Posted 11/18/2007 8:53 AM (GMT -6)
I figured I might as well start my journey to help others that are considering radiation treatment.
BPH since 1996
My name is Jim; I’m 54 with a family history of PC, father and two uncles on father’s side; father died 20 years ago at the age of 78 from PC. I have had been diagnosed with BHP for the last 10 years.
--- 20 Jul '06, Lump felt on DRE
The VA Doc went over my info reading the ultrasound reports on my kidney and my PSA results then the DRE was done, she is going to redo all my blood work to get the results up to date in the VA system. She said that my prostate was enlarged on the left side and there was also a lump and with my last PSA of 1.4 and a family history she wishes for me to have a biopsy done.
---27 Jul ’06, PSA Results - Tripling of PSA
---18Sept '06, Prostate Biopsy
Went in at 8:00 AM to get IV started for Antibiotics, since I have Allergies to most, my biopsy is scheduled for 11:30 AM with Dr Ellis. After 3 hour of IV off I was to see DR Ellis, he was waiting for me, in the procedure / exam room with a tech at the Biopsy machine. The doctors said take everything from waist down off. He then jellied the probe and my butt to num things up, after that I got two shoots of a local. The ten core samples were over in about 15 Min. I had to wait 20 Min. after that to make sure I was OK. I then went to the restroom thinking I had to go but it was only colon spasms.
---22Sept '06, Prostate Biopsy Results - 10 sample all negative, Prostate size 36.3 cc
I got the call around two today from DR Ellis’s nurse. It came back NEGITIVE; no PIN’s or signs of cancer. I’m to follow up every six months with a PSA and office visits.
---Oct. ’06- Seen VA neurologist for follow up on neck surgery.
He requested x-rays because the tripling of my PSA along with the hip, back pain.
---Nov '06, Pelvic Hip X-Ray - Sclerotic lesions found on hip
Received a requested copy of an x-ray of my hip and pelvis. I had serve pain early August and September. I had seen my neurologist at the VA in October which requested the x-rays because the tripling of my PSA along with the hip, back pain. The x-ray report reads, 1 cm
sclerotic lesion within the left acetabulum. In addition there is a second sclerotic lesion in the right iliac wing.
***Bone scan recommend to rule out metastatic disease
---12Dec '06, Bone Scan - Hot Spot on Brain
I received the final bone scan report along with the scan on CD.
The report reads as followed.
No abnormalities are detected in the pelvis.
Specifically, no abnormalities are noted in the right ilium.
There is a small area of increased activity noted in the skull or brain.
This is located anteriorly in either the left frontal or temporal bone.
However, this small area of increased activity could also be in the brain tissue itself as Tc-MDP can cross the blood brain barrier.
I have a vascular loop on the brain, first thought to be a brain aneurysm, this might be the activity noted. As for nothing detected in the hip, pelvis, if a sclerotic lesion is 1 cm or less only 4% will be detected on a bone scan. Sorry I forgot to bookmark the
---Mar ’07 PSA 2.6 is still above baseline.
Had 6 month PSA done with reading of 2.6 that is still above baseline. I was put on Levaquin for 30 days. Repeat PSA with fPSA is still 2.6 but free is down to 3%.
--24Sep '07- 6 Month follow-up with DR Ellis
Met with Dr Ellis today to go over my PSA that was taken last week, the reading came down to 2.5 but free was 3%. DR Ellis then did the DRE to feel if my prostate is still enlarged and has any hard spots. The prostate felt fine to him just a little enlarged but nothing to be worried about. He said although my free PSA is down, he feels no biopsy is need to be repeated at this time but would if I want to and if it would put my mind at ease. I said I would feel must better if one was done but this time could we do a 14 core sample, I was going on the advise that I got from this forum. He said fine no problem and if it was still negative, we would still do six month follow-ups with PSAs and biopsies every other year to be aggressive due to family history. The biopsy was schedule for 12 Nov ’07.
--12Nov '07, Prostate Biopsy - 14 sample 2 positive,
---Left Mid Gleason 6 (3+3) at 5 % Adenocarcinoma,
---Left Lateral Mid Gleason 6 (3+3) at 15% Adenocarcinoma -
---Prostate size 40.2 cc
--11 Dec 07, Bone Scan & CT Scan
--18 Dec 07, Bone Scan & CT Scan – Results
Bone Scan, Whole Body
There is increased radionuclide activity on the left side of the skull.
