• recurrence of tumor after surgery and chemo.

    Asked by spirithorse on Sunday, April 28, 2013

    recurrence of tumor after surgery and chemo.

    I had surgery August 2012 and they removed all the cancer. I was a stage IV. After the surgery I was deemed cancer free but did chemo for 8 treatments as a preventive measure. I went in last Thursday for my CAT scan and blood work and was told I now have 2 tumors in my abdomen. One is 2 inches and the other is one inch. I am to start a 6 week different round of chemo consisting of folfiri, leucovorin and irinotecan next week. Does anyone have any words of wisdom as to how you are handling or did handle your situation? I am getting so depressed and scared. I didn't expect this. Has anyone else gone through something like this? Did your tumor(s) go away after the chemo or did you have surgery? Are you now cancer free? Also any information on what I should expect from this round of chemo regarding side effects, etc. would be much appreciated. I was on 5FU, ociliplatin and leucovorin for the preventative chemo. Thank you for any replies. Kim

    6 Answers from the Community

    6 answers
    • tmclean67's Avatar

      I had colon resection, then 6 mos of chemo (5FU, Leukovorin, oxalaplatin) and also cancer free for a year, then tumor on my liver, wedge liver resection, and now cancer free again. My oncologist wants me to do 6 mo of Folfuri chemo now. The doctors at Indiana University Health and MD Anderson ( where I got a second opinion) both top rated cancer care, said small round of chemo first would've been what they would've done then surgery so they could see if tumor was responding to chemo. Are you having surgery after chemo?
      I'm scared its going to come back, I'm scared im going to miss something, I'm scared I'm going to make a wrong choice in my treatment, I'm scared of leaving my family too soon. It is depressing. People never seem to say the right things.
      I can't say I'm handling it great so I'm afraid I don't have many words of wisdom to share but my best days are when I'm busy so I'm not thinking too much, my worst days are when I'm looking medical stuff up on line, so I try not to. My oncologist told me the Folfuri has similar side effects to folfox but more GI symptoms.
      Hope this helps a little, good luck to you.

      over 3 years ago
    • AlizaMLS's Avatar

      Dear Kim (spirithorse),

      Hi. I'm Aliza, a Breast Cancer patient and the site's unofficial resident Medical Librarian. I offer answers - usually non medical ones (Librarians generally avoid answering medical questions even if we know the answers because that's practicing medicine without a license which is illegal), and I refer folks to doctors, hospitals, institutions, agencies, websites, books, media, etc. I also do research when requested or required. I am however allowed to speak from my own experience as a Cancer patient and those of my friends and family (we number too many!).

      I see that you've had a recurrence and you're scared. That's completely normal in your situation. Of course other folks have had recurrences - lots of them - on this site too! I'm not one of them, but there are a lot of them and I'm sure that within a short amount of time you'll be hearing from them to offer you support.

      One of the first things I'd recommend that you do is contact CancerCare. Their Social Workers are wonderfully supportive and knowledgeable. They deal only with the highly specialized needs of Cancer patients and their caregivers so speaking with them isn't like "regular therapy". You can speak with them in-person (which I really recommend highly-it's always better to meet in-person with someone professional) or speak on the phone (if your schedule doesn't permit or you're not feeling up to an in-person meeting). But I think some of your fears will be allayed when you speak with them.

      The other person you should speak with (I'm surprised that you didn't [but you sound so scared now maybe that's why]) is your Oncologist. She/he should be the first person to tell you that this isn't unique and doesn't necessarily indicate that things are all bleak. I think you are letting your imagination run a bit wild (who wouldn't if they were in your situation?!). You need to calm down a bit, enough to be able to call this doctor and have them phone you back for a serious discussion.

      Granted going through another round of chemo is not a picnic, but it very well may nip things in the bud. Try contacting CancerCare first if you think it will help you to have an ally on your side before you do this (it really helps) and of course, everyone on this site is rooting for you as well.

      The important thing to remember though is that while we (on this site) can root for you, everyone's own situation is unique (even other Colon Cancer patients) and no one else's experience will be yours!

      Hoping I offered you advice that made sense and offered you hope. If you wish to contact me, feel free to do so here or email me offsite. I'm happy to help in any way I can (many members of my family have had Colon Cancer [I'm the only one who's had Breast Cancer]).

