re: Mark back on the same study

musiclover

This seems unbelievable but after the visit with my friend Mark's new oncologist - where he was told that the study he was on was not working and that he needed to discontinue it immediately AND to decide in one day which new treatment he wanted - another unknown trial or "standard treatment" (still don't know that might be for stage IV rectal cancer) - the doctor had a change of heart. Apparently my reaction and multiple questions during the appointment prompted the doctor to meet with a radiologist to go over the last CT scan tooth and nail (seems odd he didn't do that BEFORE scaring the wits out of Mark!). Apparently the news wasn't as bad as the doc led us to believe. Yes, some nodules have grown but some have shrank in the lungs. The nodules in the liver which showed no sign of change in the written CT report have apparently shrank some, too.

My first reaction to this news was anger - this guy had Mark jumping through hoops, had me on the phone with his old oncologist begging for some input. Luckily she asked us to come see her right away, looked over the new trial and had some supportive, helpful suggestions. Next morning when the tables were turned back 180, she was on the phone with the new doctor offering her thoughts. SHE is wonderful.

My new reaction is still suspicious but the Dr. spent ample time with Mark yesterday explaining what happened and apologizing profusely. Mark witnessed his behavior with other patients which appears to be compassionate, he seems to trust him and has forgiven the incident. At this point I'm just going to butt out. Part of me wants this doc reprimanded for putting an already distraught cancer patient through such an ordeal but the other part just wants Mark to settle into a treatment that he trusts and makes him better. So far this seems to be it.

Thanks so much to all that were there for me. Hopefully someone can get something out of this experience. What I learned - keep asking the questions and go with the instincts - I thought something was fishy and it was. Doctors, once again proved, are not always right and lives are involved here so never be intimidated. Most important is to have someone to watch your back - a friend, family member, another doctor. Unfortunately not everyone has that and it is so needed.

Kanort

Hi Kathryn,

I'm sorry I missed your earlier post, but it sounds as though Mark's issues have resolved, but not without anguish and worry.

You are so correct in suggesting cancer patients have an advocate. A couple of weeks ago I insisted on a colonoscopy which my gastroenterologist felt was unwarranted. To his surprise, five polyps were found and excised. One had precancerous cells in it. I shudder to think of what would have happened if I had followed his recommendation of waiting for three more years. We know our bodies.

I will continue to keep Mark in my prayers. He is blessed to have you on his team.

Hugs,

Kay

CanadaSue

HI,
Hope all goes well for Mark.

In Canada we are so lucky it is not one doctor who decides your treatment, but a round table of doctors go over every case file, and they all decide on a treatment.

My prayers are with you and Mark

Sue