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Posted 3/1/2021 1:40 PM (GMT -5)
New member here. I pray all of you are doing well. Was diagnosed in November of last year. In lieu of leaning on my relationships dealing with this malicious beast, I leaned on you guys. I certainly can’t thank you enough. Until I knew exactly the extent of contamination, my wife and I just managed internally. And of course, you don’t have a decent feel until initial treatment is complete. I’m posting in hopes of paying it forward, as you did for me. All of you are special individuals. So here we go, I’ll try to keep it short:

PSA History:
Age 43, 1.7
Age 44, 2.3
Age 45, 2.5
Age 47, 2.1
Age 48, 3.0 (should have been referred to a Uro no later than here, above 2.5 and 0.9 jump)
Age 49, 2.9
Age 51, 3.3
Age 52, 5.2, Free PSA ~8%

Biopsy, 11/6/2020, 12 cores
First opinion:
Right lateral base: 3+4, 40% of core
Right lateral mid: 3+3, 40% of core
Right lateral Apex: 4+4, 5% of core
Right medial Apex, 3+4, 10% of core

Second opinion:
Right lateral base: 3+4, 40% of core, 5% pattern 4
Right lateral mid: 3+3, 45% of core
Right lateral Apex: 3+4, 5% of core, 10% pattern 4. Cribriform not present.
Right medial Apex, 3+3, 5% of core

11/20/2021: CT and bone scan clear

Sick with Covid from 12/23/2020 until New Years Day, Dangit!

MRI on 1/14/2021: 1.7 cm x 0.9 cm lesion in posterior peripheral zone of right mid gland and base. No extracapsular extension, Pi-Rads 4.

Prostate removed on 2/8/2021 by Dr. Scott Tully (3000+ surgeries), Robotic
Surgery started around 7 am and was discharge by 3 pm the next day. First week following surgery wasn’t horrible by any means. Painful moving from a lying/sitting position but outside of that, comfortable. For me, the catheter for 7 days was uneventful. Very fatigued on day 6, probably the worst day. Felt like I was going to pass out in the hot shower that night as I got light-headed. By day 10, feeling good, abdominal pain was minimal. Very lucky as I was 95% dry upon catheter removal. Still leak some when I move certain ways but not a problem. Using one pad a day. I’m really sorry for the guys having to use 5 or 6 a day as this would certainly get frustrating. Was able to keep both bundles. Climaxed four times since surgery, 3 with Cialis help and one without. I have to credit the positive results due being a younger patient and the level of care I received. It’s certainly nothing I’ve done.

Final pathology report was 3+4, ~20% of prostate involved. 30% pattern 4. No capsular extension. Margins clear. Perineural invasion identified.

So, most has been positive so far but that three-month test is lurking. The biggest challenge moving forward is test anxiety but worrying does not help. If it shows its ugly face again, I plan on treating at a low PSA and marching forward. I hope this helps someone! Best wishes to all of you.
Posted 3/1/2021 3:24 PM (GMT -5)
That is all very positive! Congratulations! It only gets better from here. The odds are much in your favor that you got it all the first time.
Posted 3/1/2021 8:29 PM (GMT -5)
Sounds like you are doing great, must be nice to be young smile

There is nothing in your post-op description and pathology that indicates you should be worried about your first PSA test or your recovery. Sounds like you have the right mental attitude so just roll with it and get yourself fully healed up. You should see the doctor at 3 months also where he hopefully says he will see you in a year.
Posted 3/2/2021 5:03 AM (GMT -5)
Glad to hear you don't need our help right now, Paul. Thanks for the update. Happy to see that the final pathology didn't find any 4+4. Best wishes for a continued uneventful recovery and no more treatment.
Posted 3/2/2021 5:36 AM (GMT -5)
Paul, it looks good at this point. For the record, I just made the labcorp appt for my 6 year post RALP blood draw. How are you doing on the other aspects? Is your strength coming back? How about continence? How about ED?
Posted 3/2/2021 2:21 PM (GMT -5)
Thank you for posting.
It gives me comfort for my upcoming surgery which I will have late April or early May. (I am working out and losing weight)
It means a great deal to me hearing these examples and as important is the encouragement one gets.
Hopefully my post surgery story will pay it forward but as of now I feel more of a taker than giver.

Glen
Posted 3/2/2021 2:31 PM (GMT -5)
Hello NPP and welcome. Glad you are doing so well and thanks for sharing your story.

