Next steps?

jen2012
jen2012 Member Posts: 1,607 Member
in Colorectal Cancer #1

Having an anxious day.  Husband stopped chemo the end of March - had surgery to remove rectal tumor the end of April.  Also had a temp ileostomy at that time.  He is stage 4 due to para-aortic lymph nodes which were removed/biopsied back in the fall right after diagnosis.  Surgeon said ileostomy would be reversed in 6 to 8 weeks, however when they did the leak test they found there was a narrowing.  So....surgeon says he needs a dialation treatment or two or three.  First one was finally scheduled for last week, but due to dehydration and high potassium levels, it was cancelled.   End of May, his CEA was .5 and then beginning of July it was .6.  

Surgeon is now   on vacation and no one there seems to be in any hurry to get these dialation procedures scheduled.  I'm worried about him not having chemo folloiwng the surgery.  He did folfox from Sept - March, with avastin for most all treatments. 

Wondering should he be scanned (last pet was in March) should we ask that they put him back on chemo or should I just relax and enjoy the summer and not worry?  I say I because he is enjoying not being on chemo and is keeping very busy with work, volunteering and projects, but I worry that as we are getting back to living, the cancer may be spreading.

 

Comments

  • lp1964
    lp1964 Member Posts: 1,239 Member
    #2
    Dear Jen,

    You are asking if you should suggest to go back on chemo or relax and enjoy the summer?

    Well, I suggest to sit down with the doctor as soon as you can and discuss what's the best. We patients and caregivers are not qualified to make the decision on the chemo or whether he needs a scan now or later. So let the doctors do it and plan according to that.

    I wish you guys a wonderful summer either way it goes.

    Laz

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #3
    Thanks Laz...we have seen the
    Thanks Laz...we have seen the doc...I'm just always 2nd guessing and looking to see what others have done following surgery. Sort of an unofficial 2nd opinion with no bill attached...
  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
    #4
     
    Hi Jen,
    A quick fix when he

     

    Hi Jen,

    A quick fix when he seems to be getting dehydrated - give him some coconut water (not milk).  It works immediately and can sometimes help to prevent a trip to the ER.

    Take care,

    Cyn

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #5
    LivinginNH said:

     
    Hi Jen,
    A quick fix when he

     

    Hi Jen,

    A quick fix when he seems to be getting dehydrated - give him some coconut water (not milk).  It works immediately and can sometimes help to prevent a trip to the ER.

    Take care,

    Cyn

    Thanks Cyn... we shared a
    Thanks Cyn... we shared a nasty stomach bug over the 4th...he was drinking lots of water Gatorade and coconut water but his potassium went too high. They want him to drink pedialyte now to stay hydrated...yuck!
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #6
    Jen

    Talked to the new onc about this yesterday....

    His theory is much like my regular onc's......no visible tumor = no chemo.

    Especially true if he got CLEAR margins from the surgery....

    The new oncological approach is that chemo needs to be saved when there is a mass or evidence of cancerous activity that can be traced via scans. 

    To just flush chemo through his body is not a guarantee that it would work....and you could lose the ability for that chemo to be effective should you need it at a later date.

    Those dilation issues don't sound too fun....hope they sedate him for that...and best of luck there.

    Watch and Wait is really not a bad option.....I've learned over the course of my stuff, that it really is a valid option...he'll be in tight with the scans, so the minute they see something pop up.....

    As for scans, since he is freshly out of treatment, I would have thought they would have put him on a 3-month CT scan cycle for at least a year....PETs are not usually done as routine, unless CT reveals a mass.  Although, my very first onc used to order 4 a year for me to go with every CT....but I know why he did that...and it wasn't on my behalf. 

    Then after a year, they would probably graduate him to every 6-months for the next year....and then they might move him to once a year.....but that's going to take guts to buy off on that one. 

    Until he shows clear for awhile....I'd hedge my bets between 3-6 months. 

    When your onc returns from vacation...I'm sure they will concur.

    Enjoy your summer after you get the dilation fixed...and enjoy the down time from cancer:)

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #7
    Sundanceh said:

    Jen

    Talked to the new onc about this yesterday....

    His theory is much like my regular onc's......no visible tumor = no chemo.

    Especially true if he got CLEAR margins from the surgery....

    The new oncological approach is that chemo needs to be saved when there is a mass or evidence of cancerous activity that can be traced via scans. 

