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Help deciding on treatment

MrGreenJeans profile image
27 Replies

Discovered this forum a month ago and have found it to be a wealth of information, with very educated/informed members. Hoping that you can spread some of your wisdom and help my finalize my decision with treatment. I've posted more details in my profile as well as write ups from MSKCC on my Biopsy, MRI and PSMA Pet Scan.

Age 60, Diagnosed March, 2024. MRI -> Biopsy -> PSMA PET

Gleason 4+3=7. 4 of 11 biopsy samples positive, other 3 were 3+3=6. Original biopsy results confirmed by MSK.

PSA 5.5, PI-RADS 3 (or 4?), Decipher .55 PSMA PET – no spread. PET results reviewed and confirmed by MSK.

I’m officially classified as unfavorable intermediate, although I’ve been told that I’m borderline with favorable intermediate based on only 1 sample of 4+3.

Dad diagnosed when he was around 70 (may have been Gleason 3+3). Had LDR and possibly ADT and he has been cancer free since (he’s currently 92).

I’ve spoken with a few Surgeons/RO’s in different practices and have decided on MSK mainly based upon their reputation.

I’ve ruled out surgery and have been given a few options from MSK for non-surgical options:

1 - SBRT + short-term ADT +/- brachy boost

2 - SBRT + brachy boost +/- ST ADT

In my conversation with Dr. Gorovets to discuss brachytherapy, he didn’t think that all three therapies were necessary, but had a slight inclination toward option 1 (SBRT + 6 mos. ADT) given my .55 Deciper score. Gorovets apparently studied under Dr. Zelefsky.

Questions/Thoughts:

How important is a Dr’s. skill in the application of external radiation – IMRT/SBRT? The Long Island-based RO who would be responsible for my external radiation is Dr. Andrew Barsky and he doesn’t appear to have a long track record (completed residency in 2021). I chose (at a significant cost over my primary insurance) MSK based upon their reputation. Is it safe to assume that sticking with a renowned cancer center of excellence should allay my concerns about a particular Dr’s. level of experience? For surgery/brachy I can see that a Dr.’s skill is more critical, but it is my understanding that a lot of the external beam treatment is automated and guided by the fiducial markers. Not sure if this is a correct assumption or not. I believe that if I chose SBRT, I have the option of travelling into NYC, so I’d have the option of a more experienced Dr. I’d need to stay local for 26+ sessions of IMRT which is still an option for me. If I changed course and went with brachy, Dr. Gorovets would be the doc and I'm comfortable with him.

In making my decision about IMRT vs. SBRT, when I mentioned the Prostox test to the MSK resident, he mentioned that it’s not utilized there, so I’m leaning towards IMRT to be on the safe side.

I had preferred going the brachy route, but again, in looking for any additional increased % of cure rate, will most likely go ADT. For ADT was told that it would be injections of degarelix, Lupron, or pill format of Relugolix if approved by insurance. I’d much rather go the pill route as that would allow me to discontinue quickly should the SE’s be too much. I’d then look to change course and go the HDR/SBRT route of treatment. From what I'm reading, the pill format is most likely very expensive and not covered by insurance.

Thanks for any thoughts/opinions!

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MrGreenJeans
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27 Replies
ToolBeltZia profile image
ToolBeltZia

Sorry to have you join our "club".

I was diagnosed at age 68 with PiRAD 3, PSA 7.7. Biopsy found 1 4+3, one 3+3. Decipher was 0.86. PSMA PET showed confined to prostate. I chose SBRT with 6 months Orgovyx. My last radiation was 12/26/23 and I ended ADT on June 4th of this year. My latest PSA on June 28th was 0.19.

I believe the skill of the RO is important in SBRT. My RO was able to visualize my primary lesion on the MRI, PSMA PET, and CT and used that info to assure my urethra did not receive any radiation "hot spots". Additionally while the whole prostate received 36.25 Gy the primary lesion was boosted to 40 Gy. While the RO is generally not in the control room for all of the IMRT fractions my RO was in the control room for each of my SBRT fractions. Additionally he used a Varian Edge linac which is a top of the line unit.

