Walnut

Subscribe to RSS Feed for recent updates
Subscribe to RSS Feed for recent updates

YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

 

SURVIVOR STORIES  :  DISCUSSION FORUM  :  WIVES & PARTNERS  :  TELL YOUR STORY  :  UPDATE YOUR STORY  :  DONATIONS  :  TROOP-C

YANA HOME PAGE  :  DON'T PANIC  :  GOOD NEWS!  :  DIAGNOSIS  :  SURVIVING  :  TREATMENT CHOICES  :  RESOURCES  :  ABOUT US  :  MAIL US

 

  SILVER  
This member is a YANA Mentor This is his Country or State Flag

Tim Castleman lives in California, USA. He was 50 when he was diagnosed in June, 2009. His initial PSA was 9.70 ng/ml, his Gleason Score was 7, and he was staged T1c. His choice of treatment was External Beam Radiation+ADT (Proton Beam with ADT). Here is his story.

Prostate, Right, Needle Biopsy: Benign Prostatic Tissue

Prostate, Left, Needle Biopsy:
1. Adenocarcinoma, Gleason Grade 3+4 = 7, Present in Five of Five Cores, Involving 60% of needle core tissue and measuring 38 MM in length.
2. Perineural invasion by carcinoma identified.

I am 6 ft tall and weighed 210 lbs when I was diagnosed with prostate cancer. My diet was already free of red meat but included some dairy and lots of junk like ice cream and cookies. I increased my daily exercise and stopped all the junk food to drop about 15 lbs since then. I walk 2 to 6 miles daily and ride my bike about 15 miles 2 to 5 times per week. Reading "The Macrobiotic Way" and studying diet in general to further improve mine.

My Sutter Cancer Center (SCC) urologist seems competent enough but with 30 years experience as a surgeon he readily admitted his bias to surgery and due to my age advised aggressive treatment. Prescribed Uroxatral 10 mg daily which is working well for me. The prescription allows for up to 5 refills for a total of 6 months. I asked for and got a referral to a radiation oncologist.

The SCC radiation oncologist declined to allow me to record our meeting but gave an very thorough examination, including a DRE (Digital Rectal Examination), and spent about an hour with me discussing treatment. He recommended surgery as I would have a 25% chance of NOT needing radiation afterwards. To this glass half empty type, that means there is a 75% chance that I WILL need radiation afterwards anyway.

Meanwhile, I continued researching and bought Bob Marckini's book (Note: Call 1-800-Protons and they will send one free) about Proton Beam therapy at Loma Linda, which is a mere 10 hour bike-train-bus-bike trip for me from my home. I do drive, but prefer not to if possible so this was important to me to be able to get there on a bike. Encouraged by Bob's book, I called LLUMC and faxed in my records to find out of I am a candidate for Proton Beam Therapy. Within a day or two LLUMC called back with some screening questions like weight (250 lb limit), tolerance for laying on my back, and insurance coverage. I have passed these screens and scheduled for consultation the last week of October. I am also on a "short list" in case of any openings that may emerge sooner. I can be there with one day notice.

If I were to have surgery it seemed clear the robotic surgery is the cutting edge leveraging technology to improve the procedure dramatically over standard surgery, which seems a brutal and risky procedure to me. During my research I learned that SCC does offer robotic surgery and after a bit of digging found the department head and made an appointment. We had a 20 minute meeting on July 26th that he let me record and he advised surgery also. He concurred with the other doctors that I didn't need any more tests and when I brought up Proton Beam he got annoyed and said the SCC radiation department could do just as good of a job. This doctor also seemed very competent, and if I do go the robotic surgery route I would be OK with him doing the procedure. But I am not convinced this is my only choice.

I consider myself very fortunate to have so many options and pretty good odds of surviving with minimal side effects no matter which pathway I choose. However it seems clear to me that Proton Beam is the best form of radiation treatment, and far less invasive than any form of surgery, so this is my first choice.

