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New Diagnosis-March 28, 2023

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Posted 5/17/2023 6:59 PM (GMT 0)
I am new to the forum as it was recommended by a friend. I have been reviewing some of the topics and decided to share.

I am 62 and pretty healthy other than a lot of joint arthritis.

First, PSA over 4.0 was at an annual physical in October 2022 at 6.5. Referred to Urologist where they re-tested and was at 5.9. Diagnosed with BPH enlarged prostate. Had been having some issues prior to October 2022 with urination etc...

Place on medication but felt it wasn't effective. Went back to Urologist and re-tested again and was at 7.9. Referred in December 2022 for an MRI which was done on March 1, 2023 due to shoulder replacement surgery.

MRI came back with a PIRAD level 4 of 5, DWI 4 of 5 and T2 of 4 in peripheral zone. No signs of spread.

Referred for a biopsy that was completed 03/23/2023.

Results came back positive for cancer in three of seven specimens. Seems like this is moving faster than I thought.

First two are 3+4 with 30% and 60% gleason pattern 4.

Third sample is 4+3 with 80% gleason pattern 4.

Referred to have a whole-body bone scan which showed no evidence of spread.

Doctor recommended surgery but I opted to get a second opinion at Johns Hopkins. Met with the Hopkins Urologist and Hopkins reviewed the MRI, Blood work, Biopsy and Bone scan. All came back with similar results including the biopsy. The Hopkins review did note perineural invasion on left side of prostate whereas the first biopsy did not.

Hopkins doctor recommended surgery as well due to my age, health and BPH. I am leaning towards surgery currently.

Concerned about the side effects with surgery but was told I cannot wait for months.

If surgery is to be the choice then will schedule it at Johns Hopkins.

Just wanted share to see if anyone has similar experiences. Seems like many here have opted for some type of radiation. Any specific surgery experiences at Johns Hopkins?
Posted 5/17/2023 7:38 PM (GMT 0)
Tim,
If there is a prime directive around here, it would be to also schedule consults with doctors who treat using the several types of radiation treatments available.

Remember also, urologist/surgeons are the first point of contact for most PCa patients. As such, the Uro surgeon tends to recommend the treatment he offers.

Sorry you have to be here. Good luck with whatever treatment you choose!
Posted 5/17/2023 7:40 PM (GMT 0)
Tim, I did have robotic surgery and my Gleason score was upgraded to 8 after the surgery. That was in 2009, and I am still here and have been on Lupron for 10 years, along with Zytiga and Xtandi along the way. Good to hear that you got a second opinion. Whatever treatment that you chose, do not look back. Only look forward. Hopefully some of the other members will be online this early evening to offer some perspectives. Welcome to HW.
Michael
Posted 5/17/2023 9:05 PM (GMT 0)
Hi Tim,

With regard to:

"First two are 3+4 with 30% and 60% gleason pattern 4.
Third sample is 4+3 with 80% gleason pattern 4.
Referred to have a whole-body bone scan which showed no evidence of spread."

I don't see how a core can be Gleason 7 (3+4) yet be 60% Grade 4; such a core would necessarily be 7 (4+3), since the first-listed pattern is the one that makes up >50% of the cancer seen. Note that percentages can be used for two different parameters in a biopsy: (a) the percentage of tissue in each core that is cancerous (which speaks to one's tumor burden or the amount of cancer estimated to be present in the prostate, or (b) the percentage of one of the two grades (or patterns) comprising a core's Gleason score--usually Grade 4 is reported. I would double-check your report.

Keep in mind that a bone scan is limited to spread in bone and does not address soft tissue such as organs and lymph nodes. Also, bone scans can only detect lesions of a certain size; microlesions in bone can remain undetected. Finally, perineural invasion seen at the time of biopsy increases the statistical risk of there being local spread, such as extraprostatic extension and positive surgical margins. Such negative findings, if found, would, in turn, increase the likelihood that RT may be required after surgery to complete your primary treatment. (The advisability of adjuvant RT after surgery depends on factors like the number and extent of any negative findings, the final Gleason score, the post-op PSA trend, and, possibly, the metastatic risk of your particular cancer as determined by a genomic test.) Even if adjuvant therapy is not needed, negative findings discovered at surgery increase the chances that salvage RT will be needed in the future.

Further imaging, such as CTs, will probably be advised if you consider surgery.

All the best,

Djin
Posted 5/18/2023 12:49 AM (GMT 0)

Tim said...
Just wanted share to see if anyone has similar experiences. Seems like many here have opted for some type of radiation.

There are plenty of surgery survivors here. Treatment is pretty even between surgery and radiation nowadays and some have had both like me.

The key is evaluating all your treatment options fairly and then making the decision that your gut tells you. For example, did you meet with radiation oncology at John’s Hopkins? The best way to not have regrets is to meet with multiple doctors of different specialties and see where it goes then make your decision. No need to rush things until you are comfortable with everything.

