Recently diagnosed

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Peter_S
Peter_S Member Posts: 109

Hi folks,

 

I'm Peter and I've been recently diagnosed with colon cancer. I'm still waiting for the pathology results from the lab to find out what stage.

The Doc who did my colonoscopy told me that there was a growth too large to remove and he was confident it was cancer. A well informed hunch that he confirmed  by telephone after getting the results from an initial lab report, I still don't know the stage. I do know having this growth removed via a Colectomy is probably going to be the first line of attack .

 I wasn't especially impressed with the surgeon he reccomended and did some digging on my own and found someone I'm both impressed with and feel confident about. We'll meet (I hope) after he gets the results from my upcoming CT scan. 

 So that's about it, I just wanted to say hello, hopefully get some much needed support and be able to give some back in return 

 Peter   

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Comments

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
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    Welcome Peter! My heart sinks

    Welcome Peter! My heart sinks a bit every time someone new jumps on board. It would be wonderful if there was no need for this board anymore.

    I don't they stage it until surgery. Because the difference between stage two and three is if any lymph nodes were involved. I'm not sure what constitutes a stage one, now that I think about it. Maybe the lab can differentiate between the two. 

    You've come to the right place. I wish I'd found this forum sooner than I did. The support and understanding are a huge help towards feeling more positive and in control. 

    Jan

  • Trubrit
    Trubrit Member Posts: 5,800 Member
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    Hello Peter

    and welcome to the forum.   Yeah, its not a forum people are rushing to join, thats for sure. 

    I'm glad that you searcehd around to find a surgeon you were happy with. I hope that he does a great job, and gets rid of all the nasties, so that you can heal and move forward. 

    Forward will probably mean chemo and maybe radiation, but hey, one step at a time. Lets get you through the surgery. 

    While you are waiting, be sure and eat nice healthy foods and drink lots of water.  Go into the surgery as healthy as possible.  

    After surgery, get out of bed and walk, walk, walk as soon and as much as you are able. It hurts to get out of bed, but once up and moving, it will feel good, and it will get that bowel working, which is what you want after they've been in there chopping around. 

    We are all here to help you along the way.  Sooner than you know it, you'll be the one giving advice and sharing expereinces. 

    Good luck in the coming days. Keep us informed. 

    Tru

  • Peter_S
    Peter_S Member Posts: 109
    edited October 2018 #4
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    JanJan63 said:

    Welcome Peter! My heart sinks

    Welcome Peter! My heart sinks a bit every time someone new jumps on board. It would be wonderful if there was no need for this board anymore.

    I don't they stage it until surgery. Because the difference between stage two and three is if any lymph nodes were involved. I'm not sure what constitutes a stage one, now that I think about it. Maybe the lab can differentiate between the two. 

    You've come to the right place. I wish I'd found this forum sooner than I did. The support and understanding are a huge help towards feeling more positive and in control. 

    Jan

    Hi Jan and Horses

    Thank you for the kind welcome and your horse is gorgeous as are the ones in the back it's a great to see all of you. The handsome guy in my picture is Harley he's an old english bulldog and my heart in every way. He's 14 and doing pretty well considering his age. I'm not certain about the stage process either I do know I have a number to call in ten days, well 5-6 now and get the report so I'm sweating out the wait.

    Then during the surgery they remove a dozen lymphnodes and check them with the results determining the stage again and I guess how agressive the proceedure becomes at that point, it's all so new and it's all so scary. I'm a type 2 uncontrolled diabetic so this just complicates matters and I know will slow down my healing. I've been watching alot of videos on youtube which always either break my heart or freak me out.

    I know isolating myself is the wrong thing to do so I'm incredibly happy that this place exists and like you said it'll be a wonderful day when the forum isn't needed. Hope you're doing well too and thanks again for the warm welcome :)

  • Peter_S
    Peter_S Member Posts: 109
    edited October 2018 #5
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    Trubrit said:

    Hello Peter

    and welcome to the forum.   Yeah, its not a forum people are rushing to join, thats for sure. 

    I'm glad that you searcehd around to find a surgeon you were happy with. I hope that he does a great job, and gets rid of all the nasties, so that you can heal and move forward. 

    Forward will probably mean chemo and maybe radiation, but hey, one step at a time. Lets get you through the surgery. 

    While you are waiting, be sure and eat nice healthy foods and drink lots of water.  Go into the surgery as healthy as possible.  

