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Posted 2/2/2012 7:51 PM (GMT 0)

55 yo - I am still searching for the treatment that will suit my case.

I have seen two surgeons and three radiologists (the brachyterapist being a medical oncologist, too). Two of the radiologists recommended active surveillance (one surgeon said that I could wait some time, too). I am now more inclined towards brachytherapy, either low or high dose. I would appreciate it a lot if some of you who went through one of this to take the survey I put online:http://www.surveymonkey.com/s/3W83YBL

That will help me understand a little better this kind of treatment.

Many thanks.

Victor
Posted 2/2/2012 8:11 PM (GMT 0)
Your survey link doesn't work for me... Either way, I'd recommend you ask your questions here.
Posted 2/2/2012 8:37 PM (GMT 0)
Ufortunately, the site is temporarily down.

It's working now:

http://www.surveymonkey.com/s/3W83YBL



1. When did you have your treatment?

2. What treatment did you have?
Low Dosage Brachytherapy
High Dosage Brachytherapy

What Isotope? Dosage?

3. What hospital location/clinic?

4. Was the cancer cured (no biochemical failure)?
Yes/No
Yes- After 3 years No - After 3 years
Yes - After 5 yearsNo - After 5 years
Yes - After 10 yearsNo - After 10 years
If selecting only "Yes" or "No" plaese specify duration.

5. What were the side effects after treatment (1-6 months)? Check all that apply.
Urinary urgency
Urinary burning
Urinary incontinence
Rectal irritation
Rectal bleeding
Impotence
How severe?

6. What were the side effects after 1 year/or max years following treatment ? Check all that apply.
Urinary urgency
Urinary burning
Urinary incontinence
Rectal irritation
Rectal bleeding
Impotence
How severe?

Post Edited (NewDiag) : 2/2/2012 1:55:35 PM (GMT-7)

Posted 2/2/2012 8:58 PM (GMT 0)
Newdiag,

Most of the answers are in my signature below. In addition I will add that I have had no incontinence or rectal problems whatsoever. The unrination SEs have all disappeared. While I do not have ED, I have experienced a slight loss of libido.

If you want any additional details, please feel free to contact me at the email address in my profile.

Best Wishes in the decision making process.

Joe

Posted 2/2/2012 8:59 PM (GMT 0)
I'm only 6 months out from treatment (seeds), but you can read my journey in my signature. At this time life is pretty much the way it was before treatment. I wouldn't rush into any type of treatment.
Posted 2/2/2012 9:08 PM (GMT 0)
NewDiag, I will complete your survey but for a more detailed look at a happy brachytherpy customer feel free to copy and paste the link in my signature.

Good luck in your decision,

Tudpock (Jim)

Posted 2/2/2012 11:43 PM (GMT 0)
I'm just a few days away from my 3rd of three HDR brachy treatments. I took your survey, but obviously don't have results yet. I decided on HDR because it seemed to me to give more radiation to the prostate and its surrounding tissues while giving less to other tissues. And I wanted to avoid surgery - the people that post here with problems seem to be more likely to have chosen surgery, though many have also done EBRT, as well.

The process itself has been relatively painless. I have trouble sitting in a regular chair (recliner that can lean back is fine) due to swelling and such. I'm not sure if the pain is coming more from the tube placement (the perineum is certainly a tender spot to be poking holes) or the rectum.

Urinary frequency is high, but I sleep through the night - for me the urgency and frequency seem to be worse when standing than when sitting or lying down. There was some urinary burning for the first few days after the first procedure, but not much since.

Most of us chose what we did for good reasons that still make sense to us, but YMMV. And most of us still agree with the choice we made. I wish you the best of luck with your decision and outcome.
Posted 2/3/2012 12:49 AM (GMT 0)
Steve, Joe, Jim, Greg,

I appreciate your help.

Victor
Posted 2/3/2012 7:08 PM (GMT 0)
Victor,

Also, took your survey, but couldn't add much to long term results as I'm just 2.5 weeks post implant. But, I feel pretty good overall. The seeds have definitely kicked in as the urinary frequency and weak stream, some burning, have set in within the last 3 days.

Bob
Posted 2/3/2012 8:48 PM (GMT 0)
Did the survey but could not answer all the questions.....here's a copy of my procedure.



www3.islandtelecom.com/gkavanagh/MyBrachyProcedure.pdf
Posted 2/5/2012 2:12 AM (GMT 0)
Bob, FoxRun,

My sincere thanks to you and all who responded. I value your information.
Posted 2/5/2012 3:25 AM (GMT 0)
Victor,

Your stats reveal a low-risk cancer. Charles Myers, Jr.,MD has stated that you are more than 10x more likely to die of something else than a low-risk Gleason 6 cancer (especially with your low PSA and very small tumor volume). I am scheduled for brachytherapy on the 23rd of this month (I have a 3+4 cancer with 5 positive cores). In my opinion.....you should be patient and consider active surveillance. You do have to make the decision for yourself, though. Good luck


Paul
Posted 2/11/2012 1:47 PM (GMT 0)
Many thanks, Paul. I had a contrast MRI done and sent my biopsy slides to Dr. Epstein for a second opinion.
Posted 2/13/2012 8:48 PM (GMT 0)

Do we qualify as "long-term" now LOL - our journey can be found at JustJulie's Brachtherapy Journey if you search - I cannot seem to link it here but I think we're one of the longest-posting Brachytherapy supports on this forum - if you have any questions, feel free to ask away ...

