Update after tests,etc

[Dimples76]

We are at decision time. Since my first posting - all tests completed ( MRI, CT, full body bone, PSMA Pet- they have came back that it hadn’t spread). GL 7 Grade 3 Husband young 58 and active. QofL is high on list. We were all set to go with radiation and went to discuss treatment options and Dr recommended due to husbands enlarged prostate 180cc, to do simple prostectomy first and then radiation. He said the large prostate has to be addressed before any radiation could be done. He wouldn’t even recommend RP due to the size

That puts us back with surgery which we didn’t want. After that we started again and started reading about Tulsa Pro. We thought it could address enlarged prostate and the cancer simultaneously.

Unfortunately that has basically been discouraged due to size of prostate. Still recommending RASP and then afterwards radiation or maybe Tulsa Pro but that would be outside the box

Any thoughts?

[Andy1569]

You need to get a second opinion. I think that Urologists are not the appropriate Dr to make

a good decision regarding Radiation vs Surgery

Fight On!

Andy

[Dimples76 in reply to Andy1569]

Thanks Andy 1569. We still need to get a 2nd opinion sending in his pathology records. Can someone send that info again of how to send to John Hopkins

Actually we saw MO first and recommendation from medical oncologist was surgery or radiation. Then went to radiology oncologist to talk about radiation and he recommended due to enlarged prostate, we should do RASP first, then radiation. Went to talk with the urologist who would do it and of course he agreed with the radiology oncologist but said we could do an MRI after that he RASP and determine what would be best way to go - radiation or possibly Tulsa pro. Keep in mind, Tulsa was brought up by us really.

[Tall_Allen]

That is a whopper! Reducing its size first will improve the results of any potentially curative option. There are two ways to reduce its size - simple prostatectomy or hormone therapy.

Can you provide more info on the biopsy results? Where are you located?

Good idea to get a second opinion on the biopsy from Epstein's lab at Johns Hopkins:

pathology.jhu.edu/patient-c...

TULSA-PRO doesn't work:

prostatecancer.news/2021/03...

[Dimples76 in reply to Tall_Allen]

We are in Texas. Do you have any recommendations for surgeons in this area who have a great amount of experience doing this specific procedure ? What questions would you go in asking?

[Tall_Allen in reply to Dimples76]

Brian Chapin is a surgeon at MD Anderson, but I think there are mmany surgeons throughout Texas who can do the procedure. I can recommend Neil Desai at UTSW for radiation.

[SilverSeppi]

Does not sound right to me; I also have an enlarged prostate but due to that my doctors decided not to do brachy but go with ADT and standard radiation; have been on Orgovyx for a few weeks set to get Barrigel and markers next week. But none of the centers I spoke with (Memorial Sloan Kettering, Robert Wood Johnson, and Hunterdon Cancer Center) ever mentioned that my large-ish prostate would be an issue with radiation. I'd get more opinions if I were you...just my opinion.

[maley2711 in reply to SilverSeppi]

180 cc is EXTREME BPH, and I'm not surprised that RO would want that reduced 1st. I did not know that there are size limts even for RP....thank you. I thought mine was extreme at 80-90 cc !! Neither surgeon nor RO mentioned any big concern, though ADT would be part of RT for me.

[Dimples76 in reply to SilverSeppi]

What is the size of your prostate?

[SilverSeppi in reply to Dimples76]

I think 77

[allie2020]

My prostate was 155 cc and I met with RO's, MO's and five Urologists before deciding on robotic RP. This was five years ago and I was 3+4. The RO's wanted me on Lupron for six months to try to shrink my prostate prior to IMRT. I had dealt with troublesome urinary symptoms for many years and I felt surgery would kill two birds with one stone. I met with four Urologists who performed thousands of RP's and none expressed concern with the size of my prostate. I never considered a simple RP nor did I seriously consider a focal treatment. I chose a very experienced and skilled surgeon and am very happy with my decision.

[Dimples76 in reply to allie2020]

Thank you.

[jfoesq]

IFFFF you decide on surgery, make sure the surgeon is VERY experienced!!! I had mine removed 11 years ago but a well respected "old time" surgeon who did NOT do a minimally invasive surgery (although 2 of my brothers had it done that way). Fortunately, all 3 of us had minimal long term side-effects from the surgery. I believe minimally invasive surgery is the way to have it done these days, but you should make sure of this, IF you have surgery.

[Dimples76 in reply to jfoesq]

Unfortunately his extremely large prostate has limited the options for him.

Trying to compare apples to apples.

[j-o-h-n]

I wonder if the old fashioned open surgery would suffice...........I had the old one cause they repaired two hernias at the same time.......... To me it wasn't a biggie plus I like hospital jello.....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 09/15/2023 4:06 PM DST