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New to board with my story and looking for Brachytherapy info

u2pctls
Posts: 1
Joined: Sep 2011

I am a 63 year old male and was diagnosed with PC on July 27, 2011. I am now trying to figure out my therapy options.

With a PSA over 5, I had my first biopsy (2 out of 14 cores positive; left base 25% and left base lateral 30% with Gleason score 3+3 = 6, clinical T2) The first biopsy also showed one PIN on the right mid lateral.

With a Gleason score of 6, I opted for Aggressive Surveillance (AS) and found a new urologist who was not opposed to AS. I wanted time to find out if my PC was low risk or highly aggressive. I then had a PCA3 test (good results of 14.0, result Negative). Since I decided for AS, my new urologist wanted a second biopsy to obtain a more informed AS starting position. Second biopsy at the end of Sept, 2011 (2 out of 14 cores positive; left base 20% and right base lateral 5% with Gleason score 3+3 = 6).

I now had PC found on both the left and right side on my prostate. My urologist told me I was still a candidate for AS.

I then interviewed a urologist (my fourth) with a great deal of DaVinci Robotic surgery experience at the Mayo Clinic. The clinic reviewed all the slides from both biopsies and scored the second biopsy as Gleason 3 + 4 = 7 instead of the original Gleason 3 + 3 =6. The Mayo doctor suggested I should not wait too long to make a decision.

At this point if I decide to have surgery, I will opt for DaVinci RP at Mayo. I am not committing to surgery so I am continuing to investigate other options. So far I still really don’t know if my PC is low risk or very aggressive. My next PSA results are due on Monday which will give me information about my AS choice.

Next Tuesday, I am interviewing a well respected radiation oncologist to discuss Brachytherapy (BT). I am reading about Brachytherapy and would welcome any comments or experiences you could share about this therapy. Looking at a chart reproduced from a 2009 Journal of Clinical Oncology at www.pcf.org (click Understanding Prostate Cancer, choose Side Effects and scroll down to the bottom of the screen) clearly shows BT handles both incontinence and ED better than radical prostatectomy. Of course I believe you won’t find a similar chart in the Journal of Urology.
Here’s the PC patient dilemma as I see it:

In my opinion today’s curative therapies for PC come at a high cost in terms of quality of life (i.e. incontinence and ED) for about 30% to 60% of PC patients. Yes, the wide 30% to 60% range was deliberately included to show how many statistics found in PC discussions bring little clarification to the discussion. These wide percentage ranges address the necessity of finding the very best doctor regardless of therapy choice.

I keep reading PC patients should search for the best therapy choice (and the best practitioner) for their own situation. As an amateur in the field of PC, you are at a disadvantage when interviewing experts with years of experience. Several therapies may appear to qualify as the best choice. Every doctor (only 7 so far) I have interviewed made sure to mention NO CLINICAL TRIAL DATA is currently available to compare the different PC therapies. All of these doctors were also very careful to pause, get your attention and slowly say “xxx is shown to be JUST AS GOOD AS yyy” where xxx is their area of training. Very helpful indeed so go ahead and make your own best choice.

Thanks for viewing my story and Good Luck on your journey.

hopeful and opt...
Posts: 1332
Joined: Apr 2009

I suggest that you get a second opinion of both biopsies from an independent third party expert pathologist. Boswick, who probably analyzed the PCA3 is one, and Johns Hopkins is another.

hopeful and opt...
Posts: 1332
Joined: Apr 2009

I wonder if the new pathologist will provide the percent of the primary and secondary score in the gleason.

I wonder, where were the other pathologies done?

hopeful and opt...
Posts: 1332
Joined: Apr 2009

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hopeful and opt...
Posts: 1332
Joined: Apr 2009

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prezmic
Posts: 36
Joined: Jul 2011

Welcome to the forum. You can gather a great deal of information and opinions here to help with your decision. It was very helpful to me.

