My journey started at the dentist, yup, the dentist. While in the waiting room they handed me a standard medical form to fill out, any allergies, do you smoke etc.. One question was, "Who is your primary doctor", I did not have one, and "Date of you last physical", I could not remember. I only went to the doctor if I had a symptom. I decided to find a doctor and get a physical.
The only reason I mention this is to stress the importance of getting your PSA checked, especially if you are over 50. Most of the people reading this already know the importance of getting your PSA checked. Spread the word! If I did not go to the dentist I would have not have thought about getting a physical. With my type of cancer, there are NO symptoms until it is almost too late to do anything. Spread the word!
Life's a journey not a destination
On the 17th I saw Dr. Frederixon at the Apple Valley Center, when I left, I felt pretty good. There is not a history of cancer in my background, I never smoked, I do not take any medications, I do exercise moderately, although, I could stand to lose a few pounds, so I was feeling pretty good.
08/19: There are days you never forget, some remember exactly where they were and what they were doing when JFK was assassinated, or when planes hit the twin towers, it was after work, I was picking my mother-in-law up at her senior living residence, I was pulling into a parking spot when my cell phone rang, it was Dr. Frederixon. He told me that my PSA came back high, 58, and wanted me to see a urologist, he recommended Dr. Sershon of Metro Urology, Dr. Frederixon said he would make a call and get me an appointment. After dinner my wife and I took my mother-in-law back to her apartment, on the way home I told my wife of the results. I must admit I was feeling a bit overwhelmed. I am basically a positive person so staying positive throughout this process I think will help.
The next day I went to the internet to find everything I could about Prostate-Specific Antigen (PSA) levels, Prostate Cancer and the credentials of Dr. Sershon.
Overall, I learned that a PSA of 58 is not just a little high, it is really high. There is no need to panic, prostate cancer is one of the slower growing cancers and has a good cure rate. Lastly, Dr. Sershon has good credentials, a highly skilled surgeon who is tops in his field, he did his Residency at the Mayo in Rochester, leader in the development of robotic surgery for prostate cancer in Minnesota, and is the Director of the Robotic Surgery Program and Director of the Prostate Cancer Program at United Hospital in St. Paul, MN. I feel really confident and lucky to have Dr Sershon as my doctor.
08/29: First meeting with Dr. Sershon
Dr. Sershon has a good personality, that is a plus. Dr. Sershon gave me a bladder scan which was normal, and a Digital Rectal Exam (DRE). Dr. Sershon did not feel any abnormalities, and recommended a prostate biopsy. He was very informative of the upcoming procedure and gave me some background material on prostate cancer. All of these events seem surreal in a way, because I feel healthy.
9/7: Prostate Biopsy
I drove to his office in the morning and had the procedure done just like he explained. He puts the implement up my rectum and there was a click and a pinch, at first it made me jump. Knowing what to expect, I did not flinch as much the next time I heard the click and pinch. 12 in all. I felt a little queasy, I attributed to not having breakfast. There was a little blood in my urine the first time I went to the bathroom, but that was it.
9/12: CT / Bone Scan
CT and Bone scan day, yippee. Went to United Hospital, drank some green stuff and then was injected with some radioactive dye. Then they ran my body through two different types of scan machines. All in all, I lot of waiting around, the actual tests did not take that long.
9/20: Results and Decision
Dr. Sershon is a good communicator. He explained all the numbers behind the Gleason score, the went over the results of the CT and Bone scan.
- PSA: 58.95
- 7 out of 12 samples tested positive for cancer
- Gleason Score: (3+4) 7 (Grade Group 2)
- Bone Scan: No evidence of skeletal metastases
- CT Scan: Marked prostate gland enlargement, No evidence of metastasis, chest, abdomen or pelvis.
Dr. Sershon went through the results in their totality and outlined options. I chose to have the da Vinci Robotic Prostatectomy surgery. I felt this was right for me for a lot of reasons. First since my PSA was so high, I felt the best thing to do was removal, my quality of life should only change a little. I understood the risk of slight incontinence and ED. Also, once the prostate is removed, there is only recovery, with radiation, it seems there is a longer duration of sickness and recovery. Lastly, if you are going to have robotic surgery, there is no better person than Dr. Sershon. It is a personal choice, there is no right or wrong answer, it is what you feel is best for you, and what you are comfortable with. For me, I did not think twice about it. I scheduled the surgery for the first available time, no sense in prolonging the inevitable.
9/28: da Vinci Robotic Prostatectomy Surgery
My wife and I took an extended weekend vacation to Onalaska, WI, so we did not have to sit around all weekend waiting for Wednesday. It was 42 days from Annual Physical to da Vinci Robotic Prostatectomy surgery. It seems like I am on the fast track.
da Vinci Robotic Prostatectomy surgery was scheduled 4:30pm at St. John's Hospital in Maplewood. I never had any surgery before, so this was a new and unwanted experience. Since I do not drink a lot a water, they had trouble finding veins to poke. Then they shave your belly, the anesthesiologist pays you a visit, and then Dr. Sershon came by to say hi. Then they start the anesthesia and as I can remember, rolling down the hall into the operating room, things were getting fuzzy, there was a lot of stainless steel, then that was it, out like a light.
