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Posted 1/26/2015 7:35 AM (GMT -5)

VinceC said...
the surgeon I went to last week who is highly regarded said not to get the seeds.

Vince, the key word in that phrase is "surgeon". I'm sure he is a fine guy but if you really have any interest in LDR Brachy, HDR Brachy or SBRT I suggest that you talk with specialists in EACH on those areas. A surgeon or "generalist" RO likely does not have the insight as does a doc who specializes in the procedure. That way you get it from the horse's mouth and can do your own assessment rather than taking anyone's word for it.

Jim
Posted 1/26/2015 8:41 AM (GMT -5)
Hello Vince, and albeit a bit late I'll also welcome you to our place. As you've come to see there's a ton of help out here - input, experience, knowledge and so on. Rather than comment on anyone else's input I'll simply add my own.

When I was DX'd it really tripped me up - I've always focused on a healthy lifestyle, you know the cardio, weight training, sup's and watching what I eat. So then I hear the big "C" word. Once I got through all of the stages - denial, anger, bargaining, depression and acceptance I focused on what was important for me. Cure the cancer - absolutely, but I've got to tell you that I also wasn't willing to give up one iota of my quality of life. You may have come across the phrase "the new normal" - well, not for me. . . .

In your case with your PCa stats you have a very high probability of being cured no matter what treatment you decide upon, so then FWIW I would suggest you also pay close attention to potential side effects.

I did (and still do) a significant amount of research on the beast itself as well as the various treatment modalities out there. I had made the decision early on that no matter where in the world I had to go to be treated with the best option, by the best practitioner.

So then based on all of my research it became clear that for me, with my PCa stats, LDR Brachytherapy had equal to or better cure rates, and better results in terms of side effects. Going beyond the statistics is also important - specifically the practitioner that will be performing the treatment - the archer being as important as the arrow if you will. The guy I chose had done some 18,000 implants, but what was more important were his results. I would tell you that as you continue on the path of making your own decision, be sure to ask what each professional's personal statistics are - for cure, and again for side effects/quality of life. And be sure to press for the details - i.e. "continent" to me meant just that, no issues, while to others it may mean "only one pad per day" or "only when straining" - that new normal thing again. Same goes for ED - with or without drugs, injections, implants. . .

I'm sure you're in a bit of a brain fog right now as you look into all of this - I called my moment in time "paralysis by analysis" - but this too shall pass! Stay focused on the facts, slow down as there is no reason to hurry. As part of my journey I have accumulated a large amount of statistics, reports, and studies that I'd be happy to share with you. If interested send an e-mail my way - just click the envelope in the top right corner here, under "A Yooper."

Best to you Vince.
Posted 1/26/2015 8:30 PM (GMT -5)
Thank you to everyone I have not noted yet! I have read all the new posts and will reread them in great detail. A crazy day in the NE today. While not in the eye of the monster storm, had flights canceled for a business trip, shoveling, etc.
Trying for a 6 AM flights tomorrow. Will take 3 flights to get to FL for meetings. We will see. If make it a couple of long days and back on mainly by Friday.
SO many of you did the seeds. I somehow had discounted that in my mind and as I have said twice the surgeon I went to last week said not to do them. And I did not ask any follow-up. I now will and will look to visit a major doctor who does them?
And recommendations in NY State? Preferably not NYC, but will not rule out. Love the city, but just so many obstacles to go for a doctor appointment.
Again, THANK YOU!
Posted 1/27/2015 10:06 AM (GMT -5)
Vince, Halbert
You and guys mentioned GFMPH NY. Actually, I've been the host for the past 6 years. Here are the minutes for the last one in Rochester 4 months ago: Minutes. We had about 50 people for the long weekend - many stayed for extra days - a few for weeks! Everyone was smiling! (Even my wife - who is a Saint!)
Come on over if you are in the area. We can discuss and compare notes about our Dr. Double J DRE experiences.

