This is CT telling my husband, JP, story hoping it will be of use to help others that are going through this uncertain time. My husband has a family history of prostate cancer. Both his father as well as his uncle had undergo treatment for prostate cancer therefore, he is very vigilant about having his PSA check. About a year ago, his PSA increased to 3.9. My husband voiced his concern with his urologist. His urologist told him to wait 3 months and have his PSA check again. JP was concerned, therefore he had his PSA check only 2 months later. His PSA was 3.3. Urologist stated " it is not cancer since PSA for cancer never go down".
We then waited the "normal" 6 month for JP regular PSA checkup. It is now 4.6. JP once again was concerned and asked for a biopsy. Urologist told JP to wait 6 months and have PSA check again since it is "low". Well, JP waited 3 months and had his PSA checked. It is now 4.8. Urologist agreed to schedule a biopsy. 3 days after the biopsy, we received a call by the urologist informing us that the biopsy showed that JP have cancer and if we can come in at noon to talk. We came to the office and was told that JP has cancer and that there are 2 options open to us. One is surgery and the other was radiation.
We went home that day and talked about his diagnosis which we know very little about as the urologist keep putting my question off, stating that he will give us all the time we need and will answer all our questions when we come back next week. He also wants JP to do a bone scan and a CT scan. The bone scan was scheduled a week later and the CT scan was not yet schedule because the scheduler was not in. I was not happy as I wanted all the test done right away.
That night I brought a book call Prostate and Cancer. I read the entire book and told JP that I am not happy with his urologist, in fact, I'm angry with him for not taking better care of JP. JP has been going to this same urologist for over 2 decades. I also told my husband that I will be managing his medical need from now on and that we are going to MD Anderson. By the way, his urologist staged JP at TIC Gleason score of 9.
After reading the book I did much research and understood the report biopsy report better (I want all report, test...). JP did indeed have a 5+4=9. However, it gets worse (urologist did not tell me). Out of the 12 sample. 11 were cancerous. Out of the 11 positive core: 8 were 5+4, 1 was 4+5 and 2 were 5+5. That means JP have high grade and high volume aggressive prostate cancer.
Back to the story, we are now under the care of MD Anderson. The medical team there is still working on staging JP. We have done CT scan, Bone Scan, numerous blood work. We have seen the urologist, the radiologist oncology. The CT scan show abnormality in his liver so we are doing another CT scan to try and see what it is and possibly schedule a biopsy. It has been 2 weeks since we contacted MD Anderson and they were very efficient in getting JP in, schedule testing in a timely manner, and trying to stage him correctly.
JP and I went back to MD Anderson for blood test and to see Dr. A (Radiation Oncologist) on 5/25/17. PSA has risen to 6.8. T-value is 822. The urologist and the "team of professionals" rule out surgery for JP. They feel that the risk outweighs the benefit of surgery due to JP's weak heart (injection fraction 36) even though JP's cardiologist do not see a problem with surgery as JP is not dependent on the device.
Dr. A stated that JP T-value is high for his age and that we need to really get the T level lower so that JP can have the maximum benefit of radiation. Dr. A wants to start radiation in 3 months. Dr. A's nurse give JP a shot of Lupron which is suppose to last for 3 months. Dr. A stated that he wants JP to continue ADT for 3 years if JP's heart can tolerated it (JP has a pacemaker/defibrillator). Dr. A also stage JP at T-3.
We will see how JP responds to the Lupron in two months. So far, the only side effect that I've observe in JP is fatigue, and slight change of mood. JP is very impatient with me and the kids.
That is all for now. I will update you after our next visit with Dr. A at MD Anderson.
I'm back with update and some clarification:
JP's PSA history: I'm sure there are more PSA tests but I was only able to find documentations for these…
Date PSA Testoster Tot
05/25/17 6.8 822
LUPRON Injection 22.5mg
7/27/17 1.0 <20
Initial Pathology report: 12 core biopsy, 11 positive: 1(4+5) 8(5+4) 2 (5+5) Gleason 9 Stage=T1C
MDAnderson Pathology report looking of same biopsy slides: 11 core (5+4)Gleason 9 Stage=T3b
JP had an appointment with his cardiologist on 7/25. No issue with his heart other than his injection fraction is currently at 30%. JP wanted surgery for a number of reasons: First is that surgery is the only sure way of finding out definitively about the cancer. Whether it is indeed gleason 9 and if it has metastasize outside the prostate. Secondly, if surgery is not successful than radiation can be added. On the other hand, if JP received radiation first and it was not successful, than surgery may not be possible or would be very difficult. Thirdly, JP feels that the psychological effect of "having that thing" out of his body will be beneficial. Lastly, the surgery will remove most, if not all the cancerous cell. Therefore, radiation if needed, will be more successful with less cancerous cell to fight. JP shared with his cardiologist that he would like another professional opinion before he commits to ADT+Radiation treatment. JP's cardiologist personally made a call and asked one of his associated, Dr H., to review JP's medical history. Dr.H graciously squeeze us in on 7/27 (he have a 1 mths waiting list for new patients). Dr. H and one of his associated review JP's medical record as well as interview us. Afterward, Dr H told JP that his prognosis is not good and that he and his associated both agree that the best course of action would not be surgery but ADT for 3 years plus IMRT Radiation. Dr. H advised JP to start therapy sooner rather than later as he stage JP at T3b. Dr. H was very gracious but did not hold back on informing JP that he strongly discourage surgery for the following reasons: JP heart is weak and it is a major surgery consequently,there is a strong possibility that JP will not "make it ", JP primary grade is a 5 so radiation is needed. It is not a matter of if JP will need radiation, it is likely surgery than radiation and ADT. Dr. H does not see any benefit in JP having to take on the extra risk as well as the side effect of going through all treatment modalities. Instead, the best course of treatment is long term ADT therapy (strongly recommend 3 years) and radiation. Dr. H shared that he rarely have patients go through such long term ADT however, in JP's case, it is necessary. After speaking with Dr. H, JP decided that he will "not beat a dead horse" and go with ADT and Radiation. In summary, we consulted 4 Urologist and all 4 recommend JP not to pursue surgery, instead do a combination of ADT plus radiation.
On another note: JP went to MDAnderson to see his radiologist oncologist, Dr A, on 7/27 as well as do some lab work. Dr. A is please that JP is responding well to Lupron. His PSA is down to 1 and his T- is less than twenty. Dr. A took time to explain to us about JP's plan of treatment going forward. He answered all our questions. Next step will be for JP to have fiducials place in his prostate, afterward, JP will go through a simulation and finally JP will receive radiation 5 days a week for 8 weeks. Radiation will start at 45Gy in 1.8Gy fraction, follow by a boost to the prostate and seminal vesicles of 79GY. Dr. A made sure we understood the possible side effect of radiation as well as treatment for some of the side effect if needed.
Side effect of Lupron: pain at injection site lasting 2 weeks, hot flashes, night sweats, fatigue, decrease of cognition, significant loss of libido.
I will update this post after our next appointment which is scheduled for 8/21. Good Luck to All.
JP's e-mail address is: ct62173 AT yahoo.com (replace "AT" with "@")