Take, for instance, what has been happening with me since last Friday. On Wednesday of last week I had a P.E.T. scan, the first one I have had since April....and then only because I kept on questioning my oncologist how did he know that the drugs were really working and what if I had two different things going on? Why, for instance, couldn't I have two different types of cancer happening, breast cancer which was responsive to the drugs and another which had mutated and become resistant? I was curious as I have been having pain in the Sacro-iliac joint for quite some time. It feels and acts very much like my hip did before the acetabulum broke and told us what was really going on...but my doctor kept on dismissing it as being arthritis...or inflammation of some sort.
So, on Friday, while I was at the ophthamologists getting my eyes checked because I was diagnosed by the optometrist as having an epi-retinal membrane possibly caused by the chemo...my oncologist called and left a message on my answering machine at home. He called at 5:15 pm. and said that he got the results back from the PET scan and that they were "complicated" and that he would call me back on Monday to talk to me about it. I knew that he wasn't in the office on Monday, or at least wasn't seeing patients and the last 5 times I have called the office and left a message on the medical assistant's voice mail, I haven't heard back. No one bothers to return my calls. So, I waited. He never called. He didn't call me today either. I will see him tomorrow at 2:00 pm. I am pretty sure I know what "complicated" means. The last time he told me the PET was complicated, I had the progression in my pelvis. So, I expect that I have more mets. I suspect, given the amount of coughing I have been doing that it might be in my lungs, or at least more in my ribs. I don't know. I'm not really winged out about this as I know I can't do anything about it whatever it is...but I am terribly disappointed in my doctor and his office. If I am told that I am going to get a return call, then I should get a return call. If he wasn't going to call me, or if he thought it could wait until my appointment on Wednesday, then don't bother to leave a message at all. Hang up the phone. Instead, I've been left to stew from Friday afternoon, until Wednesday.
If I were somewhere else, and I were talking to someone who was telling me this story, I would suggest finding a new oncologist. However, I like this guy personally, he has a good track record with my husband's cousin and I don't know who else I would go to. After all, I had started out at the James Cancer Center in Dublin Ohio when I first came down here. My first appointment, I waited in a room for more than three hours....and over heard the nurses talking in the hallway discussing where I might be...(perhaps in the room they put me in initially, especially since I was still wearing a drape????). The second time, I had a series of tests at the OSU hospital and I carried all of my mammograms, bone scans and other records (as at this time they had not been digitized) dating from 1999 until 2005. They were late at the hospital and they took my files from me at the registration desk. When I went in, I told the tech to get my films from the desk. When I finally left...again after being almost two hours late, I flew to my appointment back in Dublin. I got there 5 minutes before I was to be seen. I asked if he was running late as I knew what my previous experience was, and I hadn't eaten since 6:00 pm the night before and had driven myself the hour and a half from Troy. Oh no, he was on time. My appointment was for 1:30 pm. I finally saw him at 6:00 pm. I then drove home. Hungry and tired. Two weeks later, I discovered that OSU had lost all my films. Never to be seen again. No, they were not returned to the hospital in Connecticut where they originated.
Needless to say, I switched doctors and even though when I told the guy at the James I wouldn't be seeing him, and why, he said "Well, if you have a recurrence in the future, you really need to give me a call because I am the best in the field for stage IV breast cancer." I'm sorry, but I can't entertain the thought of going back to this guy.
So I'm stuck.
I'm not as stuck as someone on the Inspire forum I just met today. She lives in New England and is on Medicaid because her husband left her and her son. She can't work because of health issues. She has had extreme pain in her breast since May, but a mammogram shows nothing, nor does an MRI. She thinks it might be inflammatory breast cancer because of how it is presenting. She is now having bone pain, swelling in her legs, and the skin on her breast is orange peeling....all symptoms of advanced IBC. However, when she went to the one surgeon who takes Medicaid in her area, she was told "It can't be IBC, you'd be dead by now." She finally agreed that maybe she would do a single punch biopsy in a small area, but that would be the only shot she had. Meanwhile, this person is still in pain and no one is listening to her.
Why do I feel like we have to paste $1,000 bills to our chests and stick burning sparklers in our hair to make people listen? Don't we deserve more respect than this? Just maybe, just maybe we actually know our bodies and can tell when there is something wrong. Listen up, docs, we are human, and we need people to understand and walk in our shoes. It seems to me that there is a huge disconnect between healthcare and the patients....and something is likely to short circuit and burn the barn down.