Please check my profile for my posts about my journey, fire away with additional questions, and Stay Strong Brother, we got this.

MrGreenJeans profile image
MrGreenJeans in reply toToolBeltZia

Thanks for the input, hadn't thought about the initial setup portion/visualization. I'm wondering how I go about requesting a specific doctor after I've already spoken to two other RO's.

Tall_Allen profile image
Tall_Allen

I think there is a typo in your post - #1 and #2 look pretty much the same, just in a different order.

Here are representative cure rates:

prostatecancer.news/2018/10...

The RO's expertise and the care he takes in contouring and developing your treatment plan are critically important. At MSK, Sean McBride is excellent!

It is not likely that 6 months of ADT will be intolerable.

MrGreenJeans profile image
MrGreenJeans in reply toTall_Allen

Thanks Tall_Allen. There was no typo, I was given an option of SBRT/Brachy or SBRT/ADT. The RO that I spoke with about HDR brachy had a slight preference for the SBRT and ADT given my decipher of .55.

Tall_Allen profile image
Tall_Allen in reply toMrGreenJeans

For your "unfavorable intermediate risk" PCa, the SOC is one of the following:

1)brachy boost therapy (IMRT to a wider area with a brachytherapy boost to the prostate) with 6 months of ADT:

prostatecancer.news/2017/05...

2) SBRT with 6 months of ADT:

prostatecancer.news/2018/10...

Hitting the prostate with a hypofractionated boost dose (either with brachytherapy or SBRT) is necessary to get the biologically effective dose in the prostate high enough to be curative. It is unnecessary to do both because either can be used alone, and using both adds to the toxicity. SBRT was modelled on the radiobiology of HDR brachytherapy, and can be used instead, not in addition to.

Dr. Kishan has convinced me that a short term of ADT improves results a bit in unfavorable intermediate risk PCa. It was earlier thought that the higher biologically effective dose with HDR-BT or SBRT monotherapy would be enough, but he has found that results can be improved by a few points with ST ADT. It is a judgment call, but your higher-than-average Decipher score should be considered.

MrGreenJeans profile image
MrGreenJeans in reply toTall_Allen

Thanks for the detailed reply. I just re-read what my RO from MSK provided me, and it is a bit confusing based on what you are stating.

"...we sometimes offer LDR for UIR prostate cancers that have less aggressive features (such as GS 3+4, low Decipher). A more aggressive option is HDR brachythereapy followed by SBRT to the prostate only (25Gy/5 fractions every other day), which has been shown to be effective for UIR prostate cancer (Kollmeier et al. IJROBP 2020, Spratt et all BJUI 2014)."

The way I'm reading this is that one option is to have both HDR brachytherapy along with SBRT. I'm not sure if this is a moot point, as I'm most likely going the ST ADT + SBRT route. I did pose another question in this thread regarding the differences between MRI guided SBRT and CT guided SBRT as these appear to be different options provided by MSKCC and I'm not sure why one would be chosen over the other. In viewing some of Dr. Kishan's videos on MRI guided SBRT (some 5 years old), he seems to make the case that this is the preferred method for accuracy and and shows a number of studies that show lower side effects when this is used over CT based SBRT. Thanks again for your input and advice.

Tall_Allen profile image
Tall_Allen in reply toMrGreenJeans

MSK did that clinical trial (BT+SBRT) because Zelefsky (who was there then) came from a brachy background and SBRT was new to him. SBRT was designed to duplicate HDR-BT except with external beam, so there is no point doing them both (the clinical trial at MSK did not compare them).

Kishan found there was lower side effects at 1 month with MRIdian but no difference by 2 months, so any advantage is short-lived. OTOH, decreasing the margin from 4 mm down to 2 mm may allow more cancer to go untreated. His trial did not last long enough to explore that.

