Intro, story, questions, CLL of prostate, BPH procedural remedies
Posted , 6 users are following.
61 y/o male.
Prostate history: elevated PSA 2 yrs, peaked at 9.5, not a steady rise. Free PSA indicated low risk for PCa, SelectMDX was low risk for any clinically significant PCa, MRI showed 3 areas of concern that the run of the mill radiologist would classify as PIRADS 4, but Dr K in Houston's sharp experienced eye saw inconclusive areas of concern accompanied by some kind of general biological activity throughout the gland. MRI guided targeted and segmented biopsy showed no Prostate cancer, but gland infiltrated with CLL, and CLL concentration higher in suspicious areas from MRI.
I already knew I have CLL Rai stage 1, and have not but may be close to needing treatment for it.
So I am left with pretty serious LUTS. Post biopsy I had urinary retention and was completely unable to urinate. After two self cath attempts, the second successful, we had a trip to the ER for a foley for 5 days. Ugh, I'd sure like to prevent that again except perhaps post procedure for a durable fix to this problem.
My prostate symptoms started over 20 years ago, and slowly slowly the LUTS got worse. Lately it has become much worse. I tried alfuzosin and have terrible circulatory side effects to the degree than I can not stand and carry out normal daily activities. I am currently taking low dose cialis which is not as effective as the alfuzosin, and has the same sort of side effects but to much lesser degree. For now, this is the stop gap treatment, but I do not see this as the long term fix.
I have an appt with my hematologist/oncologist in about a month and will discuss the possibility of treatment for CLL, which may help lend some relief to the hyperplasia, but I remain very uncertain that CLL treatment will be a durable fix for the prostate since my prostate history predates the CLL.
Dr K recommends against rezum, urolift and his own focal laser treatment for my hyperplasia due to prostae size and medial lobe protrusion into bladder, and recommended possibly green light or HOLEP. The other I am most interested in is TULSA PRO.
I am specifically looking for input about retrograde ejaculation, and want to gauge whether it is enough of an issue for me to potentially affect my decision on trying to get generic HOLEP locally under insurance or try to find Ejaculatory Preserving HOLEP of TULSA PRO out of state, out of network, out of pocket.
Thanks for any input!
0 likes, 10 replies
tom86211 sven54741
Posted
Sven,
I had to look up CLL and TULSA PRO on the net as I had not seen these before, but now I know what you are talking about. You are the only one who knows if going out of state for the Ejaculatory Preserving HoLEP would be worth it financially, but sounds like Dr. K is giving you excellent advice. From what you have said I assume having your prostate removed (RRP) is NOT an option? That would most likely take care of any cancer and eliminate any future BPH issues, a double "fix". However, there is always a possibility of some lasting incontinence from this procedure and also ED issues. I don't believe there are any magic fixes with no side effects from any treatment for either prostate cancer or LUTS issues. You make your best decision and hope for a good outcome. The HoLEP removes prostate tissue that is sent to the lab for analysis that looks for prostate cancer cells.
In 2012 my PSA went to 5.6, I had a 12 core biopsy and it came back positive for Gleason 6 cancer. A year and a half later I had another biopsy that showed "progression" and several urologists recommended I have treatment, so I had HD Brachytherapy. As far as I can tell, that has cured the cancer (PSA now 0.2), BUT, I had five years of BPH torment, and had a PAE in 2017 and a bipolar TURP in April of this year. Years of BPH issues can damage your bladder, and mine is calming down now, but it has taken many months. If I had it to do all over again I would have gone for RRP five years ago, and that would have solved my BPH issues, BUT, I will never know if I would have ended up with some incontinence.
Tom
sven54741 tom86211
Posted
CLL in the prostate is not the same as prostate cancer. Not at all. The CLL is body wide, and there is no logical reason to remove any or all of my organs. CLL is cancer of the B-cells which are white blood cells, so everywhere there is blood, there are CLL cells present... All the organs and tissues of my body without exception. It just is likely contributing to the prostatitis/inflammation causing the BPH. Your choices may well be different than mine, but there's no way I am choosing RP as treatment for BPH. RP to me is not worth the risk of complications for a problem that is not prostate cancer.
