Patient Forum

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My Journey
KO
Posted: Tuesday, July 03, 2012 2:16 PM
Joined: 5/24/2012
Posts: 22


Thought I would keep a journal, in case it may be helpful to others trying to make the same difficult decision I have had to make. I've done a lot of reading and Internet searches. There are so many options and opinions.....hope I've made the right one! My stats: 65 yrs old Gleason 3+4 = 7 first pathology reading at Moffitt Cancer Center Gleason 3+3 = 6 second opinion at Johns Hopkins Most recent PSA = 7 Prostate size = 69 1993 was first sign of rising PSA with 4 biopsies done along the way (no cancer found)- finally had a saturation biopsy done at Moffitt Cancer on 12/30/11 - 45 cores (3 cores with cancer, 80%, 60%, 40%) in lower right lobe. Moffitt recommended surgery or IMRT as my prostate is too large for focal therapy. After studying both, I was going to go with surgery until I read about cyberknife. I was impressed with Dr. Debra Freeman in Tampa at our first personal meeting. She took a lot of time to discuss CK with me (pro & con) and answered all my questions - without even a referal. Even have her email & cell for any further questions. I've since made arrangements for her to do the CK. There are evidently special fiducials and placement for CK, so she sent them to my urologist with the instructions on placement. 7/3/12 had four fiducials placed thru the rectum - much easier than biopsies and not much pain. I guess in a week or so I will have the scans and then report back.
Allen_E.
Posted: Tuesday, July 03, 2012 7:39 PM
Joined: 8/8/2010
Posts: 666


Hi KO, Congratulations on the downgrading of your Gleason score. Not everyone has that second opinion, although everyone should. The worst is over. Dr. Freeman has been doing this for a long time, so you're in capable, experienced hands. Which protocol will you be following? Five in a row? every other day? and how many Gy each treatment?
- Allen (not an MD)
beachwolverine
Posted: Wednesday, July 04, 2012 2:19 PM
Joined: 1/22/2011
Posts: 31


Dr. Freeman was my RO for successful CK back in December. No side effects, 3 mth PSA was down to 2 from 7; I should have my 6 month result in a day or two. I thought the whole Tampa team was great. Best wishes.
KO
Posted: Thursday, July 05, 2012 2:47 PM
Joined: 5/24/2012
Posts: 22


Thanks Allen_E, beachwolverine and Jimmy. I've read that reading pathology slides is more of an art than a science, and that second opinions are a good idea. Johns Hopkins is the "gold standard" for pathology, so I guess I'll go with their reading (I like it better anyway). Thank you for your comments and input....appreciate all the help I can get. The protocol has not been decided yet, so I will post when it's decided. I'm scheduled for CT & MRI next week, Wednesday
KO
Posted: Wednesday, July 11, 2012 1:23 PM
Joined: 5/24/2012
Posts: 22


Today's update (8 days after fiducial markers placed), had pre-treatment CT and MRI scans done. Took about 45 minutes and no injections. Next step is Cyberknife treatment. Don't know yet what the protocol will be.
ChicoXXX
Posted: Thursday, July 12, 2012 7:25 AM
Joined: 10/10/2008
Posts: 446


KO

 

Rest of the Journey should be easy.

On the "non medical side", ask if they have the capabililty of playing CDs/Tapes that you can listen to during the procedures.  It's a bit interesting/fascinating to lie on the table and watch the arm going all over the place  "for a while".  After an hour or so, it was a little boring for me.  They had music options available , where I had my procedure, but I was allow to bring my own music to listen to to pass the time and relax.

