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My consult with RO

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Posted 10/25/2019 1:22 AM (GMT 0)
Hi All,

I had my consult today with my RO. We did discuss different options but given my psa levels and my GS score he recommended Brachytherapy. I am starting the med Proscar tonight as my night visits to the bathroom are every two hours. If I can get my visits down considerably then he suggested we do brachytherapy. If the two hour visits do not improve then he suggests I have a RP. While my cancer is early my RO seems to think there is some problem with my urethra being restricted. My RO said my prostate was close to average size. I did have a prostate mri about six months ago. No obvious problems.

My urologist is a surgeon and we did discuss RP at my last appointment with him. Of course he recommended surgery.

My RO said I could have IMRT if I so desired which is about ten weeks of treatments five days per week.

I would appreciate any advice on these recommendations or any advice really. I started a new thread rather than just add on to my other threads as it makes reading through all of it again burdensome.

Thanks to all
dmo
Posted 10/25/2019 1:57 AM (GMT 0)
Did anyone mention SBRT? This is another external beam radiation modality, but one which only requires 4 or 5 treatments over a 10-14 day span. The radiation beam pattern and dosage is most closely like that of HDR Brachytherapy, so if Brachy was mentioned, I am surprised that SBRT was not. It could be because the RO's you met with do not offer SBRT. Usually only those who can offer a particular treatment will suggest you look into it, and they are also the only ones who can tell you the entire story about a treatment.

Might be worth a look.
Posted 10/25/2019 2:31 AM (GMT 0)
RO's get paid by how many treatments they perform. So 40 treatments is far more profitable than 5 treatments..Paxton brings up a good point. Maybe your RO does not have access to the equipment (LINACS) that can do SBRT so he does not offer it..The combination of Brachy and SBRT can be very effective, perhaps the MOST effective. I would get a second opinion from a better equipped RO and learn all you can about modern, up to date radiation treatments..SBRT is sometimes called "Cyberknife".. Look for an RO that specializes in prostate cancer...
Posted 10/25/2019 3:17 AM (GMT 0)
Todays RO consult had some twists and turns to think about. The dr said because of my trips to the bathroom every two hours there would be a problem with Brachytherapy. Also SBRT would irritate my bladder and urethra and cause even more problems. I was left with the thought that unless my prostate was shrunk or the tissue around my urethra opening made better by the Proscar then the only treatment for me would be RP.

Any suggestions on how to find out what is going on with my frequent bathroom trips? My prostate is not really that large. My prostate mri did not reveal any problems. Does anyone think possibly I should be scoped to see what problems that might reveal or is this just BPH or cancer related? The RO seems to think bladder spasms could be causing all these issues with so frequent urination. For the last year few years my time between bathroom visits seems to be getting smaller and smaller.

I have done so much research only to be thrown off by this new problem. Everything now hinges on getting the frequency down quite a bit.

I also forgot to state in my earlier post my second opinion from JH came back with little change. I am still diagnosed as 3+4=7. Darn the luck on that one!!!

Thanks for the help everyone
dmo

Post Edited (oceanfisher58) : 10/25/2019 5:04:10 AM (GMT-6)

Posted 10/25/2019 11:01 AM (GMT 0)
Scoping might shed some light, as it were. They are right....any of the radiation options that involve inplants would cause swelling and make matters worse. Let's see what the proscar does for a few weeks--and then back to the Uro to figure out what is happening.
Posted 10/25/2019 11:21 AM (GMT 0)
Ocean, if it's bladder spasms causing the frequency then shrinking the prostate is unlikely to improve the issue. However, if it's prostate size it seems to me that he is giving you reasonable advice re preparing for LDR Brachytherapy. He probably had you score yourself on the IPSS http://www.urospec.com/uro/forms/ipss.pdf
A high score on this will indicate that LDR Brachy is probably not a good choice.

However, SBRT has been shown to be an excellent alternative for men who want radiation but already have urinary issues. You have an excellent SBRT team at Georgetown (CyberKnife I believe) and I suggest you consult with them. As we told you on your other thread, there are specialists in the various radiation options so in addition to getting assessments for LDR Brachy and IMRT you need to talk with docs with experience in SBRT and HDR Brachy.

