After Active Surveillance since 2013, time to explore treatment options

[Yearofthecow]

I am new here, and found out about this place from reading TallAllen's blog "Prostate Cancer News, Reviews & Views"

I am 72 now, and was AS since 2013, where a small volume 3+3 was found on random biopsy. I have BPH, and on Advodart since 2013. Prostate size 50-60cc.

I will share my lhistory. Sorry it is so long-winded.

In 2013 they "encouraged" treatment, but I elected AS.

PSA under Avodart had been running around 2.0 since 2014.

Had a follow-up biopsy in 2014, 18 core, was negative, but received a severe infection, prostatitis from it. Almost went sepsis, because they had me on CIPRO, and the e-coli infection was resistant to fluoroquinolones. From that experience, I decided to avoid TRUS biopsies hence forward. I also changed my urologist, and moved to a comprehensive center.

Have been Monitoring through MRIs, PSA's since then.

In 2019 PSA increased from 2.0 to 2.5, and MRI indicated two areas in Anterior TZ PiRad 4.0. Had a directed TP Biopsy in those areas. One area was BPH, and the other area was fragmented 3+3 Gleason.

PSA from 2019 to 2022 increased from 2.5 to 2.8. Because of the effect of Avodart, it is recommended to double the PSA to get the actual PSA value.

Had a Precision Point Transperineal Biopsy on 4/15/2022 where 15 cores were taken, from an area on the MRI done on 2/7/2022 rated at PIRAD 3. Previously that MRI area was read as a PIRAD 4.

The results of the TP Bx from two cores from the PIRAD 3 area at 3+4:

M. L1-Left Anterior Medial 3+4, Grade Group 2 (Most cells still look similar to normal prostate cells. The cancer is likely to grow slowly)

10% pattern 4, involving 1 of 1 core, 50% of tissue.

O. L1- Left anterior mid transition Zone 3+4, Grade Group 2, involving 10% pattern 4 involving 1 of 1 core, 70% of tissue.

The results of the TP Bx were one core at 3+3:

In addition, one core from the biopsy at the right apex found a 3+3:

B. Prostate, Right Posterior Medial Apex. Score 3+3 = 6 Grade Group 1, involving 1 of 1 Core 10% tissue.

I had a second read of the slides at John Hopkins, and there was a slight upgrade:

M. Gleason score 3+4 = 7 Grade Group 2, 10% Gleason pattern 4, 80% of tissue

O. Gleason score 3+4 = 7 Grade Group 2, 10% Gleason pattern 4, 90% of tissue

B. Gleason score 3+4 = 7, Grade Group 2, involving 5% of 1 core. Too small to accurately assign a percent of pattern 4. This was previously viewed as 3+3.

TULSA focal therapy was suggested, and I requested a PSMA.

PSMA REPORT:

IMPRESSION:

1. There is an intense focus of pylarify activity in the anterior left prostate gland corresponding to MRI finding and concerning for prostate malignancy.

2. There are nonspecific left pelvic lymph nodes with subtle pylarify uptake which are uncertain to be metastatic or benign.

PROSTATE BED:

There is focal Pylarify uptake in the prostate bed, suspcious for malignancy.

* intense focal radiotracer activity in the anterior left prostate gland at the apex on image 321, correlating with prior MRI findings.

LYMPH NODES:

Nonspecific degree of Pylarify update in the lymph nodes is equivocal for malignancy:

*Mildly prominent left common iliac node measuring 10x9mm in CT image 264 without increased radiotrace uptake. It is nonspecific.

*Similarly, there is a nonspecific left obturator node on CT image 304 with mild Pylarify activity roughly equivalent to blood pool measuring 17x18 mm. (I wonder if the "blood pool" is from the TP biopsy I had 4 weeks earlier?"

Skeleton:

There is no focal Pylarify uptake within the skeleton to suggest metasatic disease.

I am waiting on the results of the Decipher test.

Consult with physician, indicated all options were open to me, though they would not recommend continued AS.

