Update on BPH and cancer battle
Posted , 9 users are following.
2 1/2 year update:
I had the High Intensity Ultrasound (HIFU) almost two and a half years ago.
Recap: I was suffering from symptoms of BPH where my stream was almost nonexistent at times and going the bathroom every 10 to 30 minutes. I was now at a desperate point. My symptoms had come on rather quickly. My GP has recently retired and the person taking over his patients was a female nurse practitioner. After an uncomfortable and rather awkward visit, which included the DRE and blood work, it was determined My PSA was 18.5. The first uro did an ultrasound to determine I was retaining urine and in a later visit did a cystoscopy. He determined I had a structure and was pushing to use his green light laser. He was not concerned about my PSA of 18.5 and did mention any of the potential side effects until I brought them up at which time he downplayed them (including RE which he said he found that women actually like it better because there is no mess). I was still uneasy about the PSA score and sought a 2nd opinion. As it turned out, after a 3T MRI and then a fusion biopsy, I had cancer. The second uro said my only obvious choice was a radical prostatectomy.
I did tons and tons of research including this forum, internet investigating of all options for cancer treatment, reading a book on a new radiation treatment ($100K and out of my financial reach...but I didn’t want radiation anyway) and even visiting CTCA. CTCA was very supportive and great people but the visit helped me makeup my mind that they had no procedures to offer me that I was interested in. While sitting in the lobby of the CTCA building, I actually sent an email to the doctor who would ultimately end up performing my HIFU procedure. The HIFU killed the cancer (so far) and it enabled me to have a decent urine stream again.
So, after two and a half years, I have had three 3T MRI’s, and just recently a cystoscopy (due to some blood in urine which has cleared up on its own). And just last week, my 5yr. Colonoscopy. The cystoscopy showed no cancer in the bladder and everything looked fine with the exception of very irritated bladder neck due to a large median lobe. The uro thinks the blood was from the irritated bladder neck but an earlier CT scan (prompted by the blood) showed a kidney stone and since the blood is gone, I think the blood was from the kidney stone but I don’t know for sure.
So, since the HIFU procedure, all the MRI Readings have shown no signs of cancer. My PSA only went down to 10.5 but is not climbing and I can pee almost normal almost all the time. The stream is not like a 22 year old but it is quite acceptable. Plus, I can sleep through the night without having to get up to pee 95% of the time. As for the results of the Colonoscopy, everything looked great and the doctor said there was no evidence or signs of trauma from the HIFU procedure.
BTW, I am on no medications (for anything). I know by all accounts that this is not a very long time (and things can change) but not a bad report at 2 and a half years!
So, after the Cystoscopy, the urologist wants me to start taking Finasteride to shrink the prostate to reduce the irritation on the bladder neck. If I do anything, (and can afford it) I think I will do FLA.
That’s my update. If anyone has comments or questions please post and I will answer them the best I can. Also, any comments or suggestions on the bladder neck issue are welcome and appreciated.
0 likes, 14 replies
owen35669 ES28567
Posted
Thanks for your story. I am 73. I have significant BPH...and all the symptoms you encountered. But my uro says my routinely low PSA (2.4) + an OK DRE is all the review I need each year. I hear these stories though and I wonder. I guess if I had cancer, I'd know it by now. I have been in this holding pattern for most of 30 years.
But again, thanks for your story.
ES28567 owen35669
Posted
Hi Owen,
IF my PSA was only 2.4 (like yours) I would probably have picked something else to deal with the BPH. I didn’t want to do the drugs with the side effects and I didn’t want to do TURP or Green Light because of their side effects. But from my research at the time, 2 to 3 years ago the results of PAE and Urolift were not having very good results for a large median lobe. But being diagnosed with cancer took me down a totally different path.
I hope you find a solution for your issues. What’s really great is they are continually coming out with new methods and improving on the ones they already have. I hope you find the right solution that works best for you.
Howard31850 ES28567
Posted
Great story - congratulations and continued success.
If you have a large median lobe then FLA is the way to go with Dr. K in Houston for sure though it is expensive as you say.
Can you relate your HIFU experience a bit more? Where was it done and with whom and what were the treatment like - how many any side effects? What was Gleason score and did HIFU take out all lesions or just the index lesion?
