Differences from RO #1 and RO #2 and questions

Hi guys - I am back again with the latest information on DH's progress.

We consulted with U-Mich to see if they could offer anything more advanced or specialized than our local Cancer Center.

We met with both Dr. Palapattu and Dr. Spratt (RO) at U-Mich. They reviewed the MRI, but not the Bone Scan. Still waiting for that report. Dr. Spratt is an RO who only does programs for prostate cancer patients. His name appears on several research papers. He appears confident, smart, answered all our questions, and was quite sure that he could offer DH an 85% chance of success with few side effects. He had sort of a "superman" bravado "I am 100% confident in my team, we have the best and the brightest".

My lay-person understanding of the mumbo jump MRI report as they explained it, showed scar tissue or "something" non-interesting at the point where they sew the urethra back on. They also found a benign hemangioma on his iliac pelvic bone. MRI report said, no physical evidence of return of cancer. Spratt said "I haven't seen your bone scan report, but I'll bet its as clean as a whistle."

Dr. Spratt wants DH to come to U-Mich for an MRI in December. He doesn't like our hospital's MRI scans. Total distance: 113 miles one way, door to door. If we choose his SRT program, it will mean about 4 hours of driving every day, except weekends. I read up on the urinary urgency issues on other threads, will prepare for that - obviously this is one heck of a drive, if we choose this option. Spratt was super positive that DH would have little SE's if any, due to his great surgical recovery. (So, there it is, Door "A").

The local RO does prostate cancer patients, but she also sees a variety of other patients. She wasn't nearly as optimistic to jump into the SRT program, taking into account DH's young age (54) and his great success with no SE's from RP. She said that same thing - PSA in December first, then see what it does. She seemed more concerned with side effects, and she didn't mention a second MRI. Why do you suppose she is more concerned about side effects??? Could there be a significant difference in the team? Having PA's and medical students deal with us was also a bit of a downer. (But its so close....Door "B")

39 days for both, I can't remember for sure, but I thought that the local program included weekends. U-Mich takes the weekends off. U-Mich does have an in-house hotel for $25 per night for radiation patients, but there is a waiting list (only 4 rooms). The local RO is still about a half hour drive one way as well, but much easier, and good restaurants nearby (haha bonus). Also interesting is that the local RO wants HT, but Spratt didn't mention it until asked. Then he sort of bounced back, and said that it was a great idea.

We had a discussion with both U-Mich men about the Axumin Pet scan available in clinical trials right now. Unfortunately the closest is in Kentucky and we are in Michigan. They don't think that it would change our treatment plan for SRT. I had a long talk with the coordinator today, and received the consent forms and details. Haven't read it yet, not sure, again, if its worth it. Just under a six hour drive, one way. I downloaded the Axumin FAQ for coding and pricing. OMG the tracer alone is $3700- then you add that to the PET scan.

This trial requires two visits, about two weeks apart, one with a urologist to approve the participation at our expense. The trial pays a $300 flat rate. We buy the urologist and the travel/hotel/meals. Then the rest of the scan-related stuff is covered. Also discussed going to Mayo - but again, Palapattu was not optimistic that the information gained would be helpful, since DH was 7 years undetectable. He said he would give us the referral, whatever we want, but thought the results would probably not justify the travel and expense. He also said that DH did not qualify for any other radiology trials right now going on in-house. Axumin is FDA approved, so the next project is to contact Blue Cross to see where they are on covering it for a local PET scan instead of going to Kentucky. DH and I both feel that this process of radiating the prostate bed on a hunch is simply medieval (see my previous posts...) but we are starting to understand where we are in the world of disease progression. Having Dr. Spratt say back to me, "he was 7 years undetectable? That's unheard of!" was interesting (since I've already met a couple of you here...)

So now we are in a holding pattern until Dec. with both RO's. Neither think that waiting even six months will change Dh's prognosis or treatment plan. I now have (chuckling) PSA orders from our PC, two RO's and a urologist for December.

Unfortunately, DH's dad is in hospice now with another type of cancer - something called "carcinoma of an unknown primary". So we are all having a tough time right now, but especially Dh's Mom. The unknown primary part of this is awful - they don't know what is causing it, so the treatments were all experimental. CT's and scans in April showed zero cancer. On Aug. 7 they gave him a month to live because it was everywhere. Yes, I know, he passed his expiration date, and he is rather pleased about it.

Picc

Hi Allen!

They do have Linacs at our local center, but she didn't instill that same confidence, especially by sending in a PA to explain the radiation program.

Can you share what you know about my new buddy Spratt? I do believe we will be going back for his super duper MRI (sarcasm).

Another option is to run up to Grand Rapids Spectrum. That is an hour away, and I have a college student daughter who lives there. Any RO suggestions?

I am surprised that after reading my post, you thought we were leaning toward staying local. DH is actually leaning toward U-Mich. But we are weighing the options. There is something in my gut that isn't right about the local option but I can't put my finger on it.

We lived in Chicago for 12 years, and became accustomed to a certain standard of care. In a smaller city, we don't see quite the attention to detail, or the followup that was just better in the city.

When you have a nurse/tech call and tell you that your .2 is within normal limits, you just know that things are missed sometimes. I am still grinding my teeth about that one.

You always have thoughtful posts - and you are truly a blessing around here. Thank you.

Picc

Hi piccolo...your questions about distance remind me a lot about the questions my brother faced last year for a bone marrow transplant (so very different treatment in his case). He also lived in Western Michigan (Holland) and was deciding between the hike to UofM vs the closer Spectrum in Grand Rapids.

In regard to your situation, I didn't have SRT, but did have five weeks of IMRT that involved about a two-hour round trip (only 22 miles one way, but in LA traffic) and it quickly became a grind--I have a hard time imagining the four-hour version. I'm sure it's doable, but it certainly wouldn't be easy. Good luck on figuring this out!