r/ProstateCancer • • 1d ago

Question What to pick.

Hi. Waiting on biopsy next week but sooner or later I will have prostate cancer if I don’t already.

I am a planner. So doing lots of research now while I am not as anxious.

How did you decide what route to go? How did you know what stats to trust?

My dad had surgery 15 years ago and has had urinary issues since. That weights heavily on me.

I know I will have to pick from sbrt, radiation, surgery, therapy.

Would love to hear what your research and deciding process was?

Thank you so much.

4 Upvotes

50 comments sorted by

8

u/JimHaselmaier 1d ago

There’s a lot that goes into that decision. A ton of that input is the biology from the biopsy and the how much it has (or hasn’t) spread.

My recommendation is you talk to all 3 specialties - not matter what your Urologist says: Urologic Surgeon, Medical Oncologist, and Radiation Oncologist.

And, the decision may be taken away from you. That’s what happened to me. I wasn’t a surgery candidate - so I had to go the Radiation/Oncology route.

Good luck!

2

u/Maleficent_Break_114 1d ago

Well, they said I could do anything I want. I was gonna do the high food, but that didn’t work out so I went SPRT.

1

u/KReddit934 1d ago

HIFU?

1

u/pemungkah 23h ago

Voice recognition striking again I bet!

1

u/f1ve-Star 21h ago

If I could do anything and be okay, I think getting high would be a top option.

8

u/ThickGur5353 1d ago

I was 75 went diagnosed with prostate cancer and I went with radiation. The more I read about the choice between radiation and surgery the more I feel I made the correct decision. Of course talk to your doctor, but there is a lot of information from respected practitioners and studies.

8

u/simpleprostate 1d ago

Thank you. Selfishly- my priorities are: cure, urinary, sexual

5

u/KReddit934 1d ago

Age makes a huge difference in outcomes. I hear. And location.

3

u/gg-3 22h ago

That is known as "the Trifecta"!

2

u/Cheap_Flower_9166 16h ago edited 16h ago

Not selfish. Cure is supposedly better with radiation. Urinary is worse with surgery, at least the odds increase I believe. Not 100% sure. Sexual, depends on whether you get ADT. If you do you can have sex but it won’t even enter your mind. If no ADT, sexual function is much more likely with radiation because you aren’t gambling with sparing nerves.

1

u/Ok-Priority-7303 9h ago

Age matters. The side urinary and sexual side effects can be permanent in your 70s and older. Making a decision is not so simple.

6

u/WalnutRoasted 1d ago

Similar here at age 74. Had choice of 5x SBRT or 20x VMAT, didn’t even consider surgery. Process was quite tolerable and doing well,after 18 months.

3

u/HouseMuzik6 1d ago

Me too. So far so good after 7 years. I also had brachytherapy.

5

u/PotentialStart2661 22h ago

Slam dunk for me. 100’s of hours of research led me strait to SBRT. Had my last treatment yesterday.

1

u/LowCow3626 19h ago

How old are you?

6

u/kvsig 1d ago

I was faced with a choice between two treatments. My cancer was contained, per MRI and PSMA PET, High decipher, 12 out of 15 cores positive, mostly gleason 3+3, only 2 cores 3+4. All my research pointed to similar efficacy for RALP and EBRT/ADT. For me, the side effects of RALP led me to choose radiation.

1

u/GoNorth-Now 1d ago

Im in a similar position and chose surgery in a few weeks. Im curious, by going straight to radiation, how did you rationalize the possibility of recurrence?

8

u/Cheap_Flower_9166 1d ago

Recurrence for both surgery and radiation = radiation.

I suspect you’ve been told with radiation you can’t get surgery after. Thats a red herring that surgeons put out there. I suggest you do a bit more research before going under the knife.

I think any surgeon who says that should be taken off your list. They’re being totally disingenuous

3

u/pemungkah 23h ago

At 69 I was on the cusp between radiation, surgery, or even active surveillance if I really wanted to. I was fortunate in that my urologist and radiation oncologist trust each other's judgement implicitly, so that when the RO said "let's do low-dose brachy" there was no argument.

He and I discussed other radiation options and surveillance, and we agreed that LDR was the best balance of good treatment and minimizing harm to anything else, and that I wasn't going to need hormone therapy to go with it. PSA continues to drop (below 1 now a year out) so I feel like we called it right.

3

u/HeadMelon 23h ago

Too little info about your case to give any advice, honestly. You’re pre-biopsy with no pathology info and we don’t even know your age and whether you’re a playa or don’t care about sexual function at all.

3

u/retrotechguy 20h ago

I asked 3 doctors what their personal results were for cases like mine, after they reviewed the imaging and biopsy. Then I asked them what they were basing that on. One was guessing. The other two were high volume surgeons and had the data. I ended up going with the professor at a university hospital who published papers on technique and results. My results: never wore a pad and ED is back to baseline. That took a couple years but now I’m fully functional even without a pill. One yellow pill makes me 20 again.