While not a "hard sell", they are trying to push me in the direction of TULSA PRO.

Based on reading the analysis and impressions by Tall Allen on TULSA, I am currently not inclined to take that approach. It sounds good on paper, no incisions, real-time monitoring under MRI, temperature control, etc., but they are putting a probe up your urethra, under general anesthesia, followed by a two week catheter, and recovery period, with a fair probability one may have to revisit additional treatment options down the road. I don't know if it is worth it.

I am asked my urologist for a radiologist recommendation because I want to understand all my options.

I am in bay area in Northern California, going to Stanford, and have no complaints, but want to consider one or two other places for second opinions.

Any recommendations for second opinions, or other things I should look at, are sure welcomed.

Thanks

[Javelin18]

Another option for treatment is Stereotactic Beam Radiation Therapy. (SBRT). This uses real-time MRI to guide radiation to the cancer, without harming surrounding tissue.

University of California San Francisco may be an option. It is also an NCI designated comprehensive cancer care center.

[Yearofthecow in reply to Javelin18]

Thanks Javelin. Definitely on my list. I see various conversations regarding SBRT, and need to understand if there are differences with different variations of SBRT

[Tall_Allen]

At Stanford, Mark Buyyounouski is a highly respected RO. At UCSF, Alexander Gottschalk is their SBRT expert.

You have a couple of enlarged lymph nodes. Lymph nodes become enlarged for a variety of reasons, and the fact that they aren't showing a marked increase in radiotracer uptake suggests they aren't cancerous.

The "blood pool" comment means that they look for the radiotracer uptake in tissues to be significantly higher than the uptake in the blood in the background.

[Yearofthecow in reply to Tall_Allen]

Thanks Allen, appreciate the insight and radiation oncologist names.

Is there one type of SBRT that is better than another in your analysis? I see some folks pushing ViewRay as more accurate, and less damaging to other areas external to the Prostate

Thanks,

John

[Tall_Allen]

Some people fall in love with new technology - get latest iphones, etc. SBRT was originally only done using CyberKnife (2003), then VMAT (~2008), and now Viewray MRIdian/Elekta Unity. Dr. Kishan uses MRIdian to reduce the treatment margin from 4mm to 2mm, and believes it to be equally effective at getting all the cancer. It lowered acute side effects at 1 month post treatment, but by 3 months, it made no difference. Will it interfere with treatment effectiveness (as cutting closer in RP can)? That remains to be seen. If I had to guess, I'd guess it is equally effective - we'll know for sure eventually.

I think all the platforms used are good - very low toxicity and very effective .The experience of the RO and the care she takes is more important.

[Yearofthecow in reply to Tall_Allen]

Thanks

[MackworthGuy]

YearoftheCow,No advice for you, just a comrade in arms. Been on AS for 2 years and now 57, just diagnosed with G7 at Stanford. Saw Boyyounouski a week or so ago looking at radiation options vs surgery. Good luck on your journey.

Keep exploring options and learning and understanding.

[Yearofthecow in reply to MackworthGuy]

I definitely want to consult with Dr. Boyyounouski since most my diagnostics were done at Stanford

Just looking at your Bio Mac, have you considered a PSMA scan and one of the genomic tests to get more data points?

Thanks Mac, and all the best to you

[MackworthGuy in reply to Yearofthecow]

We are doing Decipher to help determine strength of our response. Dr. B suggests HDR+EBRT and if Decipher says aggressive then likely short term ADT. I still need to compare to surgical option(s) though I’m leaning radiation. No thought of PSMA at this point since just newly diagnosed with G7 and no indication (MRI or DRE) that it is external to my prostate. I liked Dr. B but he has a pretty “driven” personality. It was t as much of a discussion as he said what he thought for treatment. He answered all my Q’s but it wasn’t a give and take like a coffee shop conversation. 😀. But as another friend said, I value is skill over his bedside repartee. Stanford has been a great experience for me all around so far.

