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

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

Postby NWgirl » Mon Dec 12, 2011 10:52 pm

Oh KarMel, you read my mind. I do get annoyed at people asking for diagnostic opinions and interpretations on complex medical reports here. But I also wonder why in the world they think that a completely anonymous group of people they interact with on a public board like this should really be trusted - lol! What are they thinking???!!!!

I'm always happy to see that one or more registered users here will politely direct them to seek out a doctors opinion, push for a scope, a 2nd opinion, etc. I think the members here are great about responding appropriately. I always appreciate when members share their experiences, adding on the disclaimer about everyone being different. I REALLY appreciate those members here who really do have a tremendous amount of knowledge about this disease, treatment options, etc. and who are gracious enough to share that with the rest of us. And I REALLY, REALLY appreciate the love, support and understanding I find here.

I do get where you're coming from. We know people here who have suffered SO MUCH, and to have some suspect hypochondriac come on here automatically assuming they have cancer can really rub you the wrong way. When I get those feelings of anger and resentment I just move on to the next post - I don't reply. Remember when our parents used to say "if you can't say something nice, don't say anything at all".

I think too many sticky's tend to gloss over most people's minds. So annoying as those posts may be to me at times, I figure it takes all kinds. I'm not meant to respond to each and every post. Some I read, some I ignore and some I read and then ignore! I've also seen posts by these "suspect hypochondriac's" as I call them, post at a later date with their results (which are usually good) and thank the folks here for their support.

I guess all I'm saying is I completely understand how you feel KarMel, but I don't know that it's that big of a deal to make a big deal out of it. *hugs* to you - Jess's death has hit us all very hard. I don't think any of us here with children and/or grandchildren won't be thinking of Jess and her family this Christmas morning.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
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VATS Jan 2011
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Lois7718
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Re: For GUESTS who don't have Colon Cancer...

Postby Lois7718 » Mon Dec 12, 2011 10:55 pm

If you take a quick look at Molly's welcome post, you will find the intent of the board is to feel free to share experiences and ask questions with a simple request to be courteous to those who may be just beginning their journey.

That said the inclusion of a general disclaimer that this board is not a substitute or replacement for medical advice from your doctor is probably approriate (most TV commercials with a more controlled message come standard with that these days.)

Even with that disclaimer please don't expect that a guest will see that message. I can't tell you how many time a search for a topic has landed me in the middle of a discussion thread for one board or another with no real context.

What makes this board work IMHO is that those who are willing and able post and those who can't don't. Sometimes I suspect all that guest needs is reassurance that their concerns are valid and that they should consult their doctor or request a second opinion as the case warrants. In the end we all just want some validation.
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sweeny
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Re: For GUESTS who don't have Colon Cancer...

Postby sweeny » Tue Dec 13, 2011 5:52 pm

This is clearly quite an emotive subject. IMO a sticky that we could refer anxious posters to, would be useful - but I would be saddened if posts from worried individuals were pre-screened or discouraged. As has previously been mentioned, even if we just help one individual force the issue of a colonoscopy with a dismissive doctor, and an early diagnosis is made possible, then it would be a great thing. I would also agree with a previous poster that in the whole scheme of things, this board actually does not seem to attract too many of the posts some people are worried about.

And as for any discrimination between those of different stage of disease, I have certainly not experienced this. This is indeed the club that nobody wants to join, and we're all in this together.
Diganosed Nov 2010, Aged 35 / Male
T3N0M0 CC
colon resection
12 rounds of FOLFOX - finished May 2011.

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Bill5107
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Re: For GUESTS who don't have Colon Cancer...

Postby Bill5107 » Tue Dec 13, 2011 10:50 pm

Eh, let's face it, a generic post in a sticky topic is really easy for someone to do, and those old timers here who know how to find it, can feel free to use it if it's appropriate to a particular case or even copy-paste the content as a fresh reply....the newbie might get the nudge he needs and the veteran who might otherwise spend too much energy writting the reply can crank it out and satisfy his/her need to repy to all newbie posts. . . and presumabley the newbie gets the appropriate feedback from this club.

I'm really not sure what we are debating anymore. . . there are words we can use in this thread already. Seems to be it's time to move on. I don't see any request for any change to the forum that requires admin or moderator access (except perhaps to stiky a post or add a post to a lockes sticky thread)
2010-07-02 Dx rectal cancer (Stage 3)
'-07-21 Chemoradiation
'-10-13 APR surgery, 10/18 nodes still active
'-11-22 12x2wk rnds FOLFOX
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Re: For GUESTS who don't have Colon Cancer...