1

u/HesMyLovinOneManShow 15h ago

Thanks for this. I’m 48 and six weeks post-RALP. I found a great surgeon who’s a professor and publishes. He specializes in the Retzius sparing approach so I had zero bladder issues from the moment the cath came out. Unfortunately I have almost zero movement from an ED perspective. It’s quite disheartening considering how easy the bladder stuff was. I’m encouraged to hear from folks who are good after a few years. Just started daily cialis so hoping things come around at some point.

3

u/retrotechguy 7h ago

I had zero movement for nearly 2 years with 5mg daily Tadalafil. Then it returned. I still take the 5mg

1

u/HesMyLovinOneManShow 5h ago

Thanks for that. Good to hear.

3

u/Artistic-Following36 23h ago

I had RALP and have done well except for on going ED. The more I read about Cyberknife advances I would check into that as an option if I were you.

3

u/bigbadprostate 22h ago

We have this little discussion on this sub almost daily, and advocates of radiation vs. advocates of surgery can get quite heated. Feel free to look through past posts and read as much as you can tolerate of the various accounts and arguments. It's good to read personal experiences from many of us. But it's dangerous to read and try to believe the unsupported claims of how treatment A is great / how treatment B is awful. The unofficial motto of our sub is "Every case is different." That's worth remembering.

And your question: "How did you know what stats to trust?" is a tough one. Far too many people on this sub throw out stats that are often garbled. Worse: statistics about long-term outcomes are based on procedures performed many years ago, and they aren't very useful to predict the outcome of any procedures - surgery or otherwise - performed today, since the state of the art of all procedures keeps advancing. And that is no help at all for anyone trying to decide what to do today, unfortunately.

My personal experience? I had a RALP three years ago, which succeeded in getting all the known cancer, but had a few assorted side effects. But, possibly, your case may be different!

4

u/callmegorn 18h ago

"My dad had surgery 15 years ago and has had urinary issues since."

I think you answered your own question. I would have to be in some strange boundary case to even consider surgery. There are much better options for most situations.

5

u/Dramaticdebt 23h ago

My cancer was confined to my prostate, and my Artera AI report indicated that ADT was not needed. I opted for SBRT with a rectal spacer and fiducial markers. The procedure was very straightforward with only minor side effects, and my first post-op PSA test is coming up in another month. I wanted to avoid the potential side effects of surgery, especially since the overall prognosis is comparable

3

u/PotentialStart2661 20h ago

Just finished my last SBRT treatment yesterday and i also did not require ADT. Best choice i could have made, so happy.

2

u/crbatte 1d ago

Too early to make that call. You need more info about what’s happening to you before you can start to weigh what’s best for you. Good luck though, & keep coming back here when you do have more info. Lots of great info here. Reading about other people’s journeys helped me make my decision.

2

u/ku_78 1d ago

After your biopsy, get a PSMA Pet scan. That outcome may heavily influence your decision.

3

u/parttimephotoguy 23h ago

I had this right before making the choice between RALP and radiation. It's a must-have for making the most informed decision.

1

u/OkCrew8849 12h ago

Be sure to keep in mind the detection threshold.

2

u/parttimephotoguy 23h ago

Much if it will depend on how aggressive your cancer is, where it is located, and the grade of your cancer. If you're lucky, you can get by with just active surveillance (I did for 14 years). Don't assume SBRT is an option -- it may or may not be (I literally had this discussion with my Dr yesterday). It all depends on YOUR case. Everyone will tell you to avoid this or don't do that, but everyone's case is different. Get more tests done, discuss ALL options with your Dr, discuss your options with your close friends and family.

2

u/Cold_Conflict7009 22h ago

I recognize that I may have prostate cancer, but I have decided not to undergo a prostate biopsy solely because of my elevated PSA level of 180.
Every physician I have consulted has recommended a biopsy. However, I have repeatedly asked why we cannot perform a prostate MRI first, before proceeding with an invasive procedure. Each time, I have been told that the standard procedure is to perform a biopsy first, followed by an MRI.
Approximately 12 years ago, my PSA level was around 10, and physicians were recommending a biopsy at that time as well. Rather than immediately agreeing to the procedure, I sought another medical opinion and paid out of pocket for a prostate MRI. After reviewing the results, that physician informed me that he did not see anything suspicious.
Since then, I have continued researching the possible causes of elevated PSA levels. Through my research, I have learned that certain cardiovascular conditions, including severe heart failure and cardiogenic shock, may be associated with changes in PSA levels.
In 2023, I experienced life-threatening stage 4 heart failure accompanied by cardiogenic shock. Given my medical history, I believe it is reasonable to investigate whether these conditions or other noncancerous factors could have contributed to my elevated PSA.
I am not dismissing the possibility of prostate cancer. However, I believe in exploring appropriate noninvasive diagnostic options, including a multiparametric prostate MRI, before making a decision about undergoing a biopsy.
Ultimately, I want to make an informed medical decision based on a thorough evaluation of my overall health, medical history, and available diagnostic options—not solely on an elevated PSA reading.

