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For Those Interested in HDR Brachytherapy - Part 2

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Posted 1/12/2013 12:11 AM (GMT 0)
I received quite a few positive remarks when I originally posted this so I thought I would keep up with my trek thru Brachyland (not associated with or to be confused with Disneyland).   I started a new thread to keep the post from getting too long.   I will also repeat the previous information for the benefit of the first time readers. For Those Interested in HDR Brachytherapy Part 1 Jan 9, 2013 My wife and I saw the radiation oncologist today.   Unfortunately the radiation oncologist we saw today wasn’t he the one that does brachytherapy.   The oncologist we saw was knowledgeable about brachytherapy and what the two radiation oncologists that do brachytherapy will do.   I will see one of them in my next appointment and confirm everything this doc told me.   I had in my mind pretty much what I wanted to do – High Dose Rate (HDR) Brachytherapy.   My preference   for HDR was for several reasons:   1) you are not radioactive when you come home; 2) it is a shorter regime than external radiation;  3) the radiation does not have to travel thru healthy tissues to get to the prostate; 4) the success ratios are comparable to surgery, external radiation, and Low Dose Rate (LDR).   They will do pretty much everything I wanted except they do it in two fractions (treatment sessions) separated by a couple weeks.   I had hoped for all the treatments to be done is one session with an overnight stay in the hospital but that is not how they do it at this cancer center.   I can live with the two fractions being separated by a couple weeks if they give me plenty of pain meds.   I wanted it as a monotherapy, i.e., no external beam radiation and since I only have one of the three criteria that put me in medium risk so they will do it as a monotherapy.   They called it low medium risk.   If I had two or more of the criteria they would want to do external radiation also and I would be shopping for another microwave oven.   The three criteria are Gleason Score of 7 (which I have); a PSA of 10 to 20 (don’t have – mine is 9.4); Stage T2b or T2c (don’t have – mine is T1c).   The doctor I met today isn’t the actual one that does the HDR (he does external radiation) so I have another appointment next week on Wednesday with the doctor that does the HDR.   They use general anesthesia when they are putting the catheters in and propofol – the Michael Jackson Ultimate Sleeping Aide (gotta love that stuff).   I think they mentioned they do it on a Friday so you at least have the weekend to rest.   Not sure if I will have to take more than just Friday off.   My wife is Ok with the regiment and that is important so I think I am set for the microwave oven treatment. The radiation oncologist I saw today had done some studies I had read about . They use hyaluronan gel to add space between your rectum and your prostate - the benefit being a lower dose to your rectum and hopefully less side effects. The principal investigator in the trials was the doctor I saw today. They are using it at this facility as standard treatment. You can read the abstract here: http://www.ncbi.nlm.nih.gov/pubmed/20591748   For Those Interested in HDR Brachytherapy Part 2 Jan 10, 2013 My wife and I saw my surgeon today at the VA hospital.   He told me that I had about the same chance of success with surgery as I did with radiation.   He also said I would be more likely to have adverse side effects with surgery.   I thought this was pretty honest assessment especially coming from a surgeon.     He works at the VA hospital so he doesn’t have a profit motive.   He was actually the one that had encouraged me to see a radiation oncologist.   He said he would not be offended if I chose radiation.   I was glad because he has been the one treating me for the past 12 years and I have grown to trust his judgment and like him.   He has also removed several kidney stones for me.   My wife and I will see the radiation oncologist at the cancer center next week.
Posted 1/12/2013 12:19 AM (GMT 0)
Really good of you to be posting this. Thanks.
Posted 1/12/2013 3:32 AM (GMT 0)
harold is definitely interested. he is having a phone consult with the doc at ucla thursday.
this is the doc: http://radonc.ucla.edu/body.cfm?id=216
and the procedure: http://radonc.ucla.edu/body.cfm?id=212
Posted 1/12/2013 12:30 PM (GMT 0)
MauiViv and Harold, Good luck!!! I hope the phone consult gives you valuable information and if you go with the procedure I hope it is very successful! I would be interested in the results of both the consult and hearing how the treatment went.   Best of luck.   David
Posted 1/12/2013 11:37 PM (GMT 0)
DataDavid - GREAT post, and one that will be VERY helpful for the newbies that are considering HDR - Way to Go Dude!!!!  You're already starting to "Pay Forward" - very much appreciated!  You are a model for the newbies in terms of understanding your PCa statistics, learning about the various treatment options, weighing those along with what is important to you, and making a decision.  Textbook - newbies pay attention!

