The Lull Lingers -- another month

I kissed my wife and left home with a bit of urgency this AM. I was off to the endorectal MRI that is to be the last study done to make recommendations for treatment. The urgency was simply wanting to be sure not to miss the subway that would take me to NIH where the study was to be done. I did not feel particularly nervous, but I did feel like I was walking into the unknown. did not know the result, and I did not know how uncomfortable holding still in an MRI machine with a rectal probe in place for an hour was going to be. Not exactly a great thing to look forward to.

Still, I did not want to be late. The National Cancer Institute at NIH is performing a marvelous service for me here, and the least I can do is be punctual. Of course the train was a few minutes late, but only a few, but I got to the appointed place on time anyway.

At NIH everything went smoothly. All the staff are very pleasant and helpful. No sense of being a number or everyone being in a hurry. Got my blood drawn (the docs need to know that my kidneys are functioning normally before administering the intravenous contrast agent that is part of the MRI). Then went down for the test.

The MRI machine is in the third basement. Like hidden. Maybe that's a good spot because it's isolated from all sorts of external factors. Mostly, I think, it was the only place they could fit it. It's a monster. The technician who greeted me was very pleasant, made sure I was not carrying any metal (wedding ring was OK, to my surprise), and had me strip down, no undershorts, but undershirt OK. And then the stylish hospital gown, tied in back.

First phase of the study is a test to see if there is any residual bleeding from the biopsy. This pre-test does not involve the rectal probing bit, so it was easy to relax. After I was carefully placed in the machine, with ear plugs, and big, sound blocking ear phones playing music, the jack-hammer noise typical of an MRI started, and about 10 minutes later the radiologist running the procedure came in to talk with me.

He took me to the control room to show me the pictures. The bleeding that had accompanied the biopsies 8 weeks ago had left pools of clotted blood that had not yet been reabsorbed. These areas prevent a close look at the back of the prostate, the part that a doctor can feel when doing a digital rectal exam, and also the part where cancer typically grows through the prostate wall and begins to spread to nearby structures. Unless they can see that area clearly, the doctor explained, the study itself adds no important information to the treatment decisions. And, since the test is "invasive" as he put it, there is no reason to subject people to the study unless it will provide helpful information. His recommendation: reschedule for a month later.

Se we've rescheduled for just after Christmas. That frees up most of the holiday season, but extends the time of not knowing the extent of things and the treatment options. Hey -- I'll take what I can get and enjoy the month. And I'm not unhappy that I did not get to hold onto that rectal balloon for an hour. Though that's still coming...

For anyone else facing this kind of thing, I'd say the new information here is that the MRI that the urologist is likely to recommend to see how extensive biopsy proven cancer is should be delayed at least 8 weeks, and better, 12 weeks, before the study is done, if it is to have any value. Since it's uncomfortable, and expensive, it might as well be worth something. The NIH radiologist said that they've done about 600 such exams, and anything done before 12 weeks is pretty uncertain.

Still, I can't avoid feeling that things are moving awfully slowly. I want to know my future. I want to begin picking among potential treatments and treatment locations. I feel like I'm on hold. I want to move.

I'll be having another PSA test at the time of the next appointment, and I'll be off my bike for another month and struggling not to get fat as I go through the holidays without the exercise the bike provides. But I hope to get some time off from work, and I certainly intend to enjoy the holiday season.

Thanks again for the expressions of support. I really appreciate your comments. I'll keep you posted. Best holiday wishes to each of you!

Comments

Waiting is so tough! But in the meantime, have a great Thanksgiving and don't worry about getting fat over the next month!
 
It's a pity that the wait, the suspense must last yet another few weeks, but it sounds as though you are in excellent hands. Again, thank you for sharing your journey with us; and, again, please know I am thinking of you and wishing you well. Hope Thanksgiving was a blast!
 
Waiting and wondering is always hard and it always seems like no one has the same sense of urgency that the patient does, but you are in good hands and it is refreshing to hear that they take the time to explain circumstances. Enjoy your holiday month.
 

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