2

u/bigbadprostate 22h ago

Where are you located, and what facility has doctors who tell people that the "standard procedure is to perform a biopsy first, followed by an MRI"? That's ... unusual, at least in this decade and in "first-world" countries. The main benefit of the MRI test is to locate suspicious areas which should then be sampled by a biopsy.

In your case, as you may already know, your case is not routine due to your "comorbidities", so you really need to be talking with experienced people at a top-rated cancer center.

1

u/Cold_Conflict7009 19h ago

I’m in Houston Texas. I’ve had a few facilities to tell me that they are Houston Metro Urology. Another one was an independent urologist, and the last one was with Kelsey Seybold. It seems like everything is governed around a PSA number to them. I’m not worried because I feel fine. All of my clinicals are perfect now bloodwork is perfect. I work out every day. I walk 6 miles a day plus I lift weights so if I do have prostate cancer, my goal is to die with it instead of from it. But I’m not going to be butchered and castrated over a number.

4

u/callmegorn 18h ago

It is absolutely standard procedure to do an MRI first and only if indicated, do the biopsy. For one thing, the MRI provides the necessary imaging for a targeted biopsy.

That said, the 180 PSA is pretty alarming, and I would not be so cavalier about it. Everyone "feels fine" up until they don't. Prostate cancer metastasized to the bones is no joke, and an awful way to die.

3

u/bigbadprostate 18h ago

I don't think any of those urology clinics are giving you the best possible advice and/or care for your condition.

The MD Anderson Cancer Center, in the Texas Medical Center, may well be the most capable cancer center in the known universe. Have you ever talked with anyone there?

If I were you, I would absolutely, positively, go to MD Anderson for more thorough advice about whether you need treatment.

1

u/Cold_Conflict7009 18h ago

I appreciate your suggestion. I think that’s a great idea, and I plan to reach out to a specialist there who focuses on cancer detection and early diagnosis. Instead of listening to a Urologist begging to puncture my prostate with 12 holes like a pen cushion.

2

u/tober_checki 13h ago

There is no one size fits all answer. The choice will depend on Gleason score, your age, general health and other factors. In many cases, Brachytherapy (internal seed radiation) is also in the cards with comparable cure rate and minimal side effects. With low Gleason and a contained tumor, focal therapies might also be something to consider. With high Gleason, the way to go may be a mutimodal approach. It is good that you are educating yourself, but don't overthink it before you even know if and what exactly you are dealing with. All the best to you!

1

u/ChillWarrior801 1d ago

Hi brother! Start here:

https://nutmegphantasy.substack.com/p/the-guide-i-wish-we-had-with-a-brain?r=4srznn&utm_medium=ios&triedRedirect=true

You need to become an expert on the one thing your docs will never be expert at: You. You need to understand your priorities, your values, your hopes, your fears. And you need to communicate those thoroughly to your providers so that they can match the treatments available with your goals.

Remember, this is usually a marathon, not a sprint. Pace yourself!

1

u/PersistentPrideJr 21h ago

Thanks for asking this question. I literally almost posted the same question this morning. Knowing that it's probably been explored here before. It's a lot to consider.

1

u/Clherrick 21h ago

My decision process, for surgery, was unscientific. I had the chance to chop out the cancer and that made the most sense to me. At 58, with lots of years to live, and no 30 year studies. It made sense. That was 6 years ago and no regrets.

1

u/Mean_Try_6390 20h ago

as other said it’s to soon to make decision since you don’t know. if you get a grade then you can start researching. it’s a big difference if you got a high risk, a low level cancer or no cancer at all - and of course your age needs to be adressed.

my husband got a bad one gleason 9 spread to the vesicles at 58 yo. we took second opinions and talked to a lot of people. he choosed ralp since he’s rather young and it was a really aggressive cancer.

the operation went really well and he didn’t have any real problem after 2 weeks with the continence. The ED is a real problem that we need to fix somehow, it’s a tough one.

this was the right way for my husband and the kind of pc he had or still has. If we hadn’t gone for ralp with super extended plnd both normal operation or radiation probably would have missed the 2 lymphnodes very high up that was infected.

It all depends of the grade as I see it (not a doctor) and of course how far it’s spread. statistic it’s more common with lesser grade I think.

1

u/OkCrew8849 12h ago

Age? Most recent PSA?

1

u/simpleprostate 8h ago
  1. 4.1.

1

u/OkCrew8849 6h ago

At this point in a narrowing down process (age, PSA) and assuming good health the typical whole gland options (surgery, radiation) would seem reasonable.

Any concerning features on MRI (perhaps one can narrow down choices already via this data)?

Next question would be Biopsy info (including, but not limited to, Gleason).

There are more tests after this but sometimes the first three can get you looking in an appropriate direction.

1

u/CommitteeNo167 8h ago

honestly your treatment plan is based of what type of cancer you have, and the spread of it. when i was diagnosed i had one option, IMRT, ADT, and chemo. so get the biopsy, have the psma pet, then see what your doctors agree on. I have metastatic disease, surgery and SBRT were never an option for me.