ES28567 Howard31850
Posted
Hi Howard,
My Gleason score was 3+3 but the Doctor who performed the HIFU procedure (Dr. Scionti) thinks the fusion biopsy was an indirect hit of the cancer and the score should probably be 4+3 (it is possible my local uro did not do a good job on the fusion biopsy as even though he had performed many biopsies, it was one of his first doing a fusion biopsy. It might have even been his first without the fusion rep to guide him).
The CTCA also had reviewed the biopsy report and upgraded it to Gleason 7.
I considered every option including just active surveillance but did not want to do biopsies every year. Can’t imagine punching holes in my prostate every year to be very healthy. I went through some depression and anger as I have always lived a reasonably healthy lifestyle. Also, every solution I researched to treat the cancer had its own poison. There was no perfect choice.
My biggest concern was the cancer being close to the seminal vesicles so I felt I needed to take some action before the chance of metastasis. I also had to pick a procedure that would take care of the BPH as well as the cancer. My prostate was 98 cc with a “giant” median lobe.
Dr. Scionti said he could target the cancer and would also focus on the BPH issues as much as possible to buy me some time before I would need to revisit a solution for the BPH. He also assured me he would do everything possible to preserve sexual functions (but no guarantees) and the chances of incontinence or RE would be very low with this HIFU.
As it turned out, I had an erection the very next morning after the procedure. I had a Foley catheter so I was extremely happy everything was working but I really wanted it to go away. I suffered no incontinence but there are some signs of RE or there is just less because of the destroyed prostate or perhaps the Median lobe is interfering. I really don’t know. All in all, after 2.5 years, and a good bill of health, I am extremely happy with my HIFU choice.
My two main concerns now are treating the BPH for a longer lasting result and hoping the cancer does not come back.
Based on what I have researched, I think the best choices to date for a large median lobe are FLA, or possibly (suggested by Ken) Rezum. My concerns/goals are still the same...to minimize any side effects.
I’m open to other suggestions if anyone knows of something else to consider.
jim81578 ES28567
Posted
Sounds like you are a lucky man. Keep up the good work. Fla works rather well with not much side effects..
Good luck..
Jim
kenneth1955 ES28567
Posted
Good Evening
I'm happy that you did the research on your problem.
Doing a radical prostatectomy is not always a good procedure for some men. It has a long heal time and a lot of side effects.
Have you look into any other procedure then FLA. Which is very good but very expensive. Dr. K is a very good caring doctor. He has help may men on this site.
I don't know if you want to start taking Finasteride. It may help you with the prostate shrinking but it has a lot of side effect. It may effect your sex life. Please look it up.
You don't say how big your prostate is I don't know if you would be able to have a Urolift they are doing them on median lobes. Doctor are just starting to do them. If you want I can e-mail the company and they can send me a list of the doctors trained to do them. I did that for a few men in California. There are 6 there that are doing them.
Just let me know. Take care Ken
ES28567 kenneth1955
Posted
Hi Ken,
Thanks for all your support. I have no intention of taking Finasteride as i am concerned about the side effects. but I will look into the Urolift, Rezum, and FLA. i dont know what the costs are for each but I will do my research. I'm only 59 so i don't qualify for anything and insurance doesn't cover these procedures.
keith42667 ES28567
Posted
ES28567; What is a HIFU procedure? Is it only for prostate cancer?
ES28567 keith42667
Posted
HIFU is: High Intensity Focused Ultrasound. Ultrasound is relatively safe, they use it to check on the fetus in the womb .
The way it was explained to me is it is similar in principal to the suns rays... the suns rays are relatively harmless when we are only exposed to them for reasonable amounts of time. But when you focus the rays to one point (through a magnifying glass), then the rays can burn a specific point. Ultrasound can do the same thing. And when focused on the point where the cancer is, it kills the cells and burns the cancer away. The burned cells are then either absorbed back into the body or passes through in your waste.
I think it is mostly used for cancer (prostate, brain, breast...). I think there are better solutions for other issues such as BPH.
keith42667 ES28567
Posted
ES28567; What is a HIFU procedure? Is it only for prostate cancer?
kenneth1955 ES28567
Posted
Hello my friend
I don't know if you want to ask your doctor but instead of taking Finasteride for the prostate. Try Vasicare I take it for a external sphincter. It is a muscle relaxer. It may help you. It will also relax the bladder neck and it may help with the irritation.
