Why No Surgery?

 My husband was diagnosed  with  stage 4 colorectal cancer with mets  to the liver and  lymph nodes (3) November 1st 2007.  The Doctors here gave him 2 months to live without chemo, no surgery! They told us that he couldn't have surgery because it had spread to his lymph nodes and that the rectal area was to difficult an area to operate on ??? It is located at the turn of the large intestine into the rectal area. He was started on chemo 11/21/07 Avastin, Oxaliplatin every 2 weeks 7 hour treatment and xeloda twice a 2 for 7 days. I have been reading everything I can get my hands on and I just can't understand why no matter how many times they tell us they can't operate, why they can't??? His Doctor told me to stay off the internet because itis full of lies and he goes to conferences and is trained to know these things!  He has several tumors in his liver and we were told that the liver can not be operated on. Does this seem right? Am I asking for something that can't be done? I've been reading the posts and it seems that all of these things are possible. This is the second Doctor we have seen the first one told us that he only had 2 months 6 at the most and gave him 500mg vicodin!  The new Doctor is in the same practice there is no choice since all the onc in this town are in the same practice. I called the Anderson medical center in Houston they said they would have to see his records then the board would  review his case on whether to treat him or not then it could take months to get him in if they do agree on treating him, then I called Mayo in Minnesota they told me that he need to start the treatment then call back in January and they would get him in, Im just worried that he will be to far gone by that time. Any suggestions?BTW we live in central IL . Thanks Michelle  

micelle- did you try Barnes Hospital or St. Louis University - all located in St. Louis-  if you are in central Ill.  St. Louis can't be to far from you. They are both big teaching hospitals

My husband goes to Mo. Baptist which is a BJC Hopstial (part of the Barnes group) 

good luck-

 

On 12/10/2007 witeludesme wrote:

 My husband was diagnosed  with  stage 4 colorectal cancer with mets  to the liver and  lymph nodes (3) November 1st 2007.  The Doctors here gave him 2 months to live without chemo, no surgery! They told us that he couldn't have surgery because it had spread to his lymph nodes and that the rectal area was to difficult an area to operate on ??? It is located at the turn of the large intestine into the rectal area. He was started on chemo 11/21/07 Avastin, Oxaliplatin every 2 weeks 7 hour treatment and xeloda twice a 2 for 7 days. I have been reading everything I can get my hands on and I just can't understand why no matter how many times they tell us they can't operate, why they can't??? His Doctor told me to stay off the internet because itis full of lies and he goes to conferences and is trained to know these things!  He has several tumors in his liver and we were told that the liver can not be operated on. Does this seem right? Am I asking for something that can't be done? I've been reading the posts and it seems that all of these things are possible. This is the second Doctor we have seen the first one told us that he only had 2 months 6 at the most and gave him 500mg vicodin!  The new Doctor is in the same practice there is no choice since all the onc in this town are in the same practice. I called the Anderson medical center in Houston they said they would have to see his records then the board would  review his case on whether to treat him or not then it could take months to get him in if they do agree on treating him, then I called Mayo in Minnesota they told me that he need to start the treatment then call back in January and they would get him in, Im just worried that he will be to far gone by that time. Any suggestions?BTW we live in central IL . Thanks Michelle  

Michelle,

 

First of all, did the oncologist tell you he is not operable?  From your post, that is the way it sounds.  The onc is NOT the one to tell you that determination; it is the surgone.  I realize that you live in a small town, but you need to get the heck to a bigger city-Chicago has some good ones (pardon me but I am not good at my geography) and find a colorectal surgeon.  DO NOT SETTLE FOR A GENERAL SURGEON no matter how many times they may tell you that they CAN do the surgery.  You were informed correctly on one aspect and that is that rectal surgery is more difficult that many other higher up colon surgeries.  The operating field is definately more limited and the space, particularly in a male, is quite confining.  As for the liver mets, many many people have been told that the mets were inoperable only to have the chemo shrink them and then have a liver resection.  Since I am not sure exactly how far up the tumor is, it is also possible to have radiation done that will help with shrinkage and better local control all with the intention of having surgery done after those treatments are over. 

