Ron_L's Journey:

Patient: Prostate Cancer > Adenocarcinoma

Patient Info: Newly diagnosed (has not begun treatment), Diagnosed: over 5 years ago, Male, Age: 60

  1. 1
    • Ron_L
    • Experience with Adenocarcinoma, Prostate...
    over 5 years ago
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    Diagnosed

    Oh No

    I'm 55 and was diagnosed on 3/15 with prostate cancer. My PSA was above 5 at my last routine blood test so the doc suggested a round on antibiotics and a retest. When my PSA hadn't changed he referred me to a urologist who performed a DRE and recommended a biopsy. I had the biopsy on 3/12 and received a call from the Uro on Tuesday night asking me to come to his office on Thursday. Tuesday night and Wednesday were the longest day and a half of my life so far! Anyway, my PSA was 5.85 and they found cancer in one core (10%) on the right side and two cores (5%) on the left side. Gleason on both sides was 3+3. The clinical stage is T1c and the Partin projection for organ contained is 80%. All in all it could be worse. The Uro performs open prostate surgery but he isn't recommending that surgery for me because I am obese and he feels that there could be complications because of my size. He's recommended seed implantation and referred me to a Radiation Oncologist. In the mean time I'm learning what I can and looking at other possible treatments. I am in the Chicago metro area so most treatments are available in this area. So far I am leaning towards Brachytherapy and would be interested in others experience, particularly if you had it done in the Chicago area. The Chicago Prostate Cancer Center seems to have the most experience around here but I would be interested in other options as well.. Has anyone dealt with them? I have also looked at the new ProCure Proton Center at Central Dupage Hospital, which is 20 minutes from my home, so that's a possibility. It would, however, impact my job since I would have to be available for treatments over an 8 week period. Finally, I want to look at RRP, and we have some big names in that area around here. I've heard good things about Dr. Shalhav at University of Chicago Med Center, Dr. Zagaja, also at University of Chicago and Dr. Madler at Northwester Memorial Hospital, but I'm not sure if my size would make me unsuitable for RRP. These docs are busy and I don't want to waste their time if I'm clearly not a candidate. Any big guys on here with any experience with that? Thanks for reading. Sorry for the ramble I'm just trying to get my head around all of this.

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  2. 2
    • Ron_L
    • Experience with Adenocarcinoma, Prostate...
    over 5 years ago
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    Consultation

    Other Care

    I had a great discussion with Dr. Mehta the other day. He is a radiation oncologist with Rush Copley/Riverwest Radiation Therapy Center and was recommended by my Urologist. He spent well over an hour with me talking through all of the various treatment options including AS, surgery and the various radiation therapies. He feel that AS is still an option for me but if I choose to go forward with treatment his recommendation is either external beam or brachytherapy (he is a radiologist, after all :) ).

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  3. 3
    • Ron_L
    • Experience with Adenocarcinoma, Prostate...
    over 5 years ago
    Ron_L's Avatar

    Consultation

    Other Care

    I had a very strange meeting with a robotic surgeon this week. When I called to set up the appointment I was given a couple of options and chose a mid afternoon spot. The day before the appointment his nurse called and asked if I could come later. She said that he wanted me to be at the end of the day so he could spend as much time as needed with me. This was encouraging to me since I had a lot of questions. On the day of the appointment I showed up 15 minutes early to fill out paperwork and then sat in the waiting room for almost an hour. Finally a nurse came to get me and handed me a sample cup and pointed me to a rest room and told me that they needed a urine sample. There was no mention of this earlier, but I was able to take care of business :). I was very surprised to see a large container sitting on the rest room floor with some one else's urine it it! Then it was into an exam room where I sat for another 15 minutes. When the doctor came in he didn't apologize for making me wait or mention the wait at all. H talked for a few minutes about treatment options, which I already knew, then said that he wanted to examine me. He felt my abdomen and did a DRE and then told me that he wouldn't recommend surgery for me because of my size (I'm fat). That was it. He went from wanting to have plenty of time to spend with me to dismissing me after 10 minutes! I had already pretty much dismissed surgery as an option during my research because of my size, but this was a very strange encounter with a doctor. I have two appointments next week, one at the Chicago Prostate Cancer Center to talk about brachytherapy and one at the Procure Proton Center in Warrenville, IL to talk about Proton Beam therapy. I'm also going to a support group meeting at the Chicago prostate Cancer Center on Wednesday evening.