      Sending you good thoughts and wishes,

      over 3 years ago
    • Peroll's Avatar

      I can tall you from my experience your situation is not unique and it is not a death scentance, I was originally diagnosed with colon cancer July 15th 2004 and had colon surgery two weeks later. I had a round of "prevenative" chemo and was "cancer free" until spring 2006, when a small tumor was found in each of my lungs. When cancer is in more than one place they assume that it is in other places too and tend to treat it with chemo as it goes everywhere while surgery radiation and other treatments are more targeted, so I had chemo. After about 9 months of chemo, with the tumors stable, I decided that it was time to look at different options as I didn't really want to have chemo for the rest o my life. I did some research into other treatments and decided that surgery was the best fit for me so I had the tumors removed in two seprate surgeries, one on each lung. I then had a little radiation since the margin on one tumor was small and some more prevenative chemo. I was again "cancer free" until the fall of 2011 when it was found in a lymph node in my chest. I had radiation to kill it but it made its way to my adreanal gland so I had more chemo and then surgery to remove the adrenal gland. I am currently finishing up some preveantive chemo.

      The lesson from my journey is that cancer, even stage IV is nbot a death scentance. It can be beat and beat several time if necessary. In your case the fack that the tumors are in your abdomen is good news as it has not traveled far and it is not in really vital organs so there are lots of treatment options. Chemo is a good place to start and see if it shrinks or at least stops the tumors from growing. I also urge you to start doing some research on other treatments like surgery, radiation, cyberknife, and radio frequency ablation to name a few. If necessary get second opinion. you are close to the Mayo clinic so that may be a good place to start. You may have to work a little to get your Drs to think outside the normal treatment protocals, I did, but it can work and you can be cancer free. Good Luck and let us know if we can help in any way.

      over 3 years ago
    • PaulaT's Avatar

      I just recently had surgery (Feb 2013) to remove a tumor in my abdomen. Our situations sound very similar....I was diagnosed with colon cancer in Nov 2009, had surgery and found out 4 months later that it had metastasized in my liver. I had a liver resection in Aug 2010 and 12 round of 5FU, Leukovorin, oxalaplatin and was cancer free from May 2011 to June 2012 when the tumor in my abdomen was discovered. I did 6 rounds of 5FU, leucovorin, avastin and irinotecan which caused the tumor to shrink. Because there was no other occurrence of cancer, I had 6 weeks of radiation leading to the surgery two months ago - AND I'm now cancer free again. Because the margins of the tumor were dirty, I had radiation directly into my body on the operating table. My doctors feel there is no reason to do followup chemo so I'm back in the monitoring phase.

      So....I know how you feel. I was scared and thought I'd be looking at chemo forever when the tumor in my abdomen was discovered.....but now I'm cancer free again. I've learned that everyone's situation is different and to trust my team of doctors - I go to Mass General Hospital - and they are excellent - and my surgeon is amazing, he has done all three of my surgeries.

      I can give you some advise on the chemo you are about to begin, based on my experience. The irinotecan, for me, was really nasty stuff. I had extreme nausea and vomiting for the first two treatments until my doctor prescribed Emend. For me, it was like a miracle drug - really worked for the nausea and vomiting. It is very expensive but my insurance covered it at the highest co-pay tier, which for me was $45. I also had what the nurses called "anticipatory nasuea" where the day before I was scheduled for chemo I was horrible nauseous. I'd never heard of this but apparently it's not all that uncommon. I took lorazepam 1mg the day before and the morning of my chemo and that helped.

      One thing that has helped me get through these last three years is not to think too far ahead. I developed a "get through this" attitude when I was doing chemo and radiation. When I would see the doctors after completing that treatment, I'd try to go in with an open mind and not think too much about the what if's. So far, I've been told I'm not the "typical" stage 4 colon cancer person - and that works for me!!!

      over 3 years ago
    • spirithorse's Avatar

      Thank you all very much. I am being treated at the Mayo clinic in Rochester. They want to do the chemo first and hopefully this will shrink the tumors or even get rid of them. Surgery would be the next option. I have absorbed everything but the problem I am having is major depression. I am on an anti-depressant but I can't shake this. I suppose I will call my doctor but I really hate taking so many pills. Anyway one day at a time and thank you all for your responses. It really helps.

      over 3 years ago
    • Peroll's Avatar

      Kim, the depressiion you are experiencing is not your fault it is caused by the chemo. Chemo affrects tyhe seretonin levels in the brain which is what causes depression. It is chemical and not something wrong with your head. I am amazed at the number of people here on WhatNext that, like me , have experienced this but that thier oncologists, like mine, where not really aware of the depression cause and prepared to recognise and treat the depression. I do know that people respond to different anti-depressants so you may have to try a couple of different ones to find what works for you and it csan take a couple of weeks for any anti-depressant to fully work so it may take some time to get it all worked outy. Good Luck and let us know how else we can help.

      over 3 years ago

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