It is admittedly a lot of work and trouble to get this right and a lot of men are not willing to take the time. Don't be one of them...do your homework and legwork....meet with the various specialists and you will ultimately be comfortable with your decision.

Jim
Posted 10/25/2019 11:23 AM (GMT 0)
Again I want to thank everyone who commented on this thread.

Halbert I have read your journey here on HW. Very informative and well written. The Specter of PCa is all around me. It tends to consume all my thoughts as of late. I have another appointment with my urologist in a few weeks and will discuss why I am having such frequent visits to the bathroom given my prostate size and early cancer diagnosis.

I was up most of last night thinking about all this new information. So many decisions and counter decisions when things don't go as planned. I took my first dose of Proscar last night. Funny I don't feel any better. I told my wife this and she laughed saying I see you still have your sense of humor!!!

I really feel I need to take a break and get away from all this for a while. Maybe a short getaway for the two of us would be in order.

Also I am baffled why my signature seems to show up only about half the time when I post. Another of life's great enigmas I guess.

Thank you everyone
dmo
Posted 10/25/2019 12:23 PM (GMT 0)
Ocean - It seems for now that the urologist is the best person to visit for this issue until you get it under control. Sounds like BPH symptoms. And, yes, it is hard to sleep in the early stages of diagnosis. It is also hard to get away from it, even by traveling as you will think about it when driving. I felt most peaceful after I made my treatment decision and prior to the surgery prep. The idle mind is the devil’s workshop so staying busy seems to help the most but I could get lost in thought cutting the grass with music playing through headphones.

I never really thought I had much in the way of urinary symptoms until after I got the catheter out after RALP and I could pee like I had a fire hose. I was continent right away but I woke up every few hours at first since I was scared I would have an accident at night since I was going so easily. Met with the Uro about a week later and he said many men say they go better after surgery. Of course, the problem with surgery is controlling urination post-op which can take some time for many and why an experienced surgeon with a good history is important if you go that way.

I also had radiation and it did aggravate the bladder. Nothing real significant in my case so far but it is not quite the same as before ART, not worse but a little different which I cannot explain.

If you read my signature and some others, you will notice that you have one more opportunity to have your prostate pathology examined after surgery when they have the entire gland to look at. Does not always work in one’s favor as I found out. I am not endorsing surgery but there are pros and cons to every treatment scheme and existing urinary issues are a consideration with treatment choices. Enjoy your getaway.
Posted 10/25/2019 1:49 PM (GMT 0)
Simple questions.


Does the RO you met perform SBRT for PCa? If not, go see one that does and let that specialist make the assessment.

Does the RO you met perform High Dose Rate brachytherapy? If not, then go meet with one who does for a specific assessment.

HDR brachytherapy has improvements over seeds and may be beneficial to you just as SBRT has improvements over traditional EBRT. But you have to go to the specific practitioner/specialist for their specific assessment.

Don’t let a non-practitioner of a procedure speak for a practitioner. You only get one shot at the initial treatment. Do proper research. By now you could have seen several different practitioners rather than just two.

You sound uncommitted to either you have seen as the absolute best to use. Get some additional assessments by other treatment specialists so you can gain the necessary confidence or you will forever second guess and potentially regret a treatment choice.
Posted 10/25/2019 1:58 PM (GMT 0)
Ocean,
I think it can be a complicated situation. I had significant flow issues prior to treatment. The volume of cancer in my prostate was high, so the Uro predicted positive margins with RP. The RO was reluctant to do any type RT as primary treatment because she was concerned it would worsen my urinary issues. The plan then became RP followed by ART.

Post RP my flow was spectacular, with reduced frequency. Following the ART my flow was still good, but my frequency went back to 4x per night and many times per day. This was explained to me as a result of hardening of my bladder from the RT.
I found this to be very disappointing, because one reason I was accepting of surgery is because I thought at least would pee and sleep normally again.

Surgery could be a good choice for you, but be mindful of the possible effects if follow-up RT is required.
Posted 10/25/2019 2:54 PM (GMT 0)
Hello everyone,

I am very methodical in my approach to my cancer treatment decisions. While it is true I have only met with two specialist so far and have more questions now than answers, I also realize I have time to make appointments and see more drs who specialize in these differing procedures. I will get there and I do appreciate all the advice I have be given thus far.