Best to you Brother!

Posted 1/13/2013 1:37 PM (GMT 0)
Obviously lots of discussion here lately about surgery vs brachy. I've always stated openly that the concern about ED was my main issue. What really put me over the edge in favor of brachy was the fact that not only do brachy patients have a lower instance of ED, but those who do have ED issues respond better to oral meds than do surgery patients.
Before anyone jumps on me for data, let me say that I am not a numbers junky. Just repeating what my oncologist told me and what I read elsewhere.
Posted 3/1/2013 12:32 AM (GMT 0)
harold just had HDR brachytherapy at ucla. he had 2 treatments: feb 20/21 and feb 26/27. so far no side effects except tiredness and a bit more frequent urination and defacation.
the treatment itself made me shudder. 17 hollow straws about 8 inches long are inserted into the prostate and held in place with a template. this is done with spinal anesthesia. then 3 radiation treatments are administered each week.
we should learn more next week at harold's follow up appointment.
interestingly, the HDR brachytherapy is used to treat quite a few types of cancer.
Posted 3/1/2013 1:54 AM (GMT 0)
I was among the first on the board to have HDR more than two years ago, I have done well and everything went better than expectations. No urinary or bowel problems and I never needed any pain meds. I am clearly an advocate of HDR.

As I had considered both seeds and HDR, the tipping point was the advice of my medical oncologist when he said "seeds are last century...HDR is 21st century". Actually I was convinced that either procedure would be effective, I just liked the better technology and that no radiation was left in me with the HDR.
Posted 3/1/2013 1:21 PM (GMT 0)
MauiViv - nice to hear from you again and thanks for the great update on Harold! You guys "did good" with your research and decision to have HDR at UCLA, so I'm not surprised he's experiencing no major SE's.

Please remember that other newbies will be sure to come our way - and that they would benefit greatly from the journey the two of you took - so please, stay with us and keep the updates coming!

Continued best to you both!!!!!
Posted 3/6/2013 1:00 AM (GMT 0)
harold saw his doc at ucla one week after his hdr brachytherapy. he is feeling pretty good - a bit of urinary and bowel frequency and tiredness but no pain and no other issues. he won't have a psa test till june so we will have to wait till then to see how he did. and best of all, we get to fly home thursday!
Posted 3/7/2013 5:50 PM (GMT 0)

DataDavid,

Thanks for the informative post on HDR.  Did not know much about it.  My RO said it would be better than low dose because of possible SVI.  The RO also said it would be better to have it done after IGRT because of less side effects.

A Yooper,

"DataDavid - GREAT post, and one that will be VERY helpful for the newbies that are considering HDR - Way to Go Dude!!!! You're already starting to "Pay Forward" - very much appreciated! You are a model for the newbies in terms of understanding your PCa statistics, learning about the various treatment options, weighing those along with what is important to you, and making a decision. Textbook - newbies pay attention!"

You are right.  Where would we newbies be without the information and help provided by very knowledgeable men who have lots of experience.

JNF,

Thanks for your post also. Have always found your posts very helpful.

Phil 

 

  

Posted 3/8/2013 3:57 AM (GMT 0)
First post on this board. hate that i'm here. love that others have made the learning curve smaller.

Hubby diagnosed 20mos ago, biopsy and numbers show it's time to treat. He is scheduled for first HDR monotherapy this Tuesday, March 12. 2nd HDR the next Tuesday. This doc does 2 treatments on each day (4 total treatments on 2 days - no overnight hospital stay).

We both have been confident in the decision for HDR but the only thing that has been nagging in the back of my mind is how do you know if you have a doc with enough experience and if you are at the right center? Hoping JNF replies since he is in GA too, like us. We are in Augusta.