This is a BPH LUTS problem complicated by the CLL. CLL treatment may help reduce the inflammation in the prostate. I do not tolerate the meds for BPH, so that leaves possible ablation of surgical treatment for BPH... NOT prostate cancer.
tom86211 sven54741
Posted
Sven,
Surgeons will not remove your prostate unless you do test positive for prostate cancer, so it wasn't clear to me from your description if you tested positive or not - I didn't think so. In the future, IF you do test positive for cancer, then RP is an option. My point was that the radiation I received cured the cancer, but left the prostate in place to torment me for five years with BPH issues. So, in your case, HoLEP would be an excellent choice. As you mentioned, cost is a factor - covered "normal" HoLEP or the advanced type that "might" spare you from retro. I say might, because nothing is guaranteed with these procedures. That might be very expensive out of pocket and you have to be sure it's worth it.
Tom
doug13657 sven54741
Posted
I had a Holeup three years ago this November, after having had several UTIs and BPH for several years and a higher psa count for 2-3 years, but no cancer. I would do the Holeup again, do have retrograde, but it's not a problem, can urinate like a 20 year old again! 😃
Badbolr sven54741
Posted
i do t know what most if that is but i have a median lobe and just had Rezum as it is recommended fir such.
i read many doctor sponsored reviews on HoLep, urolift and Rezum and they said Rezum is good for median lobe
given the procedure shoots steam into precise locations it makes sense to me as a laymen
ill report back on effectiveness in the coming weeks
sven54741
Posted
I am kind of astounded that TULSA PRO is not common knowledge on this forum. It is newly approved by FDA for use in the US but has been in use for quite a while in Europe and has a very good track record for PCa that is deemed appropriate for focal treatment. To my knowledge only Dr Scionti and several large teaching hopsitals are actually offering it so far, including Hopkins and UCLA.
Guys, I am taking Dr Karamanian's recommendations that Rezum and Uro lift are not appropriate for my circumstances. They have already been eliminated from my consideration.
HOLEP and TULSA PRO are the options I am considering and the point of this thread. The other aspect that will affect my decision is a chat about the CLL issue with my Leukemia specialist. I suspect since I had urinary flow/LUTS problems even 20 years ago which predates the CLL, that the CLL is a secondary contributor to the prostate inflammation, and thus CLL treatment will probably be wishful thinking in terms of treating the hyperplasia
The main appeal of HOLEP is the success rate regarding urinary flow. It seems very consistent and the repair is durable.
Finding comprehensive information about TULSA PRO regarding BPH treatment in the US is harder to come by since it does not have a long history and US based comprehensive studies.
rdemyan sven54741
Posted
Did you consider button/bipolar TURP? If so, what were your reasons for rejecting it?
sven54741 rdemyan
Posted
No clear advantages. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3235202/
Better outcomes less complications with HOLEP:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4446381/
And in terms of less prostate tissue removed, TULSA PRO is much more attractive in concept than TURP.
Also, regarding durability, need for repeat procedure and Effectiveness of HOLEP vs urolift anf rezum
Plus reading MANY anecdotal reports on the online forums, there are minimal accounts of complications with HOLEP and all report either: " I pee like a race horse" or I pee like a 20 year old again". The drawback is retrograde ejaculation, but that is essentially the the same for TURP, and anecdote for TURP includes frequent reports of having to repeat the procedure.
Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.
sven54741
Posted
Wow, a video discussing/comparing stats for HOLEP, Rezum and urolift with references to TURP by Scott Cheney MD from Mayo clinic is off limits?
The source is Grand rounds urology:
The mission of Grand Rounds in Urology (GRU) is to be the largest, most engaged urology professional community in the world, delivering the best practice information to improve physician performance and, ultimately, better patient outcomes. E. David Crawford, MD, Professor of Surgery, Urology, and Radiation Oncology, and Head of the Section of Urologic Oncology at the University of Colorado Denver in Denver,
Thanks for the input fellas, but it is not worth my time taking the effort to participate if there is this form of censorship.
Best of luck to all.
lee56659 sven54741
Posted
The moderators didn't used to allow links of any kind so there is some progress being made. Easy enough to send a PM and not have to guess whether the mods will remove a link or not. You can count me as a happy TURP recipient. Very pleased with the results. I also had a large median lobe.