for you and your doctor
- we don't know if you'll lose your hair, if you'll have an NG tube during surgery, if you'll get a pICC line or port, if you'll get a pca or an epidural, how many rounds of chemo or rad you'll have.

Every now and then (and right now, we're at kind of a high level) there are people who come to a forum so panicked about what they face that they literally suck the air out of the room with the volume and detail of their questions. No matter how diplomatic or gentle, there is no way to successfully tell these people to take a breath and relax. They can't relax yet, even a little. Until they can, they can be very high maintenance, and they won't rest until they "know" - or until they realize, on their own two feet, that there are some things they won't ever know or over which they have no control.

Meanwhile, there are some threads that are better skipped than answered if the angst is too raw to deal with. But I don't ever see an end to those kinds of threads - as long as people will turn anywhere for answers, this is one of those anywhere places - regardless what it costs the rest of the community.
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4/04: dx'd @48 StageIV RectalCA w/9 liver mets. 8 chemos, 4 surgeries, last remission 34 mos.
2/11 recurrence R lung, spinal bone mets - chemo, RFA lung mets
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KimT
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Re: For GUESTS who don't have Colon Cancer...

Postby KimT » Sun Dec 11, 2011 6:54 pm

I don't like it. I don't like excluding people for asking questions. And it doesn't happen alot on this board compared to the ovarian cancer boards I've looked at where it happens several times a day. If you don't want to answer, move on. And where do you draw the line? Should those of us that are stage 1 or 2 go away as well? That's been brought up before about people being annoyed at those that are stage 1 or 2. This board can be very difficult to be a part of. After nearly 2 years, I am still on the peripherary here and have learned to accept that. It rubs me the wrong way to see posts like this attempting to exclude people or admonish them for being scared and having questions.
2/10 dx colon cancer
right hemicolectomy 3/19/10
Stage 2a 0/43 nodes
Lynch syndrome
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KarMel
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Re: For GUESTS who don't have Colon Cancer...

Postby KarMel » Sun Dec 11, 2011 7:37 pm

Hey y'all.
Thanks for replies.
I think Jessica's death has hit me harder than I thought it would or expected. Or maybe it's the holidays. Somewhere in Florida is a darling 2 y.o. girl about to experience her first Christmas without her mama. :cry:

I think that I have so only so much emotional energy to use. I want to save it for those who are in the "you've got cancer" zone, and not just those who are frightened because Dr. Google has been inappropriately consulted as an expert in gastrointestinal symptoms, and they really just need to discuss their symptoms with a physician..


Yes Unnecessarily intrusive is probably too strongly worded. I agree, we should be friendly, and welcoming, and a source of information and education for anyone who seeks out our knowledge and expereience. But sometimes, I wish people would remember to consider what this forum really is all about, before they post. It's about those of us facing real life-or-death situations.

Regarding KimT's post, I personally don't differentiate between Stage 1 and Stage 2's and 3/4's. It's all cancer and there is every possibility that it could advance, as we know many members who have been in that situation also.
Stage IV, April 2009.
Treatments...multiple .
Currently none
"It is well, with my soul"

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CRguy
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Re: For GUESTS who don't have Colon Cancer...

Postby CRguy » Sun Dec 11, 2011 7:48 pm

I like the idea of a short to the point message which the mods could reply to a new poster, and we could also include it in a FAQ sticky. anonymous guest posters may or may not be reacheable by this method. Registered new members would be PM'd, emailed or replied to directly.

just thinking out loud here along these lines below ?????
Cheers
CRguy

************************************************
To All Guests :

We are a supportive group of colorectal cancer patients and their supporters, but we are NOT here to give medical advice. If you have any symptoms or health concerns which prompted your visit here, please be advised that you should seek medical advice from your own healthcare team.

If you have a problem you should see a doctor.

If you wish to become part of this forum, please register, introduce yourself and you will eventually find others with whom you can discuss your situation, once you know for sure what that is.
************************************************
Caregiver x 4
Stage IV A rectal cancer/lung met
14 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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John72
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Re: For GUESTS who don't have Colon Cancer...