    After surgery, get out of bed and walk, walk, walk as soon and as much as you are able. It hurts to get out of bed, but once up and moving, it will feel good, and it will get that bowel working, which is what you want after they've been in there chopping around. 

    We are all here to help you along the way.  Sooner than you know it, you'll be the one giving advice and sharing expereinces. 

    Good luck in the coming days. Keep us informed. 

    Tru

    Thank's Tru

    I appreciate the wise words, I've got some pre-existing health issues (who doesn't) that hinder my walking but I'll get through whatever I have to. I love to cook so there will be a sharper focus on healthier grub around here that's for certain as for hydration I need to ditch the diet cokes (a guilty pleasure) and amp up the water. Thanks for the support and for reaching out to say hello, it means a lot as I'm still shell shocked although that sounds odd because I expected something was wrong and have for a long while.

    My CT scan is this Tuesday 10/16 and I'll post the results here on the forum. I hope you're doing well and that's again for the nice welcome :)

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
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    Welcome

    So sorry to hear of your recent diagnosis.  Thank you for sharing your story with us so far.  You will find this group of people the most amazing people that is not only caring, but will help you through the path and journey you will be taking.  Don't ever hesitate to ask any questions that you have as most subjects, trust me, have been discussed here.  Please don't check the internet for information.  It is very outdated and not reliable.  Good luck on your CT scan and let us know how you are doing.  Once again, welcome.

    Kim

  • beaumontdave
    beaumontdave Member Posts: 1,280 Member
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    Welcome Peter, initial

    Welcome Peter, initial diagnosis is a scary time, but once a plan's in place, it does help settle expectations and a sense of what's going on. Waiting on information always sucks, but it sounds like you have a level-headed approach to what is a stressful path. That's a great looking old boy there, and an interesting coincidence as my Harley is a ten year-old English bulldog, mostly blind but still loving life, naps, snacks, and belly rubs. I may take a pic to stick on here, he's brindle with nice coloration, and that built-in happy mug. Best of luck on the results and choices your given, we wait to hear the news.......................................................Dave

  • plsletitrain
    plsletitrain Member Posts: 252 Member
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    Hello Peter

    You'll find that everything will be so overwhelming, from initial diagnosis, to the surgery, to the treatments, etc.  Take it one day at a time.  And its good that you have a course of action and a plan in place.  Prepare yourself physically and mentally for the surgery first and think about the rest later.  We're here for you.  

  • sylvia_mae
    sylvia_mae Member Posts: 37
    edited October 2018 #9
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    hi i am just new here. i read

    hi i am just new here. i read several posts and i wanted to open up. i was diagnose stage IIIC  colon cancer last 2016. i did not get any medication (chemo or radiation) because i was scared. having cancer was literally a shocking news, at the age of 31 diagnose such disease is a bit unsual as what my onco says. but i keep having my check-ups (quarterly) cea is on a low level from 0.5, 0.7 to 0.9 den it increases up to 4. after an increasing cea, my doc. conducted another set of colonoscopy and ctscan wherein they found out a new mass in between my ovary and doughlas pouch. my doctor thought it metastasize luckily as i may call it because i did not went thru another surgery my doc. requested to take oral chemo (capecitabine) 4 cycles. afterwhich, another set of ctscan and colonoscopy was being made. from 2mm it lowers to 1cm and i was advise to have chemoradiation. it was 4 weeks radiation and another set of 6 cycles of capecitabine. 

    as of today i had my check-up colonoscopy and endoscopy are clear. the ctscan can't show the mass/tumor because there is interval thickening in the wall of my rectum maybe due to post radiation changes. currently i am experiencing bowel movement atleast 4 times (i don't know if it was the side effect because my colon is being cleaned up or because of the medication im taking to heal erosive gastritis found during my endoscopy.

    can i ask about your opinion about my current situation. can a stage 3 colon cancer like survive or am i going to die? im still having this fear every time i felt something in my body. im super scared and i dont know what to do. 

    by the way my cea from my third cycle was 2.93 and currently my cea is 5 and this really scares me why my cea keeps on increasing or is it because of the post chemoradation side effect? i have proctitis because of the radiation.

