Getting a straight answer from Dr.

My wife has Stage 4 retroperitoneal sarcoma with metastasis to her lungs. She as undegone surger, radiation and now is undergoing chemo. The Oncologist has stated each time we see him that the chemo is shrinking the primary tumor and the cancer sites in her lungs are VERY small. She is very weak and failing to bounce back after her chemo sessions, but is able toeat a little after a week following the chemo. We have met with the Radiologist and reviewed the CT scans. His opinion is that the chemo is NOT working. We are at a loss as to how to address this with her Oncologist. He and his staff do everything to avoid a direct answer. I ahve great reservations to asking the Oncologist directly about a prognosis as my wife is intelligent and does nto seem to want to ask this question. Ideas? Should I try to get a face-to-face with the Dr and bluntly ask (after all he iw working for us!) I have made a promise to my wife that I will not hide andything from her.

Hi,

You definately have a right to know what the prognosis is.  Working or not!  take the blunt approach.  Let this doctor know you mean business.  The CT scan would show the internal makings of what's going on with the cancer.  How does the oncologist know the primary tumor is shrinking if he's not looking at an image of it?  The answer is:  he wouldn't!  Be blunt, he'll get the bigger picture quickly that way! 

My 90 yr. old Father has been doing radiation for a desmoid sarcoma in his neck.  Just recently asked the doc if it were helping to reduce the size of this tumor.  He said, "no."  I haven't told my Dad yet.  What he did say to my Dad was that radiation could work after cessation of sessions.  How's that to be?  Not working while they're irradiating, but could work when they're not.  Doesn't make sense to me.  Anyone got answers for that?  Guess I need to get blunt myself.  Good Luck!

Hi Snappybuns,

As it was explained to us, the theory is that radiation continues to 'cook' (sorry, that's the word that was used) for some time after the actual treatments have stopped.  So it is conceivable that reduction of your Father's dermoid sarcoma could occur after the radiation has ended.  Hopefully, that is what will happen for your Father.  Good luck.

Joan L

What an interesting internet name, "snappybuns".  Must have an interesting reason.

Before I retired I was a disability rating specialist for the Veteran's Administration.  This is a non-medical professional position in which we read many, many medical records and examinations and matched them with the law and assigned a percentage of disability if we were able to establish a relationship with it beginning in service or established entitlement to a non-service connected pension for veterans.  You know the old saying, "a little knowledge is a dangerous thing."

Thanks for the advice and I will attempt to confront the Doctor.  The main problem I have is getting to the Doctor without my wife being present and I am not sure she is ready to ask, "THE QUESTION."  I have asked the nurses and the Clinical Social Worker to get me an answer from the Dr and both say, "ask the Doctor at th next visit."

When and how do I just say, "answer the question or we'll be forced to go elsewhere"?  I have friends that are Doctors and they all say this Doctor is the best in the State for sarcoma.  I'm worried that if I give him an ultimatum, I will be told that if I do not trust him, go elsewhere. In the past he said that it is jsut impossible to answer the question as to wheterh or not his treatment can cure my wife.

I spoke at length with the Clinic's Social Worker by phone yesterday and all I was able to get from her was that I am going through a phase of pre-grief for my wife.  She told me bluntly that the Dr. will not offer a estimate of life expectancy unless my wife (the patient) asks or the end is near.

Thanks for the reply,

George

PS, now if I can just learn to type without spelling and typo's on the internet).  In the past I was able to use the spell check as a typo check.

I know all too well the problems that arise from cloudy (or conflicting) opinions from doctors. My wife had synovial sarcoma. It was resected last April and was followed by six weeks of radiation. Her radiologst said that she wouldn't need to be scanned again for six months. Yet her oncologist told her three months. So far it has been five. Three weeks ago she developed a tender area near the original site. This week she ban walking wiht a limp. Yet she still thinks she's got another month to be checked out. I've been begging her to go in. I've had her oncologist give her a call. I've enlisted the help of family and friends, but so far the most progress I've made is for her to put it on her "to do" list. I am dealthy afraid that waiting will kill her.

If your wife doesn't want to hear what's going on, then you need to know. Find out all that you can. Share the information with everyone who cares about her. Have each one of them call her every day if necessary to go get the treatment she needs. Avoidance won't make anything go away. It never does.

I've never before been a religious person, but I want to say with all my heart, God bless you. God bless your wife.

Do you mind if I ask where your wife is being treated?

My husband has been diagnosed with this type of cancer. Unfortunately his first surgery was done in NJ and surgeon did not get clear margins around tumor.  He is being treated at Sloan Kettering in NY. Had metastisis to lungs had surgery last year and now getting ready for surgery to primary lesion on the 16th.  Dr. told us from beginnning chemo does not work on this cancer and radiation could be dangerous to other vital organs in this area.  I have searched and searched on the internet for more info on this disease.  Surgery appears to be only help.  Please write back and let me know how you and your wife are doing.  I would love to share as much info as I can with you from our surgeon.

Sue

 

Sue, my wife is being treated in Little Rock, Arkansas.

 

George