The main concern I have now is the length of time until I can begin treatment. I am told by the robotic surgeon treatment should begin within 3 months of diagnoses, and that his appointments are running about 6 weeks out. The radiation oncologist would put me on hormones for a couple months first, then 7-9 months after. The urologist didn't give any time frame, but did give me a 6 months prescription for Uroxatral.

So, waiting for LLUMC means I will add 6 to 8 weeks before beginning treatment, unless a spot opens up earlier. I have decided the risk is worth the superior treatment I believe I will get at LLUMC. Not only do they have the Proton Beam, but they also have robotic surgery and most other types of treatments available according to my actual needs. This fact, along with the overwhelming volume of positive testimonials, convinced me that I will be in the best hands at LLUMC. I am sure the folks at SCC are competent in their fields, but I realize the reality that to a hammer everything looks like a nail.

I am deeply grateful for all the help I have gotten from all who have gone before, and then taken the time to share their experience. This has empowered me to make the best choice by having ALL the information. For example I have learned that some evidence suggests the Uroxatral is pushing back against the cancer now, so that helps. From studying online resources like YANA I also learned the importance of diet and exercise, and by following some simple guidelines I have already improved my overall physical health substantially. No red meat, little to no dairy and animal fat, lots of grains, fruits and vegetables, and here is my contribution to the community: no more than 3 grams fat per 100 calories in any food I consume. It is actually pretty easy, and I find I enjoy food more without all the garbage! So in the end, being diagnosed is not a death sentence, it is a wake up call that is leading to a better life now, and after all we are all dying, its the living that counts!

UPDATED

June 2009

Appointment August 5, 2009 with Dr. C to ask about a hormone shot to help buy time so I can go to Loma Linda. He was ok with that and gave me a one month shot of Trelstar 3.7mg and wants a PSA report the day before my next appointment.

I had a colonoscopy on August 12 and braved it without sedation. I am really glad I skipped the dope because I got to watch the whole thing on a color screen and the good doctor explained everything the whole way. I have been in dentists chairs and suffered far more. It was a bit uncomfortable, but no where near justifying the knock out juice in my opinion. I'm not a tough guy either, its just wasn't that big of a deal. When we pulled the tape off my hairy arm was the most painful really. We took 2 biopsies from mildly suspicious bumps - I think maybe because the good doctor wanted to show me how that part of the nifty instrument worked - but anyway we shall see if I have colon cancer soon. It looked pretty clean in there to me, but what do I know. I asked that copies be sent to my RN at LLUMC.

My nearly vegan diet with lots of fruit, whole grain bread and vegetables is working a treat. I had so foolishly packed on an extra 30 - 40 pounds and left it there for so long it feels good to be getting nearer my correct weight. I'm 6 ft and have recently seen 185 lbs (US) on the scale. I have been walking and riding my bike a lot. I have a simple rule of no more than 3 grams fat for every 100 calories in anything I eat and everything tastes better now that I am not slamming all the sugar, salt, dairy and fat down my throat.

Lastly, I have arranged for a second opinion of my biopsy and instructed a copy of the result be sent to LLUMC.

UPDATED

October 2009

It has been almost 4 months now since my diagnosis June 5, 2009. Two months ago I decided my treatment plan would be headed up by big lifestyle and diet changes, bolstered by hormone therapy and finalized with a round of proton beam therapy at Loma Linda which may be followed with more hormone therapy depending on PSA results. The diet and lifestyle changes are permanent.

So, I have lost about 30 pounds by simply walking a lot, riding my bike often and not eating anything with more than 3 grams of fat per 100 calories. No red meat and very little poultry. Lots of fruit and vegetables and some seafood.

For the past two months I have been on Trelstar, a hormone to block testosterone. PSA has fallen to 1.5 as of September 29, 2009. My consultation at Loma Linda is scheduled for October 6 and 7, 2009 and I hope to return mid-October through mid-December for the series of proton beam treatments.