    To just flush chemo through his body is not a guarantee that it would work....and you could lose the ability for that chemo to be effective should you need it at a later date.

    Those dilation issues don't sound too fun....hope they sedate him for that...and best of luck there.

    Watch and Wait is really not a bad option.....I've learned over the course of my stuff, that it really is a valid option...he'll be in tight with the scans, so the minute they see something pop up.....

    As for scans, since he is freshly out of treatment, I would have thought they would have put him on a 3-month CT scan cycle for at least a year....PETs are not usually done as routine, unless CT reveals a mass.  Although, my very first onc used to order 4 a year for me to go with every CT....but I know why he did that...and it wasn't on my behalf. 

    Then after a year, they would probably graduate him to every 6-months for the next year....and then they might move him to once a year.....but that's going to take guts to buy off on that one. 

    Until he shows clear for awhile....I'd hedge my bets between 3-6 months. 

    When your onc returns from vacation...I'm sure they will concur.

    Enjoy your summer after you get the dilation fixed...and enjoy the down time from cancer:)

    Great avitar Craig. It took

    Great avitar Craig. It took me a minute to get it but that is something we can all relate to here.

  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    #8
    Hey Jen. I think a scan
    Hey Jen. I think a scan every 3 - 4 months is a good idea. My thought re chemo is wait until he needs it. IF he needs it. If his body gets used to maintenance chemo, it may not work for him when and if he really needs it. Nice CEA. How is he coping with the ileostomy. Is his heart really set on reversal?
  • jen2012
    jen2012 Member Posts: 1,607 Member
    #9
    Sundanceh said:

    Jen

    Talked to the new onc about this yesterday....

    His theory is much like my regular onc's......no visible tumor = no chemo.

    Especially true if he got CLEAR margins from the surgery....

    The new oncological approach is that chemo needs to be saved when there is a mass or evidence of cancerous activity that can be traced via scans. 

    To just flush chemo through his body is not a guarantee that it would work....and you could lose the ability for that chemo to be effective should you need it at a later date.

    Those dilation issues don't sound too fun....hope they sedate him for that...and best of luck there.

    Watch and Wait is really not a bad option.....I've learned over the course of my stuff, that it really is a valid option...he'll be in tight with the scans, so the minute they see something pop up.....

    As for scans, since he is freshly out of treatment, I would have thought they would have put him on a 3-month CT scan cycle for at least a year....PETs are not usually done as routine, unless CT reveals a mass.  Although, my very first onc used to order 4 a year for me to go with every CT....but I know why he did that...and it wasn't on my behalf. 

    Then after a year, they would probably graduate him to every 6-months for the next year....and then they might move him to once a year.....but that's going to take guts to buy off on that one. 

    Until he shows clear for awhile....I'd hedge my bets between 3-6 months. 

    When your onc returns from vacation...I'm sure they will concur.

    Enjoy your summer after you get the dilation fixed...and enjoy the down time from cancer:)

    Hi did get clear margins

    Hi did get clear margins Craig.   So hard not to stress - I'm thankful he is doing as well as he is, but...

    Thanks for taking the time to calm me down when you have your own worries - I appreciate it!

    I'm going to email the onc and see what she says about getting him scanned.

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #10
    Chelsea71 said:

    Hey Jen. I think a scan
    Hey Jen. I think a scan every 3 - 4 months is a good idea. My thought re chemo is wait until he needs it. IF he needs it. If his body gets used to maintenance chemo, it may not work for him when and if he really needs it. Nice CEA. How is he coping with the ileostomy. Is his heart really set on reversal?

    Yeah he really wants the

    Yeah he really wants the reversal.   We've been putting off any summer plans waiting on the damn surgeon, but finally decided we would just decide what/where/when we want to take vacation and tell the docs we are gone that week.

  • danker
    danker Member Posts: 1,276 Member
    #11
    jen2012 said:

    Yeah he really wants the

    Yeah he really wants the reversal.   We've been putting off any summer plans waiting on the damn surgeon, but finally decided we would just decide what/where/when we want to take vacation and tell the docs we are gone that week.

    I too wanted the reversal of the ileostomy as soon as possible.  After reversal developed a fistula where the stoma was.  Six more weeks with a bag on the fistula.  But then it healed itself from the inside out.  The surgeon was amazed that she didn't need to fix the fistula.  I have now been NED 3 years, living a normal(???) life.  Good luck to you both.

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