Jim
Posted 3/2/2021 10:10 PM (GMT -5)
Thank you all, I appreciate the responses.

Fiddle, thanks for the encouragement. I hope so and time will tell. My position is to stay on top of it but forget about it as well, if that makes any sense. Your numbers are looking great. The less than sign certainly has a new meaning for many new members like myself.

Thanks Mumbo, I haven't been referred to as young in quite some time, and I very susceptible to flattery. 😊 I believe my next meeting is a ED type meeting and then later the 3 month follow-up. I'll be sure to hit those visits. I see that you got Epstein involved. I'm considering the same for my final pathology.

Paradise, you are 100% correct and I was lucky the G8 was downgraded. It's almost a flip of the coin for all of us. Heck, I just turned 53 and I have prostate cancer. Looking at this months back, and if I remember correctly, my chances of having prostate cancer was less than 5%, based on my age. With that, my confidence in "the odds" has diminished some. And congratulations on your undetectable! Looking good.

Halbert, I'm doing well, thanks for asking. I'm around 22 day post surgery and I'm doing very well. Strength is good but not 100%, maybe 90%. I seem to tire a little easier than pre-surgery. Ran on the treadmill today for about 15 minutes. Went well, but the abdomen feels a little flaky, not bad but do notice I recently had surgery. Doc said I can start hitting the weights in a few weeks. Will definitely start off slowly, with light weights. In terms of continence, I leak some but not enough to be bothersome. Just pop on a Depends everyday and I'm off and running. Before surgery, I was shopping for penile clamps as I didn't anticipate to be dry for 6 months to a year. My urine stream was sort of weak the first 14 days but has become stronger since, probably back to normal now. ED does not appear to be an issue at this time but I understand it can always take a turn for the worse. Taking Cialis everyday and it seems to really help. I would say I'm about 50 to 60% here. With Cialis, I'm probably 90 to 100%. That's some good stuff. 😊 I do feel like I'm off to a good start. Congratulations on your numbers, excellent!

Glen, you posting to my comments automatically places you in the giver category. Thank you! You've got this. Like others, I just recommend a great surgeon that has done thousands. My first URO had done many but did not specialize in RPs. He certainly understood I wanted a specialists. I was not shy when I conveyed this to him, too much on the line. He is a good Doc and understood. He hooked me up with one of his fellow surgeons and to me, this was a game changer. The surgeon and his team did a fine job. Again, you've got this.

Jim, thanks and I appreciate all of you keeping me sane through this journey.

My only complaint about the whole process was.........The Pathologist. Do these people understand the word "details". If you notice, my first biopsy results did not include percent pattern 4. What's up with that? Info is a premium. Did the pathologist think this was not important? Incredible! Same with my final pathology report, limited info. Are they just busy! (Yes they are) I'm considering sending my prostate to Epstein. But overall, our medical community is a force. I'm in awe watching these people manage Covid patients over the last year, just speechless.
Posted 3/2/2021 10:53 PM (GMT -5)
Hi Paul. I wish you all the best for your first post-op PSA result.

Re your path report complaints, I'm thinking that either you are not reporting all the information there, or you received only a summary and not the complete post-RP report. The latter should have your path staging, which I assume was pT2, although you did not mention seminial vesicle status, nor the presence or absence of other findings, such as lymphovascular infiltration and the number of lymph nodes removed and their status.

Unlike a post-op report, the percent pattern 4 in each G7 biopsy core really doesn't provide much accuracy about what the whole-prostate situation is. In fact, your 2nd opinion found 5% and 10% pattern 4 in your two G7 two cores, pretty wide of the mark from your whole-prostate determination of 30%. Many 3+4 men are upgraded to 4+4, just as some 4+3 are downgraded to 3+4 post-surgery. It all depends on how representative the cores found are. A biopsy sample is just too small to determine the actual percent with any accuracy. The biopsy percent pattern 4 in G7 men and pattern 5 in G9 men is more important for those who choose radiation as their primary treatment, because the biopsy snapshot is the only rough estimate they will have of their Gleason score.

Djin
Posted 3/3/2021 6:47 AM (GMT -5)
Paul, Please do ask your docs for the full final pathology report, not just the summary. What's important to know is your final gleason score and percentages, your final staging, and whether there is any extension (EPE, positive margins, lymph node involvement, SVI (seminal vesicle invasion).
Posted 3/3/2021 9:29 AM (GMT -5)
NPP welcome to the forum, and thanks for your post. Glad you are doing well.

