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Stage 3 Diagnosis

Noon32316
Posts: 8
Joined: Apr 2016

Greetings. I'm fairly new to online forums and completely new to the world of cancer at 36 years old. I was diagnosed late in March. Had open sigmoid colon resection at the beginning of April and learned it was Stage 3 that spread to my lymph nodes. It has been a whirlwind and I still don't understand 99% of this language called cancer. As "prepared" as I was for the surgery, I'm feeling frustrated, alone, and lost with the aftermath of surgery. I get that my body needs to re-train itself and this is the time when patience needs to be my constant companion. But still...I'm exhausted. I didn't do my homework about what really happens after surgery so find recovery challenging to say the least. I miss being able to enjoy this beautiful Spring because I'm in the bathroom every hour. Food has become a trigger of anxiety because it's so difficult to determine what is safe and what will cause forced hibernation in the bathroom . I know that with each passing day, things will get better and my system will improve. I just wonder how long that will be. For anyone who has experienced something similar, did you have the frequent bm problem and how long did it take to return to a manageable routine? My next step is chemotherapy. That's a whole different gift box to unwrap next month. Thanks for taking time to read this.    

MrsWeddle's picture
MrsWeddle
Posts: 6
Joined: Mar 2016

Hello. I am sorry you have to be here, but welcome.

I was 36 (I recently turned 37) on 3/14/16 when I went into the emergency room for rectal bleeding and stomach pain. I was told after a scan, scopes and a colonoscopy that I had an obstructive,large tumor in my colon. I had a colon resection on 3/18. The surgeon told me the same day that I have colon cancer. I've also been bummed about missing out on the spring weather.

 I can relate to what you are going through. I have the same problem of feeling chained to the bathroom and stressing over what I should and shouldn't eat. I feel like I was ill prepared for the "aftermath" of the resection.  You definetly are not alone in this battle. I am 1 month and a day out from surgery and things are improviing everyday for me. Give yourself time. (I know, easier said than done)

I also can relate to the struggle to understand the language of cancer. At the follow up to have my staples removed the surgeon said that he thinks it stage 2b but that the oncologist (which I will see 04/21) will be the one to let me know and to decide if I will need adjuvant therapy. The waiting and the not knowing is a burden but I imagine it is something that all cancer fighters struggle with.The more I try to educate myself the more confused I become. My tumor was a T4  I didn't have any cancer in the nodes but I did have cancer in the fat surrounding the nodes (N1c) amd M0. Everything I have read says that is stage 3b (not 2b)  The waiting game continues until my appointment.

I apologize that I wasn't able to answer all your questions. I just wanted you to know I understand what you are going through. You aren't battling alone. Sending prayers for a speedy recovery and wishing you the best of luck with your treatments.

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

Hello and welcome. Don't worry, you'll get all the information you need here. Trying to figure things out on line is frustrating and generally dosn't address what it's really like to live with this, just facts and statistics. And often the staistics are way out of date. I was also stage 3 with some lymph node involvement, 3 out of 11. I had an illeostomy done before the surgery to remove the tumour so I don't have the bowel issues you have but I'm sure someone on here will have some ideas.

Jan

db8ne1's picture
db8ne1
Posts: 142
Joined: Feb 2013

Sorry you have to be here - but you are in the right place.

Unfortunately, everyone is different. What I can tell you is that you should always check with your doc before taking any RX's or OTC meds.  That said, things like Immodium could help slow things down.  It does take some time for your body to adjust.  It's royally PO'd at you for the surgery and it will take some time to sort itself out.  You might want to keep track of what you are eating so as to determine if there are any specific foods that trigger worse than usual issues.  Most Onc's offices have a nutritional advisor who may be able to offer support services, as well.  Take advantage of any help they offer.  And if they don't offer - be sure to ask!!!

I had 6 weeks of 5FU plus daily radiation before my surgery.  Spent much of the time in or near a bathroom.  Once I recovered from that I had surgery.  6 weeks post surgery I started 6 months of FOLFOX.  That only magnified the bathroom issues for me.  So, basically a year of staying near a bathroom. That said, this too shall pass.  Really.  I finished chemo late 2013 and things are OK now (MOST of the time). Still have off and on issues, but very manageable.  I believe they refer to this as "the new normal"?

Be sure to check back on this board frequently for any concerns or questions you have.  Or, just to vent.

We are here for you!

J

beaumontdave's picture
beaumontdave
Posts: 1090
Joined: Aug 2013

Welcome, my story starts at 49yo, otherwise it's very similar to yours, sigmoid resection, couple of nodes involved. It's been so long I'm straining to remember what recovery after surgery was like. I recall urgency and diarrhea for about a month, getting sporadic after that, through Folfox chemo, then giving way to a struggle passing stuff. 8 1/2 years after I take a stool softener daily and sometimes strain a bit, but otherwise it seems very normal and regular. I hope you bounce back and breeze through chemo. Sucks to get this so young, but it's an asset when you're recovering and healing. Good Luck.......................................Dave

Noon32316
Posts: 8
Joined: Apr 2016

Thank you all for your kind words and advice! It's such a comfort knowing there's an abundance of support here. I had my follow up appointment this morning and finally figured out I'm Stage IIIC, T4a, N2b. It's kind of nice knowing what all those letters mean. I meet with the oncologist next week and my surgeon has started the process of ordering a port. Apparently the port is less painful than being poked for 6 months. Seems silly but after the staples were removed, it looked like I had a tattoo running down my belly designed especially for me by Artist, Dr. Surgeon. I'm trying to prepare myself for the chemo process now and findings ways to be zen about what is to come. Again, thanks for the warm welcome. Best wishes to all.     

