Update on our treatment search

Suz,

Be sure to consider SBRT in your research. I had the choice of either HDR Brachy or SBRT at UCLA and went with SBRT as it appears to be as effective as HDR Brachy but is non-invasive.

I'm one month out now from my last treatment session and there have been no side effects. I was prepared for some discomfort, GI and uro problems, but nothing so far. The five sessions took under 30 minutes each and required no preparation other than drinking a liter of water before.

So I'm obviously a sample of one, and don't know my longterm result, but I'm very pleased so far.

clanda said...
If he does, there seems to be more of a chance for radiation induced side effects in patients who had BPH issues prior to brachy or other radiation treatment. They may show up long after the procedure in those who currently exhibit signs of BPH.

Clanda, this is news to me. There are usually size limits for seeds, but I've never heard of limits for any other kind of radiotherapy.

- Allen

Post Edited (Tall Allen) : 8/2/2015 9:04:36 PM (GMT-6)

Hi Allen - if we get there tomorrow & find out this doc is an LDR specialist, I guess I won't be too surprised. We asked to make an appt with a brachy & an SBRT RO specialist. Andrea, who does their scheduling, told us Ciezki did HDR & Stephans did SBRT. I just rechecked my notes from that conversation to confirm I had it correct. But the whole process of getting the appts made was not a smooth one. Possibly she mis-spoke or I just heard wrong. We will find out for sure tomorrow.

Re whether CC does HDR - The following comes from their website: "Cleveland Clinic has one of the most active brachytherapy services in the nation. Special brachytherapy procedures, including high-dose rate brachytherapy with remote afterloading technologies are routinely performed for many types of solid tumors."

You really seem informed about who does what and where, so do you think this is a fairly new service at CC? Might make us think twice about the HDR route there.

Also do you have any info on how long the prostate remains swollen after biopsy and to what degree?

As always, thanks for your time & help. (Thx for the input on the questions, too. You covered several points that we had not, so this is really helpful.)

Suz

That's the first time I've seen that article. One thing that I highlighted was that a prostate length greater than 5 cm resulted in higher rate of serious GU issues. Should be a good discussion with Ciezki today. Thx again for your help.

Suz

Hi Allen - Thx for checking in with us. Meeting was good. Steve liked and felt very comfortable with him. He does LDR only (no surprise that you were 100% correct on that) and said he has not done HDR for over 15 years. Some of his answers were particularly reassuring - ie, when asked about how he treats cold spots explained the process but said it's been over 10 years since he's had that situation.

We talked a bit about SBRT and he was glad to hear we're seeing Stephans in a few weeks. He thinks it's a good option for Steve to consider but of course thinks LDR is, too.

We were supposed to see Saboori today (RO at UH). Appt got cancelled at the last minute & rescheduled for Thurs. We are seeing Rodney Ellis then.

We asked Ciezki about the change in prostate size between the time of the MRI & the CT scan. He was not at all concerned. Said if there was still swelling from the biopsy, it would not effect the length, just height and width. Length would be more impacted by tension of surrounding muscles, breathing, etc.

Thx again for the list of questions. Very helpful.

Suz

Met with rad onc #2 today, Rodney Ellis. He was vey generous with his time (spent close to 2 hours with us). Steve liked him a lot. Dr Ellis is very passionate about cancer treatment in general, and very knowledgeable about the many different PCa radiation options. Seems to want the very best for his patients as far as equipment, etc goes. (My one concern is whether he's the jack of all trades master of none type of RO, but he does appear to be qualified in the options we are considering.)

He knew we were concerned about the size of Steve's prostate and ran the MRI thru a program. End result: prostate was 32 cc. (Good to know.)

Clinical trials scare me a bit, but as of this visit Steve is considering RTOG 0815 - it's a dose escalated RT study for intermediate risk PCa with the variable being 6 mos of ADT (Lupron/Casodex).

The last appt currently on our schedule is on 8/20 with Kevin Stephans who does SBRT. I think we will take a break from the due diligence appts until then.

Suz

Hi Allen -

I've got to admit that the discussion on this trial came towards the end of our 2 hour discussion, so I may be fuzzy on the details. (If we are seriously interested in the trial, Ellis said he'd want to book a 1 hour consultation with us to discuss it.) My understanding is that there are a couple of different options for the delivery of the RT on this trial -- EBT only or a combo of EBT & brachy. Both arms of the trial had those choices and then the variable being investigated was the HT.

If you pulled the HT arm of the trial and then chose to do EBT + brachy, just seems like the potential for lots of SEs to me.

In my heart, I know I would not vote for this trial, but it's primarily Steve's choice.

Suz

I've done 18 months of HT and when I read about the trial I thought "hmmm, sure wouldn't want to do even six months of HT if I didn't have to." My two cents...

We had two excellent appointments at the Cleveland Clinic yesterday. It will take time to fully process our hours of discussion with the docs, but we are now feeling very confident about pursuing treatment there.

We spent the morning focused on radiation - mostly SBRT. (NOTE: For HDR brachy, the Clinic refers patients to Dr Alvaro Martinez in Detroit. I think they were a little impressed that we already had an appt. scheduled with Martinez for Sept, thanks to Tall Allen's recommendation.) Kevin Stephans was extremely candid in answering all our questions and actively sought out our views and feelings about treatment. We had a particularly good discussion about their techniques for protecting the rectal walls. They've been doing the intrarectal balloon, which moves the posterior wall away from the radiation field and helps to stabilize the area, BUT moves the anterior wall closer to the radiation target. They have also JUST started doing the hydrogel (SpaceOAR) which creates a barrier between the radiation target and the anterior rectal wall. When we asked why not do both, he looked a little startled and said had just discussed that possibility in one of their round table meetings and he was definitely open to it. At the very end of our discussion, he said it was refreshing to see patients who were so well informed and that it was really fun to talk with us. (Since so much of our education comes from this forum, this was a direct compliment to HW!)

We are not 100% certain that SBRT will be covered by insurance, so we had them initiate the paperwork to get the approval. Dr Stephans said they get standard approval for about 90% of patients and the remaining 10% are approved on appeal. He did not anticipate any problems with Steve's case.

So when we grabbed a quick lunch, Steve was feeling really good about SBRT and thinking that was the route he wanted. Then we had our afternoon meeting with the surgeon.

The surgical resident we spoke with first was still wet behind the ears. Probably came in with the new crop that just hit the Clinic in July. (Steve said it was the worst DRE EVER!) This kid figured out pretty quick that we didn’t need him to explain Gleason scores and tumor grading, so our time with him was relatively short. Jihad Kaouk is the surgeon we saw. He was involved in a bit of a dust-up many years ago in a publicized case over who was actually at the DaVinci controls for a surgery that did not have a good outcome. We stepped lightly around the topic of that case, but covered the points that we needed to. He’s done around 1,500 robotic prostatectomies and gets excellent results. (We heard that he gets a lot of the high risk cases and ones that were aborted by other surgeons.) He will be at the controls if Steve chooses to have him do surgery. Steve said the appeal of surgery is wanting the cancer OUT and having that post-op pathology report. The amount of downtime and the SEs are the big negative.

I’m on my way out of town for a girls’ weekend, so while I’m drinking lots of wine, Steve’s got some time to himself to think about his options. We are about 6 weeks out from DX and are getting anxious to move on to the next step – whatever it’s going to be. Our appts with Dr Menon and Dr Martinez are on Sept 9th, and then we go into decision mode.

Thank you AGAIN to so many here who have been our educators and our support. We could not be doing this without you all.

Suz and Steve