Plain films of the skull show no abnormality.
This is suggestive of metastatic disease.
CT of the abdomen and pelvis
Abdomen: Exophytic cyst measuring 4.9 x 4.5 cm.
Pelvis: The urinary bladder is collapsed with Diffuse urinary bladder wall thickening. Seminal vesicles unremarkable. The prostate is normal in size measuring 4.7 cm in width.
There is a small left fat containing inguinal hernia.
--31 Dec 07, Family Meeting with Urologist
Meeting went well; DR Ellis went over the biopsy and scan results. He said with the biopsy showing two positive sites on the left, he might not be able to do a nerve sparing on the left side but the right side looks good. As for the scans he wishes me to have a head MRI and to see an oncologist. We agreed to go with the set date of 22 Jan 08. We also discussed IMRT and Proton treatment along with my cardiac issues.
--3 Jan 08, Pre Surgery Meeting with Primary Doctor
My primary went over my meds and past pulmonary and cardiac issues. She said no PFT need and will schedule pre-op EKG and blood work. I am to stay off my Plavix until after surgery.
---4 Jan 08, Head MRI
I had my head MRI today both with and without contrast, the results will be sent to oncology for review. Urologist wishes oncology to see me prior to surgery to rule out METS from prostate.
---7 Jan 08, Pre-Op EKG & Blood Work
Had blood work and EKG today; the EKG showed LAFB and needs to be reviews by a cardiologist.
---8 Jan 08, Picked Up MRI Films and Report on CD
Report Impression Reads:
Focal abnormal intramedullary bone signal in the superolateral corner
of the left orbit is consistent with a metastatic deposit.
No intracranial abnormality demonstrated.
Mild chronic ethmoid sinusitis. Tiny retention cyst in left maxillary
--9 Jan 08, Seen Medical Oncology about Bone Scan Results
Well! Today was a busy and great day at the same time. I started off seeing my Psychiatrist which said I doing fine with all the anxiety. I was then off to order a new pair of eye glasses and grocery shop. I finally ended the day seeing Medical Oncology, a DR Rossi, what a great guy. He went over my CT and Bone scans along with my MRI report and film taken this and last month. He feels that there is no way that the hot spot is from PCa and doesn’t even think it’s from any type of cancer. He is going to try to request past MRI films to compare the images. I’m to follow up with him in April. We also disgusted IMRT and with my health concerns and life style, I’m a caregiver for my wife. He feels I would be a good candidate for this type of treatment and will schedule me to see a Radiation Oncology.
---11 Jan 08, Seen Radiation Oncology about Possible IMRT Treatment
I saw Dr McGrath, Radiation Oncologist at Emerson hospital today. We disgusted all the treatments for PCa and side efforts of each, not many I didn’t already know due to this forum. I did review PCdaves Journey and also found a good link about IMRT before hand. I was very open minded about all the treatments and stated that I was scheduled for surgery on the 22 Jan 08. I also told him I had a treatment of choice in mind but would hold off telling him until after our discussion. He did bring up the possibly of a Clinical Trial at MGH that he could start and place me in if I so wished. It was for a higher dose of Gray’s on the IMRT, which I declined. I was also given the option of Proton Radiation at MGH but with the drive time I also declined. In the end my choice was IMRT do to my life style. We will be stating with mapping this Friday, 18 Jan 08. The full treatment will be 42 treatment 1.8 Gy M-F for a total of 75.6 Gy.
NOTE: Reality sat in today when the oncology nurse handed me the ACS registration.
I had teary eyes all the way home.
---16 Jan 08, Receiver Call from HMO
I requested a case manger at the suggestion of my oncology nurse on Monday.
I received the call back today from my HMO, it was from a nurse Dale, and she is going to be my case manager.
---18 Jan 08, IGRT (image guided intensity modulated radiation therapy) Mapping/Simulation
I was taken to the changing room to undress from the waist down and to put on one of those nice hospital gowns with opening to the front. A special contrast liquid was placed into the urethra and a catheter inserted into my rectum. I also received my first tattoos, three of them, one on each hip and one over the penis. A CT scan was then done of my prostate; the whole procedure was done in about 45 min’s.
