Every year I have a general check up and as recent as last year, my PSA rating is only 1.3. This year suddenly my PSA is 5.1. My doctor asked me to see a specialist. I saw an oncologist first and he double check my PSA and it gone up to 5.2. He asked me to see a urologist and the urologist told me to do a biopsy. The biopsy resulted in a Gleason reading of 4-9's, 1-8 and 1-7. I'm going to see my oncologist tomorrow. It seems it is spreading so fast, I'm in denial.
I went to see my oncologist yesterday and brought my whole family. We have a long talk and asked a lot of questions. My oncologist asked me to undergo a bone scan and MRI as expected. My doctor thinks the cancer has not yet affected my bone because some of the chemical markers like my Alk PH and creatine is still inside the range. I will be seeing my doctor on Wed after to discuss results of bone scan and prepare for the surgery which will be done by another doctor. I will also be seeing an expert doctor in John Hopkins hospital for a 2nd opinion on Thursday. I hope we can schedule the surgery next weekend or early next week.
To continue, I underwent a Bone Scan and MRI . After I got the discs, I went home and immediately tried to analyze results based on comparing it with what was in the internet. I did not see hot spots but I'm not comfortable looking at some dark areas that might be cold spot areas. The MRI shows I have no prostate enlargement but aside from that I'm not sure what it says. The next day I went to my doctor and he confirmed that the results are good and there seems to be no metastases. Since there is no metastases, a surgery can be done. However, he says it can only be confirmed during the surgery. The next day I went to see a urologist at John Hopkins for my 2nd opinion. He told me the same thing that I need to get a surgery and that only when the surgery is done and the results are evaluated after 3 days that I will know whether I get additional therapy. I tentatively scheduled with him the surgery in 10 days time (the soonest on his schedule) and will see my urologist tomorrow to find out if he says the same thing. It is required that some tests should be done by my primary doctor prior to my surgery so I'm going to see him too tomorrow.
My original urologist can only schedule 11/14/17 for my surgery and I'm not getting enough information on what is going to happen. On the other hand, my urologist in John Hopkins is a top surgeon and he goes over his way to accommodate me by scheduling my surgery, 10 days from my appointment with him (on Oct 30) as a 3rd in that day though he normally do only 2 per day. My other urologist needs to go to a vacation hence my long wait. I also got all the information I need from John Hopkins without actively asking for them. I was given instructions to what I would expect before, during and after the operation. The hour by hour expected occurrence during and immediately after the operation is very informative. They also take care of my FMLA leave form as quickly as possible. There no contest, John Hopkins is the best choice.
On the day of the operation, I was made to wait for 2 hrs for the prep. I have not eaten anything 24 hrs before the surgery and on a liquid diet. I arrived at the hospital 3 hrs before the surgery and I was immediately given all the preparation regardless of being there early. My doctor came to visit me and reassured me that the operation will probably be around 2 hrs instead of 3 or more as I don't exhibit any physical issues that might make my surgery longer like being obese or have enlarged prostate. I talked to him about nerve sparing and again he assured me that this is being done automatically as long as he thinks the nerve are not affected. Other doctors (anesthesiologist, etc.) who are in the team came and asked me if there is anything I want to ask. I signed documents and after 3-1/2 hours I was brought to the operating room. They gave me oxygen and I was still conscious and very cold as the operating room was really cold especially I'm wearing only a flimsy gown.
I wake up at the same area for my Prep, shivering and cold and they immediately gave me more heated blankets. I continue to shiver for 5-10 minutes and I cannot really move as my stomach is painful. I cannot even cough because it hurts to do so. After 20 minutes they asked me if I'm ready to see my family and I said yes.
My family came in one at a time and I talked to them sparingly while sipping chipped ice from time to time to get my dry throat back to normal. My operation lasted 2 hrs but I have to wait 5-1/2 hrs for an available room because of a lot patients in the same predicament as I am.
Finally I was moved to a room and with my daughter assisting me, I requested some hot tea to warm my stomach. I was visited every 4 hrs to get my vitals and changed my catheter etc. I was also visited by a number of doctors, a nurse from my insurance who assured me that I can call them if I need anything additional that the hospital cannot give. I was instructed to do feet flapping, inhale/exhale exercises and other exercises to get my blood going. In the early morning hours my surgeon came and told me that the surgery went well and he did not see anything that might have shown spreading of the cancer to other areas like bladder etc but he says that only the pathology report will let him know how to proceed with my next recuperation treatment. I had to start walking on the next day and though I'm still feeling pain all over, I walked with the nurse and my daughter assisting me for a whole lap 2 times in the corridor area. I was able to leave the hospital at around 2PM the next day after the operation.