Trubrit's picture
Trubrit
Posts: 5297
Joined: Jan 2013

Ah, the port. You will love it. It is much better than being poked. Much, much, much better. 

Zen is good. Really good. I found a wonderful CD when I was going through chemo, called Meditation to help you with Chemotherapy (Healthy Journeys)  It introduced me to the world of meditation and I haven't looked back. It got me through many a night when sleep elluded me. When my thoughts raced and it truly felt like my head was going to explode. 

As for the bathroom issues; I hope you find a way to get yourself outside in the lovely spirng weather. The sunshine will lift you (cover up when you're doing chemo, or you will fry like an egg). I also found that I got to a point when I had to train my mind in order to train my bowel. 

Stick with us, you'll not regret. 

Sue 

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

The port helps as far as them not poking around trying to start a line but its still a poke. I was so glad to have mine taken out.

Jan 

danker
Posts: 1264
Joined: Apr 2012

Have your dr. give you a prescipipn for LOMOTIL.. You can stop the diarrhea with it much better than with over the counter meds.

Try a brat diet. (Bananas,Rice,Applesause, and Tea. 

Good luck with your ongoing fight. May you soon be NED!(no evedence of disease)

Ravensmom822
Posts: 1
Joined: May 2016

Hello!  Please know that you are not alone in this journey, and this site is excellent for others sharing their experiences and how they've dealt with them...invaluable advice, though not everyone is the same....my hubby was diagnosed with Stage IIIB Colon Cancer in May of 2013...with some lymph nodes involved...he has a Port...you will LOVE having a Port!!  LOL...He has "vanishing veins"...they see a needle coming at them and POOF! they disappear...LOL...the Port has simplified our lives in having Chemo & other blood tests and CT scans  tremendously!!

He also had Sigmoid resection done.....think of rotaries ( when driving ) or round-abouts as some call them....Rotaries work to SLOW DOWN the traffic until it's safe to proceed....the Sigmoid is the "curved" section of the colon at the END....SLOWS DOWN the movement of your bowels....in a resection, that part is removed..........now, instead of the "rotary", you've got more of a "California Freeway"....a straight shot, so to speak...nothing to slow things down...so yup, it DOES require "getting used to"...LOL...when he "gets the urge", it's OUT OF MY WAY NOW....but I will tell you, that it's just because your body is adjusting to the surgery, and it DOES get better, believe me!!!  He now eats whatever he feels like, and RARELY gets any diarrhea from any food....but all people are different, and you will learn what affects you and what doesn't....just give your body TIME to recover properly!!

I will mention this, and it's VERY IMPORTANT.....there is one Chemo drug that you should be WELL AWARE of........Irinotecan........it causes EXPLOSIVE diarrhea !!!  In fact, my hubby's oncologist said those in the medical field refer to it as "I Run To The Can".....IF...IF they are going to use this drug on you, you might want to do the same as my hubby has....before taking the Chemo, he takes a dose of Immodium AD....then as soon as he gets back home ( after the Chemo ) he takes another dose.....and then only takes more Immodium if necessary.....it's a super inconvenient side effect, but CAN be kept under control....(as long as you KNOW this beforehand...LOL...otherwise, invest in Bounty paper towels for the clean-up! LOL )....

Good luck with it all....at first, all the info they give you is overwhelming!!!  And so confusing to digest!!  But there are many that have been in the same position, and all are more than willing to give you encouragement & insight as to what helped THEM in dealing with it all, including myself as hubby's primary caregiver! Feel free to "vent", or ask questions, and let us all know of your progress in this journey...we care!!

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

       I'm not much help with the here and now treatments. I Think my chemo was mixed in a bathtub out the back of the oncology unit , strained through muslin and applied through a 22 calibre needle. And lots of it . It turned the veins in my arms almost black from each hand to shoulder. That was in 1998 when I had my stage 3 c tumour removed. Currently I am still cancer free over 18 years later. Not very healthy but cancer free. Do whatever you have to do to beat it. You are in the fight phase now and fights are never pretty but if you win it and come out the other side it makes it all seem worthwhile . All the best Hugs Ron.

stevo55
Posts: 3
Joined: Apr 2016

I only did 6 folfox infusions instead of the normal 12. I have to take a celebrex/placebo everyday for three years as part of the trial. So far so good. If this works, future Stage 3 CRC patients will only have to do 6 instead of 12. I understand that it used to be 18.

I had very little trouble post surgery and my bowel movements are near normal now that it has been over six months. Just had my port removed and I'm getting back to normal. Good Luck!

If the trial doesn't work, I can say that I took one for the team.

 

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