Trying to decide on treatment options

thechef

53 years old. Last year has PSAs of 4, 4.1, 5.75. Biopsy in November. 3 of 12 cores, both sides, 3 of 6 locations (apparently they took 2 cores of each). 15 % of each positive core. Each 3+3=6. 

Started with urologist, who is a robotic surgeon. He brought up seed therapy first, but you could tell he thinks surgery is the gold standard.

He recommended a radiation oncologist to talk about seeds. That doc is pretty confident in that therapy. In Cincinnati, the seed therapy is actually performed by two docs: the radiation oncologist does the planning, a urologist inserts.

So today I was back to a urologist, partner of the first guy, who specializes in seeds.

All the docs say success rate of any therapy (which they describe as conventional radiation, seeds, RP surgery) is 85-90 percent. Drawback of seed therapy seems to be what the backup plan would be if it happens to fail.

I am leaning toward seeds. Interested in any side effects, including whether that poses any risk to my teenage daughters.

After reading here, it seems like I owe it to myself to go visit the proton therapy center at IU-Bloomington.

Any thoughts appreciated.

 

Perry

Samsungtech1

Age

Perry,

Your cancer seems to have been caught in an early stage.  I live in Hampton, VA. There is a proton facility less than a quarter mile from me.  Talking to people, Dr.s , nurses, they live near me, and I would say that they are calling it just an expensive, unproved machine.  You might want to look at stats, not many for proton, but it all helps.  

I was a bit further along, with cancer, but i would go with Cyber knife.    You do not want RP.  You are To young.  

Hope your choice works well.

 

Good luck,

 

Mike

Ron_L

Proton Beam Therapy

Hi Perry...

I am sorry to hear about your diagnosis.

Your numbers are very similar to mine. I was diagnosed in March, 2012 and I was 55 at the time. My PSA was 5.85 at diagnosis and my cancer was stage T1C with a Gleason score of 3+3=6 as well. My biopsy showed three cores positive, on on the left side and two on the right.I went through the same decision process that you are going through and narrowed my treatment choices down to Brachytherapy (seeds) or Proton Beam Therapy. After visiting a local clinic specializing in seed implantation my wife and I were fairly sure that we would take that route, but I had already scheduled an appointment at the Procure Proton Center in Warrenville, IL (I am in the Chicago area) so I decided to keep the appointment just in case.  I am very glad that I did.  The folks at the Procure Center were amazing and the place had a wonderful, caring atmosphere. The doctor that I spoke with was very knowledgable and went out of his way to make sure that I was comfortable and had all of the information that I needed to make a decision. In addition I checked some online resources, The Brotherhood of the Balloon, an online group dedicated to Proton therapy, and You Are Not Alone, a web site where other prostate cancer patients and survivors can share their experience with all forms of treatment. If you haven't checked these resources out I encourage you to do so.  I also talked to several current and past Proton patients about their experience both during and after treatment.

In the end we made the decision to go with Proton therapy. Various studies have shown that the success rate for PBT is similar to that of Brachytherapy but that the quality of life during and after treament is much better with PBT. My treatments last 9 weeks, 44 daily treatments, and I had only minor side effects.  I experienced some fatigue at about the half way point, but I worked during the whole time, and I experience increased urgency in urination.  Both of those went away shortly after the treatments ended.

I went back for my three month follow-up after Thanskgiving and my PSA had dropped to 1.42. I go back again at the end of February for another follow-up.

If you want more information about the treatments or want to ask more personal questions please feel free to contact me directly. You should be able to send me a message through this site and I can give you my e-mail address of phone number.

Good luck with you decision!

...ron

hopeful and optimistic

dear perry,

I recommend that you receive a second opinion on the slides of your biopsy by an expert pathologist who specializes in prostate cancer. Determining Gleason score is subjective. You do not want to to be under or over treated. 

Whatever you do you have time to do research and determine what is best for you. Two treatment opinions that you can also consider are "active surveillance with delayed treatment if necessary" and SBRT.

I suggest that you attend a local support group in your area, "us too" and " man to man" are two national orgaizations that have local chapters.

Additionally I recommend that you have additional diagnostic testing; one test is an MRI using a tesla 3.0 magnet which will indicate where the cancer is , if there is extracapsular extention.

 

 

Swingshiftworker

CyberKnife and HDR BT

In addition to PBT (proton beam therapy) you should consider CyberKnife (a form of SBRT - stereotactic body radiation therapy) and HDR (high dose rate) BT (brachytherapy)

No offense to those who've received PBT, but CK is a more advanced method of radiation treatment that only requires 3-4 treatments over a week instead of 28 or more daily treatments w/PBT.  CK can also control the delivery of radiation to the sub mm level and can adjust for both body and organ movement during treatmetn (which is actually very important because any such movement can dramatically alter the delivery point of the radiation).  PBT cannot do this and in order to make sure that the radiation does not unintentionally cause collateral tissue damage, you are requried to be fitted in a body cast and have a water filled ballon inserted in your rectum during each PBT treatment. 