Postby rsb » Tue Dec 13, 2011 11:34 pm

Let's get real here. Anyone frightened of a(possible) diagnosis is freaking out and needs medical advice. Why would anyone experiencing abnormal bodily functions ignore obvious (or not-so-obvious) warning signs? If something doesn't seem right with your body, have it checked out. Common sense should tell you that when you've live 20-60 years without ever bleeding out of your ass, there might be a problem if we have a stream coming out. Why do we need someone on a web-site to tell us to have it checked out?!! This is a SUPPORT forum, not a diagnostic one. My vote is to have a rote reply for all general inquiries: "Please seek medical advice", and do not personalize a reply until they have a specific post related to the forum.
Wife of 46 yr old Robert, T3N1M0
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Bill5107
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Re: For GUESTS who don't have Colon Cancer...

Postby Bill5107 » Tue Dec 13, 2011 11:41 pm

rsb wrote:Let's get real here. Anyone frightened of a(possible) diagnosis is freaking out and needs medical advice. Why would anyone experiencing abnormal bodily functions ignore obvious (or not-so-obvious) warning signs? If something doesn't seem right with your body, have it checked out. Common sense should tell you that when you've live 20-60 years without ever bleeding out of your ass, there might be a problem if we have a stream coming out. Why do we need someone on a web-site to tell us to have it checked out?!! This is a SUPPORT forum, not a diagnostic one. My vote is to have a rote reply for all general inquiries: "Please seek medical advice", and do not personalize a reply until they have a specific post related to the forum.


RSB, folks do, that is the point. So what to do when they land here. I think we have plenty of options. I haven't heard that anyonw put a post in a sticky area to help some of us quickly reply without investing too much energy, which seems to be the initial complaint here. Folks are folks...and some are reallly bizarre...we as a community probalby would prefer to give appropriate help to all, and that's what I think the purpose of the discussion is. (even if to only point ot a generic answer, though i expect someone will always pipe in with a personal reply . . )
2010-07-02 Dx rectal cancer (Stage 3)
'-07-21 Chemoradiation
'-10-13 APR surgery, 10/18 nodes still active
'-11-22 12x2wk rnds FOLFOX
2011-12-07 Mets X-P
Don't retreat, reload!

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

Postby alphagam » Wed Dec 14, 2011 10:13 am

I am a registered user, I think I have 2 posts. The main reason for that is that there was a big "stageism" post about the time I registered. I found this board when during a routine screening colonoscopy in January, I was told I had a 5-6 cm polypoid mass in my rectum. I was sent to a surgeon (general) who refused my case. I then found a Colo-Rectal surgeon who wanted to take out the tumor to check the pathology. The GI who did the original colonoscopy was horrified as he thought I should immediately go to chemo/rad, rest, APR and then permanent colostomy and discharged me as a patient. The onc wanted pathology, so a transanal excision was the next step. When the CR surgeon "got in there", the tumor was contained in the lining of the rectum. I was staged at stage 0, no further treatment necessary. The exact pathology was high dysplasia with "cancer in situ". NO invasive cancer. I suddenly knew that I would not be welcome on this board. I have my next colonoscopy in March and of course things could change, but until I'm a Stage 3 or 4, I don't feel welcome to post.

I've read this board since at least February 2011. I know your stories. I cried when Jess and Patrick died, but I guess I'm not "involved" enough to care or ask questions.

That's actually fine. I belong to boards where the membership is exclusive. Just stop asking that those of us don't have Stage 3 or 4 to quit caring.

Kathy, Rockwall, TX
Dx Feb 2010 4 cm tumor, just inside rectum
EUS stated T3 tumor
2nd opinion, need better path
Mar 2010 transanal surgery. Surgery by board certified CRS found tumor only in lining
6 exams of surg site, 3 PET, 3 scopes laterNED.
Scope in Mar2015, clean colon
Next scope/test in 3 years

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

Postby CRguy » Wed Dec 14, 2011 12:47 pm

I don't specifically recall the post threads you might refer to, but "stageism" is a non-issue....we have folks here who are not patients..i.e. NO stage ! and they are welcome as important members of this forum ... So are you.

The choice to post or not is yours alone. If some posts ( or PMs ) bug you then don't reply, or if they are truly offensive or threatening,report them to a moderator. Strongly opinionated posters do NOT determine the forum's policy. I think you will find that is well set out in Molly's "Welcome" Announcement . If you have been reading since Feb 2011, then you know there are lots of folks here with whom you will be able to have a discussion, and some you may not... just like other forums, and as I have found, just like real life.

