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Posted 12/8/2014 4:59 PM (GMT 0)
I have not been here for a while. Been keeping myself busy and trying to get my head around all the treatment options, but I am still very confused and somewhat concerned about the outcome from the choice that I make.

Here is the latest letter that my uro sent to my doctor.

“History:
Intermediate risk prostate cancer.
Gleason 3+4.
4 cores right posterior, 1 core right mid, 3 cores positive left anterior.
MRI organ confined.
Volume 52c
Prior flow rate study restricted flow with a strained pattern.
Bone scan negative.

It was a pleasure meeting this gentleman following his biopsy. He understands that he has intermediate risk disease and is looking at various treatment options. I think that surgery would be an excellent choice for him given the fact that his flow rate was restricted in a previous study, although this has been repeated and is somewhat improved. In terms of the nerves, I think it would be prudent to spare the nerves on the left side, probably go wider on the right. I have talked to him about the procedure of laparoscopic radical prostatectomy and we have a visiting surgeon Anand Kelkar who carries out these procedures. So far our patients have recovered very well with only a one night stay. There is a risk of incontinence early on with a 5% risk of requiring further intervention in the longer term, erections would require treatment with PDE5 inhibitors and possibly intracavemous injections or pump therapy. There is an excellent chance of avoiding any further treatment, however with a 20% chance of positive margins of which half require further radiotherapy. He is going to take some time to think about things, I think from a clinical point of view there is no rush and he could have active surveillance while he makes up his mind.”

I will lay out my treatment options, along with my thoughts/fears regarding each of them them. I would also like to point out that the cancer is not my biggest fear, but the side effects of my chosen treatment.

1. Surgery. laparoscopic radical prostatectomy.

I have pretty much ruled out surgery, on the grounds that they cant do nerve sparing on the right. In my mind if they cut away the nerves on the right side then there is nothing left to heal, so permanent ED for the rest of my life. Or am I wrong in this assumption?

2. External beam radiation.

This just wont work for me. 7 weeks for 5 days a week would just be to much. It is not just the travelling backwards and forwards, but as the treatment goes on the side effects can kick in. Having to do that alone would make this option unthinkable in my case.

3. LDR Brachtherapy seeds.

This is the treatment that I feel would work best for me. If the cancer had breached the prostate on the right side then the radiation will reach out 3mm from the prostate capsule and hopefully get it. Once again, in my mind at least the nerves would still be there and be able to recover over time. Would you agree with that?

4. HDR Brachtherapy.

Not ruled out as yet. The advantages are that your body is not left radiated after treatment and that with the higher dose of radiation it could reach outside the prostate capsule even further than the LDR treatment. Would I be correct in thinking that? The down side would be the combined HT treatment.

5. HDR Brachtherapy mono (Medical trials)

Another option that sounds interesting. Purely for the reasons that I would not have to deal with the side effects of any HT treatment and as I would be involved in trials I would be monitored more closely and that could be a plus. But that monitoring would carry on for about 5 years, so would mean regular trips to the hospital during that period, but I would still place this treatment as a high possibility.

6. Then there is my own thoughts regarding treatment. Do nothing and enjoy the lifestyle I have now for maybe 4-5 years, maybe longer! Rather than 10+ plus years feeling miserable with the side effects that treatment could bring.

The reason for making this post is to have guys who have had experience of the above treatments leave comments on there experiences good or bad that could help me make my final decision. Any input would be gratefully appreciated at this time.

Thanks guys.
Posted 12/8/2014 5:27 PM (GMT 0)
First thought - you should get some treatment.

Second thought - In your shoes, I'd pick either surgery or LDR brachy. The doctor's note on restricted flow sends my mind to thinking surgery might be a better option because that is more likely to help with flow issues. Brachy/radiation in general doesn't do much to relieve flow issues. The doctor isn't predicted total ED for surgery, but you would need some treatment. Not sure that brachy would 100% safe on that front but it would be better.

Again, you'd be fine with either.