 

 


KO
Posted: Wednesday, July 18, 2012 10:10 AM
Joined: 5/24/2012
Posts: 22


Had to have my CT & MRI scans re-done this past Monday (7/16/12), as the MRI done last week showed some movement, and therefore were not clear enough for CK planning. Over the weekend, I developed what may be a mild case of prostatitis (urgency & burning) - perhaps from the fiducial placement (fiducials were inserted on 7/3/12). So my urologist put me on Cipro for 7 days and had a urine test (haven't had results yet). I guess it was a good thing that treatment hadn't started yet, or I would have assumed the symptoms were related to CK.
Allen_E.
Posted: Wednesday, July 18, 2012 12:51 PM
Joined: 8/8/2010
Posts: 666


I also contracted a UTI from the placement of the fiducials. Dr Katz places them transperineally rather than transrectally, which I think is a great idea.
- Allen (not an MD)
KO
Posted: Tuesday, July 31, 2012 6:51 AM
Joined: 5/24/2012
Posts: 22


Started CK treatment - yesterday was the first. The protocol will be homogeneous and 7.25 Gy per treatment. Mon, Weds, Fri this week and Mon, Weds next week. No device was used to limit body movement as they said those things cause more discomfort and don't really help. Treatment took 45 minutes and I was told everything went fine. So far, no side effects.
Allen_E.
Posted: Tuesday, July 31, 2012 8:48 AM
Joined: 8/8/2010
Posts: 666


Have you had a discussion with your doctor about starting on daily cialis and rapaflo now? I'm coming to think that they ought to be taken prophyllactically by everyone having radiation, unless there's some medical reason not to. The cialis does double duty, protecting the sex apparatus and the urinary apparatus too. Almost everyone has at least some acute irritative urinary response to treatment, and I think that preventing an inflammatory cascade is a lot easier than stopping one after it starts.
- Allen (not an MD)
KO
Posted: Tuesday, July 31, 2012 9:06 AM
Joined: 5/24/2012
Posts: 22


Thanks for the "Heads up" Allen......I've been on daily Cialis for a couple of months. Dr. Freeman wants to wait on the Rapaflo to see if I will need it. I've had a "roto router" procedure in 2005 (TUNA). My flow has been going down hill some since - but is OK. Believe me - at the first sign of a problem....I'll be on Rapaflo!
Linda K.
Posted: Tuesday, July 31, 2012 10:03 AM
Joined: 10/10/2008
Posts: 39


KO,

How were your fiducials placed, transrectally or transperineally? My husband has had two opinions on this.

Linda K.

 


KO
Posted: Tuesday, July 31, 2012 10:57 AM
Joined: 5/24/2012
Posts: 22


I asked if they would do it transperineally, and the urologist said they only do it rectally and they had very few problems. A week after having them placed rectally, I got an infection and had to delay treatment for a week until we could clear it up. So I would say transperineally would be the way to go, if you can.
flyguy909
Posted: Tuesday, July 31, 2012 11:53 AM
Joined: 2/10/2012
Posts: 26


Just for another perspective, I had it done transrectally and it was no problem at all. In fact, alot less of an issue than the biopsy. Also, I've read some posts from guys who've had it done transperineally who have reported it to be a fairly painful experience.
vtrombone
Posted: Thursday, August 02, 2012 9:39 AM
Joined: 6/11/2011
Posts: 44


From my experience, I would never tell anybody to have that procedure done transperineally without being totally sedated. I was wide awake and it was the most horrible experience of my life, and I've passed a few kidney stones so I know a little about pain.
alan katz md
Posted: Friday, August 03, 2012 9:54 AM
Joined: 10/10/2008
Posts: 562


That is becasue you were not properly anesthetized. I put Lidocaine in to the skin and all the way up to the prostate and wait 5 minutes. No feeling after that.  And no risk of infection

Alan J Katz MD JD

Flushing Radiation Oncology

40-22 Main St  Flushing NY

akatzmd@msn.com

 


KO
Posted: Sunday, August 05, 2012 7:01 AM
Joined: 5/24/2012
Posts: 22


3 down and 2 to go. So far I had to start Rapaflo, because of slowed urine flow. Also experiencing some urine and bowel burning and urgency. Nothing major. Have been eating some Activa Yogurt which Dr. Katz recommended - I think it helps.
KO
Posted: Thursday, August 09, 2012 8:16 AM
Joined: 5/24/2012
Posts: 22