Surgery may be right for you, so may one of the radiation methods. Feel free to ask specific questions and the surgery guys will chime in. If you don’t ask about radiation, you will get advice anyways.
Posted 6/14/2023 11:39 PM (GMT 0)
Posting an update: I will be having surgery this Friday at John’s Hopkins. Any advice leading up to surgery?

Hopefully, the prostate removal will end this journey but pathology results will be complete about a week later. The left edge has Perineural invasion so we will see.
Posted 6/15/2023 12:08 AM (GMT 0)
Tim,
Wishing you the best possible outcome with your surgery. You are going to a top notch facility. I continued to exercise and ate healthy food prior to surgery. I probably should go back to my running journal of 2009 to see if I made any other changes before surgery. Keep us posted as possible.
Michael
Posted 6/15/2023 12:35 AM (GMT 0)
Thanks. I have been walking a lot the last two months and trying to eat healthier. Can’t run anymore with all the arthritis. Will update next week.
Posted 6/15/2023 1:35 AM (GMT 0)
You are in surgery prep mode now. Follow the instructions, have a recliner available on the main level which you should know from shoulder surgery, have stool softener, Miralax, ibuprofen, acetaminophen, alcohol wipes, ointments handy, and so on. Get off pain pills as soon as you can.

Get prepared for some uncomfortable days and walk as much as possible around the house once you are able carrying your new bag friend. All my discomfort was internal, nothing from the incisions.

The week before surgery was very peaceful for me. No more tests, no more decisions, no more digital exams, just relax and head to the hospital at the prescribed time. You will be put to sleep and will wake up wondering what the heck happened which will become more clear when you get home.

Good luck
Posted 6/15/2023 2:13 AM (GMT 0)
You will get tons of great advice here. Everyone helped me so much with my husband that is a non talker.
He took his stool softner every day and I also gave him a cap of miralax with his juice in morning. It worked well to keep him moving.
I had a sheet on the fridge with all his medications, dose and time he took.
He never used the leg bag with the catheter. He used large bag and carried it around in a bucket. It worked wonderful and never an issue.
Walk as much as you can around house.
You will wake up and have a peace that you are on the road to recovery.
I will have you in my prayers, that is how I can help.
Posted 6/16/2023 2:54 AM (GMT 0)
Tim, good luck man.
My surgeon instructed me to walk 4 miles a day in the weeks leading up to the surgery, then after the surgery walk as much as possible, as soon as possible and work your way up to 3 miles a day. So the fact that you’ve been walking is great.

Post surgery…ducolax is your friend, get a recliner if you don’t have one, make sure it’s in front of your Tv, have some books handy, walk every day, drink tons of water. Get a bucket to keep the catheter bag in.

First couple of days can be tough, but you will be amazed at how quickly you recover. By therefore I was walking on the treadmill with my catheter leg bag.
Posted 6/16/2023 7:01 PM (GMT 0)
Hoping your surgery came out well…. (No pun intended…). Move around as much as you can, when you feel up to it, but remember the body heals from the inside out. Give your innards time to get used to the new paradigm. I found slowly ramping up my walking distance really helped me feel better. Get that blood pumping. Best wishes for a speedy recovery and negative margins.
Posted 6/26/2023 7:51 PM (GMT 0)
Update: ten days after surgery and just got catheter out. Surgery was successful at this point. In hospital for a day and a half then home with the catheter. They had to re-do the catheter in the hospital as the first one failed. Not a great experience.

Was able to do a lot of walking around the house. Bucket was a tremendous help along with ducolax.

Pathology results will hopefully be returned this week.

Phase II: Dealing with the incontinence. Able to control somewhat but not completely. Immediately returning to kegel exercises. Otherwise, feel pretty good. Still recovering from the internal disruption. I guess that will take time.

Any advice during this phase?

Thanks
Posted 6/26/2023 9:32 PM (GMT 0)
Congrats on reaching the other side of surgery, Tim! FWIW, I think my incontinence recovery was fairly average. I saw daily improvements for a couple of weeks, then weekly improvement for a few weeks, then monthly improvement. From Depends briefs to max then medium then light pads. Practically completely dry at about 6 months. Every guy is different and your recovery may be slower or faster, but be patient! Your brain and body are in "retraining mode" regarding bladder control.

If you post your complete post-op path report, we'll help you interpret it, if you like. When does your doc want you to have your first post-op PSA?

All the best,

Djin
Posted 6/26/2023 10:00 PM (GMT 0)
Thanks. Just impatient I guess.

Follow up is August 2, 2023 which is about six weeks from surgery.
Posted 6/26/2023 10:52 PM (GMT 0)
Tim, welcome to the other side. As Djin said, progress won't be linear on the Continence front. I recall that I weighed my pads for a while, and recorded them in a notebook, so that I could track progress. Seems like you've got some control already and that's a good sign.
Best of luck
Posted 6/27/2023 11:22 PM (GMT 0)
Update: Pathology report from surgery. Have not talked to the Doctor yet as I just received the report.

