Gleason six. Two positive specimins. Diagnosed early 2013. Treated March 2013

Initially my urologist somewhat pushed his Da Vinci surgery but he also sent me to HIS radiation treatment center. They offered the 8 week treatment which I chose not to do. After him-hauling around they finally mentioned cyberknife. After a little research it was pretty much a no-brainer. Almost no side effects until now... almost 10 months later. I have been having minor discomfort after sex. Apparently the orgasm might be causing the pain. Not during but the next few days after sex. This was the first time I had this pain and it's slowly subsiding. It's not bad enough to bother me all the time so hopefully it's just a stage of healing. They say the prostate literally dies and shrinks. Little to no ejaculate so it is quite a bit different than when everything was normal. Doctor calls it "shooting blanks". Beats the alternative.

I video'd one of my sessions.... enjoy

<iframe width="560" height="315" src="//www.youtube.com/embed/q4Hp2V1iyl8" frameborder="0" allowfullscreen></iframe>

Well it looks like <object> and <embed>tags do not work even though the notes here say we can use them.

Here is a direct link...

http://www.youtube.com/watch?v=q4Hp2V1iyl8

hopeful and optimistic said:

For some reason, I did not

For some reason, I did not notice the information that you posted about the biopsy?

Consider having a second opinion of the slides of the biopsy by a world class pathologist who specializes in prostate cancer since determining gleason is subjective.

Did you have an MRI or other diagnostic test to have an indication of extracapsular extension? Steven, It's important to know if the cancer is localized, that is within the prostate or in addition outside the prostate. This will be a determining factor for treatment

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What are the credentials of the surgeon? Has he been fellowship trainned? How many robotic surgeries has he performed? etc, etc. There is a steep learning curve for robotic surgery....one needs to perform at least several hundred to be somewhat proficient....thousands are better.

Yes you are right, many docs are self serving.  Remember you are the CEO of your case; these docs work for you. It is important to read books, attend support groups and see multiple docs in various specialties. You need to find the best that you can in each specialty even if you have to travel to Tim buck To.

 

If you need , take a little extra time to make the right decision for you.

 

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Steven, Both SBRT and Robotic Surgery are viable  treatments for men with a Gleason 7 providing that there is no extracapsular extention. Generally SBRT is 95 percent cure effective and has minimal side effects.

There were valid comments written above.

Good idea to see an experienced SBRT specialist for a consultation and visit the cyberknife web site as mentioned above.

 

P.S. Don't worry about your balls falling off ...many of us who had this happen use super glue to reattach

Thanks for the feedback. I did some research on my own, and had a few users shoot me some information. I found that alot of the "Canadian" or domestic pharmacies did ship drugs sourced in India, but I found one that I did order from. When I called the 800 number, I was able to speak to someone in Canada who answerd all questions pretty clearly. http://canadapharmacyrx.com/generic-viagra.html?ProductID=22 is the link I ordered from, just wanted to share with everyone, thank you very much for the messages and support!

Sorry if this message is long.  After my PSA rose to about 4.5, I had a TRUS biopsy in 4/2015 that resulted in Gleason 6 in 2 cores and I was put on AS.  For next year, PSA never went above 5.5.  In April of 2016, and just before 2nd TRUS biopsy, my PSA was 4.4.  Second biopsy resulted in 5 cores positive for Gleason 6 and low agression scores on OncoDX genetic test.  URO recommended CK and I declined.  Had a 2nd opinion top oncologist at Barrett Cancer Center (at Univ of Cincinnati) tell me not to DARE kill my prostate over Gleason 6, but he recommended that I have a multi-parametric MRI to see of maybe there was something worse hiding among the Gleason 6 and explained that a TRUS biopsy is not accurate at all.  I had the mpMRI and they found a suspicious spot and then did an MRI guided biopsy on this spot and it turned out to be a 3+4 Gleason 7 about 18mm size.  Then I learned about real time MRI guided Focal Laser Ablation (You all should read about it!)  I believe it is the best treatment for me because it only burns just the cancer and leaves my prostate intact and functioning.  However, the FLA is not covered by insurance and CK is!  I am a very healthy 67 year old with 48 year old wife of 15 years and very happily married.  The FLA will cost me $20K out of my pocket and I'm trying to decide if it is worth that money to retain my prostate for hopefully another 8-10 years.  I could do the CK, insurance pay for it (I'm still working with employer insurance) and be done with it.  But, I understand that there is no long term data concerning recurrance with CK just like there isn't with FLA.  I would also like to know what you guys who have had CK feel about the chance of me being impotent.  Is sex close to the same after CK?  Does the Viagra really work (I have never tried it)?  I'm trying to decide what to do.  Doctor's have said I'm a perfect candidate for the FLA, and my URO would be more than happy to have me help his return on investment for his CK machine.  Any thoughts?

hopeful and optimistic said:

What does your doc say about

What does your doc say about continuing with AS? 

At Johns Hopkins and some other instiutions men over age 70 continue AS with Gleason 3+4+7

Did you have a second opinion on the pathology of the biopsy by a world class pathologist.....say at Johns Hopkins....deterimining gleason is subjective, and a world class expert to review is appropriate.

