Experiences after Treatment

PattyF

Was diagnosed with stage IIIC colon cancer last February, had resection surgery and completed 6 months of Folfox at the end of August. I am feeling good and don't have any real side effects to talk about, but I have been more emotional recently than I ever was last year. I would love to know what to expect after Folfox, what other people similar to my situation have experienced, etc. I am kind of anxious as to whether or not cancer will reappear and would love to know if so where, when, etc. I'm sure it is what goes through every cancer patients mind, but I wish there were more resources available at this point.

MyLungCancer

Congrats on making it through the treatment! You are where I am striving to get to. I can't help you about your question since I'm not done and a different type of cancer, I just hope you can learn to enjoy being on the other side of treatment and not be haunted by the possible recurrence.

Jayne

Hi Patty F, good for you! It's understandable you are more emotional, you just dodged a life threatening bullet. I didn't have a whole lot of problems following Folfox either. My colon cancer did come back in my lungs. I had 4 VATS surgeries and the 4th time, the surgeon just took the entire lobe. That chemo was more difficult than Folfox, I'm not going to lie and I had a lot of lingering fatigue and other nasty side effects. But that was in 2011 and I have been clear since. This is so much like a roller coaster you just need to ride the ups and downs. BUT you are on a serious up now so try not to fret about what might not even happen. Easier said than done, I know but with more time, the worry might subside for you, at least to the point where it doesn't consume your thoughts so much. That's how things went for me.

GregP_WN

I can relate to worrying about a recurrence. I can't say I have "worried" about it over the last 32 years, but I have always had it in the back of my mind. Each time I have had a little issue of any kind it always crosses my mind that this could be the next one. Most of the time, it is not anything to worry about, but it's always possible, as it was for me a month ago. The best I can offer is to not let that worry control you, live your life like it's never going to happen, but have a plan just in case it ever does.

All of us wish you the best as you move on through survivorship.

PattyF

Thank you Jayne and congratulations to you for being clear since 2011!!! Can I ask what stage colon cancer you were diagnosed with? I realize every person's journey is different, but I like to know the good, the bad and the in-between so I can get a grasp of what the possibilities are. Doctors don't want to tell you what to expect because they truly don't know, but the unknown is what has been bothering me. I do think that time will help ease my mind, but waiting until March to get my first colonoscopy, CT scan, blood work, etc. is what is making me anxious.

Jayne

Hi, Patty. Thank you, it was quite an experience. I had no evidence of metastasis at diagnosis but my tumor had attached itself to my vaginal wall so it was a difficult surgery. The doc took my ovaries as a precaution but were concerned about catching everything. So, I'm not clear I ever understood the initial Stage. The Onc told me (generally speaking) that if you are going to have a re-occurrence it would likely happen within the first 2 years following diagnosis. Sure enough...that's when my lung mets started popping up.

Jayne

Sorry, meant to say no evidence of disease at surgery, not diagnosis.

Davina8960

I was Stage IIA when diagnosed with rectal cancer. Had a total of 3 surgeries - ileostomy, reversal, and then colostomy due to a RVF. I had both chemo and radiation and am now going on 3 years NED.

I think it is normal the first year to be emotional especially thinking of reoccurrance but the further along the less you think about it. I do find I get sick easier now not sure if that is related to cancer treatment, sarcoidosis, or having severe sepsis shock w/multiple organ failure two years prior to cancer diagnosis.

I do find myself fatigued more so than anything and have neuropathy that is made worse by cold weather.

Seems with colorectal cancer other sites are lymph nodes, reproductive organs, and lungs when speaking of reoccurrence.

Hope that helps but always best to speak with your oncologist. I see my surgeon and oncologist every 3 months on a rotating schedule.

JaneA

Patty, I was diagnosed with Stage IV rectal cancer in 2014. I had 12 cycles of FOLFOX and Avastin (a targeted therapy if you're Stage IV) - six at the beginning and six after my surgery - plus 28 days of pelvic radiation and 5 targeted radiation treatments for a lung met. I have been NED ever since.

Lingering fatigue seems to go with a cancer diagnosis and treatment. I exercise and walk - it seems counter-intuitive that doing physical stuff would help but it builds up your stamina. Just start off slowly and build up.

Anxiety over recurrence is normal - like everyone said, the first two years are when recurrences are most likely to appear. I've found that an idle mind and idle hands contribute to anxiety. I stay busy and have learned to watercolor - learning a new hobby has actually been the most helpful emotional support that I have found. We're all here for you and we understand.

myb

The Colorectal Cancer Alliance has chat groups that I found very helpful to discuss issues with survivorship.

schweetieangel

I was diagnosed with colon cancer stage 4 and spread to my liver in Feb 2014. Went through surgeries for both and Chemo.
My colon cancer came back Feb 2019. Again surgery. No Chemo this round as I had gotten too sick on Chemo and ended up in the hospital 3 times during it.
Reoccurence is always in the back of my mind still. Don't dwell on it. Live your life
. keep getting checked.
My next colonoscopy is April this year. Keeping you in my thoughts. Xo

schweetieangel

I had commented on this way back.

I dud have a colon cancer reoccurrence myself 5 yrs to the day of my surgery 2014 and 2019

I had surgery again no chemo as I seem to be allergic to the 2 kinds I took too many side effects and hospital stays.

It's now 2023 and I've been Ned since 2019

Still get colonscopy every yr and CT scan every six months I think after 10 years we are stopping that not sure if there will be a plan after that for CT. Live your life to the fullest try not to dwell on if it will come back or not. Deal with it if it does at that time

I wish you a healing journey.