CancerCompass message board discussion started by Sickofitall on 7/4/2008 http://www.cancercompass.com/message-board/message/all,25722,0.htm Sun, 23 Nov 2008 00:00:00 GMT Sun, 23 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Most of you know the story:Husband stage 3-4 terminal ileum cancer that has been treated like colon - because there is not a regime for terminal ileum (small bowel) cancer that he has.  This is first recurrence after successful surgery and treatment ended March of 07.  This mass was found inoperable during exploratory surgery May 29 due to attachment to femoral/ileac artery.  Very aggressive and growing quickly, yet not metastasizing beyond original point.  Brian on Monday starts a 5 week regimen of combo daily oral xeloda (good thing we have insurance - saved over $3400 on the rx) and daily radiation treatments.Here are two statements the oncologist has made that are causing me worry:On our first visit for this recurrence the onco walked in and made this unsolicited statement:  "We are not going to talk quantity, you are young and we will fight this."  We have not ever asked for quantity in terms of wanting to know years, months, etc.  We just keep assuming this too shall pass.  (I know, naive, but blissful)There will be a break after the 5 weeks for rest and CT/PET scans.  When I asked how long the break would be "a month or two?"  He replied, "Oh no, we don't have that luxory."  Last time it seemed that no one was in the same hurry we were...now we don't have the luxory? I haven't questioned him when he has made these statements, because Brian has been present and Brian has the attitude that life goes on and we will beat this... I want him to keep this positive attitude.  I haven't had a visit with the onc on my own.What would you all do?  Remain blissfully naive?  Call the onc and ask?  Question the onc in front of Brian?I will be out of town for the next two onc visits.  I kind of don't want to bring it up with the onc while I am gone and then have him talk to Brian while I am out of town.  Thanks in advance, I know you all will give good advice,LeeAnne Sickofitall Fri, 04 Jul 2008 00:00:00 GMT Hi!I understand you not wanting to ask those questions in front of your husband... I sadly experienced with my Mom who we lost last year to colon cancer and now my dad has cancer too.  I always call the doctor and have him return my call to me and I specifically ask "those" questions... I know doctors are not God, but they will provide their professional insight and will be honest with you if you ask.  My Mom's and now my Dad's doctors always provide hope to beat... and there is always hope and God's will.  THe last thing I want to do is have someone give up, when there is fight to be had, so I feel there is nothing wrong with asking outside the room... however I also know if my Dad decides to ask those questions to the doctor, he will honestly answer... in fact in the begining the doctor said we have a fifty/fifty shot.  I do find comfort in know the reality and being able to prepare and then praying for better.  Good luck to you! Msmittens Sat, 05 Jul 2008 00:00:00 GMT Hi - This is Arnold,  If you recall, my situation was exactly the same as your husband.  They did a PET scan one month after the Chemo/Radiation, etc.  The tumor was exactly in the same place.  I think the Doctor is just being on the safe side and plans to get the Scan as soon as possible.  They waited a month after mine because of the radiation for 5 weeks.    The sense of urgency is to your benefit and I don't believe you will want to wait.  The radiation and chemo worked and in the Feb08 Scan the tumor was gone.  My most recent Pet two weeks ago showed no mets or malignancies!!  Keep the faith and please keep us informed. GOD BLESS AND GOOD LUCK. Arnold Sat, 05 Jul 2008 00:00:00 GMT Sickofitall -- My husband was diagnosed with stage IV colon CA w/ liver mets mid May this year.  He had surgery June 5 and starts chemo next week.  One thing I have noticed is that although everything (treatment) seems to move forward as I would expect I am constantly getting conflicting statements from the docs as well as having things characterized as "as we discussed" that were never mentioned.  