I was diagnosed with Pca in Sept. 2011 with a PSA score of 67, Gleason 4+3=7 cancer, 80 percent involvement with seminal vesicle invasion. Clear bone and lymph nodes via MRI, CT Scan and Prostascint scan.
To establish a pre-treatment base line, a Bone Density test was performed which revealed a surprising diagnosis of osteoporosis with a -2.8 T score. Being 51 and male, this is rare. I am quite lightweight though and have been all my life. Osteoporosis is also in my family and my 90 year old mother is severely osteoporotic. As hormone therapy can reduce bone mass this is concerning. I am on Fosamax (which I am a little spooked of) and daily 1200 mg calcium and 5000 iu of Vit D should help.
There was an initial trying time of navigating treatment options as I was getting differing opinions by different doctors and other sources. Urologists wanted to do surgery but I found out that since my cancer was not fully contained I would need supplemental radiation anyway. After reading the favorable odds (upwards of 80%), that some centers (Dr. Dattoli, etc.) achieve in curing locally advanced disease with Brachytherapy and IMRT radiation it was clear to me which direction I wanted to go. I wanted to be as aggressive as possible.
One of my MOST informative sources of information came from you folks on this message board and I can’t tell you how grateful I am for your input. You have all been incredibly invaluable.
So far my treatment scenario has been triple blockade ADT hormone therapy, brachytherapy and IMRT radiation. I had the Brachytherapy performed a few months ago and just finished IMRT. I am now on hormone therapy for two more years.
My original ADT consisted of Firmagon injections, 50 mg of Casodex and Avodart. “Firm- a -Gone” (there must be a comedian in the drug maker’s marketing department) worked as advertised. Libido was pretty much shot down and with it my PSA score dropped without any flare up which you apparently see with Lupron. The Firmagon was injected every month for four months. The injection site was quite sore for several days (bordering minor crippling to some degree) following administration and I seemed to get slightly more reactive which each progressive dose. At first it was simply quite sore at the injection site, then I was starting to form a bit of an injection site knot for a few days after an injection. On my fifth visit I was switched to Lupron which was a breeze in comparison and is now administered every four months. That was a very nice change. Now that my radiation is done my radiologist wants me to get off the Casodex and Avodart as he states there is no documented proof there is any benefit to do so. This seems maybe contrary to what I’ve read but since I am on ADT at this point to augment the radiation treatments I am not sure if it really matters?? Any opportunity to not take a drug is very welcome but I am defaulting to be as aggressive as possible if there is any real doubt. Any of you have any feelings on this?
The prostate shrank well with an initial 3 months course of ADT and 51 seeds were implanted during radiation. I chose to wait a bit longer after beginning ADT than what I was recommended with the desire to get the prostate shrunk as small as possible prior to seed implant. That seemed to work well as 50 seeds is on the lower limit of what they usually seem to install. The treatment went ok with common symptoms of heavy site bruising, soreness, some fatigue, blood in my urine and frequent urination. Flomax kept my urine stream healthy and I noticed the difference in my ability to urinate well if I stopped taking it for a few days while recovering. I react heavily to anesthesia and my digestive system was fairly shut down after the procedure. I had a rough time getting back on track and suffered a bit. I think in retrospect I’d ask to be put on Reglan (a peristaltic encouraging drug) right after treatment. If I ever have anesthesia again I will ask for this. This may just be me though. I had misdiagnosed untreated chronic giardia for ten years when I was in my twenties and my digestive system has always been my weak link.
My wife and I were busy moving and I had to wait three months after seed implants to start IMRT. Since I had brachytherapy I was put on a 5 week schedule for a total of 25 treatments. Without Brachytherapy I would have had 9 weeks. In retrospect, for me at least, the less 4 weeks of IMRT is motivation enough to choose Brachytherapy in combination with IMRT. As the implanted seeds are localized and the radiation is contained within the area of the gland I am mentally more comfortable with Brachytherapy than external beam as in my mind there is less exposure to healthy tissue. I had to have external beam to reach the seminal vesicles and lymph nodes (treated to cover possible micro metastasis) but I am happy I was able to minimize its use.
Preferred by my radiologist is the use of an inflatable rectal balloon which helps protect internal organs from radiation. The daily rectal balloon was not fun to say the least. If the definition of happiness is living in contrast to accumulated suffering, then I think I should be happy for quite some time.
My radiation experience was somewhat miserable in that again, my digestion was adversely affected. A common side effect is diarrhea. My reaction was opposite in that my digestion slowed down on me again. I think the balloon didn’t help and in conjunction with the full bladder I had to maintain during treatments I was exposed to pressures not normal to my system and I think it affected me adversely. I mentioned my lack of peristalsis to my doc. He was somewhat perplexed by this as he never really sees this in patients. He prescribed Reglan which helped quite a bit as did some anti-nausea medication. Taking a teaspoon of psyllium seed powder twice a day helped motility as well. I don’t want to be too graphic here but if anybody can benefit from this I’d like to pass on what worked for me. I do think others often have a different experience than I had.