Jeff
Posted 1/31/2015 9:30 PM (GMT -5)
Jeff,

Thanks for the response. How do I stay in touch with the group?
Posted 1/31/2015 10:36 PM (GMT -5)
Jeff, WOW@ the minutes.
Sounds like a very organized purposeful event, not just a bunch of folks getting together.
Posted 1/31/2015 10:38 PM (GMT -5)

VinceC said...
Jeff,

Thanks for the response. How do I stay in touch with the group?

Vince, its really simple, just stick around here , best way to stay in touch.
Posted 2/1/2015 12:26 AM (GMT -5)
Vince,

I am the less-active of the moderators these days (lots of crisis events the last few weeks in my life).

You've seen a lot of very good comments.

I would comment on the "Surgeon doesn't think seeds are right" first. You need to discuss each treatment with an expert in the field. I wanted seeds, but was told by one of the major centers that I did not qualify, and insurance would not pay for Proton RT. So my choices were limited.

You may have to face travel or hospitals in the big apple if you want the best treatment available in the NY area. This is not a cancer that any doc can treat well. You have to go to the best to have the best results. You are trying to deal with years of your life. A few months of chaos may be the price.

But the idea that there is a "right" choice can be dumped early. Because it is so hard to precisely identify the extent of PCa, there is a certain risk that no choice is the "right" one. You just have to weigh the risks / benefits of each, pick one, and live with the results.

I would also say that you can not refuse to accept the "new normal". There will be one. For some it is not very different, for others, life changes completely. But there will be changes.

And last, the comments about focusing on your general health are well-intended. My doc reminds me often that if I want to see if I'll die of PCa, I have to not drop dead of a heart attack first.

Welcome to HW. Maybe I'll see you at GFMPH.
Posted 2/1/2015 4:50 PM (GMT -5)
Vince, the key word in that phrase is "surgeon". I'm sure he is a fine guy but if you really have any interest in LDR Brachy, HDR Brachy or SBRT I suggest that you talk with specialists in EACH on those areas.
I agree 100% with Tud. I would NEVER let a surgeon tell me that I was not a candidate for anything other than surgery. That is why my first uro and I parted ways. There are lots of satisfied brachy guys on here. You will do yourself a disservice if you do not at least check it out with an RO.
Best to you.
Posted 2/2/2015 9:41 AM (GMT -5)
142 "I would also say that you can not refuse to accept the "new normal". There will be one. For some it is not very different, for others, life changes completely. But there will be changes."

I've got to respectfully disagree. . . . The only "change" I have in my life post PCa/treatment is less fluid on ejaculation. I guess if we were to take your comment "But there will be changes" literally. . . . but for me I can say clearly that I do not have a "new normal" - hate that phrase and what it implies and really struggle to understand why some men (low risk) are perfectly acceptable to that.

Caveat here - I do however understand from the perspective of those that are intermediate or advanced and having to deal with what they do, so please guys no misunderstanding here. . . . I'm only trying to point out that not every low risk man who is contemplating treatment should feel that there will be changes that result in that new normal.
Posted 2/2/2015 10:36 PM (GMT -5)
All,

I go for the CT and bone scan early tomorrow. Will post those results when informed.

The one big thing I could currently use help on is further resources (books, web sites, articles, etc.) that heavily focus on the brachy therapy. I have read the Dr. Walsh book already.

Thanks to a LOT of help from A Yooper / Jeff (Thank You Again) I will be working on an appointment with Dr. Zelefsky at MSK in NYC.

Jeff,
Thanks for the "New Normal" discussion and wisdom. Really wish they did not use that. Have greatly struggled with it since told.

GOP,
Yes, you guys have taught me that (surgeon will say surgery). Have been to two and they both did. That is why now want to do much more reading on brachy and see Dr. Zelefsky.

142,
Thank you for All the comments and wisdom. And yes, if a candidate and decide on brachy, pretty sure MSK it is.

Pratoman.
I will keep looking for GFMPH NY posts. And yes, the minutes sounded like very well organized and fun.

