Frustrated with Doctors

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Abby
Posts: 18
Joined: Mon Aug 21, 2006 5:22 pm
Location: Kansas
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Frustrated with Doctors

Postby Abby » Thu Sep 28, 2006 4:47 pm

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

missjv
Posts: 1416
Joined: Tue Sep 12, 2006 10:38 am
Location: FLORIDA

Postby missjv » Thu Sep 28, 2006 8:11 pm

hi abby,
im sorry your husband is having so much trouble. i would question everything doctor says and get more opinions. did lung nodules show up after chemo? or were they there before chemo? i was diagnosed stage 4 back in june and my 1st onco basically told me i had an incurable malignancy and put me on chemo and told me thats how i would live until chemo quit working and then that was it. well i got pissed off and went and got another doctor who is very aggressive in my treatment because i am 40 i have a young daughter and my colon cancer was a 1 1/2 mm polyp i did not have a large cancerous tumor i did not need colon removed, i do not have any postitive lymph nodes mine got to my liver through blood, i have 3 very small lesions on my liver that are to be removed by surgery here shortly. my point is my first doc never mentioned to me that surgery to remove cancer from my liver was even an option and could be curable since my cancer is so small she just automatically gave me a death sentence, if i did not get another opinion and do research i would have never known that there were options available that could save or at least prolong my life. please go get another opinion because if that is metastatic cancer in your husbands lungs it is going to spread, it is possible to also remove lung tumors from colon cancer. good luck.

missjv

Abby
Posts: 18
Joined: Mon Aug 21, 2006 5:22 pm
Location: Kansas
Contact:

Tired

Postby Abby » Thu Sep 28, 2006 9:09 pm

I am doing the best I can and I am going to get a copy of all the radiology reports from his oncologist and go over them myself, but sometimes I get frustrated with the lack of concern especially with primary care physicians. It seems often they say talk to your onco and then the onco says talk to your primary.
I am up for the battle because I love my husband, but I am getting tired.
I wish we could just take a vacation from cancer as I am sure all caregivers and survivors feel that way.
His onco I was real impressed with and my husband made the final decision to go with the one he see now. We saw 3 onco and went to MD Anderson before deciding on the one he has.
Th nodules in his lungs appeared before chemo, but we were under the impression they disappeared and it was not until his CT in June did the 5mm nodule appear.
Sometimes I think that I become obsessed about the cancer and monitoring it. Knowledge is my coping skill.

northern lights
Posts: 127
Joined: Tue Mar 21, 2006 10:48 am
Location: Yellowknife, Northwest Territories

Postby northern lights » Fri Sep 29, 2006 1:20 pm

Knowledge is not only your coping skill it is power. Power to make informed decisions. Good for you for keeping track of the medical info and highlighting descrpancies. Don't let anyone discourage you and keep fighting. Your husband is a lucky man.

Good luck.

Sharon

missjv
Posts: 1416
Joined: Tue Sep 12, 2006 10:38 am
Location: FLORIDA

Postby missjv » Fri Sep 29, 2006 1:28 pm

HI,
YOU NEED TO KEEP MONITORING YOUR HUSBANDS SITUATION AND DON'T BE AFRAID TO QUESTION THE DOCTORS. I WOULD DEFINATELY GET ANOTHER OPINION ON HIS LUNGS. WHERE ELSE DOES HE HAVE CANCER TO BE DIAGNOSED STAGE 4? IF THEY ARE METS ON HIS LUNGS FROM THE COLON THAT IS NOT GOOD, I HAVE METS ON LIVER AND THAT IS NOT GOOD. ANYTIME A PRIMARY CANCER MOVES TO ANOTHER SPOT IS BAD NEWS AND NEEDS TO BE DEALT WITH RIGHT AWAY FOR THE BEST CHANCE OF CURE OR MORE LIKELY BEATING IT BACK FOR A WHILE. TAKE CARE.

MISSJV

Holly
Posts: 537
Joined: Thu Sep 08, 2005 11:06 pm

Wow

Postby Holly » Mon Oct 02, 2006 7:14 pm

Abby,

This is a classic case of what I like to refer as "checks and balance." You noted 4 items on your less than desirable list (what you do not like about your husband's physicians). Correct? I can tell you that unless the desirable list far outweighs the less than desirable list, I would have fired both physicians. Not negotiable. Though frustrated with the PCP advising you to talk to your oncologist. That was the only sensible thing. Unlike a PCP, one does not have the luxury to simple consult with an oncologist. You see an oncologist after diagnosis of cancer. At such a time, the medical oncologist then becomes the manager or traffic director if you will of the patient's health care. I am not a fan of PCPs and I consult with my oncology team about all my medical related issues. I can appreciate that many may not share my opinion.

There is no doubt that no physician can take as good of care of your husband as you can.

Any doctor, who you feel blows off your care, should be fired. This is not negotiable. You have valid questions that you should demand answers for. I would encourage you to be PROACTIVE in the management of your and your husbands health care.

Any doctor that gives you the impression that he/she is being put out, should be fired. Example: In my records, a PCP wrote "Holly is here with that nausea thing again." I fired him. That nausea thing was "stage IV colon cancer." It is unfortunate that your husband is experiencing such pain but again, I would encourage you to demand answers to your valid questions.

Under HIPPA, it is your husband's right to a complete copy of his medical records. May I suggest that you be specific in your request. Upon your request, ask for a complete copy of medical records to include but not limited to: Hospital records, physician and nurses notes, H&Ps, laboratory reports, medication reports and diagnostic imaging reports and a CD copy of the films. You are correct that there is a difference in 5 mm and 6 mm. I would encourage you to ask for an explanation and one that you are completely satisfied with.

Abby, I hope this helps!

Holly

Guest

Re: Wow

Postby Guest » Tue Oct 03, 2006 6:19 pm

Holly wrote:Abby,

Under HIPPA, it is your husband's right to a complete copy of his medical records. May I suggest that you be specific in your request. Upon your request, ask for a complete copy of medical records to include but not limited to: Hospital records, physician and nurses notes, H&Ps, laboratory reports, medication reports and diagnostic imaging reports and a CD copy of the films.
Holly


Thanks, Holly. This is very helpful information. What are "H&P"'s?

Holly
Posts: 537
Joined: Thu Sep 08, 2005 11:06 pm

Wow

Postby Holly » Tue Oct 03, 2006 6:36 pm

An H&P is a History and Physical.

Holly


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