My story begins in January 2011. I noticed I was having trouble urinating which was something I never had before. I also had a lot of burning while urinating, and was running a fever of 102. I called my doctor and told her my symptoms, and she had me come in for some blood work and a urine specimen. The urine specimen indicated that I had a bladder infection, and I was placed on two weeks of antibiotics. I did not even ask what she took the blood for. Well, the antibiotics quickly took care of the infection, and the plumbing was back to normal in no time. I had a follow up with my doctor, and she ordered more blood work. I didn't even think to ask her why. I was just happy my infection was gone.
Flash forward a few days, and my doctor called me back and told me my PSA was elevated. The initial PSA level was a 10, and the second test was a 9. I shrugged my shoulders and told her "big deal". She told me she had some concerns and wanted me to see a urologist. I agreed.
A couple of days later, I went to see the urologist, and he checked the "fluids", urine and blood. He also asked me if anyone in my family had prostate cancer. I told him "no". He said that I shouldn't have anything to be concerned about, but he still wanted to perform a DRE (Digital Rectal Examination). I reluctantly agreed, and let him violate what had previously been strictly a "one way door". He told me the DRE was normal, asked me if I had any problem urinating or having sex. I told him up until the bladder infection, I never had a problem with urination or sex. He again assured me I should have nothing to worry about, and he would call me in a couple of days with the results of the blood tests.
A few days later, I received a call from the urologist, and he informed me that my PSA was a 7, but he also checked for something called Free PSA. My Free PSA was 6%. At the time, I did not know anything about Free PSA, or I probably would have screamed. He told me he had some concerns with the blood test, and he wanted to perform a biopsy. I wondered why he would want to perform a biopsy, so I started researching PSA and Free PSA tests on the internet. After hours of research, I came to the conclusion that a Free PSA of only 6% was definitely not a good thing to have and in all likelihood it indicated I had prostate cancer. I told the doctor to schedule the biopsy. [The freePSA is no more accurate a test than total PSA is and can be severely affected by infections in the prostate or bladder since it is not cancer specific. See the basics of PSA at PSA 101]
Fast forward a few days more, and the biopsy was performed on 15 March 2010, which just happens to be my birthday. I could not imagine a worse way to spend a birthday than to have your "back door" violated again. Honestly, the biopsy was not as bad as I though it would be. I have had leg cramps that were a lot more painful than the biopsy. Now came the hard part; waiting for the biopsy results. I had a follow up scheduled with the urologist for 21 March, and it seemed like the day would never come. Anyway, 21 March did arrive, and I went to the doctors office. As luck would have it, the urologist was running late that day due to some complications in surgery. I did not see him until 6:00 PM which was two hours after my scheduled appointment. Well, the news was not good. He told me that 3 cores out of 12 had come back as cancerous with a Gleason of 3+3= 6 on 2 of them and a Gleason of 3+4 =7 on one of the samples. All samples were 5% or less cancerous. I had been doing my research, and was not surprised with having cancer. The 6% Free PSA pretty much indicated a high probability of cancer. I was however a little concerned with the Gleason score of 7. I asked if I could get a second pathologist's opinion, and my urologist not only agreed to the second opinion, but also told me that he would send my report to the world renowned pathologist, Dr. Epstein at Johns Hopkins. I anxiously waited another week for the report from Dr. Epstein, and was happy and sad with his report. His report showed that now I had 4 cores out of 12 that were cancerous (Instead of 3), but they were all Gleason 3+3=6. So I gained a lower Gleason rating which in my opinion is more important than having one more core come back cancerous. The new cancerous core was "suspect" anyway in the first pathologist report, but was not deemed to be cancerous.
The urologist suggested that I have a prostatectomy, but I find the very idea of this procedure to be barbaric. No way would I submit to this if there was some other way. In all honesty, I wanted to do Active Surveillance, but my urologist told me I am not a candidate due to my young age of 46. After hours of research, and talking with my wife, I decided on seed implants. I have had all the tests done, and my oncologist says I am eligible for seeding. The problem is I do not trust modern medicine. I view it as a racket for Big Pharma to make money, and the doctors are the pawns. I want to explore alternative therapies.
I bought a book titled "You don't have to be afraid of cancer anymore". The book lists many alternative treatments for cancer, and I have been following my own regimen that I put together using the book as a guide. My regimen consists of the following supplements/vitamins taken on a daily basis:
4000mg IP6 (Inositol Hexaphosphate)
500mg Saw Palmetto Extract
400mg Garlic Capsules
5000IU Vitamin D3
2000IU Vitamin C
400IU Vitamin E
In less than two months, my PSA has dropped from 7 to 3.6. Now, I don't know, nor can I prove is it just coincidence, or are the supplements working. My urologist told me he does not understand why my PSA has dropped, even after I told him about my regimen. As a matter of fact, he was eager to get me out of his office after I told him what I was doing, and said he would see me on 9 June which is when I am scheduled to have the seed implants.