  • ron50
    ron50 Member Posts: 1,723 Member
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    Hi Peter and Sylvia

          Welcome to the board. Sorry you both have to be here but there is a wealth of knowledge and support here. I'm a stage 3c survivor. What I did and what was done to me has little bearing on what happens nowdays . Iam a bit of a relic of the cancer wars. The main thing that i can give you is hope of survival. This coming Jan I will be up to 21 years post cancer. It has not been easy and it has not been without drama but I have had no recurrence of my cancer in over 20 years. Wishing you both the same good fortune. Ron.

  • sylvia_mae
    sylvia_mae Member Posts: 37
    edited October 2018 #11
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    Hi ron thank u so much. It is

    Hi ron thank u so much. It is a great relief reading your post. I'm really scared. I kept mum about what I feel to my family because i dont want to burden them specially my mother. Everytime i have my doctors appointment anxiety, fear and panic attacks are eating the entire me. I am still hoping that by this January another good news from my cea. But still doubting though because of the increasing cea though as per my onco still in the normal level. May know about your cea levels ron? Do they vary from time to time?

  • Trubrit
    Trubrit Member Posts: 5,800 Member
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    hi i am just new here. i read

    hi i am just new here. i read several posts and i wanted to open up. i was diagnose stage IIIC  colon cancer last 2016. i did not get any medication (chemo or radiation) because i was scared. having cancer was literally a shocking news, at the age of 31 diagnose such disease is a bit unsual as what my onco says. but i keep having my check-ups (quarterly) cea is on a low level from 0.5, 0.7 to 0.9 den it increases up to 4. after an increasing cea, my doc. conducted another set of colonoscopy and ctscan wherein they found out a new mass in between my ovary and doughlas pouch. my doctor thought it metastasize luckily as i may call it because i did not went thru another surgery my doc. requested to take oral chemo (capecitabine) 4 cycles. afterwhich, another set of ctscan and colonoscopy was being made. from 2mm it lowers to 1cm and i was advise to have chemoradiation. it was 4 weeks radiation and another set of 6 cycles of capecitabine. 

    as of today i had my check-up colonoscopy and endoscopy are clear. the ctscan can't show the mass/tumor because there is interval thickening in the wall of my rectum maybe due to post radiation changes. currently i am experiencing bowel movement atleast 4 times (i don't know if it was the side effect because my colon is being cleaned up or because of the medication im taking to heal erosive gastritis found during my endoscopy.

    can i ask about your opinion about my current situation. can a stage 3 colon cancer like survive or am i going to die? im still having this fear every time i felt something in my body. im super scared and i dont know what to do. 

    by the way my cea from my third cycle was 2.93 and currently my cea is 5 and this really scares me why my cea keeps on increasing or is it because of the post chemoradation side effect? i have proctitis because of the radiation.

    Welmone to the forum, Sylvia_mae

    Can I suggest you open a thread on the forum home page   -  Cliick on this link https://csn.cancer.org/forum/128   -  and that way we can answer your post without running up Peter's thread. 

    The fear is terrible, and I am so glad that you found this forum.  You will find many here who are surviving Cancer at many stages, even stage IV. 

    I look forward to seeing your post on the forum home page. If you have trouble posting, just let us know, and we can help you. 

    Tru

  • Peter_S
    Peter_S Member Posts: 109
    edited October 2018 #13
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    Welcome

    So sorry to hear of your recent diagnosis.  Thank you for sharing your story with us so far.  You will find this group of people the most amazing people that is not only caring, but will help you through the path and journey you will be taking.  Don't ever hesitate to ask any questions that you have as most subjects, trust me, have been discussed here.  Please don't check the internet for information.  It is very outdated and not reliable.  Good luck on your CT scan and let us know how you are doing.  Once again, welcome.

    Kim

    Thank you kim

    Please know your warm welcome and promise of support means a lot. One the web I've kept it to mostly watching peoples vlogs about their journey with colorectal cancer and avoid the obvious snake oil cures and other such nonsense. What I like about this site is that I can meet real folks like yourself who are straight shooters and help me to realize that there is no shame in asking for help - and I'll be asking for plenty of it so thanks again and excuse my spelling - Peter

  • Peter_S
    Peter_S Member Posts: 109
    edited October 2018 #14
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    Welcome Peter, initial

    Welcome Peter, initial diagnosis is a scary time, but once a plan's in place, it does help settle expectations and a sense of what's going on. Waiting on information always sucks, but it sounds like you have a level-headed approach to what is a stressful path. That's a great looking old boy there, and an interesting coincidence as my Harley is a ten year-old English bulldog, mostly blind but still loving life, naps, snacks, and belly rubs. I may take a pic to stick on here, he's brindle with nice coloration, and that built-in happy mug. Best of luck on the results and choices your given, we wait to hear the news.......................................................Dave