 

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Here is information about HIFU

http://csn.cancer.org/node/301487

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SBRT aka cyberknife is around about 10 years and tracking is available for I think about 8 years.....so far very good.

Posters who have had SBRT aka cyberknife can provide specific information about the treatment.

Personally if I were to choose betweeen HIFU and SBRT, I would choose SBRT, since I wonder if current technology is advanced for best results from HIFU. However I suggest you do research about this. At the USTOO.com board there is a disscussion about HIFU, that gives a lot of detail that you may wish to read

 

 

Just wanted to say for the record that real time MRI guided focal laser ablation (FLA) is no where the same as HIFU (High Intensity Focused Ultrasound).  In FLA a fiber optic cable is carefully guided and inserted up into the center of the cancerous lesion.  The other end connects to a laser machine.  The laser is turned on and the tip of the fiber optic heats up.  The temperature is monitored and raised to about 60 degrees C and 'cooks' the cancer from inside out.  No side effects and you keep your prostate!

pavlograd said:

Checking on CK for possible treatment

Sorry if this message is long.  After my PSA rose to about 4.5, I had a TRUS biopsy in 4/2015 that resulted in Gleason 6 in 2 cores and I was put on AS.  For next year, PSA never went above 5.5.  In April of 2016, and just before 2nd TRUS biopsy, my PSA was 4.4.  Second biopsy resulted in 5 cores positive for Gleason 6 and low agression scores on OncoDX genetic test.  URO recommended CK and I declined.  Had a 2nd opinion top oncologist at Barrett Cancer Center (at Univ of Cincinnati) tell me not to DARE kill my prostate over Gleason 6, but he recommended that I have a multi-parametric MRI to see of maybe there was something worse hiding among the Gleason 6 and explained that a TRUS biopsy is not accurate at all.  I had the mpMRI and they found a suspicious spot and then did an MRI guided biopsy on this spot and it turned out to be a 3+4 Gleason 7 about 18mm size.  Then I learned about real time MRI guided Focal Laser Ablation (You all should read about it!)  I believe it is the best treatment for me because it only burns just the cancer and leaves my prostate intact and functioning.  However, the FLA is not covered by insurance and CK is!  I am a very healthy 67 year old with 48 year old wife of 15 years and very happily married.  The FLA will cost me $20K out of my pocket and I'm trying to decide if it is worth that money to retain my prostate for hopefully another 8-10 years.  I could do the CK, insurance pay for it (I'm still working with employer insurance) and be done with it.  But, I understand that there is no long term data concerning recurrance with CK just like there isn't with FLA.  I would also like to know what you guys who have had CK feel about the chance of me being impotent.  Is sex close to the same after CK?  Does the Viagra really work (I have never tried it)?  I'm trying to decide what to do.  Doctor's have said I'm a perfect candidate for the FLA, and my URO would be more than happy to have me help his return on investment for his CK machine.  Any thoughts?

FWIW, CK (SBRT) now has an over 10 year track record of effectiveness.   I was treated in Sep 2010 when some 5 year studies were just being published and I think I saw a 10 year study recently (but I'd have to look for it). 

Basically, SBRT has been found as effective in terms of remission and mortality data as other treatment modalities (including but not limited to IMRT, IGRT and surgery - both open and robotic) BUT with a much lesser incidence of delibitating side effects, which I believe is due primarily to the degree of precision with which the radiation is applied in killing the cancer. 

That precision is at the sub-mm level, can be delivered in 360 degrees and can adjust for body and organ movement on the fly by the radiation operator.  Nothing else comes close to it in terms of radiation treatment and this precision prevents unintended damage to collateral organs -- the rectum, bladder and urethra -- which is the main cause of side effects such as ED, incontenence and bleeding.

After I was treated w/CK over 6 years ago, I had some annoying and troubling PSA variability but that has gone away and my PSA has dropped below 1 (the redline for radiation treatment) and still continues to drop indicating that my cancer is in remission.  Other than the variable PSA readings, I experienced NO side effects whatsoever -- no ED, no incontience and no bleeding.  I took only 3 treatments over a week's time.  I was able to continue working during the treatments and they had no effect on my quality of life whatsoever.  A number of other men on this forum have had the same (if not better) experiences than I did.  Can't do much better than that.

I don't know much about FLA but you can't do much better than CK (SBRT) for the treatment of prostate cancer, provided that you are a qualifieid candidate for the treatment, especially if it can be paid for my your medical insurance carrier.  I'd suggest you consult w/a radiation oncologist at a facility that offers CK for a consultation to discuss it.

Good luck!

I was diagnosed last month, 1 core of 12 at 35%, PSA 12, Gleason 6. I have had no treatment yet, we are still deciding. My radiation oncologist said that I should consider the fact that the side effects of CK beyond 10 years are unknown, because it has only been done for 10 years so far. For that reason alone, he recommended against it.

mikedayton62 said:

I asked a radiation oncologist yesterday

I was diagnosed last month, 1 core of 12 at 35%, PSA 12, Gleason 6. I have had no treatment yet, we are still deciding. My radiation oncologist said that I should consider the fact that the side effects of CK beyond 10 years are unknown, because it has only been done for 10 years so far. For that reason alone, he recommended against it.

