My Story So Far - 53yo / PSA 130

Some thoughts:

Have you had a biomarker (genomic) test like Decipher, Prolaris, OncotypeDx, or one of the dozen others in order to look for genes, proteins, and tumor markers that tell more about the prostate cancer?

Have you had a genetic (germline) test to see if you have inherited any prostate cancer-related gene mutations from either of your parents. (like BRCA1/2, ATM,
CHEK2, HOXB13, MSH2, etc.)?

Lupron often takes quite a few weeks before you experience side-effects. Are you tracking your testosterone level? That’s what will correspond with the Lupron side-effects kicking in.

You mentioned your concern with “radiation only can lead to bowel issues down the road, which I want to avoid at all costs.” Remember that what radiation doesn’t hit won’t be impacted. I asked my radiation oncologist to work with the team dosimetrist and physicist to show me how much radiation entry dose, scatter, and exit dose might affect nearby otherwise healthy tissues and organs. We then focused on avoiding those collateral impacts. (I’m now almost 5 years post-proton radiation treatments and have experienced no bowel issues.)

Also, the surgeon’s comment about “Radiation hits a larger area and is more prone to unwanted side effects” might be a valid point. (Both radiation and prostatectomy are “full organ” treatments.) The key (once again) is for the radiation to only hit the prostate. With today’s modern radiation technology and techniques, that can be accomplished.

My urologist (a surgeon) also told me that he “clearly believed he could get it out, and gave me a xx% chance of saving the nerves,” but added that he “would only know that for sure once he got in there.” That gave me pause….. (Also, remember that “saving the nerves” is medical-speak for possibly 100% of both nerves, or 100% of one and none of the other, or 75/25, or 50/50, or 25/25, or….. They really have no sure way to know until they get in there. Even touching/moving the nerves sometimes damages them.)

My radiation oncologist and I spent much time researching all possible short, medium, and long-term side-effects from radiation (see attached charts), and then spent time discussing methods to minimize or avoid each one.

You also mentioned that “If I did radiation alone, any subsequent prostatectomy that would be required in an emergency would almost certainly cause troubling side effects with continence etc.” As it turns out, that has some truth to it (if a salvage prostatectomy were the only salvage option), but it’s is old-school thinking that doesn’t consider modern treatment techniques. (And there are rarely “emergency prostatectomies.”)

If there is local recurrence after initial radiation, choice of treatment would depend on the nature of the recurrence; there are other options - focal therapy (e.g., cryo), brachytherapy, SBRT (because they’re each very targetable), and yes even re-radiation can be done in some cases. So, I wouldn’t let the old “no options if recurrence” philosophy change my initial treatment decision.

As for your doctors having “…almost never seen a PSA of 130 with no spread,” remember that ~15% of prostate cancers are PSMA-negative and won’t show up on a PSMA PET scan even when prostate cancer is known to be present. Something to consider and discuss with them…..

As you alluded earlier, removing it brings no statistically significant success over radiating it. In fact, if there has already been metastasis - which you seem to think that there has been microscopic spread already - then, that would make your treatment decision fairly straightforward.

(In my case, I was diagnosed with low-grade, localized prostate cancer at 56y/o, spent 9 years on active surveillance (having much time to thoroughly research my treatment options), then chose to have proton radiation treatment at 65y/o. That was about 5 years ago.

For me, successful treatment and quality of life were equal priorities. That understanding set the foundation for my radiation oncologist, medical oncologist, and me coming up with a sound treatment plan. And I never lost potency.)

Yes, there is certainly a lot to learn and digest, but in the end you have to make the best decision for you (because you’re the one that has to live with the decision).

Wishing you the best with your decision.

@brianjarvis

I'm considering Proton therapy. May I ask how many sessions did you do and was hormone therapy added? Both RO's from Centers of Excellence recommended a Brachey boost along with Proton (5 sessions) or IRMT (23 sessions)

I'm 6 weeks post op on Monday. I'm 55 and was diagnosed roughly 2 years ago, I wavered greatly on my next steps back then. I didn't do a thing for a long time right away, especially from what I would frame as harassment from my 1st urologist. Their objective was not to assist me in making the best decision for me. I digress. Ultimately I did end up at RARP. It was the right decision, period. The advice that I received from my 2nd urologist in addition to viewpoints from several older men that were friends of mine I feel led me to the best and correct decision. This is how I looked at it..... most of the time all roads lead back to the prostatectomy. Both have similar side effects and in my opinion radiation can be worse. My cousin went thru radiation 2 years ago and it made his urethra incredibly angry.... scarring, etc that took a long time (months) to heal with the catheter installed. With the catheter installed it seems there is a recovery just from that. Ultimately it appeared to me that the potential for re-occurence is far greater post radiation and the possibility that you may still end up having it removed and the gift of going thru all or even more side effects yet again. I have been keeping a diary of everything I have went thru, not emotionally, but all of the stuff I was not informed or prepared to experience. I will gladly share my road thus far if you are interested. One thing that shocked me just 2 days ago..... read on..... I have been experiencing mild to severe insomnia post op. Just for fun, I googled it in relationship to RARP and of course, wouldn't you know...... over ONE THIRD of prostate removal patients experience mild to severe insomnia!!!! How these 2 things are so intimately connected baffles me!!! I think you are on the correct path by having it removed. I chose the path to get me the longest quality of life possible. If you would like to know more, by all means, let me know. It is helpful reading here everyone's experiences and frustrations and knowing there is a path forward for a normal, happy life.