I was diagnosed in April 2011. PSA 9.6 and Gleason 3+4 on 5 of 12 biopsy samples. I too interviewed several doctors about surgery and Radiation choices. I agree that you should choose the best doctor available. My feelings were towards experience, but also one who was current on new advances in their respective expertise. I chose a university/research approach and was fortunate to find an oncologist and robotic surgeon with a specialty in prostate cancer. They answered all of my questions over a several month period through multiple e-mails. As I did my research and learned new things, I posed my questions,

Our mutual decision was a combination of IMRT and BT. The driving factors were curative rates and quality of life success. Surgery was eliminated due to the higher risk of problems. I wanted the least invasive treatment with the least chance of post treatment problems.

I received 25 IMRT treatments over a 6 week period starting in Sept 2011. This was rather effortless with only slight urinary difficulties - weaker flow and increased urgency. This quickly improved within 3 weeks of the completion of treatments.

10 days ago, I had my brachytherapy. 55 Cs-131 seeds were implanted in the morning and I was home that afternoon. Here is a link on the use of Cesium. I was pleased that my doctor uses this isotope. http://medicalphysicsweb.org/cws/article/newsfeed/46317

A few days of soreness while sitting is my only complaint thus far. I understand that any urinary difficulties will increase over the next few weeks, but they should be minor and temporary. Yesterday I experienced slight ED trouble but I expect that also to be temporary. I have faithfully performed kegel exercises for the last 4 months which will help in recovery and prevention of further urinary problems. I also plan to work on the ED agressively.

There was no concern with the 7 month timeline from diagnosis to completion of treatment. I would guess that you have even longer to arrive at your choice.

Good luck.

Swingshiftworker
Posts: 637
Joined: Mar 2010

Sounds like you have a pretty good grasp of the risks of surgery. If you haven't seen it yet, I suggest you read the following article which should give you good reason to think of another form of treatment -- even with a Gleason 7 diagnosis:

http://www.hifurx.com/prostate-cancer/prostate-cancer-after-effects.

As for brachytherapy (BT), it has a good overall track record with a lot of clinical data. However, BT is also not w/o it's own risks. The quality of LDR (low dose rate) BT as a treatment depends largely on the precision of the treatment plan -- ie. the accuracy of the dosage and placement of the seeds. If the dosages are incorrect (too high at particular locations and if the location of the seeds is imprecise, there is a risk of collateral tissue damage that can result in ED, incontinence and other problems. The problem w/LDR BT is also that the seeds can migrate and/or get passed out when you pee (f***ing up the treatment plan) and the seeds also remain in your prostate forever (which in the short term makes you radioactive that can create problems for you at the airport and limit your contact w/pregnant women and young children during at least the 1st year following treatment).

If you are set on BT, I suggest you consider HDR (high dose rate) BT instead which only places the seeds in your prostate temporarily. It's kind of like external beam radiation treatment (EBRT) only the radiation is placed internally for a short duration so that the radiation gets the job done w/o passing through other tissue and you are no longer radioactive after the seeds are removed. Treatment again is only as good as the plan but you don't have to worry about seed migration and continuing radioactivity.

However, if you're really worried about your quality of life following treatment, I strongly suggest you look into CyberKnife (CK) and Proton Beam Therapy (PBT) as alternatives. I and several men here have been treated w/CK without any significant side effects -- no ED and no incontinence. However, one man did experience a significant infection following the placement of fiducials prior to treatment, which is a risk connected w/any transrectal penetration (including biopsies). CK only requires 4-5 treatments over a week and incorporates a degree of precision in radiation placement that exceeds all other EBRT methods. There have been clinical studies involving CK showing suggest over 5 years but nothing longer than that. There's a patient forum monitored by doctors to use CK on Accuray's (the mfg) website here: http://cyberknife.com/forum.aspx?g=topics&f=2586.

If you need long term studies to give you confidence in the method, then you should consider PBT instead. It has a track record over 10 years w/reported success and limited accounts of ED and/or incontinence following treatment. PBT takes longer and is more cumbersome than CK because it requires about 40 daily treatments over 8 weeks at a limited number of treatment sites around the country. You have to be fitted for a body cast to prevent movement during treatment (not required for CK because the computer program adjusts for body AND organ movement during treatment) and you have to have a water filled ballon inserted in your ass before each treatment to protect your rectum from damage. There are a lot of ex-PBT patients (but not many here) and a big online support group called BOB (Brotherhood of the Balloon --a reference to the water balloon and Bob Marchiki who wrote a book on the treatment) where you can get more detailed info.