Several people here (me included) w/a similar diagnosis to yours have received CK with apparent success.  I received CK treatment in 9/2010 and, based on a recent MRI/MRSI scan learned that I am completely cancer free without any side effects whatsoever.  No ED and no incontinence or anything else.  Other men report who have received CK report similar results. 

Men who receive PBT also report low side effects and good success but in order to receive CK you need to live (or move) near a treatment center because so many daily treatments are required.  Not so with CK which can be done w/in a week.  There are also far fewer PBT treatment locations available than there are for CK.

As for LDR (low dose rate) Brachytherapy (or seeds as you call it), it is also reportedly very effective in treating the cancer.  However, the downside of the seeds is that they all remain in your body FOREVER (unless you happen to pass a few out through your urethra which happens due to seed migration) AND you are actually radioactive for about a year (the 1/2 life of the radiation in the seeds, so you can hold small children or be near pregnant women during this time period) AND you wil always set off metal detectors and possibly radiation detectors as well (and have to carry a card that verifies that you have a post-BT patient and not a terrorist).

If you want to go w/BT, the better method is HDR (high dose rate) BT which places the seeds in strings temporarily in your prostate -- a day or 2 at most -- and then removed.  CK is actually modeled on HDR BT. 

The thing you need to worry about w/either LDR BT or HDR BT is how well the RO plans the placement of the seeds and how well the urologist actually places them in your prostate.  Any error in the placement of the seeds or in the dosage of radiation applied to each of the seeds can cause havoc resulting in serious problems -- not only ED and incontinence, but also possible damage to the urethra, bladder and/or rectum as a result of excessive radiation which will probably require surgery to attempt to correct (and correction is by no  means guaranteed).

Don't let anyone rush you.! You have early stage prostate cancer and low PSA numbers and don't need to do anything right away.   If you have no idea what I've just been talking about, do the research and find out so that you can make an informed decision about which treatment makes the most sence for you.  You might also want to consider Active Surveillance until treatment is more clearly warranted.

Good luck!

 

 

thechef

Swingshiftworker said:

CyberKnife and HDR BT

In addition to PBT (proton beam therapy) you should consider CyberKnife (a form of SBRT - stereotactic body radiation therapy) and HDR (high dose rate) BT (brachytherapy)

No offense to those who've received PBT, but CK is a more advanced method of radiation treatment that only requires 3-4 treatments over a week instead of 28 or more daily treatments w/PBT.  CK can also control the delivery of radiation to the sub mm level and can adjust for both body and organ movement during treatmetn (which is actually very important because any such movement can dramatically alter the delivery point of the radiation).  PBT cannot do this and in order to make sure that the radiation does not unintentionally cause collateral tissue damage, you are requried to be fitted in a body cast and have a water filled ballon inserted in your rectum during each PBT treatment. 

Several people here (me included) w/a similar diagnosis to yours have received CK with apparent success.  I received CK treatment in 9/2010 and, based on a recent MRI/MRSI scan learned that I am completely cancer free without any side effects whatsoever.  No ED and no incontinence or anything else.  Other men report who have received CK report similar results. 

Men who receive PBT also report low side effects and good success but in order to receive CK you need to live (or move) near a treatment center because so many daily treatments are required.  Not so with CK which can be done w/in a week.  There are also far fewer PBT treatment locations available than there are for CK.

As for LDR (low dose rate) Brachytherapy (or seeds as you call it), it is also reportedly very effective in treating the cancer.  However, the downside of the seeds is that they all remain in your body FOREVER (unless you happen to pass a few out through your urethra which happens due to seed migration) AND you are actually radioactive for about a year (the 1/2 life of the radiation in the seeds, so you can hold small children or be near pregnant women during this time period) AND you wil always set off metal detectors and possibly radiation detectors as well (and have to carry a card that verifies that you have a post-BT patient and not a terrorist).

If you want to go w/BT, the better method is HDR (high dose rate) BT which places the seeds in strings temporarily in your prostate -- a day or 2 at most -- and then removed.  CK is actually modeled on HDR BT. 

The thing you need to worry about w/either LDR BT or HDR BT is how well the RO plans the placement of the seeds and how well the urologist actually places them in your prostate.  Any error in the placement of the seeds or in the dosage of radiation applied to each of the seeds can cause havoc resulting in serious problems -- not only ED and incontinence, but also possible damage to the urethra, bladder and/or rectum as a result of excessive radiation which will probably require surgery to attempt to correct (and correction is by no  means guaranteed).