1. Fat pad, Anterior (excision)-benign fibrodipose tissue.
2. Lymph Nodes, Pelvic, Left (dissection)-three lymph nodes and associated tissue negative for tumor.
3. Lymph nodes, pelvic, right (dissection)-two lymph nodes and associated tissue negative for tumor.
4. Prostate and seminal vesicles:
Dominant nodule
Gleason score 4+3, pattern 4 80-90 %
Grade group 3.
Tumor size: 20mm
location: left, posterolateral, posterior, Apex, mid.
Secondary nodule
Gleason score 3+3. Didn’t realize there was another nodule.
location: right, posterolateral, apex, mid.

Extraprostatic extension: Present, non-focal.
location: left, posterior, mid.

Seminal vesicles invasion: not identified.
Lymphomovascular invasion: not identified.
Intraductal Carcinoma: Present, with ductal features.

Margins

Positive
location: Left, Posterior, mid.
Positive in an area of extraprostatic extension.

Length: <1mm

Gleason score at margin: 4+4=8.

Primary tumor: pT3a
Pn category: pN0
Posted 6/28/2023 2:14 AM (GMT 0)
Tim - Sounds similar to my story and pathology except you were at Johns Hopkins whereas I got a pathology second opinion from them. The only thing missing is a Decipher genomic analysis of a cancer sample from the pathology and your three month PSA.

Basically, you have a fairly high risk situation (4+3, 80-90% pattern 4) with EPE (non focal) and small positive margin at Gleason 8. Not sure if the intraductal part is significant or not. The good news is no lymph node or seminal vesicles involvement noted.

I decided to go with adjuvant radiation (ART) after I had all the information. I met with my Uro and RO who said it was my decision so after considerable study and soul searching pushed on with treatment. The only “good part” was no ADT with ART and undetectable PSA based on a number of studies.

I found the Cleveland Clinic post-op calculator helpful to reduce studies to some numbers I could work with. Maybe it will help you.
https://riskcalc.org/prostatecancerpredictingpostradicalprostatectomy/

Time to heal up now. Start getting your list ready for your visit in August
Posted 6/28/2023 2:33 AM (GMT 0)
After reviewing further there was an additional note regarding this area. The cribriform
morphology doesn’t sound too good. Hopefully, speak to the doctor tomorrow.

Note: The pattern 4 has in areas a large cribriform morphology. Tumor is present under the anterior staple line. Correlate with part 1 (fat pad) for final anterior margin status. Tumor is well-represented on block 4U (LEP).
Posted 6/28/2023 12:45 PM (GMT 0)
Cribriform is another negative factor that pops up nowadays. Your discussion results with doctor will be interesting, at least to me, while not fun being the person involved. I went from 4+3 to 4+5 a month or so after surgery based on pathology second opinion so I recall the emotional roller coaster you are on, not fun. Hang in there.
Posted 6/28/2023 1:08 PM (GMT 0)
Tim, requesting a Decipher test, to understand your chances of Mets over the next few years, might be a good idea. The Decipher score doesn't always correlate with Gleason score. On the other hand, with the issues on the path report, I'm not sure if it matters much, others will chime in who are more versed. But worth asking your Dr about
Posted 7/2/2023 8:25 PM (GMT 0)
Welcome to the club

My grade was mostly G6 with one core upgraded to G7 upon John's Hopkins second opinion of the slides.
Had SBRT about a year and ten months ago and my PSA went from a high of 7 then after greenlight laser surgery to reduce size of prostate I went down to around a 3.4 After SBRT it has been steady in going down now is (have to check sorry)
Posted 7/2/2023 8:29 PM (GMT 0)
Last PSA was 1.06 (Had to recheck)

So I choose radiation even though I have to add that a side effect was a uretheral stricture which right now is doing okay post dilation.

Good luck whatever route you choose.

Glen
Posted 7/7/2023 4:52 PM (GMT 0)
Update: Three weeks after RP (06/16/2023) still sore some and pressure in bladder area at times. Incontinent some especially when active, night is better. I see some improvements but still frustrating. I guess patience is needed. Just leakage when active.

Had virtual discussion with Uro yesterday and he was pleased with the surgery. Nerve sparing on the right side but had to cut into the left side which was identified before surgery as the tumor was on the edge and outside some. Margin was <1mm. He cut a greater path and found no cancer in between.

Cancer was very aggressive in the prostate with intraductal carcinoma and cribiform morphology patterns. Left side had EPE at less than <1mm which is the main concern and had Gleason 4+4.

He believes he got it all but time will tell. Appears I may have had the surgery just in time. No lymph node or seminal vesicles involvement.

Plan is to get the baseline PSA in a few weeks and meet in person early August. Then go from there based on future PSA results which will be every 3 months. If levels go above .02 then radiation will be evaluated.

Hopefully the incontinence will improve sooner than later and go from there.
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