Both CK and PBT are covered by insurance but whether your policy will cover it or not will depend on who your carrier is. Some carriers still consider both CK and PBT "experimental" and will not cover them but other carriers do not hold this opinion and will pay for the treatments. The other question about CK and PBT is whether you can get treatment w/a diagnosis of Gleason 7 and PSA 14. Heretofor, CK and PBT have been limited to patients w/Gleason 6 an PSA 10 in order to improve the conditions for success (necessary for positive clinical study results and FDA/medical insurance approval). However, things are changing and providers now seem to be expanding the scope of the patients treated w/CK and PBT to those with more serious cancers.

BTW, HiFu (high intensity frequency ultrasound) is reported as being equally successful (with minimal side effects) in the treatment of early stage PCa, but it is considered experimental by the FDA and is not covered yet (as far as I know) by any medical insurance carriers. The cost is $25k plus travel expenses to Canada, the Carribean or Mexico to receive the treatment and follow up visits to the Canadian or US doctor's offices. Even so, it's also worth a look see while you're doing your research on what treatment to go with.

Good luck!

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Just a couple of notes to what Swingworker wrote above:

In HDR Brachytherapy they do not actually insert seeds and then remove them. Instead they build a template which is temporarily attached to the perineum and several plastic tubes are inserted through the perineum into the prostate. The doctors then insert and remove small radioactive rods in and out of the tubes based on the radiation plan. Sort of like the fuel rods associated with a nuclear reactor. It requires hospitalization for a few days.

There is much conflicting data out there on HIFU. I think a lot of the success depends on the location of the cancer in the prostate with higher success when the cancer in significantly internal to the prostate and less success when it is near the edges. Overall recurrence rates for HIFU are much higher than any form of radiation or surgery.

See http://prostatecancerinfolink.net/2011/07/18/apical-prostate-cancer-and-recurrence-after-hifu/

K

robert1
Posts: 82
Joined: Apr 2011

Hello u2pctis:

I am about 6 weeks out from 88 Iodine-125 seeds. So far, so good. Still using Flomax but expect to drop it soon. The jury stays out for a while no matter what your radiotherapy decision, but Brachyterapy has a longer, improving and unsurpassed cure rate track record.

When doing modern Brachytherapy, the seeds are now stranded together in rows making seed migration pretty much a thing of the past. My doctor used the new "thinseeds" reducing the trauma from the procedure itself.

I travel a lot and have had no issues with airport security. I was given a card to show to TSA just in case, but so far, so good.

I am a Brachytherapy fan mostly because of the lengthy successful history, but in your shoes I would seriously consider and evaluate Proton Beam Therapy and Cyber Knife. Both have solid track records for lower risk patients, but not as much for intermediate and higher risk guys. By the way, most PBT has been modified down to 28 higher dose treatments from the original 40 or so.

There is loads of good information on this site, and given the primary radio therapy choices out there, it may be hard to make a big mistake. In any event, make absolutely sure you pick a wold class practioner.

Good luck and God Bless You,

robert1

jwag63
Posts: 5
Joined: Jul 2011

Im your same age had almost identical biopsy and Gleason score. I chose brachytherapy because it had the least side effects and quickest recovery. My prostate was at 85 mm so I took fenesteride for a year to shrink the prostate before the procedure . My prostate shrunk to 45 mm making the procedure possible . It's been 1&1/2 yrs and still self catherizeing .Prostate size prior should in my opinion be a serious consideration. I work with several men who had the same procedeure and returned to work within 4 days with no adverse side effects. I myself fell into the 2% who had my difficulty of not being able to void my bladder. Now I have to entertain a turp which has not had great success after brachytherapy . I fell if your prostate is large going in it might be something to discuss with your URO doc and oncologist. By the way ED was minimal and no incontinence obviously. I wish u well and God Bless. If your comfortable my phone # is 707-235-0547

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