Hello! Glad to have found this forum – seems like a lot of very helpful people here. Been doing a lot of reading. I appreciate those that have taken the time to write informative replies, articles, and blogs.
After an mpMRI found a 7mm lesion near the base, I was recently diagnosed with prostate cancer with several positive cores. The local pathologist rated the lesion at 4+3. On a 2nd opinion request, Dr Epstein reduced that to 3+4, but also added cribriform morphology. 59 years old, PSA is 4.7, gland is 62cc, DRE normal, T2A per UR. More notes in my profile.
I’m not sure if I should be considered favorable or unfavorable intermediate risk. Regardless, I am studying for what treatment to choose. Although I like my UR (1,200 RALPs) I am probably going with radiation.
The RO I have seen (has treated 1,500 for PCa) suggests either 8.5 weeks of VMAT with cone beam CT scanning, or 5 weeks of the VMAT with a seed boost. He said he is personally biased towards the seed boost for someone my age looking to live 20+ years, and does not recommend ADT for me. He has a SBRT system but does not use in on PCa at this time (not the “standard of care” in his health system).
I can probably easily get a referral to another cancer center in town that I believe has the Tomotherapy and Cyberknife systems, but as of now I am unaware of their prostate cancer program.
I have mild urinary issues with BPH and understand the seed boost will make that worse for a couple months, but I can get through that. Does radiation eventually help with BPH caused flow issues? Do you guys think I should look at another RO with SBRT or other? What questions do I need to ask to help decide? Of course continence and potency comes into play too.
This is a stressful time.
Thanks
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redonthehead
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SBRT has excellent oncological outcomes with low toxicity. Brachy boost therapy is overkill- higher toxicity than necessary for your risk category. SBRT also minimizes your time in treatment. Read this:
I also had mild BPH. It got a bit worse during the month after treatment, but then got better than baseline. I now pee like a racehorse. SBRT "fixes" healthy prostate cells. My prostate went from 65 cc to 20 cc currently.
Wasn't sure of the best place to add this "reply" - but here it is:
Wife and I visited with another RO. This guy came from Michigan 5 years ago where he was doing mostly brachy and added SBRT when he moved here (Missouri). He proposed SBRT for me at 5 x 7.25 GY, with fiducials and spaceoar. He has done 250 SBRT treatments on prostates via the Cyberknife (iris collimator) machine - about 50 per year. He tracks his patients - only 2 failures out of 250 thus far and which is encouraging buts its still early. Only one stricture. Discussed what he would plan around the penile bulb, urethra, and nearby seminal vesicle but I was trying to understand his heavy accent through a mask and didn't do a good job on note taking. 4-5mm margin around the gland I believe. CT/MRI scans to plan treatment. Gave me the detailed plans on how to handle my diet/bowel/bladder during treatment.
I brought up ADT - he didn't think it was called for but if I wanted a 4 month shot for extra insurance....
Anyway - I am leaning towards going with this. Are there other make or break questions I need to go back with? comments?
4-5 mm seems pretty wide for your risk level. Mine was 2-3 mm with 0 mm on the rectal side (I didn't have SpaceOAR). But the critical thing is if he met all his dose constraints on the dose-volume histogram after the planning is done.
Looking at some literature it seems 3 to 5mm margins were common, but it may have been outdated. I may also get a third RO opinion (2nd with SBRT) 3 hours away.
I asked about 8 Gy per fraction but he thought we should stay at 7.25 due to the mild BPH I already have. Is 5x8 Gy worth pursuing? I'd rather have some urinary issues to get over than have future bio-recurrence. Your blog on optimal dosage made 40 Gy look pretty good.
Had a telehealth call with the head RO at a university based NCI-designated cancer center. He recommended SBRT and said they also use 5 x 7.25 Gy. (36.25). 5mm margin in most areas and 3mm on rectal side. He said there is a national clinical trial comparing SBRT to standard EBRT where they chose 36.25 as the SBRT dosage. So I wonder if I should quit the studying & 3rd opinions and get on with it.
Allen, I am intrigued that your urinary symptoms improved after SBRT. In researching articles on radiation effect on late urinary symptoms, I am seeing reports that with SBRT as a monotherapy, it looks like the best one can hope for, as far as relief from lower urinary tract symptoms LUTS(urine flow, urgency and frequency), is a return to baseline after up to 18 months of periodic worsening of symptoms. I could not see any trials that will report separately by AUASS severity, but I've been told by at least one RO that those with moderate AUASS (8-19), such as mine at 15, will do more poorly with radiation treatment, including SBRT, as far as late term LUTS. I was advised not to consider brachytherapy at all since late term LUTS are apparently even worse than SBRT for someone with my degree of symptoms. My prostate is 35cc, but with a moderate-to-high LUTS, I am not sure how much of a reduction in prostate size after SBRT will help my symptoms. I'm also not sure how much alpha-blockers will improve post-treatment symptoms. I did try Rapaflo and Flomax for awhile years ago when my score was lower, they helped for a few months but not by much afterwards. They also made me dizzy so I gave them up. This is what's holding me back as it seems the only true relief from LUTS may come from surgery which I'm trying to avoid. That is if LUTS are truly caused by the prostate.