---31 Jan – Treatment Day One, IGRT started
Well, today is the big day, the start of my radiation therapy and some anxiety did set in but I guess that's pretty much normal. My start time for today only is 2:00 PM after which will be 8:20 daily. I’m to drink 24 oz of water 45 minutes before my treatment time. I live one hour from the hospital so I'll try to get there about two hours early and drink the water there, so I won’t flood the car.
---1 Feb – Treatment Day Two
Woke up at 5:00 AM to get ready to leave my home by 6:15 AM, did the three S’s and made my breakfast, two English muffins and a banana with a 8 oz glass of V8 Fusion. I started myself on a low gassy food, B.R.A.T. diet, this diet was suggested by the ACS for anyone getting RT for PCa, so not to get the runs from the treatment.
---4 Feb – Treatment Day Three
I started the day the same as the other treatment days. I was told that I need to increase my water intake, bladder not full, will try going up to 26 oz of water.
---5 Feb – Treatment Day Four – First treatment talk with doctor
I disgust how I had the runs over the weekend, was told to soon to be from treatment most likely from diet. I did have a sandwich with peppers and onions, I will add those to my do not eat list.
---12 Feb – Treatment Day 9 – Second treatment talk with doctor
All is going fine, no urine, bowl movement, or fatigue, problems
---19 Feb – Treatment Day 13 – Third treatment talk with doctor
I told my doctor about a skin burn on my hips. I was given a treatment skin care sheet which suggested to wear loose fitting, soft cotton underwear, and boxer shorts recommended.
It also says to change soap to something like Dove; I was using Irish Spring which might have metallic in it.
---29 Feb – Treatment Day 21 – Cone down day
This is the day that the beam is fine tuned as to not radiate out to so much near by tissue.
---6 Mar – Treatment Day 25 – Sign of First Side effect
Talked with doctor about slowing of urine stream; we will wait until our Tuesday treatment meeting to disgust if medication is needed.
---10 Mar – Treatment Day 27 –First Side effect Worse
My urine stream almost came to a stop over the weekend; I almost went to the ER. The stream was down to just drips at times. I did hold out and talked to doctor today. He placed me on Hytrin 1MG once a day for the urine stream problem.
---18 Mar – Treatment Day 33 –Side effect
O well, the Hytrin worked to well. I’m now going every 45 min. and every 2 hours at night. I did talk to doctor today about this and we will try every other day or just on the weekends to so if that might help, if not an appointment with my urologist to check my flow is the next step.
---25 Mar – Treatment Day 38 –Side effect
I think my flow problem may be worked out. I’m taking the Hytrin, Tuesdays, Thursday s, Saturdays and Sundays. The outcome is good. I can now wait 2 – 3 hours daytime and 5 hours nighttime, I only need to get up once at night.
--- 31 Mar – Treatment Day 42 – Treatment Completed
Graduation day, I’m both happy and sad at the same time, it’s hard to say bye to my treatment team, and they seem like part of my family. It was also sad saying bye to some of my fellow patients.
Now my new journey starts.
Follow up with radiation oncologist is 28 Apr and first PSA is to be a PSA 50 on 20 May.
Follow up with cardiologist on 29 Apr to go over LAF, enlagred heart, and other heart issues
My first post radiation visit with my urologist is 17 Nov.
---11 Apr – Medical Oncology Appointment
Meet with DR Rossi today, he asked how I was doing and if I have now or have had any side effect during / from my radiation treatment. We talked about my urine flow and how I’m using the Hytrin with good results. We then went over past MRI’s, were he did see the same abnormality on the 2001 MRI as the one taken this year.
---19 Apr –Side Effect- First Time Run’s (This isn’t about Baseball)
Went to an ACS Survivor Caregiver Social today, had a great time but did a big no, no.
I should have known better but the food looked so good, I eat some grilled red peppers.