This thread is about seeking unauthorized medical advice online. You sought medical advice and have since gotten a good diagnosis and are being followed up. I don't see anything wrong with that ????

The choice to post is yours alone. Hopefully you will decide to continue to contribute to the forum.

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

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

Postby Ashlee H. » Wed Dec 14, 2011 12:57 pm

Kathy, - I'm not sure why you did not feel like you would not be welcomed here. I don't know the thread you are talking about. I'm happy that you were staged 0 - that is awesome! But you had CR surgery, you had a colonoscopy. You had a tumor. The discussion in this thread is regarding those posters who haven't yet taken steps to see what is causing their bleeding or bathroom issues. They come here wondering if we can tell them they have cancer. All we can suggest is they go to their doctor and get a colonoscopy. We've had numerous threads here about different drinks for colonoscopies, waking up during the procedure, etc. You feel what you feel but it sounds like any questions you had would have been relevant to this board and members would have had no issue with answering your questions. In fact, your story is a reason people should see their doctor and get scoped. So, by all means, if you would like to respond to new posters asking if they might have cancer and wonder what they should do - have at it. I think in this thread we are just trying to find a way to get these people the information they need.
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KimT
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Re: For GUESTS who don't have Colon Cancer...

Postby KimT » Wed Dec 14, 2011 2:04 pm

CRguy wrote:I don't specifically recall the post threads you might refer to, but "stageism" is a non-issue....we have folks here who are not patients..i.e. NO stage ! and they are welcome as important members of this forum ... So are you.

The choice to post or not is yours alone. If some posts ( or PMs ) bug you then don't reply, or if they are truly offensive or threatening,report them to a moderator. Strongly opinionated posters do NOT determine the forum's policy. I think you will find that is well set out in Molly's "Welcome" Announcement . If you have been reading since Feb 2011, then you know there are lots of folks here with whom you will be able to have a discussion, and some you may not... just like other forums, and as I have found, just like real life.

This thread is about seeking unauthorized medical advice online. You sought medical advice and have since gotten a good diagnosis and are being followed up. I don't see anything wrong with that ????

The choice to post is yours alone. Hopefully you will decide to continue to contribute to the forum.

Cheers
CRguy


I'm going to blow this wide open as I've gotten pms from people who agreed with me and were glad I said what I did. And for others who have posted in this thread. There IS a problem with stageism on this board. Just because you haven't experienced it, doesn't mean it doesn't happen. I brought it up because it contributes to an overall feeling of unwelcomness on this board as does this post complaining about symptom seekers when it only happens once or twice a month. There are two boards here. It is much like high school. There are the cool kids and then there are the rest of us. I'm sick or pretending it's not happening. This board has a problem and it is much bigger than one or two people having the dedication to get past the approved post rules to ask about symptoms. There is a problem of exclusion on this board. I resent how it has been glossed over in this thread. You are a moderater. You don't get to pick sides. You should be supporting what is best for the whole board, not just what the squeaky wheels want. There was a huge hurtful post about stageism about feb of this year. it followed the post bashing christians. It makes alot of us feel not welcome here and yet it is allowed to continue. People are openly bullied.

I'm not going to be quiet about it anymore. I am demanding that those of us who are saying there is an attitude of exclusion on this board be heard. We deserve to be heard just as much as the squeaky wheels. I guess in not sticking up for ourselves, we have allowed this to continue. Not anymore. Not from me. There are alot of great people on this board which is why I stay. But there is a group of folks acting like high schoolers and attempting to make this board more exclusive and trying to keep people away.
Last edited by KimT on Wed Dec 14, 2011 5:09 pm, edited 1 time in total.
2/10 dx colon cancer
right hemicolectomy 3/19/10
Stage 2a 0/43 nodes
Lynch syndrome
3/14/10 colon resection/ removal of metal clips
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Ashlee H.
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Re: For GUESTS who don't have Colon Cancer...

