Regular physical at age 62, 4 years after the prior one, showed PSA had risen from 2.8 in 2008 to 7.8 in 9/2012 (I had not been aware that my PSA was even being calculated in 2008). I went to a urologist and the PSA was taken again, 7.3, in 10/2012. A biopsy was taken, 15 cores, 4 active cores, two at 3+3, one at 3+4, and one at 4+3. A review of the biospy slides at Johns Hopkins downgraded the 3+4 to a 3+3, but the 4+3 remained the same. I met with a highly regarded surgeon, who recommended surgery. But, I had visited with two work associates who are also great friends who have had alternate treatments - one a Prostracision )seed brachytherapy plus external beam radiation) at Radiotherapy Clinics of Georgia, and one a Proton Treatment of external beam daily therapy for roughly 35 days at U. Florida-Jacksonville. Both were very satisified with those treatments. Both advised me to do extensive research.
I read books, studied the internet sources, many from research hospitals on You Tube, talked to Loma Linda and U. Florida Proton Centers, talked to Radiotherapy clinics of Georgia and other private clinics, etc. I attended a "second opinion workshop" at Charlotte's Presbyterian Hospital, a wonderful experience. The bottom line was that I elected to explore radiation therapy available at Charlotte's Carolinas Medical Center and their Levine Cancer Institute. The surgeon referred me to a radiotherapist, and the net result was a decision to choose High Dose Rate Brachytherapy and Image Guided external beam therapy, with HDRB at the beginning and end of the overall modality, and 7 weeks of IGRT in the middle.
My HDRB starts February 7, 2013.
In the meantime, I ran across extensive research on vitamin D3, and started a 8,000 IU daily dose of D3, well within safety ranges per the material I saw. Please do your own study on nutrients, especially high doses of vitamins. You Tube has numerous medical research hospital presentations on cancer and vitamin D3. Look it up for yourself!
So, I'm anxious to get it started and successfully over with. I'll ask for an updated PSA before we start the HDRB to see what the "velocity" of the PSA is, while also wondering if the vitamin D3 is having a favorable impact.
HDR Brachytherapy took place at Levine Cancer Center (Carolinas Medical Center) 2/20/13, two days ago. A general anesthetic was used. I was awake about 4 hours later. There was no pain, and just the mild bother of a catheter, which I removed at home this morning 2/22/13, went in for bladder ultrasound to see if bladder could be fully emptied on my own. All of that is satisfactory, so as of two days later, there has been no pain...just very mild, almost undetectable soreness where cathodes were inserted. Urinary and bowel functions are normal. Next up, I start 7 weeks of Image Guided/Modulated Radiotherapy - external beam, followed by round 2 of HDR Brachytherapy. I am cleared to play golf next week. So far, I have not experienced side effects, but obviously, this is subject to change during IG/MRT and round 2 of HDRB. Of course, it will be months before checking PSA to see if all this stuff works! The research I continue to read is promising, and diet will be a "controllable factor" for me to work on. Doc affirmed before and after the HDRB treatment that his treatment plan includes treatment for 3 mm positive margin, something I am concerned about as the 4 month old biopsy showed perineural invasion.
On 4/11/13 (this week) I had my second High Dose Rate Brachytherapy, following 25 external beam Image Guided and Image Modulated treatments, which followed the first HDR Brachytherapy. So, I am now done with treatments and we begin monitoring PSA in a few months, I believe initially quarterly and then semi-annually.
The side effects of the first HDRB were inconvenient for about 2 weeks, and I stayed pretty close to home. The catheter/bag came off two days after the first HDRB treatment. Nothing about the HDRB/IGRT/IMRT process has been painful (definition...I never took or needed any pain medication), and three weeks after the first HDRB I was playing golf again and in four weeks was walking and carrying my bag 18 holes, which is my normal game. The second HDRB was even less of an issue, and I'll looking forward to golf about 7 to 10 days after the procedure. The catheter/bag came off the day after the second HDRB treatment.
What I would share with new PC patients:
1. In Charlotte the Presbyterian Hospital FREE Multidisciplinary Clinic is outstanding...don't fail to attend that before choosing a treatment modality.