Had my 5th and last CK treatment yesterday - now officially I am a "post-toastie". Been having burning urination and bowel movements. Started Rapaflo after the 2nd CK treatment, which has helped with "slow flow". Only been getting up once during the night to urinate after the 2nd treatment, last night I slept all the way through, without getting up. The RO prescribed a Medrol Dosepak (4mg) yesterday, as the burning urination was bothering me. Started taking it last night, and it has really helped already. Today I'm feeling almost normal, but the RO told me that the symptoms peak 2 - 3 days after the last treatment, and get better after that. So, I may have more side effects to look forward to.... We'll see. The CK treatments were really easy - no feeling of getting any radiation. 45 min for each treatment, had some tiredness during days of the treatments, and have not felt like eating much and occasional queezy feelings - but nothing really major.
KO
Posted: Monday, August 27, 2012 10:02 AM
Joined: 5/24/2012
Posts: 22


Short update.....Last CK treatment was 8/8/12. Stopped taking FloMax two days ago, and doing fine without it. Still having some minor urinary urgency, and from time to time weird days of minor bowel frequency. No ED problems. Overall - feeling pretty normal.
KO
Posted: Thursday, November 15, 2012 7:53 AM
Joined: 5/24/2012
Posts: 22


My PSA prior to treatment was 7.1 Just had a 3 month post cyberknife treatment PSA - it is now 1.8 Looks like I'm going in the right direction! Also feeling "back to normal", with no post treatment effects remaining so far. Sexual function normal, no incontinence, no bowel problems.
alan katz md
Posted: Thursday, November 15, 2012 10:22 AM
Joined: 10/10/2008
Posts: 562


Great results!

Alan J Katz MD JD

Flushing Radiation Oncology

40-22 Main St  Flushing NY

akatzmd@msn.com

 


KO
Posted: Saturday, March 23, 2013 9:07 AM
Joined: 5/24/2012
Posts: 22


6 month "post toastie" PSA results - PSA is now 0.7 Continue to have no post cyberknife problems. So far seems I made the right choice.
ChicoXXX
Posted: Saturday, March 23, 2013 10:09 AM
Joined: 10/10/2008
Posts: 446


KO Sounds like good progress. Hope you will continue to keep us informed of progress Chico CK Post Toastie - 2007 ( Patient - not MD or Researcher)
JAV
Posted: Saturday, March 23, 2013 5:39 PM
Joined: 10/29/2010
Posts: 801


KO : Congrats !! You should break the "magic" 0.5 level within the desired 24 month period. And Congrats to you too, Chico. You are an old CK Veteran !! Jim V.

Treated with CK 4-2011 Gleason of 3+4 , PSA 3.7 PSA at 1-13 , 0.4
KO
Posted: Friday, August 02, 2013 3:21 PM
Joined: 5/24/2012
Posts: 22


12 month PSA - post cyberknife - is now 0.6 Looking good so far!
JAV
Posted: Saturday, August 03, 2013 4:27 AM
Joined: 10/29/2010
Posts: 801


KO : Congrats !! You are close to breaking the "magic" 0.5 level !! Almost Party Time. Thanks for the feedback. JAV

Treated with CK 4-2011 Gleason of 3+4 , PSA 3.7 PSA at 7-13 , 0.3
dabang2525
Posted: Saturday, August 03, 2013 2:38 PM
Joined: 5/10/2013
Posts: 12


I had transperineal fiducial placement .I didn't feel anything during the procedure,after the procedure or later.Mine was done by Radiation Oncologist.Cyberknife treatment completed three weeks ago.Some frequency of urination and stool,no other problem.First follow up visit is on August 15th.
dabang2525
Posted: Saturday, August 03, 2013 2:40 PM
Joined: 5/10/2013
Posts: 12


Does insurance company pay for Cialis in a patient with prostate cancer.
dabang2525
Posted: Saturday, August 03, 2013 2:40 PM
Joined: 5/10/2013
Posts: 12


Does insurance company pay for Cialis in a patient with prostate cancer.
radsrus
Posted: Sunday, August 04, 2013 8:29 AM
Joined: 10/10/2008
Posts: 4435


Depends on the company and the policy. The top companies will rise up to the task of getting it covered

