The Colon Club

Please post some inspirational stories!!! Can we beat this forever? When can you consider being cured? Just read stage 1 showed up on liver 10 years later? Is that unusual?

Though you may find statistical outliers, for colon cancer 5 years NED is generally considered "cured".
This may not be the same for rectal cancer, which I believe is statistically more likely to recur further down the track than colon cancer.

Stage 1 transitioning to Stage 4 10 years later is EXTREMELY rare.

Thank you. It made me feel really depressed and hopeless. THANK you:-)

Also didn't know about different prognoses between colon and rectal.

Andrea...I was initially diagnosed as a stage IIA, did a more unconventional approach to treatment (opted out of the LAR for an excision), did chemoradiation, more chemo and have been out of treatment now for almost 9 years. In June, it will be 10 years since my diagnosis.
Yes, it could come back OR I could get another primary....somewhere else in the colon or in my body. I can't worry about that and stress about it. IF I do, then I'm not living life....but rather wasting precious time worrying about something that I can't control.

Here's something else you need to understand. IF any stage has a recurrence after 10 years...that is extremely unusual AND, according to all of my doctors, it would lead to a better prognosis in the future. It would tend to be slow growing (seriously..ten years??), would have been caught early and would likely be more amenable to treatment. You can't live your life worrying every minute about something that might happen.

I seem to remember the 5 year recurrence rate for stage 1 is very low, like less than 5%. I can't remember the exact numbers but I'm not sure why you're worried about what is possible. It's possible you could die of a heart attack tomorrow. It's possible you could get hit by a bus. All kinds of terrible things are possible. The better question is: what is likely to happen?

For stage 1, you will most likely be cured.

Hi Andrea,
There are always exceptions to the rule but I agree recurrence of the same cancer after ten years is very unusual. I believe that you have been very fortunate , if there is ever anything fortunate about a cancer diagnoses, to be caught at an early stage. What you have to consider is that quite a few things have to go astray in your system for you to develop a cancer in the first case. Now that you know that you are in the zone you have to remain vigilant and you have to be your own advocate in treatment. I am a stage 3 c colon cancer survivor. It was very aggressive and in to six nodes. My surgeon did not expect me to survive. I had 48 sessions of chemo. My oncologist offered several times to cut it short because of how badly I handled it. I asked that he give me the full regime. He did . I am now out to 18+ years cancer free. I have had ten colonoscopies and a lot of scans. On average half of those scopes have seen polyps removed. I was told at seven years ,by my surgeon, that I was cured of that cancer but he warned me in the strongest terms to stay vigilant , have all of the advised tests and to become very self aware of my body and its functions and If I felt there was anything unusual see my doctor. If ever I did not feel satisfied with what my doctors told me then get a second opinion, You have my best wishes for a long and health life , Ron.

I'm coming up on 12 yrs since diagnoses. Been NED since my surgery in August of 2004. Per my Onc it's not coming back this far out. I need to worry more about getting a new cancer. Generally if something is going to show up, 80% will show up in the 2-3 yrs out from diagnoses. After that your chances of something showing up drops a lot. And yes, I too believe rectal cancer is one that can show up later.

Lee

Lee wrote:I'm coming up on 12 yrs since diagnoses. Been NED since my surgery in August of 2004. Per my Onc it's not coming back this far out. I need to worry more about getting a new cancer. Generally if something is going to show up, 80% will show up in the 2-3 yrs out from diagnoses. After that your chances of something showing up drops a lot. And yes, I too believe rectal cancer is one that can show up later.

Lee

Yeah 80% of recurrences happening by the 2 year mark is thrown around a lot. My surgeon said 2 - 2.5 years is the general range for most recurrences.

I remember reading that, according to the ACS, IF you are going to have a recurrence, there is a(n):

80% chance of it recurring in the first TWO years
10% chance of it recurring in year THREE
5% chance of it recurring in year FOUR
with the remaining 5% chance of it recurring after that.

I know it is easy for us to say not to worry but with cancer you can't help initially but to worry.

I'm still uncertain how you can even be a stage I when the cancer was confined ONLY to the head of the polyp and didn't reach the wall of the colon/rectum. Your signature indicates that the stalk was totally clear with a 2cm margin....certainly a good margin. Cancer is staged by the TNM designation with "T" being the depth that the cancer invaded your colon/rectal wall. If the cancer didn't reach the wall (how could it if the stalk of the polyp was totally clear of cancer??) then how can it be classified as a stage I...when a stage one has to have either a T1 or T2 as the depth measure?