Postby John72 » Sun Dec 11, 2011 7:52 pm

KarMel wrote:Yes Unnecessarily intrusive is probably too strongly worded. I agree, we should be friendly, and welcoming, and a source of information and education for anyone who seeks out our knowledge and expereience. But sometimes, I wish people would remember to consider what this forum really is all about, before they post. It's about those of us facing real life-or-death situations.

Regarding KimT's post, I personally don't differentiate between Stage 1 and Stage 2's and 3/4's. It's all cancer and there is every possibility that it could advance, as we know many members who have been in that situation also.


I don't have issue at all with what you posted. Nor with what Ghaelen posted. It's pretty simple that when people are experiencing symptoms severe enough to post here, they need to see a doctor. And maybe thats the standard defacto answer that should be used in those situations. A mod posting "Go see a doctor" and locking the thread.

And the stage discrimination or whatever, is nonsense. I recognize the difference between stage 1 and stage 4 and survival rates and so forth. But the person still has to go through the same crappy surgery, still has the emotions to deal with that come with a cancer diagnosis, and still has a situation that a lot of other people won't understand, and are seeking emotional support and knowledge just like everyone else here at CC.
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raym
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Re: For GUESTS who don't have Colon Cancer...

Postby raym » Sun Dec 11, 2011 8:00 pm

KimT wrote:I don't like it. I don't like excluding people for asking questions. And it doesn't happen alot on this board compared to the ovarian cancer boards I've looked at where it happens several times a day. If you don't want to answer, move on. And where do you draw the line? Should those of us that are stage 1 or 2 go away as well? That's been brought up before about people being annoyed at those that are stage 1 or 2. This board can be very difficult to be a part of. After nearly 2 years, I am still on the peripherary here and have learned to accept that. It rubs me the wrong way to see posts like this attempting to exclude people or admonish them for being scared and having questions.


I feel similar to the post quoted above. While I feel that people need to contact their doctor or head to the emergency room, it can at times quell fears if they get other peoples's experience with symptoms, surgery, etc. I've asked a number of questions, not looking for medical advice but just to see how comment my issues have been etc. I agree that we can't answer medical questions and there are some pretty scary situation that people are ignoring. And the advice has been..call your doctor or go to the ER. Maybe people need that. Numerous people choose to ignore symptoms or are not aware of the severity of their situation until others put it in front of them
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Ashlee H.
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Re: For GUESTS who don't have Colon Cancer...

Postby Ashlee H. » Sun Dec 11, 2011 8:04 pm

I don't think the suggestion was to exclude anyone. We are here to help and for support. But, there are only so many times you can respond to new posters, trying to get them to breath, get scoped, and not freak out because the chances are they don't have cancer. I don't know what the correct answer is in how to respond to these posters. For me, I have chosen to stop taking the time to respond as I know others here will give the correct advice. I get caught up dealing with my own struggles and just can't add on spending time responding to someone who "might" have cancer. I understand where the suggestion was coming from, but also understand the other side of it. Hopefully, we can agree to have our own individual opinions regarding this subject.

As far as comparing stages - although I'm Stage IV, which will limit my lifespan, I realize I have had it a lot easier than a lot of other stages which had to have more invasive surgery, which changed them in ways I cannot imagine. Cancer is cancer. The stage shouldn't be an issue.
Stage IV w/liver met dx 7-1-09
KRAS Mutant
Member of the HIPECKERS (2011) and OLYMPHIANS (2012)
2/14 - standard chemo has stopped working
3/14 - Stivarga
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raym
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Re: For GUESTS who don't have Colon Cancer...

Postby raym » Sun Dec 11, 2011 10:04 pm

I re-read the initial post. I got caught up in the later sentences and forgot about the opening (chemo brain). I agree with the guidelines for non-CR-cancer posters.
3/11 IIIC +/FOLFOX
4/12 HIPEC
6/12 Chmo/Rad
9/12 XELIRI+Avast/Zltra
9/13 Plvic Absc,stpd chemo
11/13 Tumr rmvd frm Lap Port incis
12/13 Xeloda
1/14 Cardiac Issue no Xeloda/5FU
3/14 Irinotecan
6/14 Stopped chemo
8/14 Clin Trial
9/14 Infectn - Stpd Trial


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