Re your pathology report, I had the same issue, details missing. When I started showing detectable PSA, about 2 years after surgery, I requested that the details be provided, and it took a month because they had to pull the slides and actually relook at them. I had to ask 3 times.

Information is gold
Posted 3/3/2021 2:16 PM (GMT -5)
All things considered Paul, you're not doing well.....

You're doing GREAT!!!

Definitely have your surgery slides forwarded to Dr. Epstein now. You can call his office, and they will handle the details with your surgical location. Pathologists are, in general, an odd group who don't speak to patients. Probably with good cause.

In my experience, the best way to get a complete pathology report is to request it from the medical records department at your hospital....directly. Dr. Scott Tully is first rate, but perhaps some clerk in his office is less so.

In any event, trust your full path report contains no surprises, and your first blood draw is a winner. Congrats, again.
Posted 3/3/2021 11:28 PM (GMT -5)
Thanks Djin, I agree with your comments based on my studies over the last four months. Spot on. But I do believe it should be a "Best Practice" to provide pattern 4 and 5 percentages for biopsy cores. Over the last four months, I wanted all the data I could get, maybe just for something to hang on to, good or bad. I understood that the final pathology could upgrade but was maybe looking for hope. It was certainly a mental roller coaster for me. The only issue I had with the first biopsy report was this omission of pattern 4 percentage. Not a problem, got a second opinion. I'll post my final pathology report in a few days. Maybe it's typical but I was wanting more.

Halbert, thank you. Yes, I'll post my report and would appreciate your and others opinion. I'll point out what I believe are the deficiencies.

Thanks Prato, That's how I'm looking at things right now. If I have a reoccurrence, detailed data may be the deciding difference in beating this dog down. I just want to be ready for battle if/when that time comes. Wish I had a microscope and could delineate cancer cells.

Gary, Thanks for the recommendations. I'm leaning that way. I'll post my report and would appreciate feedback. Maybe I'm just high maintenance. 😊
Posted 3/4/2021 6:44 AM (GMT -5)
Paul I'd echo gary's comment: you're doing great. Take your time. Take naps if you need one. And, seriously, if you have a willing partner, work together on your ED issues. You might be surprised--some of us have discovered that it's way better now than it ever was before. It's hard to explain, but it's true.

Keep coming around and help the new guys--that's the best part of it all.
Posted 3/4/2021 1:38 PM (GMT -5)
Paul - I have three PCa pathology reports: biopsy, post surgery, and 2nd opinion. They were done by the urologist pathologist, hospital pathologist, and Epstein's group respectively. They are all different and I can complain about all of them to some extent.

The urologist pathology report provides lots of information for the 14 cores but draws no conclusions nor has a summary section. The doctor explained everything to me in person and gave me a copy.

The hospital pathology report also provides lot of information and a summary listing of items found but no actual discussion text.

The Epstein group report was 2 pages and just provided a summary listing of items with the upgraded classification, Gleason at margin, and a note about incisional vs EPE postive margin. No conclusion or summary text was provided. I had to call them to go over the report so I understood where the differences came from. As a second opinion report, I did not expect them to repeat all the data in the other report but had hoped that they would contrast with the original report and explain the finding differences like second opinion engineering reports I have done a few times over my work life.

I have also had the opportunity to review two of my wife's BCa pathology reports. They are equally different and skip summary text or commentary sections. In all cases, I could easily suggest improvements to all the reports to add missing information, fix typos, etc. to help the patients (and GP's) understand them better. A lot of this is just the way medical stuff works and is the same when you review radiology reports and they briefly mention nasty sounding stuff that you have to look up and discuss with your doctor.
Posted 3/7/2021 8:34 AM (GMT -5)
If you get a chance, try to get physical copies of you medical records. As others have said, might be something on them to have checked out. Or more practically, if you move to different location, you'll have them. I also use LabCorp for my tests and their interface / ability to pull results anytime is a big help (along with a paper copy or copy to a PC).

As far as anxiety is concerned for the PSA test, I've grown accustomed to having some anxiety but know that there are still a lot of tools in the shed if something needs to be done. And I've had surgery and ART already - am I cured? Maybe, but having a very easy test to take to make sure is great and not available to every cancer patient. And you can decide, after a time, whether to do regular testing or go out a year at a time. I decided to continue with quarterly for now.
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