I'm having my 2nd appointment with my team leader, and one of the lead counselors wants to sit in. I finished radiation in Feb, and they said they wanted to sit in with my next appointment with the radiologist. I told them -No- it's the end of the radiation-and I need to focus on what the doctor is saying and for my doctor to be able to speak freely. Where is privacy and confidentiality in this system? I'm sorry to be asking this again but my original ? and answers were removed. I now have a team of doctors that I like, but I worry if I take in the counselor, that Dr. Bernard might think that I don't trust him. I also don't want anything going on that distracts from the quality of the 20 minutes- like a 3 way conversation. Yet at the same time, this might be a chance to get the counselors off my back. They didn't help me in getting rid of the 1st oncologist that wanted to cut the bone, flesh, skin, eye, and nose out of the right side of my face. I complained-I called the head quarters and complained, They'd say OK you're an important, we're listening to you- don't worry-and I'd call or go up a week later and I still had the same idiot-senile doctor that wouldn't answer questions. This counselor wanted to know who my shrink was and what counseling group I went to. I told him none. He said that all cancer patients need counseling. I told him that I needed an administration that listened to complaints. I'd start politely asking to talk to somebody that had power to authorize a change of doctors. They'd refer me to the chaplain or this guy. I'd go back and say There has to be somebody that does this-and they'd refer me to the head nurse or my nurse navigator. Any I cussed in 7 languages and then used the magic words--lawyer and state health board. I got a new doctor-they said- I don't know if letting this counselor sit in would get these people off of my back. For the release of medical records- I made a blanket form- any doctor and to expire a 100 years after I die. They got mad-U can't do that. I keep picking up new specialist and referrals to specialists- How am I supposed to know the names- This needs to be done until I die-and maybe somebody might want to research this-like the dermatologist. I told them that I made blanket medical releases in the military-I know it's legal- and my family shouldn't have to be trotting up there all of the time-and begging a counselor for a release form. I just don't know if I should contact the doctor and ask him if it would bother him and apologize, or I should let the counselor in-and maybe they might understand that I'm telling the truth-that this nasty thing can get me in 3-4 different ways. I need your advice and opinion.
Will this affect my medical care for cancer?
- 29 Mar 2013 by meyati
- 1 April 2013
- skin cancer, anxiety, pain, basal cell carcinoma, cancer, osteosarcoma, fatigue, anxiety and stress, doctor, medical, radiation burn, radiation therapy, radiation
Added 29 Mar 2013:
The question is about the counselors interfering with my doctor/patient relationship.
Added 31 Mar 2013:
The problem took care of itself. The doctor had the appointment re-scheduled. The counselor can't do much about that one way or the other. Since I'll be out of sight- I should be out of his mind. Gone out of my face- out of my hair---Who says that God doesn't do miracles? I feel light inside-lots of relief. You know, I'd rather be with a horse than a some people. I know that when I taught-I carried this with me unintentionally and irritated some people. I was used to solving problems and telling people what to do. Didn't help that I spent quite a few years as a volunteer with immigrants-doing the same thing.
I am sorry but I did not see your original post or answers as I just logged on the board. Are you in the US? Are you going through the VA medical system?
I wish you only the best and know how frustrating it is when you have many Dr's and specialist telling you what to do and it does not seem like they are listening
One thought... Have you considered drawing up your questions and emailing them to the physician or team lead before the meeting?
I empathize with your frustrations. I worked as an ICU ENT/Plastics surgical reconstruction nurse at Barnes Jewish Hospital, Siteman Cancer Center in Saint Louis MO for 5 years. What you are going through is grueling both mentally, physically and spiritually. The surgery is disfiguring and requires multiple surgeries to reconstruct the facial areas involved. The radiation is painful and overwhelming with side effects. Depression is common and even obsessions with death, family and future are very normal. There usually are teams of people taking care of each patient. You absolutely have the right to choose another doctor but, you are dealing with a very specific treatment plan and a cancer that spreads below the surface where it can't be seen. What you see may be the tip of the iceberg so to speak. I have found over the last 39 years that communication is usually the problem.
Not enough time, too much medical terminology, fear, illness, a lack of understanding all play into a lack of trust. I can say that with the new HIPPA federal regulations that a release form must be filled out at the time and for each request of information. There no longer is a blank signature request due to rampant fraud with medicare, medicaid and insurance billing. It is the new regulations not the hospital that insist on the forms. There is no deviation with out the potential for steep fines. Threatening with lawyers is not solving your issues. You have an advanced rapid growing cancer that is moving towards your brain. It is vital that you receive proper and immediate treatment or you will die. Do you trust God? God lead me to the number 1 rheumatologist in MO without my even knowing it. He works behind the scenes even when we can't see. There are times when I have been so depressed I didn't think I could go on but I take it a day at a time. Sit down with your cancer team and tell them your expectations, concerns and fears. Maybe you have the best team and maybe you don't but time is against you. Pray, trust God and go with that intuitive voice that is not your own then do the little things put before you.
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