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Recently diagnosed

Peter_S's picture
Peter_S
Posts: 98
Joined: Oct 2018

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   

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

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

Peter_S's picture
Peter_S
Posts: 98
Joined: Oct 2018

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 :)

Trubrit's picture
Trubrit
Posts: 4856
Joined: Jan 2013

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's picture
Peter_S
Posts: 98
Joined: Oct 2018

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's picture
Annabelle41415
Posts: 6220
Joined: Feb 2009

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

Peter_S's picture
Peter_S
Posts: 98
Joined: Oct 2018

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

beaumontdave's picture
beaumontdave
Posts: 996
Joined: Aug 2013

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

Peter_S's picture
Peter_S
Posts: 98
Joined: Oct 2018

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

plsletitrain
Posts: 253
Joined: Jul 2017

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
Posts: 37
Joined: Oct 2018

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.

Trubrit's picture
Trubrit
Posts: 4856
Joined: Jan 2013

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

sylvia_mae
Posts: 37
Joined: Oct 2018

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

Trubrit's picture
Trubrit
Posts: 4856
Joined: Jan 2013

I bet many of us here started by posting on someones thread; its no big deal. 

Look forward to hearing from you more. 

Tru

Peter_S's picture
Peter_S
Posts: 98
Joined: Oct 2018

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  

sylvia_mae
Posts: 37
Joined: Oct 2018

thanks peter its a combination from my mom and my dad's name...you're absolutely correct but sometimes having this disease will put my positivity into a test. 

ron50's picture
ron50
Posts: 1721
Joined: Nov 2001

      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.

Peter_S's picture
Peter_S
Posts: 98
Joined: Oct 2018

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

ron50's picture
ron50
Posts: 1721
Joined: Nov 2001

   I too have type two diabetes. Unfortunately it was mainly due to a mis diagnosed kidney condition. I was treated with high dose prednisone for nearly two years. I have since had two more kidney biopsies with a new neph. He has confirmed I have an unknown auto -immune kidney problem and i take cyclosporin twice a day. I have moderate to severe peripheral neuropathy in my feet and legs. My neph supects i have auto- immune hepatitis. I Have regular bouts of vertigo . I hve been dxed with atrial flutter and atrial fib earlier this year and take warfarin daily.  Apart from that I still work four days a week and when well enough I go out fishing in my tynny or preferably my kayak. Cheers Ron.

sylvia_mae
Posts: 37
Joined: Oct 2018

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?

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

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

sylvia_mae
Posts: 37
Joined: Oct 2018

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 

myAZmountain
Posts: 270
Joined: Apr 2018

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
Posts: 37
Joined: Oct 2018

Yes myAZmountain this is what i really need. Thank u

Peter_S's picture
Peter_S
Posts: 98
Joined: Oct 2018

Hi myAZmountain and I appreciate the warm welcome.

You're a hero, I think every single one of you are and even though I don't know you I'm grateful to you and sure can use the support and the hope. I won't know my stage untill surgery but whatever it is I'll follow your mantra and Never Stop Fighting!

Peter

plsletitrain
Posts: 253
Joined: Jul 2017

I was also 30 years old when diagnosed and because I still have young kids, I underwent chemo.  I had a recurrence in my lung and am now back on chemo.  Its not easy, which route you take.  Chemo or not, the uncertainties are always present.  A CEA rise can be a cause for concern, but not until the scans confirm it.  I had normal CEA even when I had my colon tumor, after, and even with my lung met (it slightly increased but still within normal) so I stopped taking the CEA test for my monitoring.  There could be several factors that can cause the CEA to rise, not necessarily cancer.  

Best wishes.  Keep strong!

sylvia_mae
Posts: 37
Joined: Oct 2018

thank u plsletitrain. every single word you guys have said are great help especially in these days of uncertainties. please keep me posted and i might have several questions though i know we have different experiences and side effects but i wanted to know and understand about my disease and i cant keep on going to the doctor because sometimes doctors answers were vague. i need to know from you guys because like me we're in the same boat wherein cancer invaded our bodies. 

ceotase's picture
ceotase
Posts: 3
Joined: Apr 2017

This is a great resource for so many questions and concerns.  I've been registered for over a year, but only just started to post.   

About CEA - it can be a good indicator of tumor growth or reduction but should only be used as a "marker"  and not as life expectancy indication.  After I first began treatment I freaked out with every increase and then rejoiced with every reduction.  It was a real roller coaster.   I've settled down with the readings now and have realized (in large part to this forum) that a CEA increase is not a death sentence.   If fact my CEA was 1195 after my colectomy in January 2017.  After Chemo cycles began it has gone down and up. This month It's down to 45.  So from my perspective that's great progress, but if I compare it to so many who have less than 10 it used to be depressing.  So be not troubled about the CEA number. Your Doctors look at all tests and markers and should keep you updated on your progress. 

sylvia_mae
Posts: 37
Joined: Oct 2018

thank u ceotase never thought that joining these org. makes a releiving feeling. i'll keep that in mind. 

Peter_S's picture
Peter_S
Posts: 98
Joined: Oct 2018

Hi ceotase,

Thank you for taking the time to welcome me here - I'm so glad to have found this forum it seems intimate and firendly. I'm at the idiot stage when it comes to Cancer lingo but I'm starting to educate myself, and I thought diabetes was complicated! Well, I'll be asking lot's of questions and learning as much as I can - thanks for reaching out. Peter

Twinzma
Posts: 212
Joined: Jan 2018

Peter, so sorry that you have had to join the group. Ugh, not the words anyone wants to hear. Know you have found a wonderful group here. There are so many that will give you their sucess stories despite the terrible odds. And please don't look into those stats online they are so wrong so antiquated and wrong. CEA can fluctuate for so many reasons so try not to fall into the trap of disbeleif if you do hit a little bump. My husbands rose incredibly one week because of cuts on his fingers! Even scans can e decieving sometimes. my husbands came in as mixed reviews this last time so we don't know what to beleive. Growth, shrinkage stability. All I do know is he has undergone almost a year of treatment and is still working and traveling and living life to the fullest despite being told last fall he had only 6 months to live. We just got back from Mexico and he had more energy than I did! This is just a diagnosis and doesn't define you or how you will react to treatment. I pray that you will find peace, have the strenth to fight and that you find NEDsville as soon as possible! Hugs!!!

Peter_S's picture
Peter_S
Posts: 98
Joined: Oct 2018

Thanks so much for the great advice, I'm scared enough without the horror stories plastered all over the web, so I hear you. You and your husband sound awesome, stories like his give me hope and hope = life.

 

Peter

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