[Yearofthecow in reply to MackworthGuy]

I am also in the evaluation phase, between TULSA PRO and Radiation. I just asked my urologist at Stanford for a referral for radiation, so I imagine I will setup a consult appointment sometime this week. I plan to ask for Dr. B since I believe he has the most experience in radiation therapy there.

I don't know if you know who Mark Scholz is, but his book "The key to prostate Cancer", discusses the pros and cons of different options.

The book indicates with data that seeds + external radiation, not only offers very high success rates, but without reoccurrence.

This assumes it is locally contained.

Even with just external radiation alone, the success rate is high if it is locally contained.

It may come down to what has the best side effect profile.

None of this is trivial, and the different types of radiation therapy, from IMRT, SBRT, brachytherapy, proton therapy, or a combination, with or without ADT does not make it easier.

I appreciate the heads up of your interaction with Dr. B., and it will help me prepare questions to ask.

I plan to follow TallAllen's suggestions for questions:

prostatecancer.news/2017/12...

One thing that has been a positive experience at Stanford, is utilization of follow-up questions with MyHealth online to the doctor, and they usually get back pretty quickly with an answer.

I really recommend using that additional questions arise.

All the best to you Mac

John

[Yearofthecow in reply to MackworthGuy]

Hi Mac. Just met with Dr. Buyyounkoski to discuss my case. Your analysis of Dr. Buyyounkoski is pretty accurate based on my experience also, and the conversation was driven by my questions.

The letter he wrote regarding my consult, and sent to me on the Stanford MyHealth online was very detailed, and provided a good summary of options. A certain amount of that letter was obviously in a form letter style, since the treatment options, side effects, and how the different radiation options are applied are pretty standard.

He noted in the report that I was leaning toward SBRT, unless the decipher came back as high risk. I assume he they would then add ADT for high risk, but I need to clarify that with him. I told him that I would want fiducial markers placed transperineal, not transrectally, since I received a severe infection from a transrectal biopsy in 2014. He told me they have only applied the fiducial markers transrectally without any cases of infection, but said he would consider having it done that way. He noted in the report that the patient "would require transperineal fiducial marker placement", which told me he was listening to me. That is a good sign.

He indicated before anything is done, we need to see what the decipher test provides, and noted that any follow-up questions or concerns could be handled through MyHealth for correspondence.

One thing not in the report that I asked him about is having SpaceOAR Hydrogel placed to provide some protection to the rectal area from radiation. He said they don't do it, and it was not necessary because the current external radiation as applied, is very precise, and minimizes effects outside of the prostate. I need to investigate that further.

According to this study, which was also written by TallAllen, it appears that Space OAR does not add much to the case for it though:

prostatecancerinfolink.net/...

One last impression I have is that he is a very evidenced based doctor, and I think that is a good thing.

Just wanted to share my experience with Dr. B with you, and agree with your assessment.

John

[MackworthGuy in reply to Yearofthecow]

Glad you got in and got more info. His team has been very responsive to my questions via their app. His resident called me to answer a few questions and review the notes since some of it had become a blur to me. So here we are, apparently both awaiting the decipher test! Glad you felt good coming out of your visit and good luck with your upcoming decisions on treatment.

[GrnPndr]

Certainly should look at Proton radiotherapy!

[Yearofthecow in reply to GrnPndr]

Any specific center that does Proton RT you would recommend?

When I decided to pursue AS in 2013, proton therapy seemed to be the wonder treatment that was sold as very little side effects, and the Bragg effect kept the radiation in the Prostate, with no radiation side effects outside the Prostate

The problem I have is it is very difficult to navigate through this, and differentiate between actual confirmed studies, and marketing. That seems to apply to every treatment path, though some have more double blind data to back it up than others.

To make things more difficult, the data used in some analysis is compared with older technology that has been significantly improved, so we are not comparing apples with apples.

Just saying it is not an easy process sifting through all this.

Do you have a recommendation to a center that utilizes Proton Therapy for Prostate Cancer GrnPndr?