My doctor will call me in a weeks time for the pathology report and discuss further treatment, if any and I will go back in 10 days time to remove my Foley catheter.
It's now 11/26/17. I had my catheter removed 10 days after my operation which was done in Oct 31, 2017. The pathology report came about 10 days too and my doctor informed me that I have positive margins and my seminal vesicle and lymphatic are affected though my lymph glands are not. My stage is PT3B. My urologist told me that I should get 6-8 weeks of radiation to kill the remaining cancer cells in my prostate bed and to do it 3 months after the surgery. I consulted my oncologist and he told me the same thing but wants it sooner. My new PSA result 3 weeks after surgery is 0.28. Neither my oncologist or urologist informed me that I need to have an appointment to see a radiation oncologist for the actual procedure until later, so I'm still scheduling my visit to a radiation oncologist this coming Wed November 29, 2017. I have also scheduled an appointment with a different oncologist as well as a panel of specialist from "Best Doctors" a support group from my Health Insurance in order to make up my mind on what would be the right procedure that I would do next. Based on what I read, the best option is for intermittent ADT and radiation therapy. I would prefer IMRT to EBRT but I will see what the radiation oncology tells me first. I also changed my diet ever since I was diagnosed with prostate cancer. I stop eating meat and started eating a lot of fresh fruits and vegetables as well as some supposedly cancer curing plant extracts like dandelion root extract, ginger and garlic. This is all for now.
It's now 3/28/2018. I have since undertaken radiation therapy for 8 weeks which include the pelvic nodes, the prostate bed and all the peripherals. I also have done a 4 month Hormone therapy using lupron and bicalutamide. For the last 3 months, my PSA have been <0.1 so I discuss with my oncologist as well as my radiation oncologist to discontinue the Hormone therapy for now so that we can see if the radiation therapy is successful. I have no problem now with unscheduled urination. I guess instinct has taken hold and my muscles immediately clamp the passage when I sneezed. I started taking in some fish and chicken meat but still no pork or beef. My weight has returned to normal and did not have the side effect of enlarged breast. Over-all I'm happy with the result. I will continue to monitor my PSA monthly for now. I will update again when there is some changes to report.
It is now December 20, 2018. It has been 1 year and almost two months after my surgery. I have also undergone radiation therapy for 10 weeks from Jan 2018 to March and at the same time have hormone therapy for 4 months. My PSA has been consistently <0.1 until last September. Last Nov when I went to my pcp for general check up, the result is 0.1. I am worried so I have taken another PSA check yesterday and it came out 0.3 ng/dl. This is above 0.2 which means my cancer has came back. Please let me know out there if there is somebody with the same experience and what happens next. I will check with my oncologist and try to continue with my hormone therapy and get some more checks.
Today is 04/29/20 Its been 2-1/2 yrs since my surgery. As I said previously, I also had salvage radiation and a 6 month of Lupron and Casodex. After 6 months the PSA increases twice to 0.3 and 0.4. I returned to Lupron for a year and the PSA goes back to < 0.1. After a year I stopped again and the next month it increases to 0.2 then 0.5 on the next month. I will return to Lupron for another 2-yr period.
It's been a while since I last updated my story. I have since changed my medicine frim bicalutamide to Xtandi and from Lupron to another brand. I replaced bic. to xtandi because my psa is creeping up though slowly but consistent. However, I found out that xtandi causes a lot of side effects on my body including hematuria. I'm going to talk to my oncologist at the next date of hormone injection and see whether I can try some other brands out there or go back to bicalutamide. Otherwise, I just recently had bone scan and CT scan and everything seems fine. Thanks God. In hindsight, it might have been preferable not to decide to with surgery as it has just the same effectivity as the other processes according to what I read. I hope I can have 10 more years of stability and hopefully before that time comes, they would have found/perfected the new drugs/theraphies. I continue not eating red meat or processed meat and eating those supposedly herbal foods like dandelion leaves, MNM, etc. because somehow these helps in maintaining my psa. Till next time.
Jun's e-mail address is: juntcmj AT gmail.com (replace "AT" with "@")