More than likely, I will go through with the seed implants scheduled for 9 June. I have a 6 year old daughter that means the world to me, and I'm not sure that I want to risk the unproven alternative treatment. Although, I probably would stay on it a while longer if I did not have my daughter, and see if the treatment could get my PSA down below a 1. So, for now, it looks like it is the seeds for me.
Just a quick update. Well, I have cancelled my seed implant procedure that was scheduled for 9 June, so that I can pursue a second opinion, and do a bit more Active Surveillance. Amazingly, my urologist agreed that it is a good idea to get the second opinion due to my age. This is the same urologist that told me I had to have my prostate removed immediately, to being OK with my decision to have seeds, to now being OK with me delaying my therapy to pursue the second opinion.
However, he is not OK with me wanting to remain on AS. Too bad. Anyway, after many discussions with my wife, and many helpful emails from Terry Herbert, I came to the realization that it is best to wait. I especially feel that way after looking at my biopsy again, and see that I do not have 4 cores out of 12 positive for cancer, but in fact it is only 3 and they are all Gleason 3+3 with less than 5%. I feel I would be an utter moron to have my prostate destroyed by radiation or removed without at least first seeking a second opinion.
I will be seeing Dr. Datolli at the Datolli center in Sarasota Florida, as long as my insurance cooperates. If not, I will continue my supplement/vitamin regimen and see if my PSA continues to drop.
Well, my search for a second opinion took me to Dr. Datolli's office in Sarasota, Florida. Thankfully, Sarasota is only a 50 mile drive from my house. Dr. Datolli was very thorough, and before even seeing me in his office, he spoke to me on the telephone for about an hour and a half. He also ordered a bone scan, MRI, more blood work etc. I was told all this was being done to calculate the extent of the cancer, and to be able to predict with all of the tools available whether the cancer has metastasized, or is it still localized to the prostate. Strangely, the other doctor that I was going to perform the seed implants did not see a need for any more testing, and was just going to implant the seeds.
Armed with all my test results, I had my first appointment in with Dr. Datolli's partner, Dr. Sorace, in mid July. All the results of my tests were explained to me, and the tests showed that the cancer was still localized to the prostate, but tests are not always 100% accurate. Another standard practice of Dr. Datolli, the Color Flow Doppler Test was also administered. Think of this as getting a biopsy done, but without the needles. Minor discomfort while the probe is inserted. This test allows the blood vessels of the cancer to be mapped throughout the prostate. As expected, I did not have a whole lot, and most of the cancer was on the left side of the prostate. What did worry me was the small bulge that was visible on the prostate. Dr. Sorace explained to me that this was the cancer "pushing" on the wall of the prostate in order to escape it's confines. It was this test that ultimately changed my mind to forgo AS, and to follow Dr. Dattoli's recommendations.
After some more tests, and simulations, I had my leg braces poured, and was able to start Dart Therapy. Dart is a specialized form of EBRT only available at the Datolli Center....as far as I know. [As I understand the position Dr Dattolli may have registered DART - a combination of Brachytherapy and EBRT as a trademark for Marketing purposes. The procedure seems similar to another 'registered' therapy ProstRcision. Other radiologists use variations of this combination without any registered trademark.] I had 30 of these treatments over the next month and a half, and the only side effects I had was an increased urgency to urinate. This complicated the Dart treatments because the staff would not administer the treatment unless you have a full bladder. There were a few close calls, but the month and a half went by pretty fast, although at the end, driving 100 miles every day got to be tedious. Some people report fatigue with the radiation treatment, but it did not bother me.
There was a 2 week intermission between the last Dart Treatment, and seed implants. Dr. Datolli implanted 56 Palladium Seeds on 7 September. The worse thing about the whole procedure was the catheter which was finally removed at about 3:00 AM the next morning. Although this procedure is done as an outpatient, Dr. Datolli has a deal with the hospital in Sarasota to allow his patients an overnight stay in a private room. Insurance isn't an issue because they don't get billed for the stay. The next day, all patients go to Dr. Datolli's office for a CT Scan to insure the seeds are properly placed......don't know what they would do if they were not properly placed. After the CT Scan, patients are given their medications: Flomax, Ibuprofen, suppositories, steroids etc to help with symptoms. Patients then go home for about 3 months, and usually return for a few more Dart Treatments to the peripheral edges of the prostate to destroy any cancer that may be left. I am at this waiting stage now. I go back to the Datolli Center in December for the follow up appointment, and to start 10 more treatments of Dart.
