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airborne72's picture
airborne72
Posts: 281
Joined: Sep 2012

Everyone:

On 14 August I completed my neoadjuvant chemo/radiation.  On 18 August I had a CT scan.  Yesterday I met with my medical oncologist to discuss the results and the future.

The CT indicates NED however the plan is for me to meet with a surgeon this Friday to discuss resection surgery.  That will be followed by 6 sessions of Fu5(?).

Here's my question...why do I need the resection if the chemo/radiation eradicated the tumor?  Assuredly, I will meet with the surgeon on Friday but I would like your opinion before I blindly ask a dog if it is hungry (ask a surgeon if I need a surgery).

Jim

Annabelle41415's picture
Annabelle41415
Posts: 6694
Joined: Feb 2009

Mop Up Chemo they call it. They might have eradicated the tumor but their might be some cells that might have gotten loose from the surgery.  They actually do the mop up chemo to eraticate any cells left over that could have spread.  I'd talk to the doctor and see what the recommendation is.  It's a good idea depending on the stage and location.  Good luck.

Kim

mozart13
Posts: 118
Joined: Nov 2016

that approach is standard procedure , chemo/rad, surgery than chemo.

I had rectal cancer, was eradicated by chemo/rad, so my surgeon suggested wait and see approach, no surgery, I agreed with it, started folfox in April this year to wipe out any microcell if any.

Good luck to you!

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

Congratulations on your amazing test results.  I would love so much to hear this in the coming weeks.  I have a CT scheduled for 9-18.  Anyway, the necessity of radical surgery is in question.  Our lives will be forever changed.  I sure hope you can avoid or delay surgery.  Please keep us apprised.

Personally, my tumor is very large and I'll be lucky if it shrank significantly.  I am planning for the surgery as of now.

NHMike
Posts: 214
Joined: Jul 2017

Congratulations on NED showing up. I think that the other stuff is to make sure that NED stays around. Good to hear from you BTW. I've been really busy with life the past few days and less time for forums. I'm a bit surprised that you got a CT scan as I haven't had anything like this ordered after I was finished. There's a kind of limbo between Chemo/Radiation with a handoff from the Oncologist to the Surgeon. I personally think that a scan would be a good idea to see how much of the tumor remains, if any or if there has been spread or infiltration.

My Oncologist said that the combination of Xeloda + Radiation should kill anything related to the tumor but I'm not so sure and here your oncologist ordered a scan. Was that because it's standard procedure or did you ask for it?

I still have pieces of it coming out. They're small and usually with a little blood - I assume that they're getting pilled out of the attachment point. I can tell the difference because it's usually gas that forces the tumor pieces out and there isn't the pain that comes from BMs.

 

 

 

airborne72's picture
airborne72
Posts: 281
Joined: Sep 2012

Thanks everyone for your comments.  I am indeed very thankful for the eradication of my tumor (as far as a CT can detect).  My concern is whether or not a resection surgery is necessary in addition to mop up chemo after that.  I do not want to let this creature rest and recover so I am willing to submit to surgery and more chemo to absolutely "kill it."  But, I want to be sure that I am following standard practice.

Mike: believe it or not, I still ocassionally pass small pieces of tissue.  Bye bye Felicia (tumor).  The CT scan was ordered by my medical oncologist - not me, my rad oncologist nor my surgeon.  He took and continues to assume the lead in this project.

I had concern about that limbo between oncologist and surgeon, so I specifically asked about and discussed that situation with my oncologist on Monday.  He referred me immediatly to the surgeon and on Friday of this week the surgeon and I will agree upon a course of action.

If I could walk (run) away from this I would.  However, if a resection is prudent and this is the optimum time to do it, then I want to know that and I want to make the decision - this Friday!  Bedside manner be damned, I do not care about a doctor hurting my feelings.  I want to know the facts bearing on the problem so I can make an informed decision.

I'll let everyone know the outcome from that consult on Friday afternoon/evening.

Jim

Annabelle41415's picture
Annabelle41415
Posts: 6694
Joined: Feb 2009

My tumor shrunk from a nickle to less than a ball point pin by radiation/chem and had my whole rectum removed because they recommended that due to possiblilty of it reoccuring again.  So I've got no rectum but a J-pouch, and I'd do it again to have it completely removed.  I'd not want the possibility of it regrowing again so why not take out the whole area to make sure you have gotten it all.  They will check for clear margins and if you have that, you are in a good position.  Usually resection occurs before mop-up chemo.  Wishing you the best.

Kim

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

My surgeon ordered a CT scan prior to doing surgery (after chemo & radiation). My Oncologist acted like this was part of the protocol and timed the scan 2 weeks before surgery.  Surgeon will also do a quick sigmoid a few days after the CT. I am glad they will look at it to assess progress.  

I feel like the tumor has been sloughing off for months.  I just can't know for sure.  It was so large, I don't anticipate it being super small.

I am looking forward to hearing how this unfolds for you, Jim!  

darcher's picture
darcher
Posts: 298
Joined: Jun 2017

  Just finished the first phase of radiation/chemo myself this past Monday.  28 sessions.  I got a card and a couple cookies as a going away present.  A nice gesture on the part of the hospital staff and they said I was one of the very few who didn't go to pieces on them at some point.  Maybe on the outside I seemed bubbly and all smiles but that was necessary to avoid the inner struggle this created. I kinda miss them now that it's been a few days of not having to go in. 

 For the past few weeks I've been passing what appears to be small bits of tissue as well.  I'm still constipated so I don't know for sure if it's all gone or not.  I've got a PET scan in a few weeks so we're back to waiting again.  I was also told there would be more chemo after surgery and the implication is there is no option for not having surgery.  It's part of the process.  As long as it works and I don't end up with a perm bag I'm ok with it.  I had that discussion with the doctor and he assured me that since it's as far as it is away from the rectum that a colostomy bag is not on the table as an option.  I just hope they were completely honest.     

 The talk I had with the Chemo doctor about the difference between what we go through versus someone with say breast cancer was a surprise.  I like how they hold details like that back until after it's done.  He told me that the treatment I got was generally more severe than what the average breast cancer patient gets.  3000 mg of xeloda and daily radiation was a tough road to stay on but age, health, and attitude played a role.  I didn't get much in the way of the usual side affects from xeloda either.  No Neuropthy, very little nausia, and no diarreha.  Constipation was the one lingering affect I still have but Senna S seems to take care of it.  Sleeping is a problem.  Can't seem to stay zonked out the whole night.  Melatonin works for about 3 hours and then I'm awake again.

 I think they realize that even if a CT or PET scan says you're clean it is limited by the number of cells it takes to indicate a positive result.  If I recall, if the count is under a million in a cluster it's invisible to either test. Question is, how many does it take to put us back in this hell.

 

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

Hi, darcher.

Good to know another person with timing similar to mine & others here.  I am so sick of being constipated and not sleeping a full night.  THC oil helps me sleep but only for 4 or 5 hours max.  Senna cramps me up so bad...I'm usually a mess the next day after I take it.  At this point I am looking forward to the relief a temporary ileostomy bag will bring.  

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