I have been monitoring my PSAs since 1992. Over the last 3 years it has been every 6 months. No treatments administered but am heading towards Cyberknife IMRT and ADT at Georgetown University Hospital (GUH) in Washington DC. ADT for how long is a bit of a debate as you will see. Urologist is Dr. John Lynch, med onc is Dr. Nancy Dawson and rad onc is Dr. Sean Collins. You could find them at the GUH site if you were to google it. Pathology done by National Institutes of Health (NIH) after a non FDA approved prostate fusion biopsy process which used a Tesla 4 parametric approach. 16 cores done and 2 were positive. Previous 2 biopsies were all benign. Great debate since NIH said Glsn 7 & 8. Epstein said Glsn 6 & 8. Bostwick asked to do bcl2, p53 and MIB-1 and ProstaVysion tests as recommend by Dr. Israel Barken, www.pcref.org. They did a path review (not asked) and changed all back to glsn 7s (4+3) and in my mind proved it by doing a particular stain on the 8 and provided a color picture of same. Not sure who you believe in this case nor what any Dr would say. All of the Bostwick tests came back with the term favorable prognosis. Also did PAP, CGA, NSE and IGF-1 which were in the favorable ranges. GUH follows the NCCN guidelines as regards recommended approaches. I will be 74 in a couple of months. GUH is a very heavy user of Cyberknife (CK) having done hundreds of PC folks. In my case they do a CK boost for a week (3 sessions) & then 5 weeks of IMRT/IGRT. I also had the PET/CT sodium fluoride scan & CT pelvic/abdominal scans done, all negative. The NIH process revealed no lymph node and clear seminal vesicles per the report. Been monitoring my PSAs while deciding and they are at or below what the diagnosis level.
Have seen multiple Drs at NIH, Walter Reid Center for Prostate Disease Research, GUH, other uro's all of whom felt that with age surgery, while an option, was not the best. I have to agree. Talked to a cryo Dr and did not feel that was the right fit. Very impressed with the stats, personal approach and ability to answer questions (day and night) by the GUH rad on who is a straight shooter as confirmed by another member of this site. Joined the CK patient forum and had some conversations with Dr. Katz who contributes to that site and became convinced that CK was okay. Everything has side effects, no free lunches anywhere. I have been told that I am an intermediate to high risk patient due to all of this path business. So we start with ADT to shrink the prostate (54cc size). I know the question will become duration of ADT but need to start and we can haggle over how long. Only wrinkle to a degree is the IGRT part will be done using the GUH protocol but at a much closer hospital to my location which uses fiducials and Varian RapidArc for that piece.
More on the journey later.
Since I last posted I have had 3 Cyberknife (CK) sessions in mid August 2012 at Georgetown University Hospital (GUH) in Washington DC under rad onc Dr. Sean Collins. Sessions were an hour each and equivalent to HDR treatments. 45 grey conducted overall. 6.5 Gy daily fraction. Dose 19.5 Gy.
Proceeded on IGRT at a more local hospital for 5 weeks of IMRT/IGRT using Varian Accuray equipment whihc was completed on Sept 25, 2012. In both cases 4 gold fiducials were placed for tracking along with the weekly filming sessions of the Accuray approach for target adjustment as I understand it. So far side effects have been very minimal. A bit of fatigue and some looser stools. Only major event has been nocturia which is being aided by Flomax, 2 capsules a day. Nocturia is a bit bothersome with getting up 3 times a night but otherwise able to rest.
During all of this Dr. Collins had me on a low fiber diet for the entire time of radiation. I am just coming off that diet. Purpose was to reduce rectal issues which to the best of my ability seems to have been a very smart move.Time will tell.
I am on hormone therapy and undoubtedly will be on it for 18 months. That is the source of fatigue but I exercise 5 days a week by walking and doing strengthening exercises twice a week. Hormone being lupron shots for 3 months at a time.
Happy to answer any questions. I have felt confident with the Drs I saw at the National Institute of Health, GUH and the various radiation oncology departments which I interfaced with and was treated by.
Diagnosed in Feb 2012. Had 3 Cyberknife sessions (one week) and IGRT for 5 weeks ending in Sept 2012. Mild fatigue, a need to get up 1 or 2 times a night. No blood in urine or stool. Undergoing ADT (lupron only) for 18 total months which ends Dec 2013. PSA is 0, testosterone is less than 3 and DHT is less than 1.0 at last blood draw. It was my idea to have all 3 blood items checked each time. The only one the med onc and/or rad onc wanted to know was the PSA. Rad Onc says I am doing better than most men. Continuing to see a rad onc and med onc at Georgetown University Hospital in Washington, DC every 3 months for the first year and then every 6 months the second year. Reason for ADT was the original Gleason was an 8 by one well known pathologist or a 4+3=7 by a second well known pathologist. PC found in 2 of 16 cores taken. Paying close attention to diet mainly to almost eliminate red meat. Watching blood pressure, cholesterol and sugar. Am seeing on a quarterly basis my primary case physician and an endocrinologist to pay attention to other health issues that could arise from ADT. So far the only item of concern is glucose which tends to hover a bit above the 100 number and then drops. All other measures are tracking at or below the desired levels.
