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Surgery on hold for iv chemo

Sal1's picture
Sal1
Posts: 3
Joined: Sep 2013

I am very confussed my husband is dx w/satge 3 crc he is also done w/oral xeloda and radiation and instead of going door surgery he is getting a porta cath and will do 6 mo iv chemo then be reevaluated for surgery , they are treating him like stage 4 and I am concerned that the scan that showed lung scarring could that be metastisized crc ? His liver showed no mets he has large lymph nodes  involved and 1 in the r iliac crest area . His cea was 8.64 . I am just worried that this has progressed more then what we are told ,although I do ask they say they are treating him for stage 3 but being aggressive like stage 4 . His tumor has be described as apple core . Any input would be greatly appreciated . 

herdizziness's picture
herdizziness
Posts: 3478
Joined: Apr 2010

help with the stage III vs. Stage IV treatment, since I do not even know what differentiates it (I'm guessing because it's in lymph nodes but not any other organs?

But when it comes to the lungs, I too have lung scarring but that isn't due to metastasized tumors, but probably a childhood pneumonia or high fever scarring.  The tumors in my lung did what they call "calcification" they can see where the tumor was and they show up as calcified when they died, much different then scarring of the lungs, so don't worry about that.

Maybe it's because of the size of the tumor, they seem to have this thing about shrinking them first before operating on them, why this is, someone better informed then me can fill you in on.

I'm sorry this is the best I can do answer wise, but others will chime along shortly with better answers :).

Winter Marie

Lovekitties's picture
Lovekitties
Posts: 2990
Joined: Jan 2010

If I were in your place, I would ask why surgery is being delayed.  There may be a very good reason for it and that will end your confusion.

Different doctors, different patients, different approach.

If you have any doubts about the current treatment plan, perhaps it is time for another opinion...this time with a surgeon rather than an oncologist.

Wishing best outcome regardless of the plan followed.

Marie who loves kitties

lp1964's picture
lp1964
Posts: 896
Joined: Jun 2013

...a similar sutation. I was more like stage 2, large rectal tumor, but no lymph node involvement or metastases. At first 3 surgens told me to have radiation and Xeloda to shrink the tumor. So I went along. Then my oncologist suggested to do 3 Folfox while waiting for surgery. 10 weeks after radiation and all this chemo turns out that my tumor did not shrink at all. Now I'm getting my surgery within 2 weeks.

My suggestion is to get a couple of independent opinion. The mistake I made that I told the doctors what the previous doctor said. Don't do that. Go there like the first time. 

Let the surgeon lead the treatment. Surgery is a more definite treatment then chemo. In my case I had a tiny chance to avoid permanent colostomy and I took it nby waiting more. But I also risked spreading of the cancer. 

Get more independent opinions And wish you the best possible outcome.

Laz

 

 

annalexandria's picture
annalexandria
Posts: 2296
Joined: Oct 2011

Certainly there are lots of us stage 4ers on this board, and I'm pretty sure that we were all given the news upfront.  If I were in your shoes, I would simply call the doctor and ask these questions (or have your husband call, if he feels up to it).  I would guess they have a reason for holding off on surgery...perhaps the tumor is large, and they are hoping to shrink it before operating?  This is pretty common, from what I've seen.

I know this is a hard and scary experience, maybe one of the hardest things any of us will have to go through, but I really have to encourage you (and your husband) to ask your doc any and all questions you might have.  And if for some reason this doctor makes you feel unable to do that, then  consider trying a new doctor.  Many of us have changed oncologists for a variety of reasons, and lack of communication is a big one.  You really need to be able to talk to your doc about what is happening and be an active participant in the process.

On a practical note, I would suggest getting a notebook, and writing down your questions, as well as what the doctor has to say.  It makes it a lot easier to keep it all straight.

Hang in there, and let us know how it goes!

Hugs to you both~Ann Alexandria

Sal1's picture
Sal1
Posts: 3
Joined: Sep 2013

We are going to start with note book , I just think we are very over whelmed . It amazes me how a few words change the I entire meaning of something In his report from sloan Kettering  it states advanced localized rectal cancer ultra sound pathology is t3n1 we know of at least 4 lymph nodes the size of walnuts on both pelvic sides . We are told tumor starts 5 cm above anal verg and goes the length of the sigmoid it is also on the left side . 

RobinKaye
Posts: 93
Joined: Nov 2011

My husband is also Stage 3.  After chemo rad the positive nodes along the iliac had tripled in size.  he had just two rounds of

Folfox before surgery, finishing the next six after surgery. The surgeon was going to attemp to remove the nodes, hard because they are in a tricky area and removing them could cause severe nerve damage. Turns out the two rounds before surgery got rid ooff the nodes or at the very least shrunk them to the point the surgeon couldn't find them. 

Its been awhile so I can't cite the studies but some doctors are suggesting FOLFOX prior to surgery after chemorad and report better outcomes. 

Agree your husband is not Stage 4, the onc would have told you but management of these nodes sooner rather than later is good 

 

Robin

Sal1's picture
Sal1
Posts: 3
Joined: Sep 2013

We have spoken to the drs on our last visit per thre explanation they can tell he is at a level 3 but per msk until they operate they truly can't tell what you are , it is in there experience that with what the scans/ultra sounds etc show this would probably be a stage 4 and they are treating as such , so we are doing the iv chemo now every 48 hrs on then off 12 days days , he is doing well tolerating , I just feel helpless because I want to know its working . Thanks 

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