Radiation causes inflammation, just as a sunburn does. There is a temporary worsening of symptoms until the inflammation goes away. For me that took about 3 weeks. Others may take longer. Others have no symptoms. There is no predicting. But this is about acute effects ( in the first 3 months).
Some men also have late-term side effects. That means the urinary side effects may return later, usually about a year later. Again, it is almost always a temporary effect. After that, it is very rare to experience other bouts of urinary problems after radiation if one had a monotherapy (SBRT or brachytherapy). Brachy boost therapy has a particularly high rate of late-term urinary side effects - in about 19% of men.
It is true that the worse your urinary symptoms are to start with, the worse they will be after radiation. Orthostatic hypotension (dizziness when you get up too fast) is a temporary side effect. It disappears after a few days.
About 20% of surgery patients have lasting incontinence. There are no curative therapies have have no side effects.
I feel it is always best to get a 2nd opinion. Each provider lives in her/his own world and may tend towards tunnel vision.
Fearing testicular cancer at age 42 I went to a urologist who suggested removing a testicle as part of a biopsy "just in case". Went to a second who gave the same recommendation. Went to a third who said "That's silly, you're fine."
So now at age 75 I have both testicles, no cancer.
I'm not an authority on what treatment to get. I like to think that my ideas about this are more experienced and knowledgeable than the average layman but I am, nevertheless, very much a layman. Take my suggestions as those of a layman.
My first reaction to your posting is that, because of the cribriform nature of the biopsy samples, you should treat the disease as higher risk than Gleason 3+4 and PSA below 5 would otherwise indicate. See for example: pubmed.ncbi.nlm.nih.gov/288... and perhaps search Pubmed for more.
If the brachy boost treatment has a higher success rate than SBRT, I think I'd want the brachy boost approach. The data that Tall_Allen published show much higher rates of late stage toxicity for brachy boost but, as Allen points out, the numbers in the published study are not based on a randomized clinical trial, so it is possible that some bias affected the selections. Even so, the outcome numbers for unfavorable intermediate risk looked to me to be significantly better for brachy boost. We might think of this as trying to balance risking your life vs. risking side effects. But you could beat the cancer and suffer few side effects, or vice versa, with either treatment. All you can do is play the odds and roll the dice.
In addition to treatment type, another important consideration is the knowledge, experience, and commitment to patients of the radiation oncologist. The best ROs are going to have higher rates of success and lower rates of adverse side effects than the the average RO, and maybe much better than the below average RO. My impression is that finding the best RO is not all about finding the most famous one. I believe that you can tell a lot about a doctor by interviewing him. Does he answer your questions or change the subject? Does he speak frankly about things that can go wrong and maybe admit that he's had some of his own treatments go wrong. (I hate it when a doc says "I've never had a patient die of prostate cancer after my treatment." Amazingly, there are some docs and clinics who get very close to saying that.) Can the RO explain what he'll do to find and treat all of the cancer in the prostate, explain how he'll determine if there is cancer outside the gland and what he'll do about it, explain what he'll do to minimize side effects, tell you what follow up treatment he'll perform, explain how the cribriform discovery has influenced his thinking, explain why he does or doesn't want neo-adjuvant ADT and what might cause him to change his mind?
I know that you're going through hell in considering all of this. All I can say about that is that you're obviously doing everything you can to think it through and find the best path, and if your treatment turns out not to be the absolute best it could be, I'm optimistic that it will be damned close. If it doesn't work out for you, it won't be because you didn't do your best. Your PSA indicates that your cancer was detected early. In spite of the cribriform, I think there's a very good chance of success.
I have no expertise in deciding on which treatment is best so I am making no recommendations; however, I would suggest getting multiple 'second' opinions from other RO. It is free (at least it was for me) and it is not like you have to decide tomorrow. You will learn a lot and be in a better position to make a decision you feel comfortable about.
For my initial treatment I only spoke with one surgeon and one RO beyond my urologist before I decided on surgery. I wish I had found this forum before I made my decision. Some of the people here are amazingly knowledgeable (like TA and Alan) and willing to help you make the best decision based on what the science says, not just anecdotal evidence which is by definition hit or miss depending on who you talk to.
Thank you gentlemen for the thoughtful replies. I am in process of getting in to see another RO and UR in another health system. Since I am nearly at the out of pocket max already - bring it on! (may even get a knee replaced this fall...)
Yes, another UR as I want to hear his thoughts on both RT and RP. RP is not completely off the table yet.....unless you guys are adamant. I'm not afraid of surgery itself - just incontinence and impotence. My current UR claimed 95% continence and 70-75% potent IF no ED beforehand. I don't know if I believe that.
I agree with Tall Allen. I am 77 years old and also had a 8 mm lesion. Gleason 3+4 in only two needles. Size was 26 cc. If there had been an RO with plenty of experience using SBRT I also would have chosen that route. Unfortunately there was not but there was someone with enormous experience using high dose brachytherapy. So I chose that route. I just finished my second treatment as it normally comes in two treatments. SBRT I understand is much less invasive and has similar results.
