My husband is 29 and has been living with stage IV colon cancer since Aug. 2005. He had surgery the end of August and post wound infections. Started folfox in Oct. 2005 after several opinions. Finished last treatment April 2006. Since then he has not been the same. He is having an increase in pain and is shown to be anemic without iron supplements. I am looking at this as a way to vent and see if anyone has had these symptoms that might be able to help me out.
Here are my problems with the doctors...
1.They can not take as good of care of him as I can.
2. His primary care physician blew off the anemia signs.
-The way I understand it is that someone my husbands age should not be anemic without some sort of reason (eg. diagnosed disease or bleeding). For some reason since his bloodwork numbers have come up nobody seems to search for the answers. He had an edoscopy done and were told he might have celiac disease, but just got the biopsy reports and they are negative. Shouldn't there be an explaination of why he is not absorbing iron effeciently?
3.Doctors seem to be put off by his pain.
-My husband is overwieght and will be the first to admit it. He has had back pain here and there, but nothing that prevented him form doing activities. He now is awake only for 2-3 hours/day because the pain is so severe. He is unable to lift, exercise or sit and watch a movie. In addition to this his joints are sometimes unbearablly painful. We have seen a pain management specialist, primary care physician, oncologist and have had bone scans and multiple MRIs done. We are scheduled to see a neurologist. There is conflicting information about his MRIs. First we were told there is a T7 vertebrae that has a compound fracture, but then were told that it is an underdeveloped vertebrae. The scans also showed degeneration in the back - signs of arthritis. For some reason the pain managment clinics tell him that there is nothing he can do, but lose weight. We already new he needed to lose weight, but that is hard to do when the pain is so bad. Has anybody experienced pain post chemo that comprimises quality of life?
3. Doctors choosing the information that we get.
There was a spot that showed up on my husband's lung - 5mm. Dr said we just have to monitor it because it is too small to biopsy. He restated that the last CT since finding the spot shows no change. When he left the office I looked at the sheet and it says it is 6mm. There was some other medical stuff that took a paragraph to say what they found. How come out of this information we are only told that there is no change. I am ordering copy of all of his radiology reports to review them myself, but I thought that is why these doctor's got the big bucks. I thought I was doing good with keeping his records up to date, but I am missing something. Does anybody have some record keeping ideas to share?
Thanks for reading,
Abby