2. Talk to friends and doctors, do the on line research, and make the treatment choice that is right for you.
3. Pay attention to nutrition information available at both major hospitals, on line, in books, etc. It appears to make a great deal of difference.
4. Study the vitamin D3 information available on You Tube (university medical school research lectures) and other material. There appears to be a lot of effacy represented in these presentations that is not widely publicized or addressed in any of the medical facilities, support groups, nutrition clinics, etc., that I have attended. Do your own research.
5. I have read extensive portions of Doctor Patrick Walsh's "Guide to Surviving Prostate Cancer". It was on my Urologist's list of reference material, and it covers the waterfront on all aspects of the disease, cause, treatments, side effects, outcomes, etc. I will share more about side effects and PSA outcomes as that information is developed. But, for now, my HDRB and IGRT/IMRT (following the standard reported to be used at Beaumont Hospital in Detroit) has modest initial side effects. More importantly, my doctor shared about Beaumont's 10 year cure rate, etc., from clinical studies conducted there. Beaumont appears to be a leader in this combined modality and related clinical trials. In addition, according to nurses, docs, books, etc., there is no residual radiation from HDR Brachytherapy as there is from Low Dose Rate seeds, a real plus in light of my 5 very young grandchildren, whom I love to have sit in my lap while I read to them.
History: Diagnosed with 7.8 PSA 9/2012, retested in 10/2012 at 7.3, retested in 1/2013 at 8.1. 4 of 17 cores) 10/2012 were active, moderate volume, one core 4/3, one 3/4, two 3/3. Biopsy slides submitted to Johns Hopkins for re-evaluation, and they downgraded the 3/4 to 3/3, no other revisions. Treated with High Dose Rate Brachytherapy 2/20/13, then 25 Image Guided External Beam RT in a six week period, then another High Dose Rate Brachytherapy 4/11/13.
Very near term side effects were some discomfort in urinary function, fairly loose bowl movements for a week or so, gradually improving, back out on the golf course in 3 weeks or so (walking/carrying clubs, 18 holes), and in six weeks playing lots of golf, feeling that the 5.5 mile walk with clubs on my back was highly beneficial in cleansing my body of toxins, dead cell material, improving overall cell vitality vial fluid intake, exercise, vitamin D3 and nutrition. Initial ED was worrysome, but that improved over several weeks. Cialis was immediately benefical when taken a few weeks later. By June I was playing golf as well as ever, my brother and I won our flight in his member guest tournament, and life was mostly back to normal. Status at 8/20/13: Urinary function better then before treatment...minor urgency but not often. Rectal function normal, noting that dietary change to more salads and high fiber breakfast (oatmeal, Cheerios, flax, etc.) leads to some increased urgency but with very predictable timing. ED outcome is diminished, but Cialis works very well to help with this, and the spontaneous random night time automatic erections are impressive... just as good as ever, even when no Cialis has been used in weeks.
The dramatic reduction in PSA is far better than I had expected, doctors were very pleased. Ever since conducting my pre-treatment choice research, I've been taking 8,000 I U of Vitamin D3 in winter and 6,000 IU in summer, avoiding red meat and dairy, eating large salads, salmon, drinking V8 and tomato juice, putting blue berries on my cereal, drinking large volumes of regular iced tea, etc., and it is an interesting question as to whether or not the Vitamin D3 regimine and dietary changes have had a large impact on the wonderful PSA decline 4 months after the HDRB and IGRT treatments. Do your own research...I have accumulated hundreds of hours of reading material and video medical university research material on prostate cancer, Vitamin D3, prostate cancer epidemiology, micro-biology regarding Vitamin D3 and nutrition, etc. To me, the research is conclusive, but I am not a medical professional, and I do not feel competent to adivse on diet, nutrition, Vitamin D3, exercise, etc. However, I am convicted that my vastly improved PSA is a result of skillfully applied HDRB and IGRT, diet, exercise, and vitamin D3 enhancements. FYI, YouTube has very many hours of medical university research on Vitamin D3 and Prostate Cancer, nutrition, PC microbiology, etc.
