Hello everyone, we have a plan. Quick refresher: My husband is 52 and has recently been diagnosed with prostate cancer after a biopsy had 10/12 core samples positive and all were graded as 3+4 = 7 Grade 2. This was through a local urologist that he was referred to after his first PSA that was ever drawn came back at 4.7.
We are in Illinois so there are a lot of reputable academic medical centers around. He had a 2nd consult last week at Rush University and a 3rd consult today at the University of Chicago Hospitals. He's going with the University of Chicago. They requested the slides last week and did a new pathology read on them. The pathology report from the Univ. of Chicago actually downgraded the cancer. The pathologist at the Univ. of Chicago rated 9 out of 12 samples as 3+3=6 Grade 1 and only one sample was 3+4 = 7 Grade 2. It doesn't change the treatment plan, but it's interesting that there was such a difference in the pathology read from two different places.
Mike is choosing to have the radical prostatectomy, the surgeon has done over 4000 robotic assisted RPs. He was very optimistic and believes that he has an excellent chance at never having a recurrence in his lifetime - 90% chance that there will not be a recurrence. He said that if there isn't a recurrence within 10 years following RP, that is generally considered a cure at that point.
Pre-op ADT was not recommended. He wants him to see a physical therapist to work on Kegel exercises in advance of surgery - thanks to K9 and the suggestion to get going on Kegel's he's already been doing them!
We discussed other treatment options including radiation, however given Mike's age of 52 and extent of cancer in the prostate, it is not the recommended treatment. They will do genetic testing based on the family history (his father passed away from metastatic prostate cancer @ 71y/o).
Overall, he's in the right place and we both feel very comfortable with the surgeon, recommendations, and plan. With the downgrade in the gleason score, his suggestion is for RP to occur within 6 months of the biopsy. If the overall gleason score was still 3+4 = 7, the recommendation is for RP/treatment to occur within 3 months of biopsy.
Standard information re: surgery ... catheter comes out after 7 days, no lifting >10 lbs for 4 weeks post-op, etc.. Discussed post-op side effects such as urinary issues, ED issues, etc... He reviewed options for treatment of ED issues and will recommend a program post-op to help promote the best outcome.
Will find out tomorrow about scheduling the surgery/available dates, etc...
Thank you all for your guidance and advice, we both appreciate it! I'll keep you updated on when surgery is scheduled. Any additional advice is welcome Mrs. Mike
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52Mike
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M52+ No doubt that you have been the sort of advocate every man should wish to have. The "Plan" sounds like a excellent one and your persistence and thoroughness will surely pay dividends in an excellent outcome. Starting PT/kegels early was a suggestion from one of my nephews that had the surgery before me. Working with a PT will assure he is doing them right and will get immediate benefits. Many men struggle with incontinence because they never learned to do kegels correctly - as the mind-to-muscle connection is one that has to be trained to work.
I have two nephews who had RALP surgeries in their mid 40s. Both are now about 10 years out and appear to be cancer-free. Having a prostatectomy is not an easy choice to make, but at Mike's age, I think you have made the right one.
Very best to the both of you as you schedule for his surgery date. Please feel free to reach out here with any questions that come up before, during, or after it. This is a road many here have traveled and yours looks to be one with a successful destination. From those of us whose surgeries came too late to be curative, we hope for yours to be otherwise.
Continue your super advocacy and stay forever positive - and equally well.
Thanks, K9. No choice but to join the "club" at this point - but I'm thankful that this club seems to be full of some pretty amazing men that are incredibly knowledgeable about PC and willing to share their knowledge and experiences. Wow, your nephews were young when they were diagnosed - glad to hear that they are doing well. I fear that it will be the same for our boys : ( Anticipating surgery in early-mid November - waiting on the date confirmation.
52+ You are most welcomed for anything we can contribute to your better understanding of the road ahead. Many travelers on this road - way more than there should be.
My nephews are doing well and, due to the extensive family cancer histories, neither wasted much time getting to treatment. I'm still one who believes that diet/lifestyle/stress/environmental toxins/etc. are the main factors that lead to cancer. Genes may in some cases "load the gun", but factors we have a large degree of control over are what "pull the trigger". Cancers (different types) are widespread in my family (near universal in my parents' generation and fully so in that of me and my siblings), but to date no one has ever tested for a single genetic defect?
So try to get those kids on the healthy lifestyle train now - and their lives have a much better chance of being disease-free.
Good Luck with the scheduling - and what comes after. Super Kudos to you for your persistent advocacy. It's often the partners who do it best - and you are proof of that. The early PT should help significantly with the post-surgery recovery.
Still waiting on scheduling ... ugh. The more I read, the more I want the surgery to happen next week. Even though U of C downgraded it to 3+3 =6, I'm nervous about the volume of cancer in his prostate and feel like the longer he waits for surgery, the more likely it will be to spread prior to removing it. Do you knowledgeable men think that waiting until November is OK? The surgeon said that having the RP w/in 6 months of the biopsy is fine ... biopsy was July 28th. I even asked about the volume of cancer and he said that w/in 6 months doesn't change overall outcome. I made sure to point out that the initial PSA leading up to this was in early April 2022. It's now Sept. 12th. Not sleeping much over here .. I know it's typically a slow growing cancer, but ...