It may be work a try before you go from FLA.
Take careKen
Tim-B ES28567
Posted
Sounds like the proverbial good news/bad news - cancer is under control but the BPH continues to be an issue, but congratulations on taking charge of your health and finding a solution that you wanted.
I considered HIFU 6 odd years ago when I was first diagnosed and it was not yet approved in the US. I ended up going with FLA in Dec 2017. I would like to hear more on your HIFU procedure for my own education. How much of your gland did they target? I had been under the impression earlier that HIFU was either full or hemi-gland. Do you know the size of your gland before/after?
Depending on the size of your prostate, you may want to look into PAE (prostatic arterial embolization). It may be covered by insurance and should not preclude you from any other treatments should they be necessary later.
Good luck in the New Year!
ES28567 Tim-B
Posted
Hi Tim,
I would not consider this a good news/bad news situation as I feel the HIFU procedure did everything I could hope for. It probably even bought me additional time to wait for a new, better procedure to address the median lobe issue. And from taking with Ken...looks like there might be some new options for me.
I’m sure you know from your research that HIFU has been around for years but is still relatively new in the US. I think the clinic I visited had just started 6 months before my procedure was performed. Dr. Scionti was doing HIFU off shore for many years and was involved in getting the FDA approval in the US so I was very confident with him doing my procedure.
In his office, the day before the procedure, we had a very in-depth conversation regarding the objectives. My situation was somewhat unique as HIFU is not very effective on a large median lobe. However, due to the locations of the cancer, HIFU was the perfect solution. So while destroying the cancer, the second objective was to eliminate as much as possible the symptoms caused by my BPH by destroying much of the area that the HIFU could reach but staying away as much as possible from damaging any areas that could potentially cause ED, RE, or incontinence. My original size prior to HIFU was 98cc. I don’t know what the size was after the procedure or what it is now. All I can say is the HIFU was successful in destroying the cancer (per MRI readings) and I would also say 90-95% successful in eliminating my BPH symptoms. I would not even need any further intervention if the median lobe wasn’t causing some irritation issues.
I did consider PAE to take care of the BPH issues (prior or being diagnosed with cancer) but they were having mixed results and the results were unfavorable on the median lobe. I will certainly research it again to see if the results are any better on the median lobe. Thanks for your suggestion. Let me know if I can answer any other questions. I want to be an open book to help others.
Tim, how has your FLA affected you? Did you have cancer and are you cancer free or did you just have BPH and did that take care of your issues? Did you have any side effects from the FLA? Would love to hear how you are doing.
Tim-B ES28567
Posted
Glad to hear you are happy with the results and most of your symptoms were addressed.
As for myself- I had a follow-up MRI in October 2018. Both Dr Busch and Dr K saw no evidence remaining of the single lesion that was visible before (3+4). PSA had gone from a high of 2.2 prior to 0.2 after. Prostate volume before was ~28cc and Dr K said he ablated between 50 and 60%, but of course it takes a while for the gland to shrink and absorb that tissue.
My post FLA experience was not as smooth as some. Foley in for 7 days post, removed it myself but could not void - at all. Was prepared and opted to start CIC, which was very easy for me. After 3 weeks Dr K recommended a medication to increase pressure on the bladder to see if that might help, but unfortunately I ended up with a fistula. If I had opted to have the foley reinserted after week 1 instead, this likely would have been avoided.
Anyway, then I had 3 more weeks of foley and upon it's removal recovery began without issue. While it was slow, the past 6 months I have experienced noticeable improvement. I rarely get up at night and when I do its typically due to some other reason. All other metrics (retention, flow, hesitation) - all are better.
So, despite the complication, I am satisfied with the results and would not hesitate to use or recommend Dr K. He is a fine and caring man and physician. He stayed in regular contact with me throughout and after this period.
I had researched every procedure of which I was aware of (focal and whole gland), made several trips to many states, spoke to many doctors and men that had these procedures. During that time, I opted for AS until a tipping point - which came in mid 2017 with upticks in PSA and MRI showing growth of the lesion and a section that both IR's that was likely at least 3+4 (original biopsy 6 years before was 3+3). I chose FLA because I hoped it would address both the PCa and the urinary issues (I believe mine at least were caused by multiple factors not all attributable to BPH).
Time will tell, but as of now - all is very good.