The fact that this doctor says nothing is known post 10 years because the procedure doesn't have data that far back (because it is relatively new), seems like FUD to me (Fear, uncertainty and doubt).  I suspect this RO doesn't do CK.  Talk to a CK RO.  At least you will have both sides to consider and they will represent what they do fairly.  I found in my experience of doing the research that each specialist represented what they did very well and rarely were "fair" about other options, well, the conventional RO guys and urologists I visited were in alignment (and then I found out they worked for same conglomerate!).  My PCP was thankfully very neutral, if it wasn't for him I wouldn't have even found out about CK.   My CK experience, like others responding has been very positive.  Granted, my treatment was in April of this year but, everything still works with no lengthy rehab and my PSA is dropping as expected.

I am new to this board and really glad I found it.  Hopefully my question is appropriate for this thread. 

I wasn't too surprised when I learned a few weeks ago that I had PC.  It is very prominent in my family so I'm following in the footsteps of my father, brother and uncles.  However they we all 7+years ago and didn't know about CK.  

My urologist went to robotic surgery immediately and didn't mention CK. I learned about it from a friend.  However, his treatments were 5 times a week for 3 weeks.  Everything I'm ready says 5 daily treatments in a row.   Is it different based on severity or other factor?

For the record, I'm 61 and otherwise in very good health. GS was 3+3=6, PSA 7.8.  Biopsy of 20 only showed 1 area 8% and one suspicious. Because of family history I had regular check up so it was caught early. 

hopeful and optimistic said:

Dan

I am sorry for your diagnosis.

You most likely qualify for  Actiive Surveillance to monitor your cancer, that is closely monitoring the progress or non progress of the disease, and seek treatment only if it progresses. You will not have to take the risk of possible side effects from treatment.

SBRT of which cyberknife is one of the machines that deliver  is given , depending on the doctor in four or five sessions for low and intermediate risk diagnosis.This is done in one to two weeks.

It will be best for you to repost, and start a new thread that will be focused only on you, and will give you input on diagnostic tests, resources and answer questions that are pertinent to you.

Best

 

Moreover, radiation oncology is a fast moving field and some of the info in this old thread isn't valid anymore (or never was to begin with)

My research indicates that SBRT is given in 4 or 5 sessions; not 3 or 4 sessions. I never heard of SBRT given in 3 sessions, so, I would appreciate if you can increase my knowledge and document the 3 session protocol...............thanks

PS Here is an example of SBRT given in five fractions.

cancer: disease control and quality of life at 6 years

Alan J Katz, Michael Santoro, Fred Diblasio and Richard Ashley

For all author emails, please log on.

Radiation Oncology 2013, 8:118 doi:10.1186/1748-717X-8-118

Published: 13 May 2013

Abstract (provisional)

Background

Stereotactic body radiotherapy (SBRT) may yield disease control for prostate cancer in a brief, hypofractionated treatment regimen without increasing treatment toxicity. Our report presents a 6-year update from 304 low- (n = 211), intermediate- (n = 81), and high-risk (n = 12) prostate cancer patients who received CyberKnife SBRT.

Methods

The median PSA at presentation was 5.8 ng/ml. Fifty-seven patients received neoadjuvant hormonal therapy for up to one year. The first 50 patients received a total dose of 35 Gy in 5 fractions of 7 Gy. The subsequent 254 patients received a total dose of 36.25 Gy in 5 fractions of 7.25 Gy. Toxicity was assessed with the Expanded Prostate Cancer Index Composite questionnaire and the Radiation Therapy Oncology Group urinary and rectal toxicity scale. Biochemical failure was assessed using the nadir + 2 definition.

Results

No patients experienced Grade III or IV acute complications. Fewer than 5% of patients experienced any acute Grade II urinary or rectal toxicities. Late urinary Grade II complications were observed in 4% of patients treated to 35 Gy and 9% of patients treated to 36.25 Gy. Five (2%) late Grade III urinary toxicities occurred in patients who were treated with 36.25 Gy. Late Grade II rectal complications were observed in 2% of patients treated to 35 Gy and 5% of patients treated to 36.25 Gy. Bowel and urinary quality of life (QOL) scores initially decreased, but later returned to baseline values. An overall decrease of 20% in the sexual QOL score was observed. QOL in each domain was not differentially affected by dose. For patients that were potent prior to treatment, 75% stated that they remained sexually potent. Actuarial 5-year biochemical recurrence-free survival was 97% for low-risk, 90.7% for intermediate-risk, and 74.1% for high-risk patients. PSA fell to a median of 0.12 ng/ml at 5 years; dose did not influence median PSA levels.

Conclusions

In this large series with long-term follow-up, we found excellent biochemical control rates and low and acceptable toxicity, outcomes consistent with those reported for from high dose rate brachytherapy (HDR BT). Provided that measures are taken to account for prostate motion, SBRT's distinct advantages over HDR BT include its noninvasiveness and delivery to patients without anesthesia or hospitalization.