Anniemarie,
Feeling in the dark about findings and a treatment plan is a terrible place to be - many of us have been there at times. It does seem that many urologists fail to communicate with their patients.
May I suggest that you direct the big questions to the doctor at the next visit:
- What are the issues that need to be addressed ? (The Doc may list: BCG for cancer, collapsed or blocked ureter, kidney issues)
- What is the timing of treatment(s) ? What will be addressed first ?
- Has additional testing raised any new concerns beyond the original issues ?
- Who can review the lab and imaging reports with us. We get concerned reading the reports.
Make a list of the BIG questions. Be ready to take notes. If the Doc is able to provide a PLAN for treatment, you will have a guide ahead, which will change with new findings.
It is important to have the Doctor or an able assistant review findings with you, unless you have experience in reading reports. It is easy to over-read problems in the reports. You should NEVER have to ask yourself, "Could the post op inflammation and hydronephronis be causing enlarged lymph nodes?" - The Doctor, or assistant, should be answering that for you.
I understand your concern - you need to know more, and the answers need to come from the doctor. The information in med reports comes from the whole document, not form single sentences. Medical reports always look worse to the patient.
Hang in there. The first few months are the worst, then eventually, hopefully, we adjust to the terms and phrases, and gain an understanding of where the treatment is going. Get the Doctor to keep you up-to-date on plans.
Best,
Jack