I am at the end of my second week following radiation and my symptoms are fairly tolerable. I am a bit sensitive to some foods but am generally ok if I don’t over eat. Incontinence is not an issue and no rectal bleeding. I do need to urinate every hour or so and could take Flomax if I wanted but I am fine without it. Flomax can affect motility so I am interest in avoiding it. I am somewhat fatigued as well and my general endurance is definitely down. I am slowly improving though. Surprising yet halfhearted , very occasional erections continues to occur. Sex is very rare, quite muted but still possible though I don’t know for how much longer.
Hot flashes are hell, especially living in South Carolina in the summer. I have been prescribed Effexor for the hot flashes and have been experimenting with it. It works somewhat but makes me feel a bit weird and a bit nauseous at times. I understand you acclimate to the drug. I am not happy about being on an anti-depressant as being depressed, I am not. I am concerned about the long term use of the drug and considering just using it during the summer. I had an episode around a month ago where I went running and after a mile and a half almost fell down from feeling faint. My doc said ADT can make you more heat sensitive and I think I was experiencing some degree of heat stroke. I am sure the effects of the radiation contributed to my weakened state as well.
All in all I have much confidence in my care and have only one concern that continues to nag at me a bit. I have read that radiation values of 70gr or so is more effective than lower dosages at killing Pca cells. My dosage from the brachytherapy was a total of 105gr. Seeds were placed within the prostate gland but not the seminal vesicles. The supplemental dosage total from IMRT was 45gr. When I asked my radiologist whether my seminal vesicles got adequate dosing he said the carry over radiation from the seeds would help raise the total dosage to them. Since I’ve read that radiation extends to only 5mm or so outside of a seed I am concerned whether he is right or not. Any opinions on this would be much appreciated.
In reflecting on my cancer I can’t help but want to make sure that whatever environment was present that augmented the creation and growth of the cancer is not present now. This of course can be tricky as it’s often hard to singularly pinpoint what creates cancer growth but I do have hints. I have always been very attentive to my diet so in my case I think dietary contributors are quite limited. I haven’t eaten red meat in 15 years and have consumed little dairy. We grow most of our own vegetables and I would say my wife and I have eaten with pretty much consistency a largely Mediterranean / Asian diet. Not totally though and fast foods has happened if I found myself starved, as well as an occasional minor ice cream binge. All in all though my diet has been pretty clean with fish or chicken, many vegetables and little fried food. The two factors of concern that stick out in my mind is stress and long term exposure to industrial chemicals. I own a stressful business of servicing and refurbishing medical instruments. Prior to that I used to repair and restore automobiles. Between the two industries I’ve been exposed to a plethora of various solvents, paints, etc.
At work, we use quite a bit of electrical contact cleaner and other solvents which I’ve breathed in and had skin contact over the last ten years. A brother of a friend owns an auto electric shop and just got diagnosed with a PSA of 134. He is in his mid fifties. We spoke and he has used electrical contact cleaner like water to clean his hands, etc. This may be an anecdotal co-incidence but I can’t help but see this as a possible flag. His brother has low psa, as does my brother and neither had exposure to solvents in their work. Both of our fathers had prostate cancer later in life so we both had genetic predisposition to start out with. It’s dumb to extract huge significance from singular situations such as ours I fully understand, but in our society of elevated cancer occurrences in general it’s hard not to view our society’s general elevated exposure to environmental toxins as cause and effect contributors. That all said, I am drastically reducing my exposure to solvents, etc. and trying my best to reduce stress as much as possible. Working in my garden helps much.
As of now I am taking the following supplements.
1200 mg.Calcium from New Chapter. The calcium source is from algae which they claim can be easier assimilated as its food based. Does this really make a difference? Maybe my next bone density test will tell.
5000 iu of Vit. D I’ve been on this dose for years and I have good Vit d levels in my blood.
Tumeric extract from New Chapter.
LycoPom from New Chapter. A concentrate of lycopene and pomegranate. Reading a book on a holistic approach to Pca the author has somewhat compelling sentiments towards its effectiveness.
Daily Flor Essence tea. Another holistic claim towards effectiveness. I don’t know if I really have faith in this but if it won’t hurt me, why would I not be opened minded to non traditional supplementation if there is any evidence what so ever of effectiveness? Anecdotal claims are everywhere I know but I am willing to drift a bit from my general attitude of only clinically proven based treatment to include a few non traditional approaches. If nothing else maybe a little placebo faith can reduce some fear and stress.
When I am in the mood, which seems to cycle on and off, I have also taken to drinking juiced vegetables of carrots, kale, beets, red cabbage to try to boost my immunity. I did notice last winter that I did not get sick while others around me did. I think the juice and supplements kept my immunity higher than usual. Also, this spring I did not get my usual pollen allergy symptoms near as bad as usual. I am not a chronic sufferer but usually get pretty dragged down during the pine and oak pollen release. It was confirming to me that my immunity was being affected by my diet and supplement intake.
Now it’s a waiting game and I don’t know if there is much more I can do. If I do anything I may make an appointment with Dr. Meyers, go over my case and see if he has any sentiments or further suggestions for me.
My daughter is pregnant with her first child, our granddaughter to be. I am hoping to be around for a long time and see her turn into a mature adult. I truly hope this is so.
Please feel free to comment on any of this writing.