Andrew
Posted 12/8/2014 5:38 PM (GMT 0)
3.
Posted 12/8/2014 5:52 PM (GMT 0)
Caspar, I'm not gonna give an opinion only because I don't have the experience.
But I want to say, whatever you do, go for the long term cure. Life is worth living, dude. And where there's life there's hope. Including the hope of new less toxic therapies coming down the pike that will help you maintain quality of life even if you need further treatment. Which hopefully you won't.
Posted 12/8/2014 6:14 PM (GMT 0)
No matter what treatment option you go with, there will always be that nagging voice in your head wondering if you chose the correct one. With a high likely hood that the cancer is confined to the prostate, surgery offers a high probability of 1 and done. But as you said it's the side effects that are the biggest concern. With surgery, side effects are at their worst following surgery, then it's a matter of how much functionality will be restored. With radiation, its the other way around, minimal side effects immediately with deteriorating functionality over time.

My decision was based on my feeling of wanting this s#!+ out of my body. That said, there is no one solution that is right for everyone. Prioritize the things that are important to you and discuss these with your Doctor, Urologist, Oncologist, Radiologist,... Once you feel you have enough information to make an informed decision, then you will be ready to do so.

This site provides you a unique perspective and ability to reach out to individuals who have made each of the various decisions and hear the good and bad of each. But in the end you will need to decide what you want to do.

Good luck, and remember no mater which way you decide to go, there are people here to support you and help in anyway they can.
Posted 12/8/2014 7:19 PM (GMT 0)
Thanks very much guys. I am going to let this thread run for a while before responding, because I would really like some input from others experiences regarding treatment.

Yooper. Did you say 3 because you are bias, or from reading my stats and concerns?
Posted 12/8/2014 7:32 PM (GMT 0)
You missed SBRT on your list.
Posted 12/8/2014 7:48 PM (GMT 0)
Casper - am I biased? Yes. But not without IMHO sound reasoning. I look at your stats as presented and then bump that up against my own experience as well as all of the research I did. So then again, biased, yes, but justifiably so. . . .

In the early part of my career I had someone come up to me and say, "Cocky, no - confident, yes, and there is a huge difference." So I'll stick with that.
Posted 12/8/2014 7:49 PM (GMT 0)
My mentor Tall Allen gave you the cliff Notes, SBRT but allow me to expound.

All of the other radiaiton oprions by the time you also do brachy plus the "boost" have the same drawbacks as what you noted in #2, EBRT, 7-9 weeks elapsed time.

That was a big negative for me too. So I chose SBRT which can be done in 5 fractions every other day in a week and a half @ 8 Gy each for a total of 40 Gy versus the other radiaitons typcially are 79 Gy - 81 Gy in total and just take longer to do that in smaller more numerous doses.

So that gave me over a month of my life back as opposed to daily back and forth with fatigue setting in abut week 5. I had no adverse side effect so far but only been since Oct 20th last SBRT fraction.

The one drawback is that so far there are only about 7 years of history that bench marks favorably with IMRT/EBRT etc. My rationale was that this was true in the day for IMRT and even for RALP. no long term history until enough people had undergone the procedure and enough time had passed.

I am G9 so chose to concurrently do Provenge to leverage the abscopal effect

prostate-cancer.org/abscopal-effect/

To qualify for Provenge you would need two PSA increases at least 14 days apart.

For G9's SBRT is only available in LA, NY or Toronto. I would suspect for G7's SBRT or its cousin Cyberknife is available in a lot more places.

You can find out more on Cyberknife.com

Casper, since you are in UK, I am not familiar with what your options of treatments and locales may be.

LupronJim
Posted 12/8/2014 8:54 PM (GMT 0)
Are you having problems with flow? I was having some miserable BPH problems. Flomax had worked great for years. But it was starting to lose effectiveness. That was one of the many reasons I chose surgery.

If flow rate is not really an issue, then you have made some cogent arguments for non-surgical choices.

Mel
Posted 12/8/2014 9:16 PM (GMT 0)
Casper, it sounds like you are doing your homework. Normally I would think that your preferred choice, LDR Brachy, would be a suitable one. But red flags are your urinary issues. Your uro and/or your RO should have determined your "AUA Symptom Score" - see this link: www.prostatechicago.com/forms/aua-symptom-score.pdf

Depending on the RO, a symptom score of 15 or greater may indicate that you are not a good LDR Brachy candidate, This is, the likelihood of urinary issues after brachy is high therefore this option is just asking for trouble. You should discuss this with your doctors.