Posted 2/25/2012 12:58 PM (GMT 0)
Hi newdiag

My husband is 46 and just had radical prostatectomy (24 Jan). He had gleason 7, and 9 out of 12 cores of the biopsy tested positive, mostly at the highest grade of cancer.

We were told that if we had opted for brachytherapy, it would make later surgery practically impossible because it effectively fries the prostate and causes it to scar and create adhesions that are very difficult to remove. Nerve-sparing surgery is practically impossible after brachytherapy.

We were also told, that because of his relatively young age, the long-term effects of brachytherapy have not really had time to be investigated as it is a relatively new treatment. And to have that amount of radiation now could well cause him problems in the future.

Perhaps foolishly we didn't talk to a brachytherapist for the alternative point of view. But we certainly thought that what our surgeon said made real sense.
Posted 2/25/2012 1:12 PM (GMT 0)
janem123

Unfortunately, urologists still hold to the old "gold standard" myth that surgery is the be all and end all for prostate cancer treatment, especially in younger men. That's just not true. Brachytherapy treatment has come along way, and the success rate is at least equal to, and in some cases, better than surgery intervention, especially in intermediate to high risk cases. Many still chose surgery, and it's their choice, but I wish that Dr's would fully inform their patients of all options, and give them the chance to investigate those options fully (whether it be be their own research, second opinions with radiation oncologists, etc) before immediately scheduling them for surgery. It's just such a life altering, major surgery that I don't think people should just rush into.
Posted 2/25/2012 2:27 PM (GMT 0)

powellst said...
janem123

Unfortunately, urologists still hold to the old "gold standard" myth that surgery is the be all and end all for prostate cancer treatment, especially in younger men. That's just not true. Brachytherapy treatment has come along way, and the success rate is at least equal to, and in some cases, better than surgery intervention, especially in intermediate to high risk cases. Many still chose surgery, and it's their choice, but I wish that Dr's would fully inform their patients of all options, and give them the chance to investigate those options fully (whether it be be their own research, second opinions with radiation oncologists, etc) before immediately scheduling them for surgery. It's just such a life altering, major surgery that I don't think people should just rush into.

A very good post and unfortunately not discovered until after the fact. My URO's exact words were "he wouldn't consider surgery unless he was going for a home run".....at the time i had no clue what he meant, but I do now.
Posted 2/25/2012 11:40 PM (GMT 0)
Thanks Foxrun and Powellist. I hope your brachytherapy continues to be successful.

I wish we had consulted a radiation oncologist as well as a surgeon!
Posted 2/26/2012 1:28 PM (GMT 0)

janem123 said...
Thanks Foxrun and Powellist. I hope your brachytherapy continues to be successful.

I wish we had consulted a radiation oncologist as well as a surgeon!

This is not uncommon, my brother was DXed 3-4 years ago and he hadn't heard of Brachy or even HT until I told about my options just last April.

Good luck Janem123 and keep us posted....
Posted 2/26/2012 6:26 PM (GMT 0)
Myths about radiation are still very common and are often told to patients by urologists that should know better.
The biggest myth is that surgery after radiation is not possible. The most common forms of surgical failure are systemic disease, leaving prostate tissue behind and positive margins. Radiation will eliminate the last 2 causes and today there are very few local failures in radiation and the vast majority of failures are systemic. Surgery still has a very high amount of local failures that require follow up radiation that would have been eliminated if radiation was used as the primary treatment. It is also a little know fact that a person can be reseeded with either high or low dose Brachy. Cryosurgery is also an option for locally failed radiation as is surgery by an surgeon that specializes in that type of surgery. Simply telling a patient that surgery is not possible after radiation without explaining why surgeries commonly fail and leaving out the other options available for failed radiation sounds a lot like a used car salesman talking.
There is very good 15 year data on secondary cancers caused by radiation. The rate is about .5% and equal to the 30 day mortality after surgery. These cancers are mostly bladder cancer which is eaisly curable.