Dam, I still wish I was talking to you all in some other forum. Like about wine, big into wine here! :)
But since I have to, you all Really need to understand how much each of you have and are helping. Very sincerely! You have no idea. Thanks!!!

PS, I live near and work PT for a winery in Finger Lakes, NY wine country. If I can ever help with any travel plans, winery suggestions, etc. for anyone visiting, it would be my honor!
See... I would MUCH prefer talking about wine!!
Posted 2/2/2015 11:28 PM (GMT -5)
Vince.. Just completed a 2 consecutive day HDR Brachy mono therapy treatment in Chicago w Dr Santosh Yajnik. He was trained at MSK and follows their protocol. . If you are reviewing HDR Brachy mono treatment I would be happy to provide any insight that I can. I have a few studies and reports etc on HDR Brachy which I can send u links to.

Again this is HDR and not LDR. There are many others who can provide excellent LDR insight.

Best to u
Posted 2/3/2015 7:47 PM (GMT -5)
BenSam,

First wish you much success with your treatment.
Yes, I would very much like to hear what made you pick this, how you do and get any reports you have. My email should show in my profile.

Thank You!!!
Posted 2/3/2015 8:50 PM (GMT -5)
Will send you a long email with my rationale and some additional info.

MS
Posted 2/4/2015 8:06 AM (GMT -5)
Thank You!
Posted 2/10/2015 10:58 PM (GMT -5)
All,

With major changes to job and almost daily snow storms on the Northeast just not a second in the last week or so.
I did get the results of my CT and bone scan a day ago. The bone scan is negative. Super!.
The CT scan did leave some questions about bone spots, but they say the negative bone scan overrides that. They also found bad arthritis, which I knew prior.
They also found a hernia, which I knew nothing about. So possible surgery on that Yuck!
Had one on the other side many years ago.
Did go back for the second time tonight to the one cancer support group I liked. Only one other person and me, but a great guy.
I did ask the Rochester surgeon's assistant why they said do not do the seeds. She said they mainly referring to LDR and that the cure rate was not as good as surgery. Still scared to death of the surgery and while not fully eliminated, probably close.
My next steps are taking to local radiologist an surgeon about HDR. Then hopefully getting an appointment with Dr. Zelefsky at MSK.
Is the external beam radiation also used with HDR?
If so, who makes that decision?

Also, the moderator of the cancer support group tonight suggested looking at Proton Therapy. I know it is new and it just a few places in the US. I thought I had read you just had a few treatments doing that. But read something tonight that says 8 weeks. Obviously could not live somewhere for 8 weeks.
Any insight on this also?

Thanks for the continued help.
Posted 2/11/2015 12:18 AM (GMT -5)
A few comments-

re the surgeon's assistant:
Take what a specialist in one technique says about another with a BIG grain of salt. You really shouldn't expect them to know. LDR for your risk level has as good or better results IF done by a great specialist (the same could be said about surgery). Zelefsky would be that specialist. MSKCC does HDR brachy as well. I highly doubt he will recommend EBRT with it with a GS3+4.

Proton therapy:
No better than IMRT but costs more - takes the same amount of time. IMRT is no better than SBRT but costs more and takes 6 weeks longer. While you're in NYC talking to Zelefsky, I recommend you talk to Allan Katz about SBRT too (see link in my signature). SBRT is the therapy you're thinking of that is only 5 treatments.

Bone scans -
Good example of why favorable risk guys should not have them. Now you have to rule out stuff that should never have come up. Most hernias do not need surgery. However, prostatectomies may increase hernias.

- Allen
Posted 2/11/2015 8:10 AM (GMT -5)
Hey there Vince, good to hear from you again and sounds like you got some good news. Once again I find myself simply pointing to what Tall Allen has posted and will 2nd all of that - particularly the part about "I did ask the Rochester surgeon's assistant why they said do not do the seeds. She said they mainly referring to LDR and that the cure rate was not as good as surgery." Simply NOT the case anymore.