Postby Ashlee H. » Wed Dec 14, 2011 2:27 pm

In the time I've been coming to Colon Club, there have been some nasty postings that have gotten out of hand, and it has been dealt with by the moderators. Dealing with cancer, our emotions tend to be all over the place. Someone may use a word that just hits us wrong that day and we send off a posting without really thinking about it. There are always a few who post that seem to just want to get an argument going - but if no one takes the bait, then that thread just dies. I really wish you would find this February thread so we can see what took place that made you and others feel as you do. I'm know I've been guilty about having my bad postings...and it has generally been over assumptions...and you know what they say about "assume". Perhaps if this discussion is to be continued it should be on another thread with another heading. I think we have pretty much covered what this initial thread was intended to do. I've never been one of the cool kids, and it took me quite sometime to get to know the personalities on this site. There are those who knowledge I value, and then there are others I don't think they know what they are talking about - again, assuming things that aren't based in reality. Just like in real life, you have to weed through the complexities of people. I learned a long time ago, everyone will not like me, and some people I rub the wrong way and really don't know why.
What you call stageism may mean something totally different to me. Sometimes it's tough to have someone with Stage 1 talk about their panic attacks when they have been cancer free for years. I was DX as Stage IV and cannot be cured. If anything, it saddens me that someone who is cured cannot enjoy the life they have instead of continuing to have cancer rule their life. But, does that mean they shouldn't be welcomed here - absolutely not. We just see the gift of life differently.
Stage IV w/liver met dx 7-1-09
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pmterra
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Re: For GUESTS who don't have Colon Cancer...

Postby pmterra » Wed Dec 14, 2011 3:35 pm

Okay I'm going to go out on a limb here. I joined this forum this past July. I found it because I was on another site and someone suggested it b/c it had to do with CRC exclusively. I lurked for a little while and read some posts about survival of Stage 3C colon cancer and found a lot of information I wish I would have had a couple years before and I thought people seemed very willing to help each other and cared about each other.
I guess I responded to a couple of posts and never really introduced myself or my situation. I have had the feeling many times of not belonging here although I know there are many many caregivers who are here supporting each other. I started to wonder why I was feeling this way...was I too preachy, intrusive? Did I just jump in and act like I belonged here without a "formal" introduction? I don't know. It seemed like people were not responding to me or even acknowledging if I posted. I have to say though that there have been a few exceptions and I guess those people are why I'm still here. I've thought many times about walking away and just pretending I wasn't aware of the forum and thought maybe I shouldn't be on here. I'm just a caregiver, I'm not going thru the horrors of others who this disease has touched. Then I thought I would just respond and post to caregiver topics or people that were new and scared (especially if they were the caregiver). But if I'm being honest, I have to agree that I have had the same feeling that alphagam and Kim T. mentioned. Then I thought, Shit! these people are fighting for their lives and going thru things that I never dreamed possible why should they have to worry about if they're making me feel welcome. So I thought it was just me and my insecurities but I can see that others have had the same thoughts. Is there a problem? Maybe so but I really don't want to get in a brawl about it. I don't know if this needs to keep going, I think someone mentioned under a different topic heading.
Anyways, this is way off topic from what was originally posted. I have decided to stay and try and help in anyway that I can because I know that's what I would have appreciated when we first heard those three words ... you have cancer. I hope I haven't offended anyone and if I did, it was not intentional. I just need to communicate with people who know what I'm going thru even 3 and a half years post diagnosis. When I look in the eyes of my friends and family I see that they really do think this is over for Andy and I and somewhere down in my heart, I know it will never be over. And I know all of you know exactly how I feel. I wish you all peace and happiness and good health.

~Paula
caregiver to survivor husband
Stage 3C - Colon
surgery June, 2008
6 mo. chemo/FOLFOX & Avastin
June 2015 - 7 year survivor :)

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

Postby Patience » Wed Dec 14, 2011 4:19 pm

I will try to word this posting to be as non-offensive as possible, but I'm not sure I'm up to that much editing. :cry:

I am new to this site. I was hopeful of finding suggestions, support, and mutual respect for what each of us bring to table ... or rather, to the forum. I am disheartened by this thread. My impression is that there is a sort of "you are not as bad off as me" attitude, illustrated in this thread by some, that dissuades open discussion and input by each and all who come to the site in hopes of finding resources for their particular situation.

I've seen a posting that might be one of the "offenders" that this thread refers to .... if I recall, he was a 17 year old who was seeking advice (could I have cancer - should I see a doctor?). I'd like to point out, when you are evaluating posts such as his - someone who grew up in the internet age, it is perfectly normal and to be expected that he'd turn to an internet site for advice. Most likely he grew up using computers, using the internet at home and in school, and using online social media. So don't be surprised when teens and young adults appear here asking questions of all sorts. (The fact more teens/young adults don't show up here is because colon cancer is not that common in younger folks.) I find it sad that rather than people just be accepting of questions from worried folks, there is instead a berating of them "bothering" the "sick people" here.

I'm not ready to give up on this site yet, I'm still hopeful of finding suggestions & support ... but perhaps I will also find that all are not welcome to venture here. I hope that is not the case. I hope this thread is a fluke, not representative of the forum.
"Sweet dreams till sunbeams find you.
Sweet dreams that leave all worries behind you."

