New club member...i think. From Diagnosis to SBRT.

Tudpock 18,

I had forgotten to mention earlier that I contacted Allen about SBRT as it applied to my specifics. I received a very thorough response from him endorsing it as a mono therapy, especially with the downgrade of my pathology from Dr. Epstein. I had been questioning the physicians about the potential need for a combo therapy because of my Oncotype results and he was able to link me to a study where it was shown that there was no improvement in long term outcome over SBRT as mono therapy or combined with a secondary treatment.

Also, my RO gave me a copy of a current article in the ASCO Post regarding the results of a study in a Scandinavian Phase III trial of Ultrahypofractionated vs Conventionally Fractionated Radiotherapy. 1200 men in Sweden and Denmark, with either intermediate or high risk disease, and no ADT treatment were found to have 84% five-year failure-free survival in either of the two groups. 89% of the patients were classified as intermediate. I found this encouraging for those with higher level disease.

From what I have seen, Urologists seem to derive some of their estimates on the risk of the combo therapy from the multi parametric MRI and the subsequent MRI fusion biopsy that they perform. If the MRI shows that tumor abuts the capsule (a possible EPE, but no clear protrusion on the MRI) or is apical (where there is no real capsule), then Urologists tend to lower the odds of success. There are probably other indicators that I'm unaware of. Sometimes the biopsy shows skeletal muscle tissue mixed with the cancer, which can also indicate that the cancer is near the apex. Cancer can escape the prostate through the apex without obvious EPE; and also through the nerves, hence the worry when the biopsy or final pathology shows perineurial invasion. Also many G8 and higher patients have had cancer escape even though there was no obvious EPE.

Do you have the link to the study that Allen provided? The only SBRT combo therapy I've come across is SBRT boost therapy, which seems to work similar to Brachy boost therapy.

https://ascopubs.org/doi/abs/10.1200/jco.2018.36.6_suppl.12

https://pcnrv.blogspot.com/2019/04/should-sbrt-be-preferred-treatment-for.html


https://clinicaltrials.gov/ct2/show/nct03056638?term=sbrt&cond=prostate+cancer&cntry=us&draw=7&rank=52#contacts

Mattam, thanks for converting the links of my previous post.

Mumbo, a big thanks for the tutorial on posting links. I've learned something new today, and it's not about PCa!

Post Edited (e.noont) : 7/29/2019 5:45:31 AM (GMT-6)

In preparation for Cyberknife I had an outpatient surgical procedure yesterday to install fiducials (gold markers) in the outer edges of the prostate, as well as having the SpaceOAR hydrogel inserted between the prostate gland and rectum. I asked the surgical group as I was being wheeled into the suite about the term SpaceOAR, but no one knew. I looked it up today and the OAR is for “organs at risk”.

Before the procedure, my Uro visited me and went over the procedure for installing the fiducials. I’ve read that they usually use three markers, but the doctor told me that they now use a total of four and they are stranded in pairs. Because the next stage of the planning uses a CT scan and a MRI, you need at least three reference points for the software to produce a 3-D image of the prostate. From the GPS navigation system on my boat, I know that the more reference points (satellites) seen, the better the positioning accuracy. Two needle sticks total through the perineum to each side of the prostate and that part was done. I should also mention that I was under full anesthesia with an endotracheal tube airway.

The SpaceOAR rep was apparently in the area and joined my Uro in surgery for my procedure. I have no idea what his role was, if anything. My Uro installs these frequently. A third needle stick and a two-part syringe injects the product into the space and is pulled back until the area is full. It’s like a two-part epoxy that reacts together and expands to produce the gel. The literature explains that it will protect the rectum for three months. I have no sensation that anything is different down there. The Uro phoned my wife after all was done and said everything went very well and he got good spacing with the SpaceOAR. I’ve read in the company literature that sometimes SpaceOAR and fiducials can be inserted in the doctor’s office. Not sure why I had to go the full anesthesia route, but I will say that these procedures resulted in more discomfort than the biopsy did.

As I am three months away from going on Medicare, I still have individual health insurance through BCBS. Both of these procedures required “prior review” and approval before they are covered under my plan. The SpaceOAR was not covered, so as of now, I’ll be paying for that myself. My Uro told me he will do a “peer to peer” review with the BCBS doctor to appeal the denial. Medicare DOES cover the SpaceOAR. Ironically, my RO will not do Cyberknife of the prostate without it. I was never going to move forward without the spacer anyway so I don’t second-guess the decision to pay for it. There’s not a lot information about the efficacy of the spacer yet and short term it doesn’t seem to make a big difference. I elected to go with it in the event that long term radiation side effects on the rectum are reduced or avoided. I don’t want to look back and wonder if it might have helped.