 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

 


beachwolverine
Posted: Sunday, August 04, 2013 9:59 AM
Joined: 1/22/2011
Posts: 31


funny
KO
Posted: Tuesday, January 28, 2014 6:02 PM
Joined: 5/24/2012
Posts: 22


My last treatment was 8/8/2012 and today's PSA was 0.6 (same as six months ago). Doc said things are looking very good, prostate is actually smaller. So happy I didn't do the surgery.
JAV
Posted: Wednesday, January 29, 2014 4:02 AM
Joined: 10/29/2010
Posts: 801


KO :

Looking Good, again !!   FYI :  It took about a year for my PSA to go from 0.8 to 0.4.  And I had a slight 0.3 bounce along the way.

JAV


Treated with CK 4-2011 Gleason of 3+4 , PSA 3.7
 PSA at 7-13 , 0.3
 PSA at 11-13 , 0.3

ChicoXXX
Posted: Wednesday, January 29, 2014 9:32 AM
Joined: 10/10/2008
Posts: 446


KO Looking good! Thanks for update
KO
Posted: Tuesday, July 29, 2014 7:45 AM
Joined: 5/24/2012
Posts: 22


Cyberknife treatment 8/8/12 2 years now since Cyberknife.....My PSA is now 0.4 and Doc says prostate feels fine - no lumps and bumps. It's all good so far!
Comeback Kid II
Posted: Tuesday, July 29, 2014 9:09 AM
Joined: 7/10/2014
Posts: 42


Thanks for the update. That's great! If you know anybody else who checks in occasionally and could update us on their progress that would be great.
Comeback Kid II
JAV
Posted: Tuesday, July 29, 2014 4:18 PM
Joined: 10/29/2010
Posts: 801


Congratulations, KO  !!

BTW,  Saw my R.O. today for a six month check-up and don't need to see him again for a year since my PSA is down to 0.2 , 39 months post-toastie.

I was the 26th CaP patient treated and now they have done 71 CaP cases.

JAV


Treated with CK 4-2011.  Gleason of 3+4 , PSA 3.7
 PSA on 7-13 , 0.3
 PSA on 11-13 , 0.3
 PSA on 5-14 ,  0.3
 PSA on 7-14 ,  0.2

KO
Posted: Tuesday, August 18, 2015 10:04 AM
Joined: 5/24/2012
Posts: 22


Cyberknife treatment was on 8/8/12 Today's PSA is still .4 and Doc says prostate still feels fine, still no seeming effects from cyberknife treatment at all. Asked if I should worry that I don't get lower than .4 - but Doc says I still have some prostate tissue and not to worry.
viperfred
Posted: Tuesday, August 18, 2015 6:44 PM
Joined: 10/10/2008
Posts: 852


Hi KO, It may help you if you look at the PSA response of others treated with the CyberKnife. In my opinion 0.4 three years post CK is a good number. At years 6 and 7 post CK my PSA continues to drop. I am a prostate cancer patient threated with the CyberKnife and not a MD. However I think your PSA is great. FredK
JAV
Posted: Wednesday, August 19, 2015 3:22 AM
Joined: 10/29/2010
Posts: 801


KO : In my non-medical opinion, I'm with Fred. Your PSA is below 0.5 and is stable. Stable, IMNMO is the important thing. JAV

Treated with CK 4-2011.  Gleason of 3+4 , PSA 3.7 , two cores positive, 5% & 12%
 PSA on 7-13 , 0.3
 PSA on 11-13 , 0.3
 PSA on 5-14 ,  0.3
 PSA on 7-14 ,  0.2
 PSA on 11-14,  0.2
PSA on 3-15, 0.2 PSA on 7-15, 0.2
alan katz md
Posted: Wednesday, August 19, 2015 5:36 AM
Joined: 10/10/2008
Posts: 562


At three years, my median PSA is 0.4, so you are right where you wnat to be. Like in Fred's case, I see PSA numbers continue to drop 7-8 years out

Alan J Katz MD JD

Flushing Radiation Oncology

40-22 Main St  Flushing NY

akatzmd@msn.com

 


