Today was our treatment planning with the RO. H had petscan on 12/31/08. Local hospital gave us a cd to handcarry to the tumor clinic on 1/7. Tumor clinic opened the cd and someone's MRI of their brain was there. We were told that the tumor clinic had made a call and it would be straightened out. Meeting today and no petscan. Call to tumor clinic - no petscan. Call to local hospital, in less than a charming tone of voice, and they assure me the disk will be fedex'd to doc by 10 am tomorrow. In the meantime, doc can't tell us if some of the stuff on it is cancer or not as all he has is the written report (likely written by a monkey) and therefore we don't know if we're shooting for cure or control of this thing! Mask done today. Chemo starts Wednesday with Erbutix 1 x weekly and rad starts on Monday (18 treatments 1 x daily and last 12 will be 2 x daily).
Just needed a place to rant.....and a reminder to all who are starting this process to stay on top of everyone involved. Keep notes, keep copies of stuff, keep a calendar and phone numbers handy.

Cheryl

Rant away - you have every right to be really PO'd. Are you sure that this is the right place for treatment??


I hope that things get better from here and you are right - you have to watch everybody and everything any more. I miss the time when people were responsible and cared about the job that they did. Most of them now are just there to draw a check.

Good luck and I hope tomorrow is a better day.

Patty

I always ask for two copies of my cd's....one for the dr., and one for me to keep...maybe for OTHER doctors....Of course, in this case, you would have had TWO copies of that other person's brain scan.....arghhhhhh. But it's your property, and you have a right to it. If there is a fee, it should be only a few dollars.

That's unconscionable carelessness. You deserved to rant. Now I feel like ranting on your behalf!! XO

I've also received CDs of my scans, and being a curious person I would insert them in my PC and take a look. Not sure what all I was looking at, but I was able to verify that they were indeed mine.

Since my adventure began I have seen many different doctors, so I got in the habit of asking for copies of all my medical records and various tests and bringing them along with me to my doctor appointments.

Cheryl, you do have a right to rant. That was a very dumb and careless mistake. I hope the rest of his treatment goes smoothly.

Cherly,
it was probably typed in an entire room full of monkees. I stopped getting copies of the CD's because even though I work in the radiological products industry, particularly in diagnostic radiology workstations, unless it jumps out and smacks me in the face - I don't know what I am looking at either. The original tumor was pretty obvious - it was big and blocking my throat. It would actually cut off my breathing while sleeping at night. Subsequent scan anomalies were much more subtle and required reading by a radiologist. I also had one time when they gave me someone elses study so much for HIPPA!

The way that it works, in practice, is that the scans are sent to a central office/reading suite, where copies are made by technicians, the readings and reports may be done there as well. All of the scanners from the hospital, Gamma camera, Ultrasound, CT, MRI, PET, LINAC x-rays, etc. all end up in the same place. It is easy to make a mistake, especially with the volume some of these institutions have. I've had MRI's late at night, on weekends, etc.

Since I have an HMO, all of my treatment, meds, etc., were all on their coordinated database (which ironically I submitted the 510K to the FDA for clearance to market for). It is a very wise idea to get copies of all of your medical records, scan reports and lab tests. I wouldn't bother with getting actual scans. This information is vital if you are going to submit an SSDI claim to Social Security.

Totally agree with you about the notes and everything. My wife did all of that. The docs really move through the stuff quickly.

Sorry you are going thru such a frustrating time of it. Being organized is very important. Sounds like you are doing a good job.

I carried a small day planner with me and a small notebook to every office visit. I took a business card from every person I talked to or met with and stapled it to the inside covers. Many times I found myself goign back to get the names and numbers for people I met during the beginning of my adventure.

Thanks folks for listening to me rant....it's a new day and while I'm still irritated beyond words, I'm better - which just means my head has stopped spinning. It's the local hospital that's responsible for this screw up so if docs at CCC (2 hr away) don't receive that disk today I'll be at the local hospital before the end of business today. The pressure of not knowing what we're facing is just a bit much - all of it is overwhelming of course, but we're almost 3 weeks out from a petscan and don't know if we're looking at metastasis or some other problems.

Does your CCC have a patient advocate? Mine does and in situations like you're describing it's been invaluable. It's somebody you can talk to about frustrating things going on like that. We found that when we talked to that person things got straightened out in a hurry.

Good news - doc's office phoned me at 10:30 this a.m. and they have the disk I haven't looked into a patient advocate thing as I did legal advocacy for the poor for 20 years. Handled most of the SSA claims through the hearing stage so I know the drill, it just irritates me....some things never change.

Thats positive news, glad they found your disc.

The whole process can be overwhelming. So many doctors, appointments, medicines, treatments. Seems to be so much to do that it can wear you out just going from appointment to appointment.