Well, I get a week off now and move to the final planning and rehearsal next.

Mumbo,

After paying these ridiculous premiums for individual health insurance, I've been all over this Medicare supplement issue. Now that I'm within three months of starting Medicare I'm eligible to select and sign up for a supplement plan to begin at the same time that Medicare starts. In fact, I have an appointment this week with our health insurance agent. I've already received my Medicare card for Parts A/B. Because of my pre-existing condition I'll be getting a part D for drugs and a F or G for the supplement that covers all remaining qualified charges. F plans are still available for those that turn 65 before the end of 2019. I've been inundated with mail for supplement plans and it looks like I can get all this coverage for about half of what I'm paying now.

Thanks for the well wishes. I'll post again once my final planning is done.

I keep thinking about renaming this thread, but I want to share my entire journey from one place. I hope this narrative is of help to others some day and gives them an idea of what they might experience.


This past Monday was my treatment planning day. Since the denial of coverage from my insurance carrier for the gel spacer, I have now started communicating directly with them to make sure the remainder of procedures/treatments have received “prior approval”, if necessary. Right now, we’re full steam ahead. At 8AM we met with the Cyberknife Coordinator and had a very thorough discussion of what to expect on treatment days. I can’t say enough good about this team and their efforts to help my wife and I throughout this process. They assist us with a variety of issues, some of which I really don’t think are their responsibility. Next, the RO spent about an hour with us, also going over more information about my particular disease level, treatment issues, management of side effects, as well as getting my consent forms signed. Then we were off for my CT scan. This is where the not-so-fun parts started. The RO inserted a penile catheter in order to drain my bladder and then infused 150ml of sterile water (saline?) back into my bladder. This was the first step in obtaining a baseline image of my anatomy with a known quantity of fluid in the bladder. The scan itself took about 20 minutes and after completion, my bladder was drained again. Since we were running ahead of schedule, we were taken to a kind of intermediate care room with comfortable seating, TV, etc. and I was allowed to have a cup of coffee. We had a little more than an hour to wait for my turn in the MRI. The coffee turned out to be a “not so good idea” as I needed to “drain my bladder” again. I received a quick lesson on how to manage the catheter and sent off to the bathroom on my own. This reminded me of my teaching days…see one, do one, teach one. The imaging center has two MRI’s and my scan for today was on the 1.5T machine. Once again, my bladder was drained. I was then refilled with sterile water equivalent to the amount taken out after completing the CT scan. This amount was a little bit more than the 150ml originally placed, in order to include the amount of urine my body was making throughout that first scan. Again, the second scan will image my particular anatomy with a known quantity of fluid in my bladder. The RO told me that they line the two scan images up using the catheter as their guide and fuse the images into the Cyberknife machine to get their 3D imagery. Pretty clever. And lest I forget, during both scans a smallish catheter is inserted into the rectum in order to passively evacuate any gas. Apparently, if enough gas accumulates it can displace the anatomy enough to move the prostate. I was told that a rectal catheter would be placed prior to each of the five Cyberknife treatments. The MRI only took about 15 minutes and once complete the catheter was removed. This was my first experience with a catheter. I only had it in for about 2.5 hours but I’m sure that catheterization will be the most uncomfortable part of my entire treatment. I guess you get used to it after awhile but I hope I never find out. The RO told me that his part of my written treatment plan would be done today and they were hoping the nuclear physicist would get their part done tomorrow. If so, it’s only a matter of days before treatment begins.

Anecdotal information:

My treatment facility is on their second Cyberknife.

They had the first Cyberknife machine in the state.

Two years ago, the current generation Cyberknife cost $1.6 million. I thought it would be more.

Initially, three fiducials were placed in the prostate to aid imaging. Today they use four and they are stranded in pairs.

Each gold fiducial is 0.8 x 3.00 mm in size. I forgot to ask if they are going to show up at airport security scanners.

That's a lot prepping. Good luck with the treatment!

Again, for anyone who hasn’t been following my journey to this point, the intent of my postings is to share a lot of detail of my PCa experience, from pre-diagnosis through SBRT treatment. For someone considering radiation as their primary therapy, this should give you a pretty good idea of what to expect. As I write this, I have completed all five SBRT treatments.