The operation took a little over three hours, and then a few hours in the recovery room. My wife said I gave some pretty funny answers to the nurses when I was in the recovery room. I do not remember any of it.
At 3am, I was wide awake, the nurse came in and I scared the cr*p out of her when I said Hi. At 8:30 they pulled a foot and a half of drain tube from me, put a bandage on the wound, then unhooked the IV. I was sitting in a chair by 9am. After breakfast, they had me up and walking. Moved kind of slow, and had to walk with my Foley catheter bag. They had me rest, then they took me for another stroll. That was most of the day, rest and stroll, rest and stroll. A nurse came in and gave me instructions on how to care for my Foley catheter and how to change the dressing on my 6 wounds. At 3pm they discharged me with a prescription for pain pills, and a lot gauze and tape.
The Foley was a little uncomfortable, but on the upside, I did not have to go to the bathroom in the middle of the night. If you put a little bacitracin on the tip, entry point, it was a little more comfortable. I took Codeine at night and Tylenol during the day for pain. During the day I would walk around the house, then graduated to walking down the block.
Funny side note: I was pacing around the house and my wife was watching the news and told me to come see. There being interview by a local newscaster was Dr. Sershon. Evidently it was National Prostate Health Month and he was talking about the importance of screenings and men's prostate health.
I only took 4 Codeine pills in all, mainly at night, Tylenol sufficed during the day. I will say the recovery time is lessened greatly when you do the robotic prostatectomy. If you have to have it done, it is the way to go.
I must admit, after the operation, only then did I go to the internet and see how the da Vinci machine worked. I am glad I did it after, the machine looks a little like an octopus with 5 big medal arms. It is amazing how such a big bulky machine can be so delicate.
10/7: Went to Dr Sershon office and had the Foley catheter removed. They emptied the balloon and gently pulled it out. It was not really painful, just a little sensitive. Now was the start of the depends and pads. I now wear depends at night and pads during the day. I tend to leak at night more as I think I am more relaxed.
10/10: Every morning I changed the bandages on the six wounds. Started taking the bus downtown to work. At this point I was wearing a pad during the day and depends at night. I do my daily Kegel exercises to help my incontinence. This exercises really works!
10/14: Post OP Follow-Up
Post Op results in a nutshell
- Gleason: (3+4) 7
- Lymph Nodes: 10 examined, All negative for Tumor (0/10)
- Margins: Uninvolved (negative)
- Seminal Vesicle Invasion: Present (2mm)
Dr. Sershon talked about how the operation went, He told us the surgery went extremely well and what we should expect going forward. For the next two years I get a PSA check every 3 months, then if all is well, every six months for two years, then once a year. So now the waiting begins. I am living my life as normal but daily dreaded the prospect of a non-zero PSA.
12/16: PSA 0.24
This number is not as low as I had hoped! I expected it to be 0.0x something. This result was posted to the patent portal with a remark by Dr. Sershon: "This is low. We will re-check PSA in 3 months". Not sure what to make of the result. Will have to wait until April.
1/17: Attend an ED class sponsored by Metro Urology. They went over the various medications and vacuum pumps to get blood flowing through your penis. I got a prescription for Sildenafil, a Cialis or Viagra type medication. It did help but in the morning I always had a headache.
4/4: At the start I wore Depends at night and pads during the day, then I changed to pads at night and shields during the day, a step in the right direction. It took a while to get the confidence to stop wearing shields during the day, but I did stop. I still will leak a drop once in a while especially when tired, lifting something heavy or a good sneeze. When I am out I have the confidence that I hold it until I find a restroom. I have not had an accident due to not being able to hold it. I still wear the pads at night.
My six wounds are healing nicely. I stopped dressing them a while ago. I must have done something strenuous because the wound right below my belly button opened up. I could not believe how deep your skin is. I kept dressing that one until it healed.
4/17: PSA 0.23
It went down, not by much, but the right direction. Once again on the portal the remark was: "PSA stable, continue observation". The waiting game begins again.
07/13: PSA 0.29
Slightly alarmed, first I thought my PSA was a little high considering I do not have a prostate, now it went up. Dr. Sershon remark this time was: "PSA is stable. Safe to check again in 3 months. If it starts to go up we will consider radiation therapy". I know that the PSA test is not entirely accurate, and this deviation may be within the margin of error, but I am still worried. I am not sure if the margin of error is applicable since I do not have a prostate. After the next PSA test I have an appointment to meet with Dr. Sershon. In the meantime, in August, I have my annual physical, and will get a PSA test then, just to see where I stand.
8/15: Went back to the health club, if I am going to get radiation, I might as well try to get in better shape. Hopefully this will offset some of the side effects. Staying positive that this is just a bump in the road.
