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

Wheel

Excellent points on consulting with multiple Urologists and Radiation Oncologist’s. I met with two Radiation Oncologist’s and two Surgical Oncologist’s before I was very comfortable with one. I also had PSMA PET, biopsy slides reviewed by John Hopkins, and Decipher.

Good luck on your quick 5 treatments,

NYguy99

https://csn.cancer.org/discussion/comment/1719095#Comment_1719095

I went with oncologist #3m MSK (Memorial Sloan Kettering). MSK precise is their 5 dose treatment with spacer gel. Pain in the butt going into Manhattan for marker/gel and for planning session. Going to stay with a friend in NJ for 2 weeks and get the actual radiation treatments at their location in Monmouth NJ.

NYguy99

If you dont mind me asking, what was your Gleason score and what treatment did you decide on? For me, the fear of going thru the surgery and not achieving a negative margin was the deciding factor.

Wheel

My Gleason was 8, which was the highest of five cores containing cancer. The remaining were Gleason 6 and favorable 7, but your overall score is the highest one, even if just one core. I chose Surgery last August. Obviously each person weighs the pros and cons to there circumstances. For me, it was important that the Surgeon felt incontinence would not be an issue afterwards due to his technique and ED would likely be minimized due to nerve sparing. He was also going to send tissue immediately to Pathology while I was on the table to attempt to ensure negative margins which I ended up with. I will admit I considered the 5 quicky sessions with the spacer gel too.

Wheel

I should add that after my surgery my Gleason was downgraded to Gleason 7 (4+3). I was not offered a pill if I went with Radiation but HT for 18 months which swayed me away.

mbluth

I had a similar experience. I ended up with a lot of different opinions. In the end I went with what I thought was best for me. I had the RARP at Houston Methodist after consulting with oncologist from MD Anderson and radiation oncologist from MD Anderson and another clinic. The extra capsular extension they saw in the MRI did not exist Based on the after surgery pathology report. I am 3 and a half weeks post surgery. I am happy with my decision.

Steve1961

well I had radiation done and I regret it for one It took my PSA almost 4 years to drop down to the lowest level only to have it start creeping up and for two. I went to a major university and every day I saw people very sick dying. It was a terrible head game with me, if I could go back personally, I wouldn’t worry about negative margins or any of that stuff I would just remove it. I fortunately had a second chance it was still containted prostrate and I know it’s a harder surgery after radiation, but I did not hesitate that I’m glad I did surgery went as well as expected and i am cancer free .

LuckyKYGuy

https://csn.cancer.org/discussion/comment/1719107#Comment_1719107

we are at about the same stage I am five weeks tomorrow (11/26/24). How are you with the incontinence and so forth?

mbluth

https://csn.cancer.org/discussion/comment/1719141#Comment_1719141

I had mostly control from when the catheter was removed. I have a little bit of stress incontinence but just drips. I do have strong urges, where I have to go. I wear diaper at night mostly dry couple of bad nights.

How are you doing?

NYguy99

https://csn.cancer.org/discussion/comment/1719135#Comment_1719135

Sorry to hear that RT went badly for you. As I have said, it is amazing that in this day and age it is up to the patient to actually decide what is best, instead of the experts. I wonder if you had cribriform prostate cancer. I have read RT is not effective with that. Glad to hear it worked out well in the long run. Best of luck to us all.

LuckyKYGuy

https://csn.cancer.org/discussion/comment/1719200#Comment_1719200

I am now six weeks post RARP and five weeks post catheter removal. I too am mostly dry at nights and have been since the catheter was removed. I continue to do the therapy as instructed by the Pelvic Floor Specialist and have a follow up with her tomorrow. I can see very small improvement but it is very small. However from all I've read any improvement is to be celebrated and is motivation to continue working towards better control. I still will have some leakage when I stand up and when I'm walking it is pretty constant.