I have received my last hormone shot which will run out in December 2013. That completes 18 months of hormones monotherapy (lupron) per my medical oncologist meaning an attempt to preclude recurrence. Then we watch and wait and see what happens to my T and PSA numbers as the months transpire. I do have one correction to my original submission. While I was a T1C after my radiation oncologist issued his final report it became a T2B. No lymph node nor metastases involvement meaning NO MO coding. Other wise the YANA posting remains the same.
I have had three oncologist checks made this year. My last lupron shot was in Sept 2013 with that result presumably wearing off in 3 months since it was a 3 month shot. On 1/27/14 my T was less than 3. On 3/6/14 my T was 143. On 6/23/14 my T was 179. PSA is undetectable. I am separately monitoring DHT which had been less than 1.0. Only side effect has been continued ED however I must admit that overall my desire had been declining over the last few years. I have Levitra and have used it and have noticed some erection capability so who knows right now. Otherwise I give thanks each day for life and the blessings it brings sharing love with my family. I am keeping a positive attitude with my oncologist visits now being every 4 months instead of 3 months.
Continuing to see my rad onc and med onc. Latest visit was on Oct 22, 2014 to my rad onc. My hormonal treatments ended in Dec 2013 so T is on a slow rise. T is slowly rising but nothing super charged about same. My PSA remains undetectable. My rad onc considers me a favorable high risk patient and feels the prognosis is good. You can read the rest of my story in the previous posts. Decided to see a Dr about penile injections, etc over the ED issues. Have Levitra but that is not much of an aid.
Recent PSA and T checks in March 2015 showed T rising. It was 193. PSA would in some words be undetectable as shown above (-.1). Have seen a sex therapist in my words and have obtained injection drugs for erections. They do work. So we go forth to the next 4 month check up which is my pattern of life for the foreseeable future.
My PSA as of the last visit to my medical oncologist was undetectable. My T has dropped a bit to 173. I also have my DHT done on a periodic basis separate from my medical oncologist. Current DHT is 8. A possible side effect of the radiation is that I now have noninvasive low grade bladder cancer which is not life threatening but which must be closely monitored. These papillary Ta stage tumor rarely become invasive but they are highly recurrent. Follow on every 4 month visits with my PC Doctors. I have separate Dr to deal with the bladder cancer. My medical oncologist was going to make my visits every 6 months but decided to remain with 4 months.
My story was previously updated showing that I have non-invasive bladder cancer. It is NOT low grade but high grade so am thus undergoing BCG treatments to prevent recurrence. BCG has side effects but it is designed to ward or try to keep from having recurrences of the tumor. If you smoke which I did not do then you need to stop. If you were in Vietnam there could be an association between Agent Orange and Blue and others and bladder cancer. But bladder cancer is not on the Veterans Administration presumptive list of conditions so get a VA disability is difficult. I have a prostate disability from them. Now my current story is that my PSA is undetectable and testosterone is well not very high (less than 200) but I am okay with both of those. My oncologist now sees me every 6 months vs. 4 months. No one can say whether the radiation specifically caused the bladder cancer. One cannot deal in the past but in the present. So if anyone has bladder cancer suggest you go to the Bladder Cancer Advocacy Network and get smart. If you want to know more about BCG then google it or you can email me to find out or call if desired. I am not unhappy having chosen Cyberknife. I am also learning that there are seemingly alot of folks who end up having multiple cancers.
In September 2016 I have completed 4 + years since I completed treatment. All is well as my PSA recently done came in as undetectable. Good news as I will not need a follow up until 6 months from now. For this I am thankful. Other health issues remain but you take the cards you are dealt and go from there.
Recent PSA and T results were <0.1 for PSA and T is very low at 149. In 2015 I developed bladder cancer which my urologic oncologist said was caused by the radiation. I have had several TURBTs and am having an immunotherapy known as BCG on a periodic basis. I have what is known as Ta bladder cancer. Applied to the Veterans Administration for benefits which has recently been granted.
Frank's e-mail address is: fbmarr38 AT gmail.com (replace "AT" with "@")