I have had it with my current nuero-oncologist, and am looking for a new one. Since my last appointment when he said the it 'looked smaller to him', I have been pressing them to provide actual measurements, or a percentage 'smaller'. They said that this was the responsibility of the radiologist, and they would ask them. A week later, the nuero-oncologist said that the report came in, and the radiologist reported the same thing...'appears to be smaller'.
I get a copy of every MRI that I take, and they are very detailed pictures of my brain. I can run the viewing software on my PC. This software has tools where one can measure any aspect of the pictures. As an engineer, I thought it was a very strait forward request for the tumor measurements before and after the treatment, and use the difference to calculate percentage change. To make a long story short, they eventually provided some numbers with strange descriptions and basically refused to make any conclusions from them other than what was previously stated. They are basically telling me I should be happy with their qualitative conclusion even though they have the data to make a quantitative measurement. This whole episode made me very upset not only because they were dismissing scientific principals, but the whole time they were very dismissive with my concerns like I was just being a pain in their ass.
On top off all this, the doctor has changed their office location from a very personal office to a general super center where you have to wait in one line, go to a triage center, go to the waiting room where the butts of the people waiting in line are in your face, see the doctor in a tiny room with 5 people, then go back to another line.
Doctors that don't seem to care about my concerns, unfriendly office, following a recipe...I going to see what other options I have.
Other than that, I seem to be still having the good-days, bad-days schedule. A couple of days I feel good, a couple days no so good.
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That has to be so frustrating and you are making the right decision about changing neuro-oncologists. I wish you better luck with a new doctor. You are 5 days off of the temodar. Do you still have alot of fatigue and no appetite? My husband will be starting his 1st round of temodar post radiation and so concerned about how he will feel. This past week has been the best week for him since no radiation and temodar.
ReplyDeleteChange docs if you want, certainly a second opinion is in order. Most likely they cannot give you a precise measurement due to liability concerns. Once they label something or give a precise anything, they open the door for malpractice issues in the future. We are some sue happy people in the US.
ReplyDeleteDeb
To Anonymous about my general stature,
ReplyDeleteIn general after the radiation, and before the first 5/23 cycle I was feeling OK. I went back to work in that 5 week gap and had to leave early only a few times because of exhaustion. Then the first and second days on the 5/23 cycle were OK, but then the 3 bad day - 3 good day cycle seemed to start again. I am just coming off the 3 bad day cycle, and feel pretty good today. On bad days I need to leave early from work and usually take a nap, but I do not feel any better after the nap. Very irritable, stomach hurts, constant headache. I think Yoga would help removing the pain from my body during the bad days, I just need to get my act together and do it.
thank you for sharing your experience with the 5/23 cycle. It is very helpful to hear from someone who is going through it. Doctors cannot convey what to expect if they have never experienced first hand - that is why it is so valuable for patients to talk to some one who is actually going through it. It would probably help if the hospitals set up a "buddy" system where another person with the same brain tumor could say how they feel and what they did that helped them through the rough patches.
ReplyDeletemy husband was having terrible headaches and sleeping twice a day. A very low dose of decadron (1 mg) has helped him alot. He has more energy, better appetite and only has to take one nap. I know doctors always want patients off of the decadron but if edema after radiation is causing the fatigue and headaches then a low dose seems to be the answer. Quality of life is very important
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