But if you are having whole-pelvic treatment, there may be an as yet unproven advantage to protecting the bowels with MRI-targeting.

curtisbirch profile image
curtisbirch

My diagnosis was very similar to yours and I was initially considered intermediate unfavorable. Most of those doctors I initially consulted gave me only dual treatment options much like you. Then I was evaluated by a pioneer in HDR brachytherapy, Dr Dimanes out of UCLA (who retired several years back. I ended up going with a student of his Dr Michael Wong because he works out of Kaiser Santa Clara (Kaiser is my provider). The thing with Dr Dimanes, which set him apart, was his confidence in my need to pursue only a single high dose rate (HDR) brachy therapy. His diagnosis was backed by very strong 10-year studies. I was concerned with combining another therapy for lifestyle reasons as I was close to 50 at the time. I am so glad I went this route as my side effects were little-to-none, and you are done with treatment quickly. There are two fairly straightforward procedures. It took me well over years to reach a nadir below 1, which I have learned is a very good thing as far as outcomes. I'd be happy to share more on my treatment if you'd like to learn more. I can say in retrospect that choosing a monotherapy approach was the right decision.

MrGreenJeans profile image
MrGreenJeans in reply tocurtisbirch

Thanks, I've seen a number of Dr. Dimanes videos speaking on PCRI.org. I don't necessarily have an issue with a dual treatment, but had some concerns about ADT and about choosing the right doctor to administer the radiation.

rosenjpj profile image
rosenjpj

I had MRI guided SBRT at MSK with Dr McBride in the city and four months of ADT (Orgovyx). Very similar profile as you (unfavorable intermediate risk). I had an excellent experience with McBride and MSK was outstanding in every way. I travelled into NYC from central Jersey for the five treatments and took public transit each time. It was worth it. Now almost a year since SBRT. Six month PSA was .33. Next one coming up in early August. Short term side effects were tolerable and went away after a month. Having a bit of GU side effects now but managed with meds and not really a problem. With Orgovyx I had a quick return to baseline testosterone and recommend it for that reason. You can work directly with the manufacturer for financial help and MSK can help you with getting that set up. I would go with the most experienced doc and agree with TA that McBride is at the top.

MrGreenJeans profile image
MrGreenJeans in reply torosenjpj

Thank you, that's good to know. I'd be taking LIRR in if treated in NYC and would not be a big deal for SBRT, IMRT would be a commuting and work problem. I see that Dr. McBride is recommended by a few here, would need to find out how to see him after already consulting with other RO's. Is it just a matter of asking I wonder? Will also need to push for Orgovyx unless it's prohibitively expensive.

rosenjpj profile image
rosenjpj in reply toMrGreenJeans

Best way to reach him is the MSK portal.

rosenjpj profile image
rosenjpj in reply torosenjpj

Or call the office. 866-889-0718

MrGreenJeans profile image
MrGreenJeans in reply torosenjpj

Thanks, kind of figured that, my slight concern is that I've already consulted with two RO's and now I'm asking to speak and possibly use a different one. Not sure if that will cause any friction.

MrGreenJeans profile image
MrGreenJeans in reply torosenjpj

I'm looking to possible schedule a consult with Dr. McBride and was wondering why he chose to use MRI guided SBRT for your treatment vs. the more standard CT-guided SBRT? From what I've I'm reading/viewing, it appears that the MRI allows close to real-time ability to see the prostate's position, whereas the CT method only gets a snapshot of the prostate's position every minute or so. For me, it would appear to be a no-brainer to go this route. Were fiducials and/or space OAR needed for your SBRT? My RO's (Gorovets, Barsky) writeup appears to not be pursuing the MRI guided SBRT and I'm wondering why.

rosenjpj profile image
rosenjpj in reply toMrGreenJeans

Several reasons. First, McBride did the planning himself for the MRI guided SBRT in the city and I wanted the very best. All of MSK is first rate but it was the personal care from the department head that made the difference for me. Also no fiducials were needed. I did have SpaceOAR however. I believe the MRI guided version turns off when movement causes the target to move out of threshold which allows it to be more precise and have less radiation exposure to healthy tissue.

MrGreenJeans profile image
MrGreenJeans in reply torosenjpj

Thanks, that all makes logical sense to me.

rosenjpj profile image
rosenjpj in reply toMrGreenJeans

Good luck! Ping me if you would like to talk offline.

tarhoosier profile image
tarhoosier

This is not an answer to your question about which is right for you.