Don't wait.  Find a colorectal specialist.  If you need help, email me at weisssoccermom@hotmail.com and I can give you some links to websites that will help you locate a specialist.  As for worrying about getting into Mayo in January, as long as you are on the chemo that you have stated you are on, it should be fine.  There are no guarantees with chemo, but most people experience shrinkage from the tumors.  While he is on the infusion is he also getting 5FU?  You didn't say, but I am guessing that he is.  If not, and I would most definately find out, ask why not.  At the very least, he should be getting an infusion of 5FU along with the oxy/Avastin and then the Xeloda. 

Rest assured that the only other treatment he could possibly be getting right now that he isn't is the radiation.  Get an appt made with Mayo for January, stay on the chemo for now and the best thing that you can do in the meantime is to try and be as positive as possible.

Did your husband have CT scans, endorectal ultrasounds, bloodwork, etc. already?  Make sure that you get a copy of EVERYTHING, and I mean everything that he has had done up until now.  Keep it for your records.  While you are waiting, contact Mayo and make sure that all his record are faxed to them NOW. Don't wait until just before the appointment.  Do it now and follow up with your oncologists office to make sure that it is being done.  About two weeks before your appt with Mayo (if you haven't made one do it now!) call them up and make sure that they have all the records.  Go to the CT place and be proactive.  Provide them with the Mayo fax number and have them fax the records.  Same thing for the ultrasound.  Don't depend on your onc's office to do this for you.  If you have seen a local surgeon, get all the copies of his records also (for you) and have them fax to Mayo also.  Make sure that you have all the copies of your husband's blood work, particulary his CEA level.

As for your onc telling you to stay off of the internet-well, what a jerk!  My onc is wonderful.  I had very early rectal cancer and wanted a particular surgery-one that was not the "standard of care" and I was constantly on (and still am after treatment) the internet researching doctors who did the excision, their results, studies, you name it.  My onc was not at all put off by this but rather felt that it was good that I was being proactive in my care.  Same thing for my surgeon.  She was very pleased that I wanted to know all the ins and outs of the different types of surgeries, treatments, etc.  If your onc is threatened by this, get a different onc!  This is your husband's life, not the oncs.  You need to remember that!  It is abhorrant to me that this onc is coming across this way.  Don't despair, not all docs are like him/her.

 So, right now, you are doing something to fight this.  I know this sounds easy for me to say this, but try and relax.  Chemo is hard enough without all the added stress.  You will undoubedtly have a lot of uphill battles ahead of you and there certainly is a lot of unknown here, but all is not lost and it is not the doom and gloom that has been presented to you.  If you don't have a definite appt at Mayo, make it TODAY.  Then keep you the treatments, try and stay as healthy as possible, do some research, formulate a page full of questions, start your husband's chemo notebook (get a normal 1" or so school binder) with all your husbands medical records so far (remember they are his and he has a right to them so don't let anyone tell you he can't have them!) and above all, try and stay postive.  A good attitude is paramount in this fight.  One final thought - Let go and let GOD.  This is a perfect example of right now doing YOUR part in all of this and then letting GOD do His part.  You are all on the same team, so work together and believe in the miracles that can happen - Mayo is the first such example.

Michelle, you have a lot of work ahead of you today, so I will shut up and let you get started.  Call and get a definitive appt time, get a fax number for records to be faxed to, get the ball rolling on getting those records faxed to Mayo, start your notebook and then start writing questions down.

Please let me know how things are going.