Re HDR brachy, I'm not sure why you indicate that you would have to deal with the HT treatment in addition -- unless that is being used to decrease the size of your prostate. In that case, it would likely be used with LDR as well. It is my understanding that HT is not required with HDR Brachy - others may chime in on this issue.

Good luck in your decision making.

Jim
Posted 12/8/2014 9:27 PM (GMT 0)
casper, as for your choses, de vin nerve spareing surgery, would be the gold sanderd, will the best results, two days in hosp, then 7 days with cathier, then psa testing every 3 mos then 6mos as long as psa stays up to .04psa, and for ED you should be close to the same as before surgery,, the rest are not without side effects also, but if you have a come back of your PC you can"t have a rad prostate done? key is to find a real good dr to do the surgery, and ask how many he s done,, like 1or 2 a wk
Posted 12/8/2014 10:24 PM (GMT 0)
Casper,
I went the route of RALP. I chose this route because with my high Gleason score, I wanted a full pathology on my prostate. Also, BRT was not an option for me. So my choice was radiation or RALP. With that choice and getting the full pathology, I chose RALP?

I've had full ED since the surgery,but the treatment (Trimix) works great. If you have a supportive partner, I wouldn't let the ED issue drive your decision.
Posted 12/8/2014 11:29 PM (GMT 0)
Following up on something Jim wrote, I know that at UCLA they don't typically use HT with your stats--or combine it with external beam radiation. There may be a different standard protocol in the UK, but it seems odd that HDR monotherapy is only through a clinical trial. And that they have LDR monotherapy, but not HDR.

I do know that sometimes HT is used in conjunction with brachy to shrink the prostate. While HT is not exactly fun, if indeed there's just a short course of HT for the purpose of shrinking the prostate, I think you could power through that pretty easily. Of course, this assumes that you're even interested in HDR brachy.

Based on your comments, it seems that surgery and IMRT are out. If so, then you're making a call between the two types of brachy and SBRT if you add that to your list. I'd think that any would work for you and would give you a chance of tolerable to minimal SEs.
Posted 12/8/2014 11:59 PM (GMT 0)
There are no restrictions on prostate size with HDR brachy or SBRT. Neither has improved outcomes with HT.
Posted 12/9/2014 3:50 PM (GMT 0)
Thanks guys. Lots of food for thought in your posts. However, I am not looking for anybody to guide me from one treatment to another, I think I can manage that myself. The original idea of this thread was to have guys comment on there own treatment choice, why they chose that treatment and there SE experiences both short and long term. I can then hopefully come up with my final decision.

Any more input will be gratefully received and appreciated.

I am now going reply to each and every one of you that has taken the trouble and time to reply. Hopefully I will have that done some time this evening (UK time)

Thanks again guys.
Posted 12/9/2014 8:34 PM (GMT 0)
@ IntheShop. Andrew, If it was not for the fact that I still have a son I honestly think I would not go for treatment. We both went through hell when we lost the family in 2012 and we only have each other now, so I think that I owe it to him and give something a try. For the reasons above I have ruled out surgery, even with the flow rate issue. If the uro is happy to do Brachy with that in mind then I have to trust in him.

@ Pman. Hey there buddy. To be honest you have been of more help than you know. I have gained lots of helpful information from your recent thread. To the point I have almost made up my mind.

@ Reyalsnogard. Thanks for your comment and welcome to Healing Well. I don’t have an issue with getting the cancer out of my body. My major concern is the side effects of treatment. By age 80 around 80% of men will have some level of PC anyway and most not even know it. Once I have decided on my treatment I will definatly not look back, so no “nagging voice” what if's for me.

@ Tall Allen. Thanks for taking the time to reply. I have herd a lot about you on the forum. They say that you are a legend here LoL SBRT was not on the table of options for me. My hospital does not do it. My consultant said if I wanted that he could refer me to a hospital that was about 100 miles drive away, I honestly don’t fancy a drive like that. Then of course for any follow up appointments I would have to do the 200 mile round trip every time. The HDR that was offered to me involved HT as well, but I did not ask why. The uro guy would of started me on HT the same day if I wanted to go with HDR.