I don't play games like golf and tennis and as a California native have very little interest in the traditional attractions folks from out of state enjoy. Therefore, while I am in Southern California I will be working on a petition drive to put an initiative on the 2010 ballot to end cannabis prohibition and save California. This useful diversion will keep me busy and therefore is a big part of my treatment plan.

So that's my PCa update for now, I feel good and am very optimistic about my plans. I am fortunate indeed!

UPDATED

December 2009

November 15, 2009 October was consumed by the CCI petition campaign and the trip to Loma Linda to get the pod made and have the initial consultation.

During my visit they did a CT Scan with me in the pod and use that image data to make the gadget that helps shape the proton beam. I met with Dr. Bush and his team for a complete exam and we all agreed to go ahead with the proton beam treatment plan. I'll have 45 treatments weekdays that take about an hour out of my day.

I have to remember to drink two glasses of water about a half hour ahead to fill my bladder. Once I am in the pod and the tech has inserted the balloon everyone leaves the room while the machinery goes to work. A wheel spins to cause the Braggs peak effect and the protons are delivered through the device. The actual exposure time to the beam is about 1 minute and little effect is felt. The beam switches sides each day.

So, I have had 9 of these so far and no problems to report. The technicians are competent and the process seems well known. I was told the computers make the final adjustments and that there is a half inch margin planned in the treatment. This is to compensate for the inevitable differences in size and position despite all the care taken with the pod and so forth.

=====

December PCa update Today I had my 29th treatment of proton radiation therapy at Loma Linda University Medical Center. For these final 17 treatments I have a smaller aperture and bola for each side. Dr. Bush explained that this was the plan so that the initial treatments would also cover a 12mm margin and the seminal vesicles for the first 28 treatments. Yesterday the session took a bit longer as the technicians took more x-rays than the usual 2 taken each treatment to align everything. The extra images were used to re-align everything for these new smaller apertures and bolas.

I really welcome this development as I was concerned about that 12mm margin, but now I understand the approach and just wish I had been more informed about these details earlier. I have also learned there are a wide variety of adjustments and tweaks, including hybrid treatments that use protons for the first half then photons for the second half.

We had our one-hour tour of the other gantries and the "back room" where the protons are made last Sunday. Of course one hour was far too short for me and the whole apparatus was a marvel of tubes and wires and magnets, pumps, meters, valves and all sorts of gadgetry. It is all pretty impressive though smaller than I had envisioned.

I'm now on a regular schedule to start my day with a treatment at 5 AM which works well for me as I wake around 4 anyway. Usually by 5:30 I am in the gym and workout for 30-60 minutes followed by a 30 minute sauna. After breakfast I work online a bit and then go for a walk, hike or ride my bike for a couple of hours. After lunch I do a bit more on the computer and phone until dinner which is often part of some event or another here. Last night it was a nice Christmas party for proton patients, Tuesdays we have a pot-luck dinner in a nearby club house, Wednesdays we get sandwiches and fruit at the Brotherhood of the Balloon meeting and so forth. I think the holidays are a great time to go through treatments here. I have had some urgency and burning that is relieved with Ibuprofen. Dr. Bush says this is normal due to the radiation and will stop when the treatments are done. Overall I feel fine and stay busy.

I am scheduled on Amtrak to Sacramento for Christmas and if everything continues smoothly will return for the last 9 treatments to finish on Friday, January 7. I'm looking forward to the documentaries about our food supply that will be shown at the Wild and Scenic Environmental Film Festival January 15-17. I'll be there to hand out iDrive 55 bumper stickers for the Drive 55 Conservation Project and invite all my friends to come to Nevada City to enjoy this event. Our doc is scheduled to screen on Saturday night and Sunday morning plus we are doing an interview in the media center hosted by SEEJANEDO on Sunday that will be streamed online by Cognizant Productions

Tim

PS: Sorry I got behind on this!