As a former nurse I am able to make good guess at what to expect but I will say that often docs are not the best communicators.Obviously each person is an individual and there are no algorithms that they can plug your data into and give you an absolute prognosis or predict survival or response to treatments but it would be nice to have some consitency in their communications.I suggest you call the Doc and tell him you have gotten mixed messages and would like for him to clarify any misunderstandings you may have. Bonzonie Mon, 07 Jul 2008 00:00:00 GMT agree with all statements....you can ask doc and see what he says--but remember...it is you and your husband's feelings that matter most in all of this. So if you think it is a negative answer coming....why ask, ya know? A LOT of people beat the odds--all bodies and minds are different. Now, if you absolutely have to know...then why not just get some things in place that will help you deal with whatever happens. The doctor cannot tell you what to do in this arena really --I was diagnosed with stage IV cancer in Feb.--and I have children and spouse...so I am getting my will straight, setting up a trust etc. worth doing no matter long any of us live on this earth.Blessings,ellen computerpals Tue, 08 Jul 2008 00:00:00 GMT Part of this is, what is the hospital's policy and what is the law in your state.  Although I wanted to know everything, I'm not sure if I may have been treated differently.  But where I went the policy was everything would be discussed with the patient.  Even when I was in the hospital after my liver surgery and was experiencing complications, all four of my docs asked me questions together and tried to develop a plan of what to do.  I liked this, because I felt I had a partnership into what was going on.  If I had a question, the correct expert could answer my question, instead of waiting for that doc to see me.  I also liked the fact that all of us were all in agreement on how we would treat this.  As a Stage IV colon cancer patient, that is my bias, I would want to know what was being said about me.  I truly advocate for the patient.  It was important that I had faith and hope in my doctors.  Although my friends and family meant well and I appreciated their input, I do not believe in some of the things that they do.  Also, if you don't already, I would highly recommend tape recording all of your meetings.  If you have ever transcribed a conversation, you will quickly see how easy it is to misinterpret something after you've just heard it.  I have tape recorded my conversations and then transcribed them.  This has led to less confusion, it has also let to me not asking the same questions over and over again.Also, it was great hearing what the docs had to say to my family after my surgery.  It was very reassuring.    So I would question the onc in front of Brian.  I always knew if my husband called or e-mailed any of my doctors, because both sides told me.  I'm not sure how I would have felt if I was not aware of what was being said when I was not there.  Probably mistrustful.    Cptmac Thu, 10 Jul 2008 00:00:00 GMT We did will, advanced directives, and a couple of other things before surgery because the surgery seemed so drastic and he had never been under anethesia.  I'm glad we did this because I haven't thought about it since.Also we decided not to get into the "quantity" questions because we know they are making an educated guess. I think the quicker you move with treatments the better no matter what.  Time to recuperate from surgery varies from one person to another but as soon as one is able to move forward with treatment the better. Bonzonie Thu, 10 Jul 2008 00:00:00 GMT Thanks to everyone for your replies.  I haven't decided what to do yet.  I am still out of town.Brian started his combo chemo/rad treatments last Tuesday (7/8).  On Saturday afternoon he complained of chest spasms.  He called the dr. and took nitro pill.  Anyone else have that kind of side effect?LeeAnne Sickofitall Mon, 14 Jul 2008 00:00:00 GMT hi sickofitallMy dad has stage 1V colon cancer and like your husband he has a life goes on attitude to his cancer but in order to maintain that he has to endulge in a fair amount of denial and that is fine if that is his only way to stay positive , unfortunatley there is a reality here and someone has to face it and ask the big questions. i don't know what the rules are in the U. S. but here in the U.K. as long as my dad doesn't mind his doctors can speak to any family member about his condition and teatment . That has been very imortant for us because my dad won't ask questions . I take my dad to all his consultations and he leaves the room after exchanging pleasantries with his oncologist and leaves me to find out how he is doing , at first it is awkward but as a family we have a better idea of what to expect and what to look out for . this is tough on you but wondering what was meant not knowing that can be tougher still . Good luck to you and your husband  . scottaug Mon, 14 Jul 2008 00:00:00 GMT