@ A Yooper. Hey Yooper, thanks for dropping by. It looks like our stats are very much alike. If I go with the LDR then I hope my results turn out the same. You mention in your stats “no issues, NO SE's” Are you saying that you had nothing whatsoever?

@ LupronJim. Thanks for your inpute. Sadly our health care system is in a state of collapse right now. Even if it was not we are still far behind with our treatment options, all down to cost they say!
You and some of Europe have had Proton Beam Therapy for years now, we are not going to get it until 2017. SBRT is not widely available here, so having to travel long distances for that treatment would be the only option. If my cancer hospital done SBRT it would defiantly be my first choice. America leads and the UK follow I am afraid.

@ Golfnooch. Yes, I have most certainly been doing my homework, mostly on this great forum. I am not looking for people to give me there opinion on my six treatment options. What I would like is for guys to share there experiences of those options. Then I can decide for myself. But you are correct in saying that each of our priorities is different from the other. For me it is not having incontinence or ED. A big ask when those things can come with all treatments. On the up side Yooper managed to come out with a clean score card in that respect.

@ Compiler. Hey there Mel. Lets just say I am not able to pee as I used to. When I was a teen I remember standing at the toilet door and hitting the pan from there, until my mother caught me LoL. I cant remember when my flow decreased, probably it has happened over a very long period, but I cant say that it has been a problem for me or something I had noticed until now. Three years ago I found that I was up for a pee 4-5 times a night, it was destroying my sleep pattern so went to my doctor, she put me on Tamsulosin and now I often go through the whole night without having to get up. I think that I have very good bladder control, if I am out for the day I can often go for 12 hours without wanting a pee and have never felt that I am not empty when I do, but yes, my flow is nowhere as good as it used to be, but I would still call it a flow not a trickle.

@ Tudpock18. Jim, that comment in the letter from my uro guy was made as the result of a test I took during my first visit back in June. I had a pee just before leaving the house about 90 minutes earlier and did not feel the need to go again, so it was a strain for me. If I had been told in advance about the test I would not of had a pee before seeing him, I just cant pee on demand like that. I saw him first at my group meeting last month, he then passed my paperwork onto the Brachy uro guy who picked up on the flow thing straight away. He had me go off and drink as much fluids as I could then come back for another flow test. With the result of that flow test he conformed I would be ok for LDR. My reply to Tall Allen explains about the HDR-HT treatment. I honestly cant remember his reasons for using HT as well, but it was definitely part of that treatment. As for the HDR Mono treatment (trials), he gave me medical paperwork explaining this, but to be honest I found it far too technical for me. If you are interested here are a couple of links you could check out.

UK HDR single dose monotherapy protocol v2.0 Aug 2013 by Peter Hoskin

https://www.prostatebrachytherapy.org.uk/presentations/2013_presentations/Peter-Hoskin.pdf

http://www.slideshare.net/jackinlawrence/21-estro-prostate-hdr-selection


@ Kenny123. Once again, with our dysfunctional health care system Robotic Prostatectomy (da Vinci Prostatectomy) is not widely available here in the free health care sector and not in my area that I know of. I would have to travel out of area for this treatment, something I don’t really want to do. Then of course with all follow up appointments I would have to go back to the same hospital Ughhhh!

@ Turner 2. As I have said, surgery is not an option for me. I feel that one of the radiation treatments will offer me a much better outcome with regards to side effects. Sadly I no longer have a partner to support me with any of this. I lost my dear wife of 30 years almost 12 years ago. I am not saying I want to get into another relationship, but I would rather have the choice and not have it taken from me with the swish of a surgeons blade. I know there is more to a relationship than sex, but when meeting with a new partner it would be nice to have all options on the table, rather than struggling with pills and a pump. I think that could put some women off getting too serious...........