Two days after finishing my planning session I received a phone call from the Cyberknife Coordinator asking me if I wanted to start my treatments the next day. I enthusiastically responded, “YES!” That told me that the RO and the medical physicist had completed their written plans. I was already aware that the Cyberknife schedule had openings. Besides, the sooner I started treatments, the sooner I could get off this crazy diet. I’d been on the diet for five days now and had settled into a routine, and my wife had gone to a lot of trouble to make it as easy and palatable as possible.

about two hours before my first treatment time, I performed the obligatory enema and then emptied my bladder just before leaving the house. As stated in my last post, the regimented intake of water and the emptying of my bladder took place as directed. After checking in, my wife asked if she could see the Cyberknife treatment room. The staff graciously took us back, showed us the room, and answered lots of questions. I found the physical presence of the machine impressive. It has a large base, a boom, and an articulating head that delivers the photons. The head itself is about two feet by three feet and the shape reminds me somewhat of a praying mantis’ head. I thought that with the addition of a pair of eyes, the treatment head could be a sci-fi villain. When used for the treatment of prostates, the head is fitted with a variable aperture collimator, the “iris,” which is used to change the diameter of the beams during the treatments.

The ceiling of the room has a large recessed area with an inset of a nighttime sky filled with stars. There are light clouds that move across the sky subtly while random stars twinkle. As I lay on the table, this fills most of my view. The staff asks for my music preference and catalogues it so it can be brought up during subsequent treatments. At this point, we have to leave the room so that the Iris can be initialized in preparation for my treatment.

Once they were ready, I went back into the treatment room and was told to disrobe from the waist down and put on a hospital gown. I then moved to the table, laid down, and the radiology therapist inserted a small diameter tube in the rectum. Apparently, this is part of the RO’s “witches brew” of small details that he uses during all treatments to passively remove gas from the bowel and help maintain the position of the prostate during treatment. After that, I was covered with a blanket, my feet were banded together, and my arms were folded across my chest and held in place with a large velcro wrap. Before covering me completely up they put a pulse oximeter sensor on my index finger. I asked about this later because I was wondering what their procedure was if a patient had a medical emergency during treatment. Although there are numerous cameras in the room, they don’t seem to focus closely on the patient. Most people close their eyes and are very relaxed for the 20+ minutes of treatment. The oxygen saturation of the blood will start to decline if there is any cardio-respiratory compromise during the treatment, so this acts like an “early-warning” system for those monitoring your radiation delivery in the control room.

The treatment table is seemingly on a gimbal of sorts and can move in six different axes as needed. Apparently, the machine will halt treatment if the prostate moves out of a predetermined boundary. I was told that the prostate is considered to be a “dynamic” organ and the therapist occasionally has to adjust the table in order to bring the treatment zone back to “zero.” I recall the table being adjusted once during my first treatment, but for my fourth treatment the robot seemed to complete the path quickly. The therapist told me that my bowels were very clear that day and there was no gas, so the prostate didn’t move. That session was over in 19 minutes.

Once I was all bundled, prepped, and positioned on the table, the RO was paged and checked everything before approval to treat was given. With the all clear, a 12-inch-thick door between the treatment room and control room closed and a red light came on. The robot made a clunking sound, turned in my direction, and the treatment head came straight up my centerline and then stopped about two feet from my head. It angled back toward my feet slightly, then I could hear the linac spin up. Game on! Every 20 seconds the X-ray machines in the ceiling were taking images and beeping. The table was pretty comfortable so I had no problem lying still. The control room was always staffed with both a Radiation Therapist and Medical Physicist during the treatment. Between prostate positioning and radiation dosing, there’s a lot going on. All five treatments followed the exact same routine.

Due to the diligent efforts of the treatment center staff, I came away from this experience believing my radiation dosages and treatment zones were exact. I’ve read recently that there are many who feel that successful radiation treatment with minimal to no side effects is primarily the result of the RO’s experience with a treatment plan and the techs administering the treatment. I chose to stay local for my primary therapy, although treatment at Duke Cancer Center was an option for me. I have absolutely no regrets.

As I finish writing this, I am two weeks out from my last treatment. On that last day, the staff gave me paperwork to explain possible side effects. I have had no changes in my bowel habits and now that I’m back to my regular diet, my stools are all normal. I may have some increased urinary frequency from late afternoon to early evening, but I’m drinking more (cranberry juice) liquids than my norm. There’s no urinary urgency. After the first week I went back to sleeping through the night without the need to get up to urinate. I have not missed a day of exercise yet and I feel the routine is beneficial to my overall recovery. Three-week checkup with the RO next week. I assume he’ll take me off the Flomax. First PSA right after Thanksgiving.