One would think what’s the big deal with grilled peppers, I wish I knew, I can’t eat them any more since I have had my radiation treatments, they give me the runs. I was told before hand that this was one food to say away from for this reason. To top this off and make thing even worst on the way home we stop for supper and I had green beans, another food I’m to say away from for the same reason, only to make maters worst.
It’s my fault since I knew better but since I’m out of treatment I thought it would be OK.
Looks like Banana Pancakes for breakfast tomorrow!!
---28 Apr – Radiation Oncology Appointment ~ First Follow up
We talk about any side effects and taking my PSA and the doctor agreed with me that since it’s less then 6 weeks, it would be a false reading. We are sticking with doing the first at 50 days (May 20) followed by 100 days (10 Jul) then 7 months (13 Nov) after completion of treatment. First urology follow up has change to 18 Jul. My next Radiation Oncology appointment will be at my one year diagnoses anniversary and 7 month post treatment visit. The PSA 50 and PSA 100 was my idea based on information I provide to the doctor I found online. After this we are going for every 3 months for at less the first 2 years then every 6 months for the next 3 years. This is the ASTRO guide line for PSA checks.
---29 Apr –GI and Cardiology Appointments
Seen my GI doctor first, we talk about my GRED and how the Omeprazole has been working fine by itself. I haven’t taken any of the Nitrostat for over a year for any chest pain from GRED so I’ll no longer be given a RX at this time for it. We talk about my family history for colon cancer and how I’m on a 5 year schedule for getting colonoscopy; my last one was in 2003. I’m now schedule for the scope on 20 Oct.
In the afternoon I was off to see the cardiologist. He want over all my past stress test, seeing that no problems were every found on them. I also had my last echo which shown some mild issues that were of no major concern to him. My EKG was taken had great results. The only thing I need to follow up on at this time, are my carotid arteries with a 30% blockade on my right one, I’m to have a carotid ultrasound on 8 May.
20 May –First PSA
I went to the radiation office at 9:00 AM today to get my blood drawn for my PSA 50.
This blood draw is being done at 50 day after completion of treatment. This was to give a true reading and not one that would have been inference by any inflammation from treatment. I called the office back at 3:00 PM to get the results. The reading is right were it should be 1.16 pertreatment was 2.51 this is decrease of 53%. Next PSA 10 July this will be my PSA 100,
Future Appointments and Events
8 May~ Carotid Ultrasound
28 Aug~ Nurosurgery for CT and review of MRI's and Bone Scan Hot Spot
15 Oct ~Bone Scan follow up for the skull hot spot (Possible Skull Met's?) then every 6 months
21 Oct~Oncologly review bone scan
13 Nov~7 Month post radiation follow up with RO/ First year anniversary of diagnoses
1-3 May '09~ Weekend of Hope ~ Stowe, VT
20 June '09~ Relay for Life ~ NHTI College, Concord, NH ~
In Honor of Men to Men, Concord,NH~ Team Name is Blue Men Group
How I keep my bladder full for treatment:
Drink 8 oz of a fruit / vegetable drink with breakfast
Drink 8 oz of water after breakfast but two hours before treatment
Void 1 ½ hors before treatment time
Drink 24 – 26 oz of water 45 minutes before treatment.
My recommended Diet Is:
Foods to Limit and Why
Greasy, such as grilled peppers / onions (Can cause runs)
Fried, spicy, or very sweet foods (Can cause runs)
Gas-forming vegetables, such as beans, green or any type (Can cause runs)
Milk and milk products (Can cause runs)
Carbonated drinks (Can cause burning on urinating)
Chocolate (Can slow urine flow)
Caffeine drinks and food (Can slow urine flow)
Foods to increase
B – Banana
R – Rice
A - Apple Sauce
T – Toast (English Muffin)
(I was also advised to stop any and all vitamins and supplements, since some can hinder the effectiveness of radiation treatment)
0.7 Sept 01
0.8 Sept 02
1.2 Nov 03
1.3 Nov 04
1.2 Oct 05
3.61 Jul 06
3.2 Aug 06
2.6 Sept 06 19%
2.6 Mar 07
2.6 Apr 07 3%
2.5 Sep 07 3%
Post Treatment PSA
1.16 May 08
0.83 July 08
Family history of PCa, father and two uncles
Link to first post:
Lump found on DRE