@ Michael_T. I read a lot of your posts in the forum and like your style. Thanks very much for your input. What I have already said above covers your comment. You could also check out the two links I left for Tudpock18. I honestly cant remember why they use the HT in combination with HDR. There was a lot going on that day when seeing all the different doctors. As soon as I herd the word HT I pretty much blanked that option out. For me it would be hard enough dealing with the side effects of treatment, without the added problems of HT.
Posted 12/9/2014 9:29 PM (GMT 0)
"@ A Yooper. Hey Yooper, thanks for dropping by. It looks like our stats are very much alike. If I go with the LDR then I hope my results turn out the same. You mention in your stats “no issues, NO SE's” Are you saying that you had nothing whatsoever?"

Yep, no SE's before or after treatment. Caveat to that would be some increased frequency for the first several weeks after implant, no urgency, burning or anything else, just frequency. I have to also add however that I drink a gallon of water a day, plus POM, green tea and my one treat of 1 can of Diet Dew that pushes that as well! The other point is my ejaculate fluid is <1/4th of what it was pre-treatment. I consider neither of those "SE's."
Posted 12/9/2014 9:57 PM (GMT 0)
Yooper. I will buy into that. I don't see either of those things as a problem either. Although you drink far more than I do and I hate water. Fish pee in it tongue
Posted 12/9/2014 10:46 PM (GMT 0)
Casper555,

Another important consideration: Gleason scores are not necessarily set in stone. There are plenty of men on this Board, including me, who saw their Gleason score raised upon post surgery pathology. As you report, your reported Gleason 7 already puts you at "intermediate risk." Considering what this disease can do, I would suggest that you take another look at the importance of the Gleason as you make your treatment decision. Best wishes!

Newspaper Lover
Age 71
11/09 DaVinci surgery upstate NY; nerve bundle taken; clean margins, clean seminal vessels, no incontinence, alas no erections.
06/11 PSA re-emerged.
Gleason 8
Time to recurrence 18 months
Three month doubling time (summer 2011).
PSA rose from .07 on 06/11 to .17 on 11/11.
09/11 hernia surgery to repair hernia resulting from the DaVinci.
10/11 Moved management of my case to Memorial Sloan-Kettering in New York City.
12/11 Started hormones (Lupron/Casodex).
02/12 Began radiation (SRT), including pelvic lymph. 40 sessions.
03/12 Last Lupron shot.
04/12 Finished SRT.
07/12 PSA and testosterone "undetectable."
01/13 PSA “undetectable”; testosterone (T) level at 452 ng/dl.
07/13 PSA “undetectable”; testosterone (T) level at 444 ng/dl.
01/14 PSA “undetectable”; testosterone (T) level at 435 ng/dl.
06/14 PSA “undetectable”; testosterone (T) level at 444 ng/dl.
Have received no treatment since spring of 2012.
Started “Paleo diet” in 2013. Only eat what I plausibly could have fished, hunted, or gathered 40,000 years ago (but not with current skill set). No processed food of any kind. No sugars. No starch. Feel physically strong and best in years on this diet.


Posted 12/10/2014 10:09 AM (GMT 0)

NewspaperLover said...
Casper555,

Another important consideration: Gleason scores are not necessarily set in stone. There are plenty of men on this Board, including me, who saw their Gleason score raised upon post surgery pathology. As you report, your reported Gleason 7 already puts you at "intermediate risk." Considering what this disease can do, I would suggest that you take another look at the importance of the Gleason as you make your treatment decision. Best wishes!

Newspaper Lover
Age 71
11/09 DaVinci surgery upstate NY; nerve bundle taken; clean margins, clean seminal vessels, no incontinence, alas no erections.
06/11 PSA re-emerged.
Gleason 8
Time to recurrence 18 months
Three month doubling time (summer 2011).
PSA rose from .07 on 06/11 to .17 on 11/11.
09/11 hernia surgery to repair hernia resulting from the DaVinci.
10/11 Moved management of my case to Memorial Sloan-Kettering in New York City.
12/11 Started hormones (Lupron/Casodex).
02/12 Began radiation (SRT), including pelvic lymph. 40 sessions.
03/12 Last Lupron shot.
04/12 Finished SRT.
07/12 PSA and testosterone "undetectable."
01/13 PSA “undetectable”; testosterone (T) level at 452 ng/dl.
07/13 PSA “undetectable”; testosterone (T) level at 444 ng/dl.
01/14 PSA “undetectable”; testosterone (T) level at 435 ng/dl.
06/14 PSA “undetectable”; testosterone (T) level at 444 ng/dl.
Have received no treatment since spring of 2012.
Started “Paleo diet” in 2013. Only eat what I plausibly could have fished, hunted, or gathered 40,000 years ago (but not with current skill set). No processed food of any kind. No sugars. No starch. Feel physically strong and best in years on this diet.