Regardless, your cancer was detected at the earliest stage...the polyp was removed and you should consider yourself extremely fortunate. Try not to dwell on the 'what ifs'. Instead be acutely aware of your body...any different symptoms and be vigilant about being checked up on the schedule that your doctor recommends.

weisssoccermom wrote:I remember reading that, according to the ACS, IF you are going to have a recurrence, there is a(n):

80% chance of it recurring in the first TWO years
10% chance of it recurring in year THREE
5% chance of it recurring in year FOUR
with the remaining 5% chance of it recurring after that.

I know it is easy for us to say not to worry but with cancer you can't help initially but to worry.

I'm still uncertain how you can even be a stage I when the cancer was confined ONLY to the head of the polyp and didn't reach the wall of the colon/rectum. Your signature indicates that the stalk was totally clear with a 2cm margin....certainly a good margin. Cancer is staged by the TNM designation with "T" being the depth that the cancer invaded your colon/rectal wall. If the cancer didn't reach the wall (how could it if the stalk of the polyp was totally clear of cancer??) then how can it be classified as a stage I...when a stage one has to have either a T1 or T2 as the depth measure?

Regardless, your cancer was detected at the earliest stage...the polyp was removed and you should consider yourself extremely fortunate. Try not to dwell on the 'what ifs'. Instead be acutely aware of your body...any different symptoms and be vigilant about being checked up on the schedule that your doctor recommends.

I thought that at first also until I seen this.

https://www.researchgate.net/figure/239 ... ted-to-the
And here
http://training.seer.cancer.gov/colorec ... /keys.html

I still feel that because of the stalk being clear, LAR is overkill and not worth the risk, but again, that is just my opinion.

Thank you!!! I just want to hear positive notes!

Yes, malignant polyps are considered early invasive cancers. Technically because my cancer made it to submucusa - I am T1. But it's not connected to colon wall. If you have a really bad luck than even this type of cancer could became stage 4 but the chance is very low. But that's just cancer - you never know.

I just had dinner with a friend who is a 25 year Melanoma survivor and another had blood cancer few years ago. I think I just need to stop reading online and go on with my life. What happen will happen...

Just read your 2nd link.

In situ carcinomas may arise in either flat mucosa or in a polyp. If a tumor arises in a polyp, it is important to determine whether the stalk is invaded. If it is, the tumor is assigned to T1.

Well, my did not reach the stalk. 1 surgeon said I am not stage 1 but 2nd said I was... So with this link I am confused...

Andrea1976 wrote:Just read your 2nd link.

In situ carcinomas may arise in either flat mucosa or in a polyp. If a tumor arises in a polyp, it is important to determine whether the stalk is invaded. If it is, the tumor is assigned to T1.

Well, my did not reach the stalk. 1 surgeon said I am not stage 1 but 2nd said I was... So with this link I am confused...

Good question! But it did get to the submucosa high in the polyp, so? Hmm

Area A shows no invasion and is therefore in situ. Note that any invasion below the muscularis mucosae (Areas B and C) in a sessile lesion represents invasion into the submucosa of the bowel wall. In contrast, invasive carcinoma in a pedunculated adenoma (left) must traverse a considerable distance before it reaches the submucosa of the underlying bowel wall.

From that they mention the submucosa of the bowel wall, so, idk

Yes, it did in the head of the polyp. If it didn't - it would be in situ and stage 0.

A lot of the studies say that Pedunculate polyp with no stalk invasion is cured by just removal during colonoscopy. But I don't want to take chances... Because nobody really knows... But again it depends what risk I am willing to take. Most likely like 95% chance my lymph nodes are ok. But what about microscopic cancer that could be in the area - that's what the last colorectal surgeon said.

Hi Andrea..stage 1 for me too and I find NOW that the guilt is worse than the actual worry. I'm coming up on two yrs...I've been snooping around these pages almost just as long.

After reading so many stories of others who weren't fortunate enough to find their cancer early, I almost feel shame that I could ever comment "why me" etc. there was a time when I wondered if I would ever think about anything BUT cancer and I'm happy to say that there are now days I don't think about it....much. My best friend was diagnosed with ovarian a year before me and is fighting a wicked fight. Why so easy for me?? I would gladly take a little more if I knew she might have a little less.

Anyway, I think a cancer diagnosis-big or small-is life changing. I've done a lot of thinking/soul searching since- realizing that the only person you're guarenteed forever with is yourself...so you better be someone you can live with. I choose to not live with worry. (I'm sorry-so easy for me to say with my stage 1 diagnosis-I tread lightly for I understand the BATTLE some others face) I think worry gives issues we may have-life...which causes stress and stress causes illness and is probably one of the worse things you could put your body through. Overthinking...don't give it LIFE.

I read here and I'm sorry I don't know who wrote it but she said she wants cancer to give her more than it could ever take away. That has STUCK with me. I think of that phrase often. Since my diagnosis I am different. I am changed. I am better.

Wishing you all blessings and wellness.