R U just diagnosed and overwhelmed? Some info for you

NYguy99

Diagnosed about 5 months ago and I couldn't believe that I had to make the final decision about what option (surgery / radiation ) to choose. So I am going to list some info hopefully to make it easier to understand what questions you have to ask. My journey. High PSA 8.5, up from 4.0. Urologist orders MRI. MRI comes back Pirad 5. Urologist orders biopsy. Biopsy comes back 2/14 samples cancer one 3+4, one 4+3. Polaris test molecular score 3.5. No perineural invasion. Unfavorable intermediate risk. cT2nomo

Urologist #1 - excellent candidate robotic nerve sparing surgery. His selling point - removing prostate eliminates chance for reoccurrence from prostate left after radiation. Also keeps radiation possible if cancer does reoccur in prostate bed or nodes/bones.

Radiation oncologist #1 - old school, 45 treatments. Says from digital rectum exam, nerve sparing surgery would leave behind cancer and I would need radiation within 2 years. He also said higher doses / less treatments of radiation were not safe (which is contrary to everything I have read)

Radiation oncologist #2 - treated like a number. Just reread my reports to me. Said we can get you started on 25 treatments and ADT right away. I said I didn't want ADT, Polaris report recommends single modal treatment. Dr. says no, standard of care is add ADT. Also wanted to run Decipher report. I asked why if they were ignoring what Polaris report recommended ($$$ ???). I just got up and left. DO NOT BE AFRAID TO WALK OUT IF YOU ARE NOT BEING RESPECTED AND LISTENED TO.

Aetna online expert #1 second opinion available. Requested help deciding. Aetna doctor just cut and pasted internet stuff that I had already read, and then told me to consult with my doctors. Waste of time.

Urologists #2 (also does HIFU). I asked about HIFU, he said not recommended for first line treatment. Told me I should have PSMA scan done before making decision. Made appointment for PSMA *** PSMA was clear, no metastasis to nodes or bone ***

Aetna online expert #2. I requested second opinion / reading of MRI. This time they actually had a respected expert radiologist review the MRI. She noted extended contact length and slight bulging (neither was mentioned in first MRI report) and that might make achieving a negative margin (first time I heard that expression) difficult to achieve with nerve sparing surgery. Neither urologist had mentioned this possibility.

Radiation oncologist #3 (MSK expert). Slides reread, agreed on 3+4 and 4+3. MRI reviewed. Extended contact length and slight bulge, but no extracapsular extension. Higher doses safe, spacer gel helps spare rectum. Suggested 5 treatment with 4 months ADT (because of the 4+3). Would reduce the reoccurrence rate by 10%. I explained I was worried about side effects of ADT. He said he would order Orgovyx, a pill instead of the shot. Compromise being if the side effects were bad for me, I could just stop taking the pills and my hormone levels would come back quickly (unlike the shot which obviously has to run its course). Finally felt that a doctor listened to me and trusted his recommendation. I start the 5 treatments in 2 weeks;

So my suggestion: Read as much as possible before seeing your doctors. But remember, great strides have been made in targeting radiation treatments in the last 10 years. This makes relative 10 year studies almost obsolete. CHECK the dates of any studies you read. Request PSMA scan before deciding. First 3 people said I didn't need it due to relatively low PSA score. No reason not to verify no spread before making treatment decision. PUSH FOR THIS SCAN. It eased my mind greatly. Have Polaris or Decipher test done. Get a second opinion of biopsy slides to verify Gleason score. Have second opinion on MRI, verify no extracapsular extension. Talk to both a surgeon and radiation oncologist. Question for urologist - with the location and contact length of the tumor, is nerve sparing surgery possible or will you have to damage the nerve bundle to get all of the cancer. This will effect the odds you experience ED after surgery. Ask how many surgeries he has performed (don't worry about offending him). His experience level with determine your erectile function and bladder control after treatment. Radiation treatments will depend on the area of country you live in. From everything I have read, higher doses are more actually more effective. Make sure no cribiform noted on MRI. From what I have read, makes radiation treatment less effective. Be willing to travel to get more updated procedures. If ADT is recommended, think about requesting the pill instead of a shot. Discuss pros and cons of both with your doctor.

Hopefully my experience will help at least one person.

Clevelandguy

Hi,

So what did you decide? Sounds like you have educated yourself( great info). I have to agree with you, Oncologist #2 would not be my first choice. Urologist #1 and Oncologist #3 seem spot on. Experienced doctors +excellent facilities = best results.

Dave 3+4