I do appreciate the importance of Gleason scores, but I am not really one of those "what if" guys and risk surgery to find something that may not be there. Over here getting a second read on slides is not a simple matter, I have tried. That said I found out that the guy that done my slides ONLY does prostate readings and in fact does second reads for a lot of hospitals in the SE UK. So I am pretty much comfortable that he got it correct.

I was hoping that there would be a little more feedback regarding treatment experiences when I woke up this morning!..............Come on guys..........Please!
Posted 12/10/2014 12:37 PM (GMT 0)
Hi Casper,

Well as you know Jeff had LDR coming up for 4 years ago here in the UK and the procedure and post implant were pretty much as described on the can.

Life for us 4 years on continues as normal, only 2 things we could possibly call SE’s

1. Jeff now takes a tamsulosin every other day to maintain his good flow – would his pee have slowed anyway as part of his natural ageing process? (he will be 66 next week). Could be, or could be down to the LDR – either way no biggie for him.

2. Ejaculate varies between 50% pre treatment and occasionally to almost zero – again no biggie for us.

Whatever treatment you do decide on, my advice if you can is to book in some annual leave following the procedure to give yourself time to rest and regroup. Jeff does do a very physical job (plasterer) and it was something suggested by his Brachytherapist.

All the best to you.
Susan
x
Posted 12/10/2014 1:28 PM (GMT 0)

Casper555 said...
The original idea of this thread was to have guys comment on there own treatment choice, why they chose that treatment and there SE experiences both short and long term. I can then hopefully come up with my final decision.

Any more input will be gratefully received and appreciated.

Hi Casper:

To answer your latest question specifically:

1. I chose LDR Brachy because it would cure me as well as any other treatment (including surgery), was minimally invasive and offered the promise of less onerous side effects.

2. My short term SE's were some urgency and frequency which were well controlled with Flomax and were gone within 3 months.

3. My only long term SE is reduced ejaculate; I have maybe 20% left at this point. Other than that, no SE's. Sex life and urinary functions are the same as pre-treatment.

If you want a more long winded version, feel free to copy and paste my "journey" in my signature.

Good luck as you go forward,

Jim
Posted 12/10/2014 3:09 PM (GMT 0)
Ahhh, sorry we're letting you down! Here are some specifics for me, although keep in mind I had HDR brachy + IMRT so attributing anything to any one treatment might be a reach. (I also had HT, just for kicks...)

1) I chose the combo since 1) surgery was likely to be unsuccessful and 2) I wanted to treat an aggressive cancer aggressively. Brachy to whack the cells from the inside and IMRT from the outside and to include the LNs. HT for clean up everywhere else.

2) I had urgency and some burning following the brachy for a few days--maybe a week at the most. But I leaked a bit for a month or so if I really had to go and was not near a loo. That had just about gotten better when I had my IMRT, which didn't help. It's fine now.

3) Pretty much nothing now in the way of SEs, although I do ejaculate dust. (Well, not literally.) I'd say I pee slightly more than before, maybe 10%, but no big deal. When I do need to go the urge comes on somewhat stronger than before, but again nothing significant.

My case is different than yours, but I'd do the same thing again.
Posted 12/10/2014 3:48 PM (GMT 0)
This great guys thank you. Just the sort of information I was looking for. Keep it coming please.

@ Overthepond. Susan.

@ Tudpock18. Jim.

@ Michael_T

Thanks very much. I have just got home, but will reply to your posts later this evening.

Thank you, Thank you, Thank you. turn
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