    Thanks To a Fellow Bullie Lover

    I apppreciate your kind words and think it's awesome that you have an old english also named Harley. It's so true what you said about those baby faces my Harley is deaf and also has poor eye sight but you know, every day I see glimpses of the puppy and young boy he was and what can I say that you don't already know, they're an amazing breed, they're angels in dog suits. I like your tats and have one of Harley which was a seven hour sit but worth it if I can figure out where to upload it I'll post it. We also have another old bully named Elvis and in fact we were looking for another pup but this pesky cancer has put everything on hold.

    Anyway, thank you again and I hope your doing well and the worst of it is long behind you - Peter

  • Peter_S
    Peter_S Member Posts: 109
    edited October 2018 #15
    Options

    hi i am just new here. i read

    hi i am just new here. i read several posts and i wanted to open up. i was diagnose stage IIIC  colon cancer last 2016. i did not get any medication (chemo or radiation) because i was scared. having cancer was literally a shocking news, at the age of 31 diagnose such disease is a bit unsual as what my onco says. but i keep having my check-ups (quarterly) cea is on a low level from 0.5, 0.7 to 0.9 den it increases up to 4. after an increasing cea, my doc. conducted another set of colonoscopy and ctscan wherein they found out a new mass in between my ovary and doughlas pouch. my doctor thought it metastasize luckily as i may call it because i did not went thru another surgery my doc. requested to take oral chemo (capecitabine) 4 cycles. afterwhich, another set of ctscan and colonoscopy was being made. from 2mm it lowers to 1cm and i was advise to have chemoradiation. it was 4 weeks radiation and another set of 6 cycles of capecitabine. 

    as of today i had my check-up colonoscopy and endoscopy are clear. the ctscan can't show the mass/tumor because there is interval thickening in the wall of my rectum maybe due to post radiation changes. currently i am experiencing bowel movement atleast 4 times (i don't know if it was the side effect because my colon is being cleaned up or because of the medication im taking to heal erosive gastritis found during my endoscopy.

    can i ask about your opinion about my current situation. can a stage 3 colon cancer like survive or am i going to die? im still having this fear every time i felt something in my body. im super scared and i dont know what to do. 

    by the way my cea from my third cycle was 2.93 and currently my cea is 5 and this really scares me why my cea keeps on increasing or is it because of the post chemoradation side effect? i have proctitis because of the radiation.

    Hi Sylvia_Mae

    You have a really great name it reminds me of old Hollywood, classy and classic. I think I'm the last person here to give advice to anyone because today makes one week since my own diagnosis. But I will say congrats on a clear result from both scopes I think thats fantastic. That you're having bowel movements is a positive as well. It sounds cliche' and maybe it is - but none of us have an experation date and there seems to be no shortage of people with stage 3 and 4 living and living well.

    It's like that old saying "it's not the years of your life that count, it's the life in your years"  So I wish you the very best and look foreward to reading more of your posts  

  • Peter_S
    Peter_S Member Posts: 109
    edited October 2018 #16
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    ron50 said:

    Hi Peter and Sylvia

          Welcome to the board. Sorry you both have to be here but there is a wealth of knowledge and support here. I'm a stage 3c survivor. What I did and what was done to me has little bearing on what happens nowdays . Iam a bit of a relic of the cancer wars. The main thing that i can give you is hope of survival. This coming Jan I will be up to 21 years post cancer. It has not been easy and it has not been without drama but I have had no recurrence of my cancer in over 20 years. Wishing you both the same good fortune. Ron.

    Thank You Ron

    Well you may be be a relic of the war with cancer but to me relic=hero, congrats on making it, and surviving not just to tell the story but to help others. I worry because I'm a 60 year old type 2 uncontrolled diabetic. I don't say this for pity and I don't feel sorry for myself it just puts me at a disadvantage that's all. I know others have their own complications and make it - I hope I'm one of them. Congrats of fighting the good fight and living to help people like me who are just begining to roll up our sleeves.