Thanks

[PTvsPC]

I would strongly recommend looking into targeted treatments, some of which are coming online soon. One is Theranostics which is available in Germany and seeking FDA approval in the US (clinical trials just concluded at Loma Linda University). Another is "drug factory" seeds which are implanted near the tumor to send the medication directly to the cancer cells. Clinical trials for this treatment are starting this summer (2022) at Rice University. There are other similar treatments popping up, so I would highly recommend researching them and consider entering a trial (that's what I'm doing). You could also fly to Germany for the Theranostics treatment although it'll cost the price of a small house in the midwest.

[Alexandr1]

I am in awe of Tall Allen and he is correct, Tulsa Pro is not right for everybody—but it sure was right (so far!) for me. Had a 3+3 and a 3+4, was on the edge of Active Surveillance or any of the other treatments. Chose Tulsa Pro (September, 2019 in Germany) due to its really low side effects, the fact that it is repeatable if necessary and does not preclude other, later, treatments if necessary. I thought I would at least knock the PC back for a number of years if not eradicate it completely. So far, so good—three MRI’s showing cancer was apparently fully ablated, each MRI reviewed both in US and Germany. No side effects, checked into surgery center on a Wednesday, had surgery in the afternoon, was in a taxi back to my hotel Thursday morning and on a plane to US on Saturday. The procedure itself was a snap, all I recall is sitting down on the MRI table while the IV was inserted, next thing sitting in my chair in my room looking at my nurse, asking “Is it over?” Again, no side effects and catheter (which bothered me when I first heard about it) was really easy. A bag for first day, then a Foley catheter for a week. Look it up, had never heard of it, but damn makes that catheter thing a snap. All procedures have some level of discomfort and even risk, and none (except removal) are necessarily 100% but for me it’s not a high deal if in 3 or 4 or more years in the future I do it again—-especially now that it is offered all over the US. Good luck!

[Yearofthecow in reply to Alexandr1]

Glad it worked for you Alexander, and wish you continued success.

[j-o-h-n]

Greeting s Yearofthecow, I was born in the YearofthePca............

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 05/24/2022 7:38 PM DST

[SPEEDYX in reply to j-o-h-n]

You definitely were created not born...the cap does wonders for that handsome face!!!

[j-o-h-n in reply to SPEEDYX]

That's a substitute hat.... I can't find my Riker's Island hat. I've had that hat for many years ever since I pitched for the child molester softball team...

Handsome is not the correct adjective......Devilish is the one.....

85 years old and I still can pitch a no hitter against a no batter any day of the week....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 05/24/2022 9:37 PM DST

[SPEEDYX in reply to j-o-h-n]

Thats why your the ACE here!!!

[j-o-h-n in reply to SPEEDYX]

I know you meant APE............

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 05/24/2022 11:24 PM DST

[Yearofthecow in reply to j-o-h-n]

Same to you John, Good Health and Humor.

My first name is John also

[Hidden]

At some point, and I would suggest soon, you are going to have to make a decision and go for it. Just studying the options is not going to cure your cancer.

Of course you need to know what you are possibly in for, but everyone is different and each treatment has different side effects for different people, and you will only know how you will be affected once you have had the treatment.

To quote Theodore Roosevelt "In any moment of decision, the best thing you can do is the right thing. The worst thing you can do is nothing."

The cancer will only get worse the longer you take to decide what option to take.

[Yearofthecow in reply to Hidden]

Thanks Parrot. I am going to take some time to decide. I am not just "studying options", I am making an informed decision. Which is what we all should do.

Just making appointments with various specialists takes time.

I have had two appointments with the physicians suggesting I consider TULSA PRO, and just got a referral to a radiation oncologist.

I have been on Active Surveillance since 2013 when a small volume 3+3 was found. There was a fair amount of pressure to choose a treatment option back then. It was through a second opinion with a Prostate Oncology Specialist that it was determined that I was a candidate for Active Surveillance.

Yes, everyone's experience is different, but the most important thing in my view is to make an informed decision.

All the best to you Parrot