New Gleason 9 and stalled on treatment and bone biopsy

Brothers (and sisters supporting brothers) with prostate cancer, I have run into a frustrating situation at University of Washington Medical Center. Can any of you tell me is this normal and just something I have to work through at a leading cancer center, or if not, how bad is it and should I be angry?

At another hospital I was diagnosed with Gleason 9 prostate cancer on Sept 17. Perineural invasion identified as well. Then on Sept 24 after doing an MRI and Nuclear bone scan a few days before, I was told that the imaging shows a 2.7 x 4.1 cm spot that is consistent with a single metastasis on the right side of my sacrum bone. I was also having some pain right in that area at the time. That pain has actually decreased a bit but is still there now.

On September 28th, I had my first appointment with a medical oncologist and urologist at University of Washington. University of Washington is part of the Seattle Cancer Care Alliance. I am 48 and based on what I knew so far my instincts were move to a leading cancer center and keep everything moving quickly. Perhaps there was still a chance for a curative approach. At this point I was done with the original hospital and urologist I was seeing.

The medical oncologist at UW helped me put together an initial plan that I felt good about. One of the first things we would do is a bone biopsy. This would be definite verification whether the bone spot is cancer or not, even though it seemed highly likely that it is. Also the bone biopsy would allow for DNA sequencing of the prostate cancer on the bone as well. Looking for any edge on this, I would was very game to do the bone biopsy.

The plan was that the day after the bone biopsy was done, I would start on interim treatment which would be Lupron hormone therapy. Then once all tests were complete we would would make a more complete treatment plan. I was told it could be about 10 days before the bone biopsy might occur and thus about 11 days of waiting for treatment. I didn't even want to wait that long but I figured it was worth the short wait for the potentially valuable info the biopsy could bring.

Jump ahead a month later and to my disbelief I have still not had the bone biopsy and therefore no treatment has begun. It is finally scheduled for this Thursday, Nov 1. That's not for lack of trying. I have made calls or emails related to this almost EVERY DAY since the oncologist visit on September 28th. Here is a timeline of what has occurred:

10/2: The first couple of days I waited for them to call me to set my next appointments as that's how it worked at the previous hospital I was going to. 2 days go by - crickets.

10/3: I email one of the medical oncologist's assistants about the bone biopsy appt. She said the medical oncologist just put the referrals in yesterday and they are going through my insurance for authorization at the moment. She did give me some phone numbers and said if I wanted I could call directly and make my appointments. I actually had 2 other far less critical appts to set up in addition to the bone biopsy. I called both phone numbers but neither place knew anything about a bone biopsy.

10/5: I emailed the medical oncologist's assistant again to get more info and find out where I need to call to get this bone biopsy scheduled.

10/9: I was away on a trip for a few days on a weekend trip. When I get home I see there is no reply from the assistant that I had emailed to get clarification. No response. Never did get one. To a new Gleason 9 patient. Then I called the general number for prostate oncology at UW. They gave me a number that they said is definitely for scheduling the bone biopsy. I called the bone biopsy scheduler and they said they would get back to me in 2-3 days because they had to protocol the biopsy.

10/11: I've heard nothing for 2 days so I call back the bone biopsy scheduler. The woman had heard nothing back yet so she pushed it over to the neuroradiologist. She said it might not have approved and again said something about getting this into protocol.

10/12: Called the bone biopsy scheduler again. Says she had handed it to radiologist, they are protocoling it and she is checking on it again today. She let them know I have been waiting since 9/28. She also advised me she is filling in for the regular scheduler who is out due to a family emergency.

10/15: It's Monday so I called the bone biopsy scheduler again. She says they actually can't schedule the bone biopsy because I haven't had a CT scan yet (of the Chest / Abdomen / Pelvis area). I had previously scheduled this CT scan back on 10/4 for 10/18. The reason it was scheduled 2 weeks out was they said they had to wait 10 days for insurance coverage to be verified. Also no one ever told me it was a prerequisite for the bone biopsy so when they set the appt for 2 weeks later I just went along with it. Now here they are telling I can't even schedule the biopsy until after the CT scan is done. I suppose that is probably because they will have to see the results and discuss with the oncologist before knowing exactly what to do and how much time should be allotted.

