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Posted 3/5/2018 8:07 PM (GMT 0)
Hi!

Thank you for being such a great resource along this journey. I am new to the group, 6 months post RP, and wish I had found this forum 8 months ago. Decisions may not have changed but I would have asked a lot more questions!

I do have a few questions for the group:

(1) Biopsy G8 was downgraded to G7 (4+3) at surgery. Should I feel confident the G7 is accurate since a different lab performed that pathology?

(2) PSA of 2.95 was relatively low for what initially appeared to be a G8. Will PSA post RP be a reliable indicator of recurrence or could things get out of control before it rises?

(3) Is it common for pelvic pain to continue 6 months after surgery? No pre-op tests were performed but most recent PSA was .00.

Again, many thanks for taking your time to help all of us newcomers!
Posted 3/5/2018 8:22 PM (GMT 0)
Hi Plate and welcome to HW!

You had excellent pathology and the downgrade on Gleason score is very encouraging. I hope your recovery is as good or better than expected. To your questions:

(1) You should feel confident because they examined your entire prostate post-RP and not just a small sample as in your biopsy. You could get a second opinion, but it rarely changes, and you wouldn't do anything differently anyway.

(2) Your PSA is the first indicator of recurrence. I advocate monitoring with an ultrasensitive PSA test because if there is a pattern, you'll want to know as early as possible.

(3) No, pelvic pain should have diminished after 6 months. You can ask your urologist, but it may be unrelated to the operation.
Posted 3/5/2018 10:06 PM (GMT 0)
Pelvic pain could be from a lymphocele, a collection of lymph fluid where a LN was removed. Happens in about 7% of RPs. Some surgeons routinely order an ultrasound at 6 weeks to check for them. If lymphocele hasn’t been ruled out yet, perhaps ask your surgeon/urologist about it.
Posted 3/6/2018 3:14 PM (GMT 0)
Thanks Tall Allen and Saipan Paradise for your tips. I will see the doctor this month for another PSA and will ask about both the ultra sensitive test and pelvic pain/potential lymphocele.
Posted 4/4/2018 7:17 PM (GMT 0)
Hey guys,

My signature has been modified slightly for additional information received after Dr. Epstein reviewed my surgical pathology. I decided to seek the second opinion for peace of mind because, 7 months post RP, I feel like I am losing ground rather than gaining. Back and groin pain continue and weakness/fatigue seem to be increasing. I will see the doctor on the 23rd and will ask about the possibility of a lymphocele.

Additional info from Johns Hopkins states the tumor extent was "moderate" (not sure what that means). The location was Left, Right, Posterior, Apex (biopsy indicated right side only). And the Gleason Score was 4+3, 80% Pattern 4. JH did confirm it is organ confined, so good news.

I go to the lab for a PSA test on Monday and want to be sure they do the uPSA. My two tests since RP have been the Access Hybritech PSA Assay. I have tried to research whether or not this is an ultra-sensitive test but have not been able to determine. Does anyone know?

Many thanks to all who support this forum. You provide knowledge, encouragement, and humor to brighten any day. I feel connected. smile
Posted 4/4/2018 7:43 PM (GMT 0)
My pathology was the same. 4-3-7. However like you my 4 component was 80% so my urologist said he would just consider me a G8. But in the end it is what it is. I would think your pelvic pain is related to your surgery not prostate cancer. I was talking earlier to a person that had total knees done at the same time. One side is doing great and the other has been extremely painful. Same surgeon, same equipment but wildly different outcome so far. My surgery was a big non-event and I was back to normal in no time at all. My best to you, good luck.

Hero
Posted 4/4/2018 8:14 PM (GMT 0)
Thanks, Hero!

I guess the pain could be related to plumbing issues. I had to have emergency kidney stone surgery a couple of weeks after the RP. The uro thinks the angle of the body position during RP contributed to the movement of a large stone which lodged at the top of the ureter. In any case, I hope the doc can provide some answers or do some testing.
Posted 4/4/2018 9:47 PM (GMT 0)
Lymphocels are usually related to lymph dissections during surgery...I got em 3 mos post op and they self resolved...I did have symptoms as followed...low grade fever and malaise.. it took about a month to self resolve and were discovered with ultra sound after complaints to uro who wanted a CT scan I nixed that... I did notice you did not mention lymph node dissection in your initial post...and doubt you had that done...hence doubt you have lymphocels... moderate tumour extent means what percent of the whole prostate gland had cancerous tumors...the surgical notes of your operation will have that{ the percentage} and that is available to you from your surgeon... Never be reluctant to ask hard questions to your medical team...they are your client not the the other way around...your other health issues are probably the cause of some of your post op symptoms...tjho the prostectemy will definitly affect those also...if just the stress...another factor to be dealt with post op...I did not feel " right" till about 10 mos...notably in the pelvic/penile area but others as well...as my surgeon said and I post this all the time...."there was a lot of slicing and dicing down there the pain has to go somewhere"} I liked my surgeon... a lot...ps... as always do not hesitate to consult your medical team because/despite of what you learn elsewhere...they are the "experts "...good luck
Posted 4/5/2018 2:20 AM (GMT 0)
Thanks Logo,

Your info is helpful. Yes, malaise is probably a good description of how I feel. And I did have 8 lymph nodes removed so I will definitely ask the doc about potential lymphocele. It is reassuring to know it took about 10 mos before you felt right again. Maybe I just need more healing time. I like your surgeon’s quote “the pain has to go somewhere”.

I really like my urologist/surgeon too, who I’ve known for years, but one of your posts last week on another thread made me stop and think. It was “...the biggest threat to getting the ‘right treater’ is ‘loyalty’ er...ah...misguided i.e...”. Just because I think he is great doesn’t necessarily mean he is great. And I should ask hard questions. Actually, BEFORE surgery would have been a good time to start!!! smilewinkgrin

Thanks to you and Hero for replying. Best of luck to you both too!
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