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  4. 4
    • Ron_L
    • Experience with Adenocarcinoma, Prostate...
    about 5 years ago
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    Treatment Choice

    Decision Point

    It's been a while since I updated my profile, so I'm catching up. After going through several consultations and talking to past and current patients my decision came down to either Brachytherapy or Proton Therapy. Both have a good success rate for early stage PCa and both have low occurrence of side effects, so either would have been a good choice. For me it came down to overall quality of life during and after the treatments and my choice was Proton Therapy at the CDH Proton Center in Warrenville, IL. The CDH Center is 20 minutes from my house so that meant minimal disruption to my daily life and I was able to schedule my treatments so that I could continue to work. The Center is also a very uplifting and positive atmosphere with a great staff.

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  5. 5
    • Ron_L
    • Experience with Adenocarcinoma, Prostate...
    about 5 years ago
    Ron_L's Avatar

    External radiation (Proton beam)

    Radiation

    I recently finished 44 Proton Beam Radiation treatments at the CDH Proton Center in Warrenville, IL. The whole experience was very positive and I would encourage anyone recently diagnosed with PCa to take a serious look at Proton Therapy. My treatment process started with a CT Scan simulation at the Proton Center and an MRI at a local medical imaging center. Those were done on the same day and were both scheduled by the nurse at the Proton Center. I am a big man (6'2 and 380 lbs at the time) an the Physicists and Dosimetrists at the Proton Center wanted to be absolutely sure of my treatment plan so they requested a second CT Scan simulation to verify a few things. At this time they also placed small tattoos on my hips that were used to position me on the table for each treatment. A few days later I was set up with an appointment with one of the doctors as the Proton Center to have gold markers placed along side my prostate that were used during the treatments to make sure that I was in the exact same position every day. This process was done under a local anesthesia and took about an hour all together. After the marker placement I was given instructions that told me what to expect when the treatments started including a list of foods to avoid. Basically this list included most common foods that can cause gas since gas can interfere with the proton beam. I was also given a brown canvas bag that included a water glass, a robe and a pair of slippers. I brought these with me to my treatments. My actual treatments started on June 19th. I was asked to get to the center at least 30 minutes before my appointment time and then instructed to drink 24oz. of water and to have that done by 20 minutes before the treatment time. This gives the water time to get into the bladder and helps to protect the bladder from and irritation from the beam. Then I was shown to a dressing room where I undressed and put on a hospital gown and my robe and slippers. Then the Radiation Therapist gave me a brief tour of the treatment room and control room and introduced me to the other Radiation Therapists who would be in the room with me. On most days there were three therapists present. I was then told to remove my robe and slippers and lay down on the treatment table. the therapists were there to help me just in case I needed it. The next step was to inject 6 oz of "anal water" into my rectum to help protect the rectum and raise the prostate up so it could be targeted easier. They then moved the table into place by the gantry and used my tattoos to position me on the table. Once that was done they used a quick X-ray to do the final positioning. They also checked to see if my bladder was full and that I didn't have any gas in my system that would interfere with the beam. I was fortunate in that I always had a full bladder and never had any gas, but I understand that they will have a patient wait until their bladder is full, and they will take measure to evacuate any gas if necessary. After all of that the therapists left the room and went into the control room to activate the beam. Since the Center has one cyclotron and four treatment rooms I would typically have to wait a couple of minutes for the beam to be available in my room (Treatment Room #1). I would hear some mechanical noises from the gantry and that would let me know hat it was time. Then I would hear a series of "clicks" from the gantry as the actual beam was directed to my prostate. The beam was on for 45 second to about a minute. Once that was over the therapists would come back to the room, move the table back to the initial position, help me up and show me to the restroom. then I would change and I was done for the day. I repeated this every week day until August 20th for a total of 44 treatments. During that time I got to know some of the other patients and we had some great conversations in the lobby as we waited for our treatment. Several of us also got together on a couple of evenings for dinner and I have some new friends that I met at the center. the center also holds "Dine Around" events weekly, either at lunch or dinner for current, future and past patients. hose were a great chance to meet others who were being treated at different times during the day and also to get to know some of the center staff. I can't say enough good things about the people who work at the CDH Proton Center! Everyone there is extremely professional and excellent at their jobs, but they are also very warm and welcoming and make what could be a difficult process very comfortable and easy. They go out of their way to protect my privacy at all times and not once did I feel uncomfortable during the treatment process or during any of the nurse and doctor visits. During the 9 weeks of my treatment I would see a nurse and doctor once a week. They would go over some basic questions to see how I was doing and then take as much time as needed to answer my questions. My wife was welcome to join me during these meeting and they answered her questions as well.