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

Postby Gaelen » Wed Dec 14, 2011 4:22 pm

KimT wrote:I'm going to blow this wide open as I've gotten pms from people who agreed with me and were glad I said what I did. And for others who have posted in this thread. There IS a problem with stageism on this board. Just because you haven't experienced it, doesn't mean it doesn't happen.


Actually, I have to agree with KimT - her entire statement. "Stageism" has come up on and been an undercurrent on this board (and on some others) pretty much ever since I've been reading it since about 2006 or 2007. It ranges from as subtle as someone like Bradyr wanting to people to temper their replies based on the poster's stage to as overt as late stage patients openly admitting that they didn't understand or had a hard time with long-term early stage survivors continuing to bemoan that they'd had cancer decades after their treatment. And just like cancer - ignoring stageism or saying it doesn't exist because you haven't personally seen/read it doesn't make it go away.

This isn't the only forum where stageism happens. And frankly, sometimes it slips into a post without an actual intent.

I didn't go all the way back to February - but this thread from June of this year is a pretty good example of stageist conversations that we've had here from time to time - warning! don't read the thread if you're feeling fragile about being here with a stage 0-1 diagnosis! That doesn't mean the posters opinions aren't honest, but at some point in the thread I'm pretty sure a couple stage I and stage II posters noted how uncomfortable the "rant" was making them. And to their credit, some of the stage IV posters also noted that they weren't always proud of the their feelings when stageism crept in...but at least those posters had the stones to admit it happens, and try to figure out how to deal with it.

I do think stage-ism is a topic for a different thread, though - this one is having enough trouble figuring out how to effectively help and address people's questions without offering medical advice.
Be in harmony with your expectations. - Life Out Loud
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
4/12 stopped treatment

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

Postby KimT » Wed Dec 14, 2011 4:46 pm

Gaelen wrote:
KimT wrote:I'm going to blow this wide open as I've gotten pms from people who agreed with me and were glad I said what I did. And for others who have posted in this thread. There IS a problem with stageism on this board. Just because you haven't experienced it, doesn't mean it doesn't happen.


Actually, I have to agree with KimT - her entire statement. "Stageism" has come up on and been an undercurrent on this board (and on some others) pretty much ever since I've been reading it since about 2006 or 2007. It ranges from as subtle as someone like Bradyr wanting to people to temper their replies based on the poster's stage to as overt as late stage patients openly admitting that they didn't understand or had a hard time with long-term early stage survivors continuing to bemoan that they'd had cancer decades after their treatment. And just like cancer - ignoring stageism or saying it doesn't exist because you haven't personally seen/read it doesn't make it go away.

This isn't the only forum where stageism happens. And frankly, sometimes it slips into a post without an actual intent.

I didn't go all the way back to February - but this thread from June of this year is a pretty good example of stageist conversations that we've had here from time to time - warning! don't read the thread if you're feeling fragile about being here with a stage 0-1 diagnosis! That doesn't mean the posters opinions aren't honest, but at some point in the thread I'm pretty sure a couple stage I and stage II posters noted how uncomfortable the "rant" was making them. And to their credit, some of the stage IV posters also noted that they weren't always proud of the their feelings when stageism crept in...but at least those posters had the stones to admit it happens, and try to figure out how to deal with it.

I do think stage-ism is a topic for a different thread, though - this one is having enough trouble figuring out how to effectively help and address people's questions without offering medical advice.


Well knock me over with a feather! :shock: When I saw you posted, i was almost afraid to look. You agreed with me :shock: I was totally expecting a bit of a tongue lashing. You are a straight talker and I've been around long enough to know I don't want to start a pissing match with you. And here I post something somewhat provacative and you agreed with me. I might be a little disapointed actually :lol:

In all fairness, I should have left it for another thread. I did sort of hijack it and it wasn't my intent. I just wanted to point out that this board can be difficult for alot of us and not welcoming. I don't want to do an auto reply to guests asking questions when it happens so infrequently. I've had my feelings hurt on here and I'd like to this board become more welcoming, not less so. And to see concerns posted by myself and others completely blown off really upset me.

I will shut up about stagism in this thread and keep to the topic at hand. My apoligies for the hijack.
2/10 dx colon cancer
right hemicolectomy 3/19/10
Stage 2a 0/43 nodes
Lynch syndrome
3/14/10 colon resection/ removal of metal clips
Nov 11 dx ovarian cancer


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