Update 2/24/14, one years after initial High Dose Rate Brachytherapy, 10 months after second HDRB and 25 external beam image guided treatments: PSA is down to .4, docs are elated - "right on target" with desire to be under 1.0 PSA. Urinary function without Flomax is OK, better with Flomax, will continue with that for 6 months or so, and see what happens. ED - things are a little better from low point at 8 months post treatment, electing to re-start Cialis, using Canadian pharmacy referred by doc. I have researched vitamin D3 in far greater detail, and had my serum (blood) vitamin D checked at my 12/26/13 physical: I had increased oral vitamin D3 to 10,000 IU daily, and even with that my serum vitamin D is only 51 ng/ml. That's not bad, but the doc concluded that I must have had sever vitamin D deficiency for decades, which we know contributes to the frequency of Prostate Cancer. I feel that, based on numerous clinical trials involving vitamin D3 and co-modalities of radiation or chemo, my early decision to take 8,000 IU daily vitamin D3, later 10,000 and now 15,000 IU daily during winter, has strongly contributed to the efficacy of radiation treatments and my prompt recovery of "better than new" urinary function, and slowly improving ED situation. I recommend that each PC patient be tested for serum vitamin D, and consult with the research material and your doctor on aggressively ramping up your vitamin D blood levels with oral supplements. Read/view the extensive research on PC and vitaminD on You Tube. Bottom line, I am pleased with my choice of high dose rate brachytherapy and my choice to aggressively take oral vitamin D3, avoid red meat and dairy, get more exercise, etc. Let's be Prostate Cancer WARRIORS, using every weapon we can access to defeat and destroy prostate cancer in ourselves and in the guys coming behind us! Do the research!!
Update August 18: 6 month PSA test shows PSA down to .2. The rate of decline from 8.1 pre-treatment to .7, .4, and now .2 is encouraging. Plan to stick with as much cruciferous veggies as possible, daily doses of vitamin D3, avoid red meat and dairy, etc. Along with testing PSA, I had my serum vitamin D tested - only up to .61 ng/ml, which is a little above average. I will test this every six months, just as with PSA, aim to attain 90 or so ng/ml - high end of normal range. Discovered not all generic Flomax equivalents are not the same - 2 versions from pharmacy didn't work well, 2 others work great. If you're not getting consistent results from Flomax equivalents, have your pharmacy look up the vendors, match good results and bad results with specific vendors to see if the vendor is the issue.
For those of you considering high dose rate brachytherapy (2) combined with image guided external beam radiation (25), that combination has worked well for me, so far. Radiotherapist and urologist are both pleased, as I am. I do feel that high doses of vitamin D3 are also part of my good outcomes - do the research on vitamin D3, ask your hospital nutritionists about it.
Treated with HDRB and IGRT in early 2013. PSA trend approximately every 6 months - 8.1 before treatment, then .7, .4, .2. and in 4/2015 .1. Nice. Urinary issues - better than before treatment. Not much of a problem after first 6 weeks, except I find taking the Flomax generics helps keep things working great. Note: Not all generics are the same! Work with your pharmacist to find out which generic works best for you. ED. Thought ED was going to be a huge issue at the 6 month to 1 year timetable, but at 2 years it's working pretty well, no pills, trending up (pun intended!).
I have taken supplemental vitamin D3, 8,000 IU daily before and during radiation treatments, then 15,000 daily to try to get my serum vitamin D up to 100ng/ml. I'm finally at 99 ng/ml, so I'm cutting back to 10,000 IU daily. Do your own research, ask which is the greater risk, cancer coming back or vitamin D toxicity. I'm not a medical professional, but I found it easy to make that decision based on the medical school and university research that is so available on the net, but you and your doctor must make that choice. (I made mine in spite of little support from the clinical docs....READ THE RESEARCH!!!!)
I'm sticking with a 6 month check up schedule, still aiming on having my serum vitamin D tested twice a year, will stay on 10,000 IU vitamin D3 daily. The other thing I do is have at least 5 "Green Smoothies" weekly, if I'm not traveling (retired, but consulting now and then). Again, Read the research on green smoothies....purees, not "juicing".