How do you find the most experienced center and doctor? It's not something the lady answering the phone gives you and the website doesn't list it! We had consults with 2 diff ROs in same practice -- supposed to be best group in our city -- and both docs avoided the question when asked directly on first visit about how many of these they had done - which made me worry. It was odd tension and big general, "been doing this 5 years, don't know exact number, blah, blah". At pre-op visit this week, hubby asked doc again and he said he had done roughly 200 - he only does 1 a week and his schedule is full. Guess they only do 1 a week even if they had many wanting. We had to wait a month to get scheduled in.

So what do you do? Just call doc after doc and ask how many HDRs they have done and then schedule a consult with the guy with the biggest number? They don't give a number over the phone! And having random Level 5 consults over and over doesn't make sense. We had decided we would travel to Atlanta if needed but even then, how do find experience??? That one thing has been the WORST part of this decision making.

Hubby likes this doc, and doc has been doing HDR solely for 5 years. Said he doesn't even do seeds anymore personally -- he believes in HDR. He's one of the senior docs in practice, but why is it so hard to get a procedure *count* from a doc? We have a huge medical school research center here but it seems like HDR is still new in our town?

We know we want HDR -- 100% -- and with the procedure a few days away, I just don't know how to get this knot out of my stomach, or reassure myself that a doc who has done 200 of these is good experience. Wish there was some board of the best docs and the best treatment centers by city/state.

Sorry for rambling. Can't seem to make a concise thought as this gets closer. Will be a stressful final days until this procedure begins.
Jennifer confused
Posted 3/8/2013 4:43 AM (GMT 0)
I asked Dr. Jeff Demanes at UCLA why so few doctors offer HDR monotherapy. He explained that there's no money in it. Many ROs package it with IMRT on which they make the real money. Dr. Demanes (now at UCLA) and Dr. Alvaro Martinez at William Beaumont Hospital in MI were the innovators in this very high tech approach (their protocols differ slightly), but their long-term results have been excellent. They've been doing it since 1996, so there is a long track record:
http://www.ncbi.nlm.nih.gov/pubmed/21310546

Based on its success, Dr King tried an external beam version, called SBRT, that seems to work equally well. They both take advantage of a unique quality of prostate cancer -- the cells are killed better, and surrounding healthy tissue are preserved better, by short high-intensity blasts of radiation than by prolonged low-intensity radiation (as in IMRT). Technically, this means that PC has a low alpha/beta ratio.

They ran a randomized prospective study of HDR vs LDR(seeds) at William Beaumont Hospital and found that the SEs, and especially erectile dysfunction was worse with LDR:
http://www.ncbi.nlm.nih.gov/pubmed/14767279
http://www.ncbi.nlm.nih.gov/pubmed/16093980
Dr. Demanes attributes the difference to the extreme precision of radiation placement with HDR, the fact that even interlaced seeds migrate, and the fact that nothing radioactive is left inside to provide continued irritation.

Interestingly, for both SBRT and HDR Brachytherapy, adding ADT does not improve outcomes and only increases urinary, rectal and sexual SEs.

If you call either of these doctors, they may know a good practitioner in your area, and I expect they will be happy to refer you. The American Brachytherapy Society publishes guidelines and qualifies practicioners, so you can call them too. Or, at William Beaumont, I think they do it all across a 2-day hospital stay, and you can go home right after.

- Allen
Posted 3/8/2013 4:57 AM (GMT 0)
First of all welcome to HW and I'm also sorry you have to be here. But there's a lot of great advice to be had here...I'm relatively new but I've had an incredible amount of help here from the community.

I'm not sure if a mod will move your post to its own thread where it can receive more attention, but in the meantime let me respond to some of your issues while we wait for the smarter guys to reply!

Certainly, a more experienced team is better than a less experienced team, but I couldn't tell you the number of procedures you need under your belt to be an expert. That said, doing 1 procedure a week doesn't sound like a lot to me. I just had my HDR brachy at UCLA and they do at least one procedure per day and frequently more. I do think your ROs owe you more information...if not to help you with your decision making, to help with your peace of mind.

Also, can you post your husband's statistics, similar to what you see at the bottom of my e-mail? Presumably if he is having this a a mono-therapy then he doesn't have a high risk diagnosis and often that means you have more time to make a decision in case you re-think where to have HDR.