What was/is right for me is to find the best doctor specializing in my condition and stage that I can, without regard to distance and cost involved. I have been fortunate to have the time and money to do so. I am aware that is not possible for others.

tsim profile image
tsim

TA had some good advice and options, 6 months ADT piece of cake

AnOrangeADay profile image
AnOrangeADay

Stereotactic body radiation therapy (SBRT) is a technically demanding prostate cancer treatment that may be less expensive than intensity-modulated radiation therapy (IMRT). Because SBRT may deliver a greater biologic dose of radiation than IMRT, toxicity could be increased.

ascopubs.org/doi/abs/10.120...

j-o-h-n profile image
j-o-h-n

Stick with MSK and us........

Good Luck, Good Health and Good Humor.

j-o-h-n

Darryl profile image
DarrylPartner

Welcome to our Malecare prostate cancer support group

curtisbirch profile image
curtisbirch

You should consider a monotherapy like HDR Brachy to help you weigh the postives and negatives of these different scenarios. You will also want to weigh the possible negative impacts on quality of life that dual therapies present. My biopsy and PSA were very similar to yours but certain ROs were calling for dual treatments due to their concern that I was intermediate unfavorable. However, I had very little 3+4 in contrast to a considerable amount of 3+3. I got a second opinion on my MRI at Cornell Weil and there was belief that some doctors were misreading it due to camera shake. Ultimately, monotherapy like HDR brachy, with a high success rate on an intermediate diagnosis like mine, was something worth researching. I read a wide range of studies as a result. Since HDR brachy was a way to avoid ADT, etc., it became more of a no-brainer the more I learned. I talked to a ton of doctors - I used to bring a tape recorder into my consultations with them. The answer will become clear as you go through the process of saturating yourself with possibilities and options. In the end, there won't be a decision without some uncertainty. But the more you research, the more will be able to trust your gut. Best of luck with your journey - you are definitely on the right track.

BettyandBob profile image
BettyandBob

Hello,

You have certainly done your research - very smart and the information will be extremely helpful on your journey.

I can respond to your last question/issue re:ADT. My choice was Orgovyx pill, taken daily at bedtime. I was on it for 6 months following radiation treatment (6.5 weeks). PSA is undetectable (0.01) and I’m feeling good, strength is back to normal and hot flashes are down to one a night. Sometimes none at all.

My ADT regimen was good with the Orgovyx. Very few side effects— nighttime hot flashes/hot sweats the only troublesome one.

I would recommend the pill of insurance takes it, as it is quite expensive — around $2K/month.

Wishing you well as you take your next step.

TL

groundhogy profile image
groundhogy

Here is a good website to compare odds of cure for the major treatment paths. You have to determine your stage, low risk, intermediate, or high risk (risk of recurrence). So if you are intermediate, pull up the intermediate chart and you can see the odds of 10-20 yr survival, etc. based on the treatment you pick.

prostatecancerfree.org/comp...

It is best viewed on computer or just print it on paper. Not so viewable on phone.

To make the graphs easier to read, i drew a dot on the endpoints of the elipses, and then drew a line through the dots. This turns the elipses into lines.

Also be aware the the graphs don’t show any salvage radiation benefit. This would boost the surgery odds up a bit.

And, this is a very dysfunctional industry from my view. Loads of bad info mixed in with the good info. Same with the docs. Many of them are more dangerous than the cancer.

MrGreenJeans profile image
MrGreenJeans

Replying to my own post, and hoping to get some input and finalize my decision.

Thanks to all for all of their input and suggestions. A few replies to my questions as well as mentioned on other posts, there were a number of suggestions to speak with Dr. McBride at MSKCC. I recently attempted to schedule an appointment with Dr. McBride and was informed that I must continue to work with Dr. Gorovets, one of the RO's I originally spoke with about brachytherapy. It appears that if I move forward with MSK and SBRT, I'm locked in with this particular RO or the one on Long Island that's been and MD for only a few years. I had heard that Gorovets studied under Zelefsky and saw a few positive comments here on healthunlocked, but other than than that and a few generic online reviews, don't know much about him. Is it safe to assume that a MSKCC RO working in NYC is the safe way to go? Thanks again!

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