    Painless Experience: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
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  6. 6
    • Ron_L
    • Experience with Adenocarcinoma, Prostate...
    about 5 years ago
    Ron_L's Avatar

    Urinary changes (frequency, urgency)

    Side Effects

    At some point during the course of 44 proton therapy treatments I began to experience increased frequency and urgency in urination. I think I first noticed at at about the half way point. These side effects were minor and never affected my daily life. Now that my treatments are over these side effete are getting better every day.

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  7. 7
    • Ron_L
    • Experience with Adenocarcinoma, Prostate...
    about 5 years ago
    Ron_L's Avatar

    Fatigue (tiredness)

    Side Effects

    During the last three or four weeks of my proton therapy treatments I noticed that I was a little more tired in the afternoons. It was never really a problem but i would sometimes find my eyes closing during the late afternoon. Now that I am done with the treatments my energy is returning to normal and I notice an improvement daily.

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  8. 8
    • Ron_L
    • Experience with Adenocarcinoma, Prostate...
    about 5 years ago
    Ron_L's Avatar

    Bladder problems

    Side Effects

    Somewhere around the halfway point of my treatments I started to notice some burning while urinating and some decreased flow. I discussed this with the doctor and he described the effect of the radiation as the bladder getting a mild sunburn. During the last two weeks of my treatments the burning increased and was present even when not urinating. I was given Flomax to help with the flow and a steroid to help with the inflammation and burning and these helped. Once my treatments were over the burning has decreased and is getting better every day.

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  9. 9
    • Ron_L
    • Experience with Adenocarcinoma, Prostate...
    about 5 years ago
    Ron_L's Avatar

    Finished treatment

    Celebration

    On Monday, August 20th I graduated from the CDH Proton Center in Warrenville, IL after 44 proton beam radiation treatments. At the center there is tradition that graduating patients bring in a treat for their fellow patients and the staff in celebration of completing treatment. I had two friends who I met at the center who were graduating the same day so we planned to provide lunch for the patients and staff. I am a competition barbecue pit master so I brought in pulled pork and beef brisket and the other gentlemen supplied side dishes and desserts. It was an amazing day with family, old friends and new friends present and everyone had a great time. they hold a small ceremony for the graduates and my two friends, who were getting treated earlier than me held off on their ceremony so we could graduate together. I was patient number 575 at the CDH Proton Center and was given a certificate, a wonderful card signed by the folks involved in my treatment and a Procure Challenge Coin signifying my graduation and shooing my patient number. I will keep this coin with me forever. While I wish that I never had to go through this treatment, the choice of Proton therapy and the choice of the CDH Proton Center is one that I will never regret. The whole experience was amazing! The folks at the center go out of their way to make the environment one that is uplifting and positive and I would encourage anyone needing their help to seek them out before making any treatment decision.

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  10. 10
    • Ron_L
    • Experience with Adenocarcinoma, Prostate...
    about 5 years ago
    Ron_L's Avatar

    Urinary changes (frequency, urgency)

    Side Effects

    It's now three weeks since my last treatment and the urgency and burning are completely gone. They seemed to hang on and maybe increase slightly for the first week and then started to fade.

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