Hang in there, keep doing your due diligence. I really believe an appointment with Zelefsky will be incredibly enlightening and helpful. . . .
Posted 2/11/2015 9:06 AM (GMT -5)
, I saw Dr. Gewanter, also with Memorial , he is Chief of rad oncology at one of their suburban locations and works with Zelefsky.

He clearly stated that localized PC, the chance of cure is the same for the surgery and LDR.
Posted 2/11/2015 7:49 PM (GMT -5)
Vince,
I am a little late to the party, I see. I haven't been on HW as frequently as I have in the past.

Sounds like you have few new brothers and sisters at HW that you never knew about 1 month ago. Pretty neat, huh?

My doctor told me, right after he said. "You have cancer" that "from this point on, your life is going to change". I consider that the New Norm!

All that means is you realize now that you HAVE a prostate (which I think most of us knew but never gave it a second thought about), you are are going to learn a lot about prostate cancer, and you will be getting more PSA tests than you ever have before.

With your stats, all options are on the table, lucky you! You have plenty of time.

See the specialists in their fields and make YOUR CHOICE! As most of the guys have said, surgeons recommend surgery, radiologist recommend radiation, etc.

I chose surgery, but you need to do what is best for you. I would not tell you "Do what I did, you will be happy".

When you do decide, get the best doctor you can find to do it even if that means you have to travel.

We are here for you brother.

BTW, no snow down here in Florida!!!!!

Bill from Florida cool
Posted 2/11/2015 8:06 PM (GMT -5)
Ditto on having specialists in their respective fields consult with you. And while I understand how/why a surgeon doesn't have expertise in another field like brachy, it's awful irresponsible to quote wrong statistics. I wish the medical profession would realize that sometimes "I don't know" can be an acceptable answer.
Posted 2/11/2015 10:11 PM (GMT -5)
Well....I had just typed a long reply and thanking each of you that have responded to my last post. I somehow closed it before submitting (pout).

Let me at least try again to say what I ended with.
And I am taking the time to retype this for two reasons 1) To again thank all of you 2) For all of those recently diagnosed or new to the board.

Bill / Big Mac,

Regarding your comment:

"Sounds like you have few new brothers and sisters at HW that you never knew about 1 month ago. Pretty neat, huh?"

Much more than pretty neat / beyond amazing!!!
A buddy who had his out about three months ago told me about the board. So I figure why not? Maybe 1 or 2 will read it, maybe someone will reply??

Well...within minutes I had responses, caring and VERY helpful responses, and yes every one treating me like a brother or relative, one person said my initial post gave them strength (wow), over 2500 have read posts, people like Jeff / A Yooper taking the time to send me detailed info at home and BenSam taking the time to email me about his HDR procedure and recovery literally within the first week of going through it (PRICELSS as the commercial goes) . I could easily go on and on......

If you are new here and reading this, please read above, and PLEASE use this message board to help yourself.
You truly have found new brothers and sisters you did not know you had as Bill says. And, at a time of need.

One of the first people I discussed this with was a female co-worker fighting breast cancer.
She gave me two bits of wisdom:
1) Take each day at time, do not think about the "journey". You all are helping me with that big time.
2) Do not forget to thank those that helped you along the way.
Well, I am just starting this journey and I would never forget that. BUT, just no way I will EVER be able to thank each and every one of you enough.

Good night.