JohnT
Posted 2/27/2012 7:16 AM (GMT 0)
Hiya

Just found this UK website which has a great table/matrix of treatment options which you may find helpful ...

http://www.prostatecancercentre.com/treatsel.html
Posted 2/27/2012 3:32 PM (GMT 0)
In 2007, I had exactly the same biospsy report as you have, 2 of 12 pins <5% Gleason 6 with a psa of 4.5 Many told me to wait and see, rather than do anything at that time because of my low % of cancer and gleason 6. After a lot of research and thinking about it, I decided on surgery. After the suergery, the pathology came back still Gleason 6, but now it had 20% cancer instead of <5, and what really scared me was that the cancer was only a few millimeters from escaping the prostate. My doc said that if I had opted to wait a few years before I took action, there would have been a very good chance that it would have escaped and now I would be dealing with positive margins. To this day, I am <.04 on every psa test. Also I have no ED or incontinence. I gues what I am trying to say is that the biopsy does not always give you a true indication of how much cancer you really have. Good luck with what ever decision you decide.
Posted 3/2/2012 4:58 PM (GMT 0)

Here are some of the obstacles I encountered with this cancer:

　

There is no good way to determine the extension of the cancer for T1c diagnosis, as the biopsy is not precise and the imagining techniques are even less predictable. What we rely on is mostly statistics derived from correlations between the test results (PSA, percentage of cores and volume of cancer and Gleason scores) before surgery and findings after. We need to recognize that even the Gleason score is not the same when comparing the results from different medical centers. I recall myself just before the biopsy asking the doctor if 12 needles are sufficient and I was told that 12 is the optimum. As I had no symptoms before the biopsy, but I had and still have some bothering effects after it, I wish I would have a had a saturation biopsy so I would know better the spread of the cancer, as I do not plan to have another biopsy, even if I am waiting for some months. I have sent my biopsy slides to Dr. Jonathan Epstein at Johns Hopkins and they confirmed cancer only in one of the needle (<5%) vs. two in my original biopsy interpretation.

In my case, I was quite disappointed that I was tested without my knowledge and pushed for biopsy, without thinking too much about it. I am OK with knowing about my cancer, but I am not at ease that no doctor educated me what to expect from this diagnosis; by contrary, the first doctor (urologist/surgeon) suggested to have the surgery it done ASAP, without seeing 4 - 5 doctors. I did see 6, two surgeons (one being Mani Menon - who performed the first robot surgery in the world- who also said I can wait), two radiologists (IMRT and CyberKnife) and two brachytherapists (LD-low dosage/seeds and HD-high dosage/no seeds). In an Excel spreadsheet, I created a decision score to account for the chances of being cured and have undesirable side effects. Based on the knowledge I acquired and on my priorities I came up with LD or HD BT monotherapies as being very close the top runners - coinciding with my perception, which I am still thinking about while I will have another PSA done in the immediate future.

I want to thank to all of you who provided thought starters and shared your experiences with your treatments. 
Posted 3/2/2012 6:23 PM (GMT 0)
Dear NewDiag:

You have done exactly what many of us on this forum have suggested to new patients namely, take your time, confirm your biopsy, consult multiple docs across multiple disciplines, get yourself educated and try to reach a data-driven rather than an emotional decision.  You score 100%!  And, BTW, I think you have reached a logical and throughtful conclusion.

Best of luck,

Tudpock (Jim)

Posted 3/2/2012 7:19 PM (GMT 0)

janem123 said...
Hi newdiag

My husband is 46 and just had radical prostatectomy (24 Jan). He had gleason 7, and 9 out of 12 cores of the biopsy tested positive, mostly at the highest grade of cancer.

We were told that if we had opted for brachytherapy, it would make later surgery practically impossible because it effectively fries the prostate and causes it to scar and create adhesions that are very difficult to remove. Nerve-sparing surgery is practically impossible after brachytherapy.

We were also told, that because of his relatively young age, the long-term effects of brachytherapy have not really had time to be investigated as it is a relatively new treatment. And to have that amount of radiation now could well cause him problems in the future.

Perhaps foolishly we didn't talk to a brachytherapist for the alternative point of view. But we certainly thought that what our surgeon said made real sense.

Hi janem123,

I am sorry that I did not respond to your post sooner, but my work and other commitments prevented me to log on this site, lately.

There is no perfect treatment solution - therefore, there is no gold standard. Please observe that I am not a doctor by profession, therefore I have only opinions based on accumulated information in the medical field. Regarding surgery, in addition to the two American surgeons, and after talking to radiologists, I consulted via phone the surgeon I trust the most (former roommate with my brother), in my European country of origin. The surgery poses a large spectrum of risks and he backed me up for my inclination. If I am a specialist in a field of engineering does not make me specialist in another, and I look the same at doctors. Some of them may have been more exposed or practiced in different medical fields, but in most of the cases they are not and are subjected to human bias based on their personal organizational motifs. From what I know, the surgery alone could pose some risk to recommend if someone factors in possible positive margins. Probably, brachytherapy (T1c and T2a), brachytherapy + IMRT or IMRT (or proton) (for higher risk) could have been offered as well.

The seeds brachytherapist I have seen has been doing this for 20 years (although more refined in the last years) and my HMO is covering both LD and HD, therefore they are considered mainstream treatments. The cure rates reported by both doctors (LD and HD) with their 10 year treatments in similar cases are high nineties %. But even these treatments do not come free of undesired side effects.

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