These are tough decisions to make and sadly there's often no clear road to follow. Good luck and I hope some of the more senior people can reply to this and give you additional insights.

Michael
Posted 3/8/2013 5:59 AM (GMT 0)
i'm sorry if i shouldn't have posted as a reply instead of new thread? while reading the boards, I saw a gentleman from ATL, which is near me, and he seemed knowledgeable so I thought by asking here, he'd see this post and might know about experienced docs in this area in the same procedure he had... which was the topic of the thread.

thanks to the 2 who have replied so far. I never considered a phone consult with UCLA. Hubby is confident of HDR, numbers low (Michael_T, i'll get the numbers like you have listed and create a signature - don't have them all memorized but PSA only went above 5 once but 4 biopsies later, involvement went from 4 samples to 9, gleason 6, doc said time to act, so we did).

Guessing my question is more general than specific to our case.... when you get your diagnosis, how do you choose a doc and cancer treatment center? how does anyone know how many of any procedure a doc has done? A consult with all of them? We assumed the biggest practice in town would have done the most. So, in general terms, how does a person find the doc with the most experience in a procedure? We don't know anyone local with PC so I can't find out who a "friend" went to.

Wish there was a board out there by city to list the experience level of diff docs/centers/
Jennifer
Posted 3/8/2013 4:03 PM (GMT 0)
Sorry Jennifer, I missed your post. 

I had HDR in Atlanta and know of two clinics that do a lot of them.   The clinic I used has two rad-oncs that do HDR and they each do 4-6 per week.   They have been performing HDR for more than 10 years and follow the Martinez protocol more so then the Demanes protocol.   Another clinic within a hospital also performs multiple HDR procedures each week.   I have a very good friend that used them three years ago and is very satisfied.   I will be happy to supply you with any information that I can.

As to your doc that has performed 200 and does one a week....is that enough?   I don't know as there is any magic number.   When I did mine two years ago, my urologist and rad-onc had done more than one thousand together.   The practice is very oriented to HDR.   That gave me confidence.   If I were you, I would find out who the urologist will be and how many the two doctors have done together.   I would also ask for referrals to other patients.

Please let me know how I might help,

Jack

Posted 3/8/2013 4:29 PM (GMT 0)
Thanks for the reply Jack. I'd love to have references from you please for ATL docs/centers. I asked the RO if our urologist did the procedure with him and unless he didn't understand me, or I didn't understand his reply (which could be possible), he doesn't have a urologist help him during the procedure. It sounded like it was just him, his PA maybe, and the radiology tech?? I might have that wrong but I know hubby's urologist who sent us to the RO is not going to be there. Different practices all together.

This is supposed to begin on Tuesday. I don't know if we are too far in to this. Maybe I can get a phone consult fast. HATE the feeling of not being sure and 2nd guessing myself.

If you are allowed to email me, jscrow at knology dot net ([email protected]).

Thank you Jack-
Posted 3/8/2013 6:15 PM (GMT 0)
Jennifer, I started a thread for you titled "Welcome New Member JSC123" - and just "bumped it" to bring it to the top of the prostate cancer threads.

Hopefully this will make you more visible to the brothers and sisters out here to help out.

Best to you.
Posted 3/8/2013 7:04 PM (GMT 0)
Jennifer,

If you are not absolutely confident, you can defer the treatment while you seek a second opinion and get more and better information from your rad-onc. If your husband's numbers are low, time is on your side.

A deferral may or may not be welcome by your doctor. I would hope the doctor would want you to be absolutely confident and that if you aren't, then it should be deferred. If he gets out of sorts, it might indicate he wasn't the best choice especially as he hasn't been completely forthcoming with the answers to your questions. I will get you contact information for the people I know in Atlanta and get it to you this weekend.

As to the procedure, it is my understanding that it normally includes the urologist and rad onc and that the urologist is an integral part with the use of the Foley catheter, scoping, and HDR catheter pacement.
Posted 3/8/2013 7:25 PM (GMT 0)
we live in maui and decided on a phone consult. dr demanes at ucla does a lot of phone consults. we had been leaning towards him and hdr brachytherapy after doing a lot of researh and the phone consult clinched it!
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