This week in PCa

Hi, all. Thought I’d bring you up to date on this week’s happenings related to my husband’s newly diagnosed “high volume” G6 (UCSF-CAPRA score=3/low intermediate risk). Feel free to share your thoughts/experience…

We sent records off to the NCI for the tumor board review that was supposed to happen Tuesday. No word from anyone yet. Paul tried to get his slides so he could send them as well, but the pathology office doesn’t digitize them but said they would send the originals to NCI so they could scan and return them.

We got an appointment for an e-consult with urologic oncologist Dr. Hao Nguyen at UCSF on 8/11 (the first date available) but have a preexisting appointment with Paul’s urologist on 8/10 to finalize a treatment plan. I tried to reschedule the urologist but was unable to because the doc was out of town. No one bothered to tell me, though, but had to call back to find out why the scheduler didn’t call back as promised.

We had our consult with a local radiation oncologist (Dr. Join Luh) who seems very competent and wrote IGRT practice guidelines last year for ASTRO. The funny thing is that he said during the consult that he would do a moderately hypofractionated image-guided IMRT treatment protocol over 5 weeks and that brachytherapy is typically used for low-risk patients, but when we got a copy of his consultation report, he mentioned treatment over 8.5 weeks (dose of 77.4Gy to 79.2Gy in 1.8Gy fractions) and included the details for brachytherapy, if Paul were to opt for it (despite having dismissed brachy as not appropriate). I asked Dr. Luh what testing/imaging he’d suggest that could be done locally, and he said a pelvic MRI with prostate protocol. I asked my husband’s PCP to order one and she did, only to find out that the imaging shouldn’t be done sooner than 6-8 weeks after biopsy because residual blood from the core sampling can mistaken for cancer. So that can’t happen until 8/23.

Thursday we received our first bills, one for pathology and another one for the date of the biopsy, which I had assumed was from his urologist. Despite havng provided the information on Paul’s two insurance policies to the urologist, neither bill showed that he has any insurance and that we were responsible for all of it (almost $3,000). Had to make multiple phone calls to get things straightened out so insurance would be billed. And come to find out that the second bill was not for the doc but facility/staff/equipment/cleaning charges and the urologist’s fee would be billed separately. Well, the biopsy was done in the urologist’s office, so that sounds like unbundling to me, which is considered a fraudulent billing practice. I plan to find out from an expert in my professional organization who can tell me for certain if that’s the case or not.

What a convoluted mess!

Your experience sounds typical. Including the insurance/billing stuff. It takes multiple calls and occasional serious prodding to get it right. On the other hand, is it REALLY something to stress about if you think your docs are bending the rules? I'd suggest saving your energy for the care and treatment questions, not billing practices. (as long as things are being submitted and paid)

Nothing wrong with IGRT, just few use it anymore as the other modalities are equally accurate and don’t require the fiducial marker insertions.

Of all treatments, including surgery, HDR brachytherapy is the most conformal treatment to the prostate and does not require the radiation to pass through the body. Thus, less peripheral damage to the healthy tissue. You really should investigate it. It worked well for me. He can use mono-therapy and would require either one or two procedures. Far more convenient than two months of every day IGRT or even 6 days of SBRT.

So sorry to hear about the billing, but sadly this is likely to be an ongoing thing. It requires a tremendous amount of energy to keep up with--all during a time when you're expending a tremendous amount of energy on getting educated and making a treatment decision.

I don't understand the comment about brachy only being used for low risk patients, which I know is not correct. Even then, I believer your husband is low-risk (pending his second opinion of his biopsy slides) as a G6, despite the fact that he has a high volume. Like JNF, I had HDR brachy (plus IMRT) as a high-risk patient and have done quite well, which clearly makes me favorably biased about that treatment option.

At any rate, your husband should have all of the radiation types plus surgery as valid options. I think as you move through this process, one of those choices will emerge as the most comfortable choice to the two of you. Hang in there and thanks for reporting in.

Vee, I had bone scans and CT scans. Bone scan was unremarkable. CT showed significant enlargement of the seminal vesicles, indicating cancer, and several enlarged pelvic lymph nodes. This was bolstered by the nomograms that indicates 99% probability of capsular escape and 65% probability of node involvement.

Coupled with the already high risk dx based on PSA, positive cores and G grades, I was directed to the most aggressive treatment and basically denied surgery as it would not be curative and would require salvage radiation with three surgeons concurring.