8/23: Annual Physical
In great shape, blood pressure, cholesterol, heart rate, all except for rising PSA. I was hoping my PSA would remain flat, but expected it to rise, so when it came back as a 0.32, I was not surprised. It went up 0.03 in one month. More waiting!
10/12: One Year Out PSA 0.38
Had my blood drawn for a PSA test at 8:15AM, received a voicemail on my phone at 3:30pm from Dr. Sershon, he said "PSA is up a bit" and "With this level it is time to consider radiation oncology evaluation. Risk of spread outside of the pelvis very low." His call caused me a little bit of concern for two reasons 1) The PSA results were done in 7 hours, and 2) he called me directly, not his assistant or nurse. I have a consultation with him in six days, in the meantime, my wife and I are going to take a mini vacation to take our minds off the upcoming next steps.
10/18: Dr. Sershon Consultation
My wife and I sat down with Dr. Sershon to discuss next steps. He was very informative answering my questions before I had a chance to ask them. Here was his opinion in a nutshell: He was not too concerned when my PSA was in the 0.2x range as he has had many cases where it was stable at that level for many years. But in my case it was not stable, it continues to rise. He brought up the subject of the Choline C-11 PET scan at the Mayo in Rochester to find the cells but said the scan does not work well with a PSA under 2.0, and he did not want to wait until my PSA reached that level. He said radiation becomes less effective the higher the PSA number gets. Due to my age and health he recommended to do a blanket pelvis radiation. He recommended Dr. Palmer at United Hospital in St. Paul. Dr. Sershon said that radiation therapy is a science and an art and Dr. Palmer is good at both. Dr. Palmer's bio reads: Graduated from the University of Minnesota Medical School in 1992, specializes in Radiation Oncology, and has been in practice for over 25 years. Next step, meet with Dr. Palmer.
10/24: Scheduling a consultation with Dr. Palmer (Radiation Oncologist)
During the phone call I was informed that the meeting would last 2 to 2 and a half hours, a half hour with the nurse to go over procedure and questions, and an hour with Dr. Palmer to go over treatment options and a treatment path. And about an hour for a "Planning Scan". The Planning Scan will help in the planning for the radiation treatment. The treatment will start about two weeks after the consultation. And as you know, there will be forms to fill out beforehand.
11/02: Meeting with Dr. Palmer (Radiation Oncologist)
Dr. Palmer spoke quietly and you had to drag information out of him sometimes, but once you got him going, he did explain things well. Going in, I had an expectation of what my treatment plan would be, but Dr. Palmer introduced a small wrinkle.
As expected he recommended radiation - Image Guided Radiation Therapy (IGRT) and Volumetric Modulated Arc Therapy (VMAT). Dr. Palmer said that VMAT is a new type of Intensity-Modulated Radiation Therapy (IMRT) technique. The machine continuously reshapes and changes the intensity of the radiation beam as it moves around the body. It delivers a more tightly focused treatment to the cancer in a significantly shorter time.
The wrinkle was the recommendation of hormone therapy prior to the radiation treatment. I did not take this into consideration when I went in. He said due to my TNM score of T3b, PSA of 58.95 at start and there was a small seminal vesicle invasion, this put me in the high risk group. He did say on the spectrum of risk I was at the low end of high risk.
He explained that hormone therapy for prostate cancer is used to stop your body from producing the male hormone testosterone, which fuels the growth of prostate cancer cells, this causes the cancer cells to die or to grow more slowly. He did caution that at this time studies concluded that this concept has yet to be proven beneficial. Dr. Palmer went over the side effects of hormone therapy, low libido, hot flashes, weight gain, but pointed out this should be minimal. He did stress I have to drink plenty of water, eat well and get exercise. This would offset some of the side effects of hormone / radiation therapy.
With all that said, he did say that since I was in good health overall, that there should be no long lasting adverse effects to doing the hormone therapy he was suggesting. He was only to give me one shot that would last the duration of the radiation treatment, that would be the only hormone injection I would get. So I decided to go with the hormone therapy in conjunction with radiation to give me the best chance to eradicate the cancer. So before I left I received a 30 mg of Lupron (leuprolide) injection. This should last about 4 months.
The plan is to let the Lupron work its magic for a month, then I would come in for a simulation (SIM) appointment. The purpose of this visit is to outline or map the exact area to be treated, and get an organ map baseline. Then there will be a 5-7 day lag while they figure out the treatment plan. The radiotherapy planning makes sure that the cancer gets the prescribed dose of radiation while normal body tissues get as little as possible.
After the SIM appointment, my first appointment will be a mock radiation appointment. They will do everything except do radiation, then the treatments will start for real after that.
After treatment I was told that the next 2 or 3 PSA tests should be undetectable due the residual effect of the Lupron and Radiation. It won't be until 6 to 9 months after the fact that PSA numbers will be meaningful again.
So now I have to wait until December 1st, I can't wait to get the show on the road and get started.
Peter's e-mail address is: pjgudel AT gmail.com (replace "AT" with "@")