Please keep in mind this is not the only thing going on in my life right now. I have serious spine problems and am seeing a neurosurgeon to figure out how best to treat my degenerative disc disease. I have already had a two level cervical fusion and am looking at another two levels which now need fusing. Not only cervical but lumbar discs are herniating causing much pain. I am in pain management also. I am receiving injections and nerve ablation procedures to get me through till I can figure out my cancer situation. While I don't want to sound as if my life is harder than anyone else's here I am dealing with a lot right now. My medical history is complicated with issues that my drs have to coordinate treatments for. I have osteoporosis so this also needs to be taken into consideration as some meds cause my bones to become even more brittle. I have spent the last five years learning everything I can about fusions and ADR surgeries. Also deciding weather an anterior or posterior approach for surgery is best for my treatment. It is so incredibly hard to research and make cancer decisions when you are in pain everyday.

Again I thank everyone for their interest and advice. I listen and do much research till my wife tells me to get off the internet as I am making myself crazy and sick from the stress of it all.

I plan on calling to get consultations for SBRT and HDR Brachytherapy as soon as possible. Right now I am heading to pain management to get yet another injection for a nerve block to see if ablation will buy me some time.

dmo

Post Edited (oceanfisher58) : 10/25/2019 12:10:12 PM (GMT-6)

Posted 10/25/2019 3:12 PM (GMT 0)
dmo…..

It can happen. I consulted 15 or 20 doctors. The more I consulted, the more confused I got. Taking a break is sometimes required. Then....

….make a decision and go with it.

Good luck

…..fwiw....I also had flow problems from BPH. Was put on some sort of stuff that made me go better. But, it was one of the things that tilted me toward surgery. (Not saying you should, and sometime I wonder if I made the right choice....your call)

But, about a year and a half ago, I began going to the bathroom a lot. "we're talkin' couldn't get any sleep at all. up every 20 minutes to pee. This lasted about 6 mos. My uro didn't seem concerned and it resolved on it's own. I say that to say this....It's quite possible no one will know the reason for your bathroom habits. they didn't mine.
Posted 10/25/2019 6:11 PM (GMT 0)
This is not a joke:
At my last visit, my RO told me that it is normal for a sixty-year old man to go twice during the night. At seventy, three times and at eighty (you can do the math).
Posted 10/27/2019 12:31 PM (GMT 0)
My experience echoes that of Mattam. After RP, things were good from a urinary standpoint. Fully dry after 9 months or so. Then I had ART and I've been experiencing leaks ever since. With multiple therapies you get multiple side effects.
Posted 10/27/2019 12:54 PM (GMT 0)
Sailor that's interesting. Did the RO mention the cause of going 2x a night at 60?
Posted 10/27/2019 9:11 PM (GMT 0)
Buddy, I would guess that most men with whole and functioning prostates develop BPH to some degree--which leads directly to the need to get up and pee at night.
Posted 10/27/2019 9:32 PM (GMT 0)

Buddy Blank said...
Sailor that's interesting. Did the RO mention the cause of going 2x a night at 60?


Yes, he did.
He said that our bladders were 'designed' in a time when we were chasing mammoths. In those days, few lived beyond forty years or so.
Posted 10/28/2019 11:26 AM (GMT 0)
Interesting.
Posted 10/29/2019 10:23 AM (GMT 0)
I opted for surgery mainly because of my enlarged prostate.
It was pretty large, about 100 cc,. but it did not give me so much trouble as it could be expected. Just I couple of extra wake ups in the night, thin flow and some urgency when walking in cold weather.
Anyway, the ROs I visited warned me that I would need some treatment for this before or after radiation (HDBT or SBRT) but I wanted a diligent enough single primary treatment. Of course surgery has its own problems. Actually, I decided to follow the path I was fearing the most.
Now, many of my "not so bad" old BHP annoyances have disappeared, though I still go to the bartroom once in the night. I guess my bladder has been somehow reduced since a third lobe of my prostate was protuding through it. And incontenance was a problem only for a couple of months (I was really worry about it before surgery). Although I know this may change, I am glad that I am currently free of major urinary issues
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