Recurrence? After 6 Months? How Do We Fight?

MrsCollazo
MrsCollazo Member Posts: 6
in Colorectal Cancer #1

My husband was diagnosed 12/2013 with stage IIIC colon cancer... After surgery to remove the tumor we completed seven rounds of chemo... Before his surgery we were told his CEA level was 9 and then after chemo (07/2014) it was down to 2.2 but now we just got the test results and it has elevated to 74 (12/2014)...  We completed a PET scan on 12/05 and the doctor told us yesterday that he has "several instances of cancer" and we will need to return to chemotherapy for treatment.  I asked if that is the only treatment. 

He has no symptoms and is feeling "great" in his words.  We just returned from an amazing European vacation where we were married after being together for over 10 years.  It was time!  Kiss

We only spent six months cancer free!  I was hoping for a longer time between battles!!  I just need some fighting words of encouragement!  Some stories of this community who is still fighting the fight after years of treatment... 

We are looking for alternative medicines, a second opinion and anything else we can muster to fight.  I don't believe our Oncologist is fighting aggressive enough.  I'm not sure why, but I feel a little more scared and frustrated with the recurrence than with the original diagnosis.  Does that seem strange?!?!

Comments

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
    #2
    It never hurts to

    get a second opinion. If you feel this doctor is not fighting this aggressively enough, then maybe you need to find one that will. Unfortunately, to some of these doctors, you're just another number. We're lucky that my brother's doctor is looking for any way that she can fight this.

    Congrats on your marriage. I am sorry that you're dealing with this. I've heard that recurrence happens a lot in the 1st year. There are great people on this site who can give you lots of information that may be helpful to you. There are people on this site who have been NED for many years, even some stage 4s. Keep the faith!

    Lin

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #3
    Many here

    There are many here who have been and continue to fight for years.

    I started out as Stage IIIB, but when a met appeared in the liver, I was bumped up to Stage IV. After surgery on the met, I didn't have any more chemo, and so far so good. 

    It is a constant batle regardless of wether you are activly undergoing treatment or waiting for the next set of results. Never free from the worry that it may return. 

    I hope that your husband is able to decide on what is best for him. As for feeling good, when I had a tumour the size of a softball, and another the size of a golf ball, I was feeling the healthies I had been in years, so that it really no indication of what is growing inside. Best to get it taken care of, is how I personally look at it. 

    Welcome to the forum. I hope you come back and keep us posted, and let us help you and your husband along the journey. 

    Sue - Trubrit

  • LindaK.
    LindaK. Member Posts: 506 Member
    #4
    2nd that 2nd opinion advice

    My husband's recurrence came only 4 months after NED.  We switched to a larger more hopeful and helpful cancer center the day after his old onc. told us the news that his cancer was now treatable but not curable.  You both have to feel comfortable with his care.

    Linda

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #5
    Did the doctor tell you where these "instances" of cancer

    are located?  That can make a difference in how you might move forward.

    Just to give you some hope, I had four recurrences in 2 years.  In my case, the spread was more localized than it often is, and didn't go to major organs like the liver and lungs. This can make a big difference in outcome.  In cases where it does go to another major organ, it can also make a difference if there are only one or two mets in those places.

    Chemo was not effective for me, but after 5 aggressive surgeries, I have been NED for 3 years.  And I'm not the only one, so there is reason to still feel hopeful!

  • MrsCollazo
    MrsCollazo Member Posts: 6
    #6
    annalexandria said:

    Did the doctor tell you where these "instances" of cancer

    are located?  That can make a difference in how you might move forward.

    Just to give you some hope, I had four recurrences in 2 years.  In my case, the spread was more localized than it often is, and didn't go to major organs like the liver and lungs. This can make a big difference in outcome.  In cases where it does go to another major organ, it can also make a difference if there are only one or two mets in those places.

    Chemo was not effective for me, but after 5 aggressive surgeries, I have been NED for 3 years.  And I'm not the only one, so there is reason to still feel hopeful!

    Thank YOU!

    If of all, I thank all of you for your words!!  We will find out further information on Monday, but our Oncologist said during our phone call that it has NOT moved to any other organs and it is localized in just the abdomen.  

    Your words and experiences are EXACTLY what I'm looking for from our Oncologist.  And YES, sometimes that is exactly what I feel like... A number!  

    I wish I would have found this site a year ago!   

  • marbleotis
    marbleotis Member Posts: 720 Member
    #7
    Welcome and sorry you are here

    My advise is get a second, third, forth opinion.  Information is power and a great weapon against this fight. 

    The Onc sounds to "vague",  several instances.....  You will both feel much better and empowered with additional opinions.

    This community is great and is here to help you.  There are many of us in and at various stages.  I found you will find advice on just about anything.

    Keep us updated.

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #8
    familiar

    Many elements of your story sound familiar.  His offer is mostly the standard treatment of some vintage.  Standard oncologists typically will only offer a very limited range of options.  Consulting advanced centers, and surgeons with a specific plan might change that.  

    Frequently, an era of good feeling after earlier recovery is one of the deceptive parts of metastatic illness.

    First, a CEA of 74 with "... but the tumors have not reached any other organs" most implies distant lymph nodes, an old acquintance.   That is a serious situation that needs immediate treatment.  Normally they will say chemo for as long as the cancer doesn't progress and the body can tolerate it.  A few have used oral chemo, targeted, nutritional or immune therapies.  We carefully did them all together, with milder off label treatments, plus non-routine surgery. 

    One of the first things we did was get more biomarkers (CA19-9) run to better target  and monitor the cancer and to use cimetidine to help stop its spread.   Experimentally, we have used oral chemo, celecoxib, simlar to ADAPT, plus targeted cimetidine and PSK as part of a larger but nicer treatment to stop progression, even for years.  Constant daily chemo on lymph nodes has helped slow that process down after surgery. Getting surgery was non trivial and everything had to be accessible and removable by some means (additional surgeries are possible).   Regular medicine's offer and promises to us were not nice. 

     

     

     

     

     

  • Easyflip
    Easyflip Member Posts: 588 Member
    #9
    UncleBuddy said:

    It never hurts to

    get a second opinion. If you feel this doctor is not fighting this aggressively enough, then maybe you need to find one that will. Unfortunately, to some of these doctors, you're just another number. We're lucky that my brother's doctor is looking for any way that she can fight this.

    Congrats on your marriage. I am sorry that you're dealing with this. I've heard that recurrence happens a lot in the 1st year. There are great people on this site who can give you lots of information that may be helpful to you. There are people on this site who have been NED for many years, even some stage 4s. Keep the faith!

    Lin

    Hello

    I was originally diagnosed IIIb had a colectomy, 12 rounds of folfox and was NED for 9 months and then a recurrence in my liver. It was surgically removed 2 1/2 months ago. I know what you mean about feeling like starting the battle all over again. I think the recurrence was harder to hear than the original diagnosis. Try to have them remove the cancer by any means possible wherever it is, this is your best chance for long term survival. I've added in many alternative/integrative things into my daily routine also because frankly the chemo and original surgery didn't stop my cancer from spreading. I'm optimistically living from scan to scan. Good luck to you both and keep us posted on your progress. Attitude helps tremendously, stay as positive as you can, love and laughter are chemo for the soul : )

    Easyflip/Richard

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