    Peter

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
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    Hi ron thank u so much. It is

    Hi ron thank u so much. It is a great relief reading your post. I'm really scared. I kept mum about what I feel to my family because i dont want to burden them specially my mother. Everytime i have my doctors appointment anxiety, fear and panic attacks are eating the entire me. I am still hoping that by this January another good news from my cea. But still doubting though because of the increasing cea though as per my onco still in the normal level. May know about your cea levels ron? Do they vary from time to time?

    Your CEA levels are very low

    Your CEA levels are very low and still within normal range. That being said, for some people it has no bearing at all on what's happening in you. When I had my initial tumour mine was always normal, now that I have mets in one lung it goes up and then comes down with chemo. It's been over a hundred a couple of times. But the chemo I take is very effective and it brings it down within a couple of treatments. 

    Ron is an amazing man who gives us all hope. He's had a really rough ride but he's still here, thank goodness. I am stage four and expect to live another 8 or more years. I recently had emergency surgery for a fistula in which they found the cancer had spread into a section of bowell an they removed it so I'm doing quite well. I doubt I'll ever be the same as I was but I'm okay and enjoying life on a limited basis. Often I am too weak or fatigued to do the things I'd like to do but my life is okay and I've gotten used to not being able to do as much as I used to.

    As Tru said, there are a number of stage fours doing well on here, including Tru. We need hope more than anything else and you'll find it here on the forum.

    Jan

  • myAZmountain
    myAZmountain Member Posts: 417 Member
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    Hi Peter and Sylvia

    So sorry to hear about your recent diagnoses--no one ever expects to hear those words--"you have cancer".  This is the place to find out all the things the clinicians don't tell you --and share experiences and find hope. I am a Stage 4  doing Folfox/Avastin--Never stop fighting!!

  • sylvia_mae
    sylvia_mae Member Posts: 37
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    JanJan63 said:

    Your CEA levels are very low

    Your CEA levels are very low and still within normal range. That being said, for some people it has no bearing at all on what's happening in you. When I had my initial tumour mine was always normal, now that I have mets in one lung it goes up and then comes down with chemo. It's been over a hundred a couple of times. But the chemo I take is very effective and it brings it down within a couple of treatments. 

    Ron is an amazing man who gives us all hope. He's had a really rough ride but he's still here, thank goodness. I am stage four and expect to live another 8 or more years. I recently had emergency surgery for a fistula in which they found the cancer had spread into a section of bowell an they removed it so I'm doing quite well. I doubt I'll ever be the same as I was but I'm okay and enjoying life on a limited basis. Often I am too weak or fatigued to do the things I'd like to do but my life is okay and I've gotten used to not being able to do as much as I used to.

    As Tru said, there are a number of stage fours doing well on here, including Tru. We need hope more than anything else and you'll find it here on the forum.

    Jan

    Hi jan. Thank u. Like i said

    Hi jan. Thank u. Like i said these fear is eating me. Cancer become my nightmare that is why everytime the doctor says something like giving you hope then suddenly telling you another scary thing like we need to check you up because your cea is not doing well maybe there is still cancer within your body. But i couldn't give the exact reaction i need to show because of my family. I needed to let them see me Im strong, that im okay but deep inside im terrified. When i saw post about cancer survivor i thought reading them is enough but it doesn't i needed to talk with you, with them and that is why i am here. Thank u thank u thank u 

  • sylvia_mae
    sylvia_mae Member Posts: 37
    edited October 2018 #20
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    Hi Peter and Sylvia

    So sorry to hear about your recent diagnoses--no one ever expects to hear those words--"you have cancer".  This is the place to find out all the things the clinicians don't tell you --and share experiences and find hope. I am a Stage 4  doing Folfox/Avastin--Never stop fighting!!

    Yes myAZmountain this is what

    Yes myAZmountain this is what i really need. Thank u

  • sylvia_mae
    sylvia_mae Member Posts: 37
    edited October 2018 #21
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    Trubrit said:

    Welmone to the forum, Sylvia_mae

    Can I suggest you open a thread on the forum home page   -  Cliick on this link https://csn.cancer.org/forum/128   -  and that way we can answer your post without running up Peter's thread. 

    The fear is terrible, and I am so glad that you found this forum.  You will find many here who are surviving Cancer at many stages, even stage IV. 

    I look forward to seeing your post on the forum home page. If you have trouble posting, just let us know, and we can help you. 

    Tru

    good day Trubrit. im sorry i

    good day Trubrit. im sorry i was reading peter's post and i didnt know how to post on my own. i will make one later. thank u