Don't let anyone rush you.! You have early stage prostate cancer and low PSA numbers and don't need to do anything right away.   If you have no idea what I've just been talking about, do the research and find out so that you can make an informed decision about which treatment makes the most sence for you.  You might also want to consider Active Surveillance until treatment is more clearly warranted.

Good luck!

 

 

Awesome info everyone. I see

Awesome info everyone. I see a cyberknife facility in Dayton, not too far away.

I also see several people with a positive view of that technology. I have run into a few "review" type articles that are LESS than positive about it, however. They tend to say things like "it's too new to judge." How do I sort that out?

Swingshiftworker

thechef said:

Awesome info everyone. I see

Awesome info everyone. I see a cyberknife facility in Dayton, not too far away.

I also see several people with a positive view of that technology. I have run into a few "review" type articles that are LESS than positive about it, however. They tend to say things like "it's too new to judge." How do I sort that out?

CK is NOT too new to judge!

There are already 5 years studies on the effectiveness of CK, all of which indicate that it is as effective as surgery and other radiation technologies BUT w/o the same risk/degree of side effects.  See, for example:

http://coloradocyberknife.com/first-five-year-outcomes-published-on-cyberknife-radiosurgery-for-prostate-cancer/

http://www.ro-journal.com/content/6/1/3

http://www.radiologytoday.net/archive/rt0711p24.shtml

http://www.cyberknifeofli.com/images/stories/content/PDF/ckprostatetcrtak.pdf

If you want to wait for 10-20 year data, CK will probably be made obsolete by newly developed technologies just as it has surpassed PBT.   Only you can decide "how much" data is necessary for you to make the choice to choose one treatment over another BUT I think there is already a sufficient record w/CK to justify its use now. 

5 years of data was good enough for me.

The fact that CK is NO LONGER considered an "experimental treatment" by many medical insurance carriers, including CA Blue Cross/Blue Shield which paid for my treatment is further evidence that CK is now an accepted method of treatment for PCa and is no longer "too new to judge" it as such.

 

 

Samsungtech1

Cyber knife

I had radiosurgery, now calling it cyberknife, for nodules in lungs.  I did not know it was ck.  it is really neat.  You have two physicists, and a laser Onc, trained in the process.  Plus I had three people in and out of room.  It is weird how the machine rotataes.  I had 24 treatments for nodules.  All nodules disappeared.  I just had scan and it is saying I have damage, radiation, and scars to lungs.  I should mention I had RP and radiation damage to bladder and colon.  

Just from Dr.'s I talked to I would strongly think about Cyberknife.  Cyberknife, from what I have read here, is the best choice.  That is just my opinion.  We all have to choose our path.  

Good luck with your choices.

 

Mike

 

thechef

Swingshiftworker said:

CK is NOT too new to judge!

There are already 5 years studies on the effectiveness of CK, all of which indicate that it is as effective as surgery and other radiation technologies BUT w/o the same risk/degree of side effects.  See, for example:

http://coloradocyberknife.com/first-five-year-outcomes-published-on-cyberknife-radiosurgery-for-prostate-cancer/

http://www.ro-journal.com/content/6/1/3

http://www.radiologytoday.net/archive/rt0711p24.shtml

http://www.cyberknifeofli.com/images/stories/content/PDF/ckprostatetcrtak.pdf

If you want to wait for 10-20 year data, CK will probably be made obsolete by newly developed technologies just as it has surpassed PBT.   Only you can decide "how much" data is necessary for you to make the choice to choose one treatment over another BUT I think there is already a sufficient record w/CK to justify its use now. 

5 years of data was good enough for me.

The fact that CK is NO LONGER considered an "experimental treatment" by many medical insurance carriers, including CA Blue Cross/Blue Shield which paid for my treatment is further evidence that CK is now an accepted method of treatment for PCa and is no longer "too new to judge" it as such.

 

 

Appreciates the thoughts, and

Appreciates the thoughts, and especially the links.

caseyh

Investigate AS & Surgery

 

Perry,

A recent study concludes that patients with Gleason Sixes fare equally well with radiation, radiation with seeds, or surgery. Side effects are also equal, especially when viewed over a 15 year period. I think that you should first determine if AS is suitable for you or more aggresive treatment is needed,  The PIVOT study pointed out that patient's with a GLEASON 6, face a greater risk from surgery than from PCA. If AS is not appropriate for you, I would then take a close look at surgery. Your young age makes this treatment well worth investigating, especially in view of the long term effects from radiation.

Be aware that many urologists are partners with radiology treatment centers. They get a piece of the action. The fact that one of the partners in the urology practice does the seed implants might well be a red flag. You may not be getting a completely unbiased opinion.  Ask them outright if they have a financial interest and seek 2nd opinions.

Good Luck,
caseyh