UPDATED

March 2011

March 7, 2011 update. I completed treatment at Loma Linda the first week of January, 2010. While I was finishing up I decided to follow through on a plan I had been working on for several years to open a bike shop. Visit my site to see how that is going now.

I have been riding an electric bike 20 plus miles daily to work and take nightly walks of at least a mile or more. When I had my annual medical checkup in January my PSA has dropped to 1.2. Other than occasional ibuprofen I am not taking any medications at this time.

My diet is mainly fruits, vegetables, grains with some seafood and poultry. No red meat or dairy and I try to stick with things that have less than 3 grams of fat per 100 calories.

No major side effects to report at this time, but I do have a variety of aches and pains that may be just due to natural aging.

UPDATED

June 2012

It has been a bit over two years since I finished Proton beam treatment at Loma Linda and my PSA trend is going the right direction.

There have been no unexpected side effects and my life is back to normal. I still watch my diet, walk at least a mile most nights after dinner and ride my electric assist bike about 20 miles daily to work and for all my shopping and errands. I use an "Easy Seat" to relieve pressure on my anatomy and tailbone and have been "car-free" for two years. I count myself among the most fortunate to have dodged the suffering that so many others are enduring.

I am so glad I took the time to really research the various options and could not have done it without this website, many thanks to Terry and all the YANA men.

UPDATED

August 2013

At this point I have not had a physical for quite a while as I am rather frustrated with the service level available. I have a high deductible so I also have high expectations for the prices doctors charge and find I get better service from all other service providers so I will refrain from the frustration until something serious comes up. At this point there is no longer much semen produced but I have no problem getting an erection. Many nights I am up a few times to urinate but I do drink a lot of water, especially during the summer. There is still a bit of dribble to deal with, which was why I sought a medical opinion in the first place. In hindsight I may have opted for watchful waiting, but on the other hand the gland is scar tissue now so that is one less thing to be concerned about. I'll be 55 in a couple of days so I am living on gift years anyway (my dad and grandfathers all passed before 50) and consider myself the most fortunate person I know. I am still car free and ride my bike everywhere and to work daily at the bike shop I opened after the treatment at Loma Linda was completed.

UPDATED

October 2014

I am still operating Practical Cycle and just passed 22,000 miles commuting there on an electric cargo bike: http://practicalcycle.com/customers/electric-bikes/630-another-ten-thousand-miles-on-my-electric-cargo-bike

I tried a traditional style saddle for a few months and still favor the Easy Seat, even though it looks rather odd it doesn't impact my testicles and that matters more than appearances. Not much has changed except that I have been taking a saw palmetto supplement to help empty my bladder. I chose a quality brand that provides 500 mg per 2 tablet daily dose, 1 in the morning and 1 at night.

In addition to my daily ride I often use an elliptical and a few floor exercises followed by a sauna to round out my workout. My diet remains free of red meat and my weight is stable at 185 lbs. I sometimes take an ibuprofen tablet for lower back pain, and need that less when I invest energy into my workout. Overall I am quite healthy and enjoying a comfortable care-free life.

UPDATED

January 2016

Not much has changed for this update except that I have developed ED (possibly related to the PC and treatment) and mildly elevated BP. I am otherwise very healthy, continue an active lifestyle and have identified a long term solution for the ED.

UPDATED

February 2017

At the ripe age of 58 and after 25 years single I am getting married again on this coming Valentines Day! Business is good and my health is acceptable, though keeping weight off and exercising enough are still challenges. I often meet my goal of 10,000 steps a day, still ride my bike almost every day and still don't eat red meat. Doctor says it is a cyst on my testicle that gives some discomfort from time to time and assures me it is not cancer nor related to the PC event.

Tim's e-mail address is: timcastleman AT gmail.com (replace "AT" with "@")


RETURN TO INDEX : RETURN TO HOME PAGE LINKS