Bottom line: Very happy with 2x HDR Brachytherapy and 25x IGRT, heavy vitamin D3 until reaching 99 ng/ml serum level, and believe in the efficacy of green smoothies for all sorts of good reasons. Good luck, guys! Be sure to inform friends about PSA testing, etc. Friends don't let friends believe the US Government lies about not getting PSA tests annually after 50 (wise first time at 40 or younger, then talk to your doc about the next step). Read the Johns Hopkins report about Prostate Cancer and diet, the effect of red meat and dairy on PC, etc. Why doesn't the government publish this stuff??????
PSA continues at .1. Doc's PA said only 25% of radiation patients drop to 0% PSA, but I have seen no data or research to support that. I continue to take Flowmax generic but somewhat less frequently...I simply forget. Every other day works fine. ED situation is acceptable and improving - a nice surprise. I do find that "green smoothies" followed by coffee passes remarkably quickly, same with oatmeal and coffee, so I don't have those for breakfast and then head for the golf course (I walk and carry my clubs to get some exercise). My latest Vitamin D serum level is 77, down from 99 six months ago. I had backed off the supplement a little during the summer, but will increase that with winter coming. My personal target is 100 ng/ml. Do your own research. The Vitamin D Council has some guidelines for doses, serum level, comments on toxicity, etc. In addition to Vitamin D supplements (10,000 IU/day currently), I take selenium, some moderate levels of vitamins, etc. The thing I feel is most important is avoiding Red Meat and Dairy products - any grass eating animal protein. Look up cancer and red meat/dairy - plenty of clinical trials, research, etc., out there. Being a Cancer WARRIOR is a daily challenge - we are only victims if we choose not to fight! Learn. Apply. Fight. WIN!
Update for spring, 2016. PSA still hovering at .1, and the docs are delighted with that. I'm still taking vitamin D3, serum level at last test was 99 NG/ML, which is good, but I'm shooting for a little higher. Do your own research on efficacy and toxicity. All aspects of "side effects" 3 1/2 years after HDRB and IGRT are good to great - no urinary issues, and ED is slight. Taking exercise classes, still walking 18 holes (using push cart now - give my back a break from carrying) comfortably. Being 67 and a PC Warrior - it's a great time of life! Next doc visit and PSA and vitamin D3 serum level checks are pretty soon. I apologize for not updating following spring PSA check - must have been in a hurry to get the golf course!
December 12, 2016: PSA and Vitamin D3 update. For the first time since my 2013 HDRB/IGRT treatments, I reached a 0.0 PSA rating! Nice! Before, during and after the doctors did their part, I've been doing my part - huge cut back in red meat and dairy protein - a major cause of Prostate and other cancers, and moderate doses of vitamin D3 (currently 10,000 IU/day), lycopene, and selenium, along with one multi-vitamin daily. Search you tube for medical university research hospital presentations on vitamin D3 and cancer -- overwhelming consensus! Do your own research, as I can't even put a band-aid on straight - I'm not a medical professional (but my PSA has declined to 0.0).
My serum (blood level) vitamin D3 is up to 111 ng/ml. I'm pretty happy with this, and plan to aim for 100 to 125 in the future - but that's my choice - do your own research!
June 12 visit to urologist: Doctor comes in smiling and says "Undetectable. This is what we work for." This is two "0.0" PSA scores in a row, and the next update will be next year. Treatment history is already posted. Diet/supplement regimine is 80% reduction in red meat and dairy, 10,000 IU vitamin D3 daily, Lycopene and Selenium daily, multivitamin daily. I update myself on the efficacy of vitamin D3 often, also continuing to read about vitamin D toxicity, convinced that I am well below any toxicity risk. Serum vitamin D has ranged between 90 and 111 ng/ml., and my goal personal is 100 to 125 ng/ml. I tend to be a big fan of the 2x HDR and 25xIGRT modality that my excellent urologist and Radiotherapist (Wyatt Erp with a Gamma Ray guy in my view) executed. I am also thankful for my friends from work who shared their research and PC experiences and who referred me to YANANOW for additional case histories. Last key thought: Be a Cancer Warrior! Do the work, study the alternative modalities, get second opinions, read diligently about diet, supplements and exercise. Your best chance of a cure is to build the heart and mind of a Warrior, study hard, seek all the knowledge you can, study case histories, and with your doctors build a plan you believe in. And, Pray!
Sandy's e-mail address is: brosandy AT aol.com (replace "AT" with "@")