Best wishes to you! Unfortunately, if they found cancer cells in your seminal vesicle(s), it's not considered "prostate is confined." If the cancer cells are confined within the prostate gland, meaning that they have not broken the prostate capsule, then the doctors use the term "localize" (stage 1-2) However, if the cancer cells broke the capsule to nearby tissues, such as seminal vesicle(s), the doctors use the term "locally advance" (stage 3-4)

I know about this from my husband's PC doctor team. My husband has seminal vesicle invasion on the right side, which was found during his surgery in 2021. So, his stage was upgraded from localize (2) to locally advance(3Tb to be exact). To make sure that you understand, any scans, including PSMA scan, can miss microscopic cells that are very small. It explained a lot in my husband's case. the cancer cells in his right seminal vesicle was less than 2 mm.

I'm 6 weeks post op on Monday. I'm 55 and was diagnosed roughly 2 years ago, I wavered greatly on my next steps back then. I didn't do a thing for a long time right away, especially from what I would frame as harassment from my 1st urologist. Their objective was not to assist me in making the best decision for me. I digress. Ultimately I did end up at RARP. It was the right decision, period. The advice that I received from my 2nd urologist in addition to viewpoints from several older men that were friends of mine I feel led me to the best and correct decision. This is how I looked at it..... most of the time all roads lead back to the prostatectomy. Both have similar side effects and in my opinion radiation can be worse. My cousin went thru radiation 2 years ago and it made his urethra incredibly angry.... scarring, etc that took a long time (months) to heal with the catheter installed. With the catheter installed it seems there is a recovery just from that. Ultimately it appeared to me that the potential for re-occurence is far greater post radiation and the possibility that you may still end up having it removed and the gift of going thru all or even more side effects yet again. I have been keeping a diary of everything I have went thru, not emotionally, but all of the stuff I was not informed or prepared to experience. I will gladly share my road thus far if you are interested. One thing that shocked me just 2 days ago..... read on..... I have been experiencing mild to severe insomnia post op. Just for fun, I googled it in relationship to RARP and of course, wouldn't you know...... over ONE THIRD of prostate removal patients experience mild to severe insomnia!!!! How these 2 things are so intimately connected baffles me!!! I think you are on the correct path by having it removed. I chose the path to get me the longest quality of life possible. If you would like to know more, by all means, let me know. It is helpful reading here everyone's experiences and frustrations and knowing there is a path forward for a normal, happy life.

General update: we had our radiology consultation today. The radiologist was very knowledgeable and kind. We discussed how the technology has come along in terms of being able to target the radiation more precisely, reducing collateral damage. That said, there are no long term studies on the current techniques (since they are new), so it's difficult to say with certainty what the side effects will ultimately be, particularly long term.

The radiologist seemed certain that surgery would result in lost of potency. He also explained that my cancer seemed to be going up towards the seminal vesicle, rather than towards the rectum. This means than the rectal spacing gel could be used despite the fact that they only recently started considering usage of that for high risk cancers like mine. (The concern is that the gel ends up "pushing" cancer cells into the rectal wall, which is the opposite result of what the gel is meant to prevent.)

We remain intrigued by the possibility of more limited side effects of radiation, but it still feels like surgery is the way to go. At least the side effects are known (seems like radiation can be better but can also be worse, particularly long term). Plus I'm young. Plus having a surgeon go in there can yield more relevant information. We realize that there will likely be recurrence but the more narrowly targeted radiation for those "flares" can be far better handled than the broader radiation that would be required as a primary treatment.

The radiologist seemed clear that being on ADT gives us time to do our research and while I should have treatment by May or June, there's time to explore the alternatives. All of your comments and answers have been very helpful. Thank you.

I'm mindful of the one person in this thread whose friend had significant urinary issues after radiation - something the radiologist mentioned today as a possibility. Are there others that received radiation who have side effects (or lack thereof) to share?

General update: we had our radiology consultation today. The radiologist was very knowledgeable and kind. We discussed how the technology has come along in terms of being able to target the radiation more precisely, reducing collateral damage. That said, there are no long term studies on the current techniques (since they are new), so it's difficult to say with certainty what the side effects will ultimately be, particularly long term.

The radiologist seemed certain that surgery would result in lost of potency. He also explained that my cancer seemed to be going up towards the seminal vesicle, rather than towards the rectum. This means than the rectal spacing gel could be used despite the fact that they only recently started considering usage of that for high risk cancers like mine. (The concern is that the gel ends up "pushing" cancer cells into the rectal wall, which is the opposite result of what the gel is meant to prevent.)

We remain intrigued by the possibility of more limited side effects of radiation, but it still feels like surgery is the way to go. At least the side effects are known (seems like radiation can be better but can also be worse, particularly long term). Plus I'm young. Plus having a surgeon go in there can yield more relevant information. We realize that there will likely be recurrence but the more narrowly targeted radiation for those "flares" can be far better handled than the broader radiation that would be required as a primary treatment.

The radiologist seemed clear that being on ADT gives us time to do our research and while I should have treatment by May or June, there's time to explore the alternatives. All of your comments and answers have been very helpful. Thank you.

I'm mindful of the one person in this thread whose friend had significant urinary issues after radiation - something the radiologist mentioned today as a possibility. Are there others that received radiation who have side effects (or lack thereof) to share?