Studies showed the combination of external beam and brachytherapy to be the most effective for cancer control with limited treatment side effects. As Vynal points out, I was not a candidate for brachytherapy mono-therapy and needed the external beam radiation to extend out from the prostate and cover the pelvic lymph nodes. I chose HDR brachytherapy for its advantages over permanent seeds particularly when it comes to radiating the seminal vesicles and its greater control over the doseage and areas of radiation. ADT was added to weaken the cancer and make it more susceptible to radiation and control any cancer cells that may have already escaped the radiation field.

In all, the combination has worked with total cancer control and no negative treatment side effects. For your husband, G6 even with high volume, is not high risk and will not spread from the prostate area. Thus the HDR brachytherapy may be suitable for mono-therapy. You will only know when you get a proper assessment from a board certified radiation oncologist that uses HDR regularly. Your urologist is not the one to determine as he/she is not board certified in radiation oncology.

Here is an excellent website that explains HDR. It is by the father of HDR, Dr. Jeffrey Demanes. He started using it in 1981 and has treated more than 25,000 people. Most recently he retired as the head of the department at the UCLA Medical Center, one of the very top medical centers. The site is www.cetmc.com.

I would be happy to speak with you and/or trade emails with more specifics. My email is in my profile, just click on my user name. I see you are located in the Bay Area. There are excellent radiation oncologists there and some specialize in HDR. Do a little research and you will find them. I’ll go back in my notes and see if I have any contacts. There is also a Brachytherapy Association that may provide information. See www.americanbrachytherapy.com.

Thanks for the feedback, Michael. I think the the rad onc was saying that brachytherapy alone was usually used only for low risk patients. Beyond the risk stratification stuff, my husband’s pathology report mentioned PNI in four cores on the right side. Could that be why he was steering us away from brachytherapy?

I’m hoping someone can shed light on this part of the report (like, is he talking about HDR or LDR? maybe LDR?):
“If he opts for prostate seed implant brachytherapy, I would use stranded I-125 seed to treat the entire prostate gland. I noted that brachytherapy allows for giving a higher biological equivalent dose to the prostate while minimizing dose to the surrounding bladder and rectum, but that side effects will occur early after the implant when the activity of the seeds is at their highest.”

Post Edited (Vee) : 8/1/2021 11:20:43 AM (GMT-6)

Don't often post any more but when I see folks thinking about LDR I try to lend what I know and have experienced. I was an intermediate 3/4 guy with some potential capsule escape. The expert stranded seed placement by the late Dr. Peter Grimm seems to have taken care of that issue since I am 7 years out and doing fine. I was walking miles the next day after the procedure and have had very mild and manageable side effects. The only issue remaining is very low sauce which I can live with. Sensations are all still there along with healthy libido.

I would caution you and the use of FloMax which caused more issues than the LDR treatment! Follow directions, carefully and wean off that stuff ASAP. Finally, plan on walking as much as possible which eliminated most of the Side Effects in a few weeks.

Sounds like you have done the research and talked to the right docs. Best of luck on what ever treatment you pursue.

Thanks, browntrout, for sharing your LDR experience! I read somewhere, probably somewhere on this forum, that LDR seed implantation is an “art form” so probably best to travel for. How long did your post-brachytherapy nausea last?

Thanks for your input, Jim. I’ll read your LDR account right now and make sure Paul sees it too.

Jim, what a wonderful post! Informational, inspirational and funny to boot! We both laughed out loud when reading it.

Browntrout, thanks for the suggestion about antinausea meds and walking. Both are good simple solutions.

Vee said...
Jim, what a wonderful post! Informational, inspirational and funny to boot! We both laughed out loud when reading it.

Browntrout, thanks for the suggestion about antinausea meds and walking. Both are good simple solutions.

Vee, thank you. I'm embarrassed that I haven't really updated it in 7 years but there is honestly not much else to say. For eligible patients I'm convinced this is a great choice since it is curative, is relatively easy and the SE's are practically non-existent. If you or hubby want to email me with ANY questions feel free as my email is open. Also would be glad to chat if you guys would find that helpful. It's funny how things like sexual and urinary issues seem private until something like prostate cancer comes along and then it becomes like talking about the weather...

Jim

P.S. Vee, you might want to consider creating a signature like the ones you see for most of us. You can do that in your profile. Putting in a few facts will help us as we go along and you don't have to lean on the memories of old men to recall your situation!