Mike wants to get it scheduled, but he's comfortable waiting until November. Me, not so much ...
Here's the updated pathology report from U of C.
A. Prostate, left base; needle biopsy. Prostate adenocarcinoma, Gleason score 6 (3+3) Grade group 1, 2.5mm focus. Tumor volume is 10% of the submitted tissue.
B. Prostate, left mid; needle biopsy. Prostatic adenocarcinoma, Gleason score 6 (3+3) Grade group 1, less than 1.0mm focus. Tumor volume is less than 5% of the submitted tissue.
C. Prostate, left apex; needle biopsy: Prostatic adenocarcinoma, Gleason score 6 (3+3) Grade group 1, less than 4.0mm focus. Tumor volume is 30% of the submitted tissue.
D. Prostate, left lateral base; needle biopsy: Prostatic adenocarcinoma, Gleason score 6 (3+3) Grade group 1, less than 1.0mm focus. Tumor volume is less than 5% of the submitted tissue.
E. Prostate, left lateral mid; needle biopsy: Prostatic adenocarcinoma, Gleason score 6 (3+3) Grade group 1, less than 8.0mm focus. Tumor volume is less than 70% of the submitted tissue.
F. Prostate, left lateral apex; needle biopsy: Prostatic adenocarcinoma, Gleason score 6 (3+3) Grade group 1, less than 1.0mm focus. Tumor volume is 5% of the submitted tissue.
G. Prostate right base; needle biopsy: Small focus of atypical glands suspicious for carcinoma.
H. Prostate right mid; needle biopsy: Prostatic adenocarcinoma, Gleason score 6 (3+3) Grade group 1, 2.0mm focus. Tumor volume is 10% of the submitted tissue.
I. Prostate right apex; needle biopsy: Prostatic adenocarcinoma, Gleason score 6 (3+3) Grade group 1, 2.5mm focus. Tumor volume is 10% of the submitted tissue.
J. Prostate, right lateral base; needle biopsy: Prostatic adenocarcinoma, Gleason score 6 (3+3) Grade group 1, 2.5mm focus. Tumor volume is 10% of the submitted tissue.
K. Prostate, right lateral mid; needle biopsy: Prostatic adenocarcinoma, Gleason score 7 (3+4) Grade group 2, 5mm focus. The Gleason grade 4 comprises 5% of the entire tumor volume. Tumor volume is 30% of the submitted tissue.
L. Prostate right apex; needle biopsy: Prostatic adenocarcinoma, Gleason score 6 (3+3) Grade group 1, two foci (less than 1mm and 4mm), involving one biopsy core. Tumor volume is 30% of the submitted tissue.
I will follow your journey closely. We are on nearly the same path and plan save I am a year older. We live in North Florida. My initial biopsy remains Gleason 3+3 in 9 of 12 cores with two of them over 50% (the balance are 10% or 5%). I learned of this in August and after a number of consults will go to Robot RP in early October. Both of us are / were mathematicians so all the charts and nomographs have not proven much psychological benefit—too many variables for the lay person without a post-RP pathology report.
The greatest comfort, in the presence of imperfect data, has been the family team—something I started to increasingly take for granted over the years. Therefore, I am oddly thankful for this “values check.” Much of our conversation about the future turns on the strengths of the relationship and what truly makes us happy / loved. This is where we will focus post-RP…targeting what has made us a strong couple. To be sure there will be some tough ego-checks in the weeks and years ahead but we vowed to find the positive in every day and data point.
We intend to make our annual pilgrimage to Wrigley Field and a big Cubs game for decades to come!
Hello! Sorry to hear that you are also on this journey : ( Prayers for a successful surgery for you w/o any long-term side effects! Mike's surgery is now scheduled for November 9th, please let us know how it goes and if you have any tips in the immediate post-op period as you go through it. How much time are you going to take off of work in the post-op period?
I am planning a month but arranged to telework until about 60 days after the surgery. I am in front of a lot of people with regularity so I’d rather just remain away until the “forecast” peak of incontinence is past.
My husband is only planning on taking a week - he works from home so he thinks he'll be ok. I'd like him to take 2 weeks off, but I know that he'll work anyway ... What did your urologist say on the timing to start treatment - within 3 months or 6 months of diagnosis? Sorry you're going through this.
52Mike…12hrs post-op. I feel better gladly more comfortable than I expected. Very little pain from the procedure. Psychologically better off too…my pre-diagnosis positivity on the future is quickly creeping back. After 30 hours of a clear liquid diet the popsicles “…are to die for.” Consume many! Cath is a new feeling—and a bit uncomfortable. The Trocar entry points are small (like less than 10mm) and I don’t expect there will be much evidence a year from now. I’ve hd a Tordol every four hours so that may be affecting my opinion here.
Doc said procedure went fine—though that is pretty standard verbiage. Was able to completely spare the nerves of the left side due to those being lowest volume cores. Right side was not completely spared but he was pleased to have to resect less than he thought off the clincial estimate. Any “shyness” I had for discussing my private parts with strangers jas rightly—and quickly—left. Direct talk only!
Send me a chat and I will provide more or less frequent updates and key doctor notes. This is so everyone on the thread doesn’t get notified with each update.
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