Time will tell.

Great write up. I pretty much did the same, but I'm not a good writer like you. I found that it helped a lot of people, but most importantly, it helped him.
Good luck!

enoont, your story is one of thoroughness and careful consideration. You did your homework, investigated the treatment options and make an excellent choice. I'm glad things are going well and thank you for your detailed description which undoubtedly will help others who pass through here.

Jim

e.noont...Thank you for sharing your experience. I think this thread should be required reading for low and intermediate guys recently diagnosed and struggling with how to deal with it. I credit and thank the people on this forum for providing the information that led me to elect SBRT treatment. No regrets. FYI...Cleveland Clinic was using an endorectal balloon at the time of my treatment to protect the rectum but I believe they are now also using SpaceOAR.

e.noont said...
Hello all,

I've been heading down this path for about a year now and after visiting this site as a guest many times, I finally decided this is the best place for good information and guidance.

The short story is that over the past seven years my PSA levels have increased from less than 2 to a 4.9 in late March 2019. about six months ago when I was hovering around 4.0, my primary physician ordered a PSA free with the regular test. That came back at 14%, but my overall PSA dropped to 3.7. Three months later my PSA is 4.9 and my free PSA is 12%. Referral to Urolologist followed. During this progressive rise in PSA, I have never had any symptoms. I'm 64 yo now, 72" tall and weigh 170 lbs. I never get up during the night to urinate. Any DRE I've ever had has been negative. I exercise 5-7 days per week. I eat a gluten free diet by choice. I eat lots of greens and seldom eat any red meat. I do however have a weakness for chocolate.

Before I go further I need to provide a little history. In August of 1999, at age 44, I had my employer-mandated annual physical and my PSA came back in the mid-teens. I don't have any specific numbers in my current medical history files but my big picture memory is intact. I was told to take these results to my primary physician, who saw me the next day. We repeated the PSA right away, with a PSA free component, and I only recall the primary telling me that the regular PSA dropped in half. From there I had some sort of ultrasound exam that came back inconclusive. Referral to urologist resulted in biopsy #1, which came back inconclusive. We repeated the biopsy (#2) and it came back clean. My PSA was now less than 1.0. For the next five years I had a PSA test every four months. All were less than 1.0. All DRE's were negative. After five years, at my last visit with the urologist, he told me that during my second biopsy (done using fluoroscopy) there was a tiny dot on the screen that he was able to excise and he could only speculate might have been a source of my problem. Anecdotally, I was riding mountain bikes for cardio exercise when this all started and remember being numb after long rides. I stopped this immediately with the elevated PSA scare. I can only take a wild guess that I may have had some prostatitis that resolved itself when I stopped riding.

Fast forward to this past Thursday, 4/25/19. The referral to a local urologist here is Asheville, NC resulted in an MRI. The technique is listed as "unenhanced and enhanced high resolution multiplanar, multi sequence MRI of pelvis. The machine was a GE with a 3T magnet. (I was able to remember to ask about this from readings on this site.)

Short version of Findings: Prostate volume 34 ml. Diffuse prostatitis on peripheral zone. Lesion 1: volume 0.42ml within the left peripheral zone at the mid gland and apex. PIRADS 4.

They went on to state that: "(targeting biopsy particularly to the superior most two slices of the ROI in Dynaclad is advised.)

Central gland (transition and central zones): No index lesions identified.
Prostatic Capsule: No significant abnormality.
Urinary Bladder/distal ureters: Trabeculated.

All other notations were either none or no significant abnormality.

So while I was hoping for active surveillance at worst, the PIRADS score tells me they will probably want to go to a MRI fusion biopsy. I looked up the credentials of the Radiologist online. Nothing real specific noted except for a "specialty" in abdominal imaging. I'm in western NC, and I've not found a specialist or facility with a PC focus yet. I believe there is a MRI specialist in Chattanooga, TN that I could consider for a second opinion on the MRI imaging.

Well, that's all I got for now. Any thoughts are greatly appreciated.

I am a little late on this but in case others in the future find this thread, you want to go to Duke in Durham for optimal care..

One of the 5 top PC centers in teh country.

I am in NYC and set to retire. I'll be retiring within a few miles of this medical center so I have NYC grade doctors available.