 

Jaynee

Jaynee,

Thank you for all the information I plan on starting all of this tomorrow, we had a set back this morning or I should say it has been an all day event. I woke up to my husband screaming in pain his left leg was numb and hurting so badly that he had to slide down the stairs. I had to call an ambulance and head for the hospital. He had a blood clot in his left thigh and while we were in the emergency room  the right leg started hurting because he had more blood clots behind the knee in that leg. I couldn't believe some of the things I saw while I was in there the nurse accually got out a 3 inch instruction book so she could figure out how to preform a test then the doctor came in and said he could eat ice chips ( while on chemo )!! Well he ended up having a three hour surgery and now they don't know if we can continue the chemo. I just got home from the hospital and plan on starting all of this today I thank you so much for all the info you have given me and at just the right time. Like he said to me befor I left this is all moving to fast!! I am not giving up after all this is my husband and we still have alot of living left to do together!

Thank you, Michelle

Michelle,

 First of all, I am so sorry that your husband had to go through this part of the cancer treatement.  Yes, I said this part of it.  Blood clots are not an uncommon side effect of cancer in general, but the risk of them increases when a patient is on chemo.  I was totally unaware of that when I began my cancer journey and only found out about it when I, too, developed blood clots.  Of course, after the fact, I was told that the mere fact of having cancer predisposes one to more blood clots (the medical community does not know why but think it has something to do with the way the cancer actually affects the blood??) and then you add chemo to the mix and a patient's chances increase for blood clots.  In my case, we added a new birth control pill to the already precarious dynamic and wham, I was hit with a total of about 16 blood clots in my right arm.  Most of them were tiny surface clots which pose no problem, but I did have one DVT (deep vein thrombosis).  I also had goten a staph infection so we will never know if the clots were the cause of the infection or the other way around.  Doesn't really matter.  They will undoubtedly give your hubby either heparin or Lovamax (not sure if I am spelling that correctly) or something similar while he is in the hospital and then coumadin in pill form when the levels of heparin in his blood get up to where they need to be.  This will keep his blood thin and prevent further clots. 

Please don't get too worked up over this.  I am not trying, in the least, to minimize what he went through, but he is certainly not the first and unfortunately, won't be the last to get clots from cancer and the chemo.  If your onc thinks this will prohibit him from further chemo, you REALLY NEED TO FIND ANOTHER ONC - NOW!!!!!!!!   Many many people have this problem and can successfully complete their treatments under careful scrutiny.

 

Please keep me informed. 

Jaynee

I'm sorry to hear your story, I can understand alot of what you are going through.  We too have been told that there will be no surgery to my husband's rectal cancer, or to his liver. 

My husbands rectal cancer is so far advanced that the cancer is spread throughout his pelvis, not just within the rectum.  He has a 'scattering' of the cancer all over the peritoneal wall.  We have spoken to medical oncologists, general surgeons and colorectal surgeons, and they have all told us the same thing - surgery would just decrease his quality of life and not buy him any time.

 We've been told he has 6-8 months without treatment - 50% chance of making it to 20 months and 5% to five years.

It is so hard to hear of all the stories of people with this disease who have had surgery - gone on to have chemo and then become NED.  We have been told not to expect that.  And it is so difficult to accept that!

We have hope that the chemo will shrink all the cancer enough that surgery will become and option. 

Michelle:
Your are forgetting the 1st rule of cancer treatment:

ALL DOCTORS ARE NOT EQUAL!

Do this immediately:

Call 800-FOR-HELP (anytime 24/7 they are there) 

Your questions, concerns, and anxieties will be answered and alternative solutions will be offered. These people are amazing cancer experts with the latest technologies at their disposal, and will offer you a complete 2nd-opinion examination by their excellent staff of reknowned doctors - AT NO COST TO YOU!  They are NEAR you in Zion, IL. Don't wait!

I hate to think what would have happend if we had not made that call.

Dave & Jennifer

ALL DOCTORS ARE NOT EQUAL!

Do this immediately:

Call 800-FOR-HELP (anytime 24/7 they are there) 

Your questions, concerns, and anxieties will be answered and alternative solutions will be offered. These people are amazing cancer experts with the latest technologies at their disposal, and will offer you a complete 2nd-opinion examination by their excellent staff of reknowned doctors - AT NO COST TO YOU!  (Travel expense included).

I hate to think what would have happend if we had not made that call.

Dave & Jennifer