Vince

P.S.,
Bill, I DID like you until the FL dig :). Its going to be a HIGH of -4 here Sunday BEFORE wind chill. You are sincerely invited up for a barbecue my friend :).
Posted 2/27/2015 10:24 PM (GMT -5)
Have taken a few weeks away from thinking about and looking into treatment options. Mostly due to getting a new region for the job with many changes. Partly just to take a break from thinking about it.
Went back to my local URO today, so back into it. At last appointment he said he was kinda looking for a decision when I came in today.
I told him overall I still do not have one. Told him that probably 99% (if not more) was not doing surgery. I am still scared to death of the surgery option.
Told him was highly interested in Brachy and possibly HDR. He said he pretty strongly does not recommend it. Said for someone at my age he would strongly recommend surgery (which he and the out of town surgeon at Strong Memorial had said in the past).
I know you all have taught me "he is a surgeon and going to say that". Said the cure rate not as good. Said while most do not get major complications from radiation in general, to include brachy, that when you do it is bad, read bad.
Talked about several patients he sees with huge rectal, urinary and other issues from radiation. One being hospitalized like 8 times in a short period.
I also told him whatever I do, probably going to do it in second half of year.
So right now have an appointment in 3 months with him with a PSA test prior.
He is getting me an appointment with Dr. Zelefsky at MSK.
He is also giving me a referral to a surgeon to have hernia checked which was found during CT scan.
Other health problems continue keep coming: high thyroid readings from blood work (anyone know anything about that?), severe arthritis in big toe (and overall bad arthritis), the hernia, etc. It is kinda getting depressing.
Certainly probably mentally stronger than when I started (I think)) mainly thanks to the help of many of you all.
But probably 100% the same over so much conflicting opinions, options, etc.
Just still not sure how you ever come up with an answer. And even should you? Will this ever really do anything to me?? And as I had said in the past, the "After you study all the choices, you will know the right one for you". Well maybe I will pick one, but that is just not true.
Yeh, I know in this area probably no progress with my thinking. Just soooo confusing.
Also, will just never get over that Every choice has the same multiple negative implications. I know they say they have made much progress in prostate cancer treatment. While in one sense, I know they have. But if you have it and are trying. to deicide on treatment, I really argue, have they?
Well, that's it for now.
Could use any comments on the high thyroid readings, continued thoughts from those that did HDR, and continued help from those that struggled like me to make a treatment decision.
Thanks so much.
Posted 2/27/2015 11:08 PM (GMT -5)
Vince--

Hey Hi again!! My first URO also told me that surgery was the best option, followed by External Beam RT. He seemed to be quite involved ( financially ) with both those treatment options. I was not convinced that surgery was the option for me.

Your URO told you regarding BRACHY that it had a less successful cure rate than surgery? That when complications occur with any path of RT treatment (including BRACHY) they are "... bad, real bad.
Talked about several patients he sees with huge rectal, urinary and other issues from radiation. One being hospitalized like 8 times in a short period."

I would ask him to provide several papers or studies from the past 3-5 years that support his thesis. I have not seen those specific outcomes presented in scientific presentations/studies. It is critical that you do speak with an experienced Radiation Oncologist --or 2 or 3. I spoke to UROs (who wanted to go the surgery route), three separate RO's that specialized in IMRT, LDR, HDR. I also spoke with a URO who told me that HDR BRACHY would be an excellent choice for me. Another URO said AS is certainly not out of the question.. Wow a lot of different advice I did receive???? Based on these meeting, based on my own research, reading papers and studies, talking with HW guys, considering expected SEs from various treatment routes correlated to my own deep wishes I made a choice, a decision..... as my GP said ... at some point you are taking a leap of faith.

With all of this information taken into account, there is never, ever any absolute guarantee of anything! Every individual recovery will still be unique. As you well know I went the HDR Brachy mono route. I am having what I feel are a bit more urination issues, for a longer amount of time than I thought I would. They are slowly improving. It was my choice and my leap of faith.

But never any incontinence, never any ED issues, little to no pain, no foley catheter after I left the hospital...maybe things will deteriorate over the years ... who knows...

This decision is yours to make. There is so much to read and learn.... DO IT!! You are more than worth it.

BENSAM
Posted 2/28/2015 7:47 AM (GMT -5)
Vince, a slightly perverted version of the old saying is, "The definition of insanity is asking the same question of the same person over and over again and expecting a different answer". It's clear that your urologist is going to continue to push surgery and it's also clear that he is not current on the cure and SE's of modern brachy.

On the positive side, Dr. Z is one of the best so you will get a good answer from him as to whether or not you are a good LDR Brachy candidate.

Jim
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