10/18: CT scan done as scheduled. I got there like 2 hours early because I wasn't taking any risks of getting caught in Seattle traffic and missing this prerequisite for the bone biopsy.

10/19: The next day I call UW and I tell them my CT scan is done, let's get this biopsy appt finally set! But it's a Friday and I am told a lot of people are out. The person I was speaking to will try to get my message to someone who can help me, but I will likely not hear back until Monday.

10/22: It's Monday so I call again. This time the regular bone biopsy scheduler is back so I feel a little better about things. She has to check some things though and she will get back to me later in the day or the next day. In this call like most calls I've made about this, I'm explaining I have potentially very aggressive cancer and there is urgency.

10/23: Good lord my bone biopsy appt is finally set but they could not get me in until 6 days later on 10/29.

10/26: I get a call from the scheduler, the machine they use has a problem and they have to push my appt to 11/1. They are awaiting a part from Germany.

So that's where it's at now. If nothing else goes wrong, I will do it 11/1 and then finally start hormone therapy on 11/2.

Sorry, this is a lot, but besides asking this question, documenting this also is helping me sort out what has gone wrong here. Thanks if you have read this far.

So tell me, is this normal? I am trying to bear in mind that a leading cancer center is going to have a LOT of cancer patients and a new Gleason 9 might not be that unusual to them. They can get bogged down, crap happens and things go wrong. At the same time I feel like I gave this potentially aggressive cancer a chance to spread. If I could go back I would just do the HT right away. Now that I've come this far though, I have to wait a little longer and get the hopefully useful info.

The good news is that the delay is unlikely to matter, even with a G9.
But this crap really is annoying.
I just had this type of thing with U. of Michigan, a truly excellent medical facility.
I wanted to change an appointment there so that I would have two appointments on the same day (they were 3 days apart). The scheduler said she would call me back EITHER WAY. She never did. I HATE that kind of stuff. Very poor. YOU are the CUSTOMER.

'nuff said.

Mel

After my biopsy and consults with a guru 4 hours away, and counting some time trying to decide on RT vs surgery, I was probably at least 2 1/2 months between biopsy and surgery. Other than a couple of weeks wasted on my part as I pondered what I should do, I did not get any impression that there was anything unusual about this, in fact I got the impression that I had even more time to safely figure it out, despite my G9 with a PSA of about 11.

I'm sure it is frustrating for you, dealing with apparent inefficiency on their part, but a week or 3 is probably not going to make any difference in likely outcome. Hopefully things will improve now.

Holy crud, I would be roundly ticked off! That said, even with a G9 it's unlikely to make a difference--even aggressive PCa proceeds at a low pace compared to other cancers. But I'm sure that's unlikely to make you feel better. I'm also a G9 and when I was diagnosed it drove me crazy about how long things would take. (I remember that every time I sneezed I swore I was spreading PCa cells all throughout my body...)

Hang in there and know that once you get that Lupron shot the PCa will stop in its tracks. Do keep us posted...there's a non-trivial chance that the bone biopsy is negative. Good luck!

Par for the course, and actually 5 weeks is pretty fast. After my diagnosis it took almost 3 months before all the ducks were in a row and I started treatments. More tests, more waiting, etc... But what my doctor did was immediately prescribe me Casodex to help stop cancer spread in its tracks while the ducks lined up. Granted, I didn't have a 9 like you so take it with a grain of salt.
Take care and good luck

Post Edited (ldog) : 10/30/2018 10:19:25 AM (GMT-6)

Bobmars, I didn't go to a major center even though we have several here in Denver. I had the opposite experience. I felt like I got swept up in a wave. I just let the doctors call the shots due to lack of education on my part. From Dx in December 2017 I went through the CT, bone scans, biopsy, RRP, HT and 40 RT treatments in about 10 months. Any pre-approvals I needed from my insurance typically happened within 5 days. I had one instance where the Lupron did not get approved but that was due to a back office worker submitting the wrong code to my insurance. It was corrected fairly quick. Thinking back I had several claims get denied because the wrong code was submitted. It really helped having web sites for my insurance carrier and the doctor offices.
Good luck and I hope everything proceeds quickly for you now.