ChicoXXX
Posted: Wednesday, August 19, 2015 11:37 AM
Joined: 10/10/2008
Posts: 446


Thank for continuing to update us. Your progress seems to be right on target. I had my last PSA Check last September and will now be going on a bi-annual Check up . August 2014 - now eight ( 8) years post CK PRE CK PSAs were Dec 2006 PSA 1.30 , Jan 2007 PSA 1.40 ( slight move upward but never high). DRE by Primary Care Physician was reason I was referred to Urologist for Biopsy that led to detection of Gleason Score of 5 (3.2) and 6 (3.3) I had CK last week of Oct and First Week of Nov 2007 ( Five Days ) -- PSA Results FEB - 2008 PSA 0.16 AUG 2008 PSA 0.24 MAR 2009 PSA 0.17 SEPT 2009 PSA 0.37 MAR 2010 PSA 0.19 SEPT 2010 PSA. 0.20 SEPT 2011 PSA 0.20 SEPT 2012 PSA 0.21 SEPT 2013 PSA 0.19 SEPT 2014 PSA 0.23 Sept 2015 - Not Scheduled. Chico CK Patient Not MD
radsrus
Posted: Friday, January 01, 2016 3:43 AM
Joined: 10/10/2008
Posts: 4435


To all on these forums: When you see these postings that have a link to Cancer Support etc, you are being trolled. A series of cancer centers in Nevada is trying to obtain patients with posts that appear to be real but are just an excuse to put in a link to their site. My guess is that if they are that hard up for patients, their quality must be poor, although I have no real way of knowing. Certainly, good centers don't engage in this sort of activity.

Clinton A. Medbery, III, M.D. Southwest Radiation Oncology buddy@swrads.org
super max
Posted: Saturday, January 02, 2016 10:54 AM
Joined: 8/30/2014
Posts: 2


^^ Thanks for posting regarding the spamming. I've tried reporting those posts but to no effect.
KO
Posted: Thursday, March 17, 2016 7:05 AM
Joined: 5/24/2012
Posts: 22


My Cyberknife treatment was 8/8/12. My last PSA on 2/2/16 was .5 - so PSA remains stable. Have noticed a drop in my libido and ability to maintain an erection of late, so I had a testosterone test (which confirmed it is low). I asked my urologist if going on testosterone gel would be "throwing gasoline on the fire" so to speak. He said "possibly" - so I have a prescription for the gel, and am going to have PSA tests more often to see if my PSA rises in response to the testosterone treatment. Any thoughts or advice from my fellow forum friends?
russh
Posted: Thursday, March 17, 2016 3:01 PM
Joined: 3/31/2013
Posts: 24


My cyberknife was 3/16/13 and my psa's are pretty normal,but I also have low libido and low testerone and my uro told me that any kind of gel or suppliments would be like "throwing gas on the fire". I am 63 in otherwise good health so I just deal with it and am very thankful for the cyberknife treatment that I received.
Allen_E.
Posted: Saturday, March 19, 2016 8:59 AM
Joined: 8/8/2010
Posts: 666


There is no evidence for this "throwing gas on the fire" idea.

- Allen (not an MD)
KO
Posted: Saturday, March 04, 2017 9:57 AM
Joined: 5/24/2012
Posts: 22


August 2012 I completed Cyberknife treatment.......update as of January 3, 2017 PSA is .8 - so slightly elevated, urologist says not to worry, that age and other things can cause the elevation. Been on testosterone gel now since March of 2016. So I guess it is not causing a problem after all.
HannahForever
Posted: Friday, March 10, 2017 7:50 AM
Joined: 3/8/2017
Posts: 30


Thanks for keep updating us....Hope every thing works out well
KO
Posted: Friday, October 13, 2017 8:39 AM
Joined: 5/24/2012
Posts: 22


Cyberknife in 2012 My latest PSA is 0.4 - so all good there. My concern now is that I have had blood in my ejaculate for about the last 5 months. My urologist treated with Doxycycline Hyclate 100 mg (antibiotic) and Dutasteride .5 mg (to reduce the size of my prostate). Meds don't seem to help. Any ideas?
 

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