At age 73 I had Gleason 7 (3+4), intermediate favorable risk that I learned about after going to a urologist for urinary problems from and enlarged prostate. I decided on 28 sessions of IMRT and six months ADT. I am now fully functional sexually at 6 months after treatment, but am wondering about how this hormone recovery works as there are days I can hardly keep it in my pants and other days feel like ADT castrate days.
I have no idea how BT would have affected the outcome.
Take a look at numbers on post surgery potency elsewhere. Maybe TA or Allen have a good resource. I am very much uncomfortable with the high recovery numbers you were given, but I intentionally dodged the bullet on that one, have put it in the past and so don't have numbers at hand.
I do think it was closer to 50% to 60% recovery after the second year. This assumes the man is diligent in producing frequent erections to maintain erectile tissue health, either natural testosterone driven nocturnal erections or otherwise.
One issue is that recovery figures often include men using ED meds or injections. The meds and injections for many men are effective for a limited length of time. Numbers including ED meds would not be on for me. Double check with your urologist as to where the numbers come from.
I know that radiation CAN cause ED after a couple of years due to premature aging of the blood vessels delivering blood to the penis. My OR gave me a 30% chance of becoming impotent. For the most part medical providers assume ADT will cause ED (it doesn't) and I don't know whether that figured into the calculations.
Dr. Mark Scholz comments that if a man is potent 2 years after radiation he is out of the woods and will likely only experience normal loss through aging. I am hoping he is right. Six months and counting.
Julieshusband - you noted you had urinary problems from BPH prior to your IMRT treatment. How is your flow now? Just interested in others experience of flow after RT. I know a short term issues are common, but wonder if many see an improvement long term.
Thought I would update this thread for any future guys. I am now a month out from having SBRT. Laid out reasoning with the RO that I wanted a bit more that 36.25Gy and he agreed to 7.5 per fraction for 37.5GY total. It was really easy. Five trips in at 7:30 and I was back at the office by 9 AM. Did have to stop the treatment a couple times to pee. Some tiredness in the afternoons and feeling "off" and hot. I had some stinging with urination and some reduced flow - seemed to vary quite a bit throughout the day. Ejaculation the first time had me gritting my teeth with burning inside. Bowel movements were not an issue however smaller and more frequent - perhaps 5-6 times a day. Now things are just about back to normal. I took Aleve for four weeks and am on a low dose Cialis for preventative. We'll see how side effects go in the future. Hopefully I am in the 91% that SBRT cures their PCa. I urge others to consider it for local PCa. Feel free to ask any questions
Yes, I has Spaceoar put in at the same time as the four gold fiducials which the Cyberknife machine used to track my prostate. Under general anesthesia so no pain. local soreness for a few days, and a "full" feeling down there while sitting for a week or more.
A week after that I went in for a CT Simulation and an MRI which the RO and dosimetrist used to plan the treatment. Including 4-5mm margins outside of the prostate if I understood correctly.
Each morning they would have me void when I first got there then hand me a big glass of water to drink. Goal was to have the bladder mostly full during the treatment. The guys running the machine would get me all set up on the table, then call the RO to come approve the procedure at the monitors outside, then hit the "go" button.
My entire prostate cancer journey was the stress of having one group of doctors adamant about me being intermediate unfavorable and others confident I was intermediate and didn’t need dual treatments. I am 53 so quality of life was a driving force for me but I also didn’t want to undertreat. I ended up going with HDR brachy monotherapy and am feeling confident after tons of research and many meetings with some of the best doctors of the various RT options that I chose the right path. My one piece of advice is become your own advocate and take the reigns. Empower yourself with as much reading as you can bear and meet as many doctors as possible both in and out of your system. The answer will come to you through the process. You will have a gut feeling when you meet the right doctor. The best thing I did I was not be limited to the treatments that were (supposedly) not in my health care system. And in the end, ironically, I found a treatment in my system. I just had to go to another hospital about 400 miles from my house. I would do it all again the same way. Please DM me if yo would like any more details about the various treatments I considered as well as names of doctors I met with.
Another update - PSA prior to SBRT treatment was 4.72. Today, 3 months post treatment it has gone down to 2.98. Was hoping for less than that but at least it heading in the right direction. Seems like I may have read a slower decline was possibly a better sign for long term success -but maybe I misunderstood.
Edit - well after stewing about it couple days I realized I had forgotten all about the rule of no sex before PSA check. I was thinking more about the LDL cholesterol check I was doing at the same time. Anyway the wife had jumped me about 10 hours before the blood was drawn for PSA so perhaps that elevated it some.
I am doing well. No side effects - well maybe the daily 5mg Cialis is masking some ED. My PSA was down to about 2.5 at 9 months - not near as fast as I would like, but at least down. (No ADT)
Thought I would update this. 2.5 years out from SBRT w/o ADT and my PSA is about 1.2. I am doing fine. Hopefully PSA will go on down to ~0.5 as from what I gather a nadir above 1.0 predicts a lower chance the PCa has been cured.
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Likelihood of post-RP radiation? 
Digital rectal exam after radiation to the walnut....
Potency-Sparing Radiation
Treatment decision: LDR brachy at MSK 