The side effects have been mild. The first few weeks, the ED was really bad. I was not happy with this, and contacted Dr. Datolli's office, and was told to be patient , and the ED would improve as the swelling in the prostate subsided. This could take 2 months or more. Well, it has been 2 months, and ED is not an issue, never even had to take any Viagra etc.
Incontinence has never been an issue from day one. Urination for the first 2 days after the catheter was removed was somewhat painful due to burning, but this subsided each time. After a few weeks, there was increased urination urgency, and burning, but nothing too bad. Although, I did have to make a few mad dashes for the bathroom. Recently, this also has subsided due to the radiation in the seeds dissipating over time.
Dr. Datolli recommends against drinking coffee, alcohol , eating spicy foods etc. for the first few months after seed implants because these foods are known to make the side effects worse. I basically ignored Dr. Datolli's recommendations, and lived with the side effects, which like I said were not too bad. Dr. Datolli forbids taking any supplements for the first couple of months due to antioxidants being able to interfere with the desired outcome of the seeds. I have strictly adhered to Dr. Datolli's orders, and have not taken any supplements since seeing him for the first time.
One drawback for people thinking about seeds is not knowing right away if the seeds were successful in curing the cancer. I can see how this would bother some people, but I am fine with it. I am confident in Dr. Datolli's 95% cure rate for men whose cancer was similar to mine.
Just a quick update:
Have completed the 10 dose "radiation boost" post seed treatment as of 23 December. No issues with it. Felt a little fatigued the last day, but was also working some very long hours at the time, so am not sure if it was radiation fatigue, or just plain old work related fatigue.
Had 3 month post seed checkup with the doctor on 15 December. CT scans reveal seeds are perfectly placed, and no signs of cancer. Doctor said everything is "perfect". PSA was down to 0.6. Am scheduled for blood work in April, and re-visit with doctor in September 2012, when I have been told another color flow Doppler will be performed along with other tests to ensure the PCA has been eradicated. I do have extremely low testosterone. It measured 138 ng/dl when normal range is 286-1510. Doctor was not concerned with the low T and will see how it goes.
Side effects have been minimal. Incontinence has never been an issue from day one. Never even had to worry about the slightest dribble. There were some urgency issues during the first 3 months after seeding, but now that the seeds have given off most of their radiation, this is not an issue anymore. ED was an issue shortly after seeding, but has not been a huge issue since. Have noticed erections are not as firm prior to seeding, but has not been an issue so far. The doctor advised this should actually improve over the next 6 months. I hope he is correct, but if not, I can certainly live with it.
I have also stopped taking the Flomax after the doctor said I could try it. Peeing is not the same as it was pre-seeding. Sometimes there is a hesitancy getting the urine to flow, but no big deal, and especially no reason to go back on Flomax. Everything was fine while on Flomax, but the issues are so minor without the Flomax that it doesn't make sense to take it if I don't have to.
Have a Happy New Year. I will update in September unless something drastic changes between now and then.
PSA results for April: 0.8 PAP of 0.9 and Testosterone of 389.
Side effects have disappeared since completing IMRT treatment back on 23 December. Pretty much back to normal with the only noticeable difference between pre and post seeding being a decrease in ejaculate.
Have been following the Primal Blueprint Lifestyle for the past 6 weeks, and have dropped 15 pounds. If anyone is interested in Primal Blueprint, the book is here and the authors blog is here at Mark's Daily Apple It's not prostate related but simply a healthy eating style that so far has caused my blood pressure to drop from about 140/90 to 125/80 and effortlessly shed 15 lbs from 245 to 230.....still have about 30 more to go. many people on this site may not be comfortable with it since it advocates eating red meat.....and lots of it. Although, you should eat just grass fed organic beef.
Will see the doctor this September which will be 1 year post seeding.
Today, 7 September, is my one year post seeding anniversary. I just got back from the Dattoli Cancer Center, and things could not be better. PSA was .8, no change from last PSA. A Color Flow Doppler Ultrasound was performed, and there was no evidence of tumor activity in the prostate. All other blood tests were normal.
Side effects: Fully continent, and peeing has never been an issue. Once the effects of the seeds wore off, the urgency disappeared too. Might have to get up at night to pee, but only if I had some alcohol to drink prior to going to sleep. Bowel movements are normal, and never experienced any rectal bleeding. ED on the other hand has made a slight return since my last post but has been getting better recently. The doctor gave me some samples of the little blue pill to try if I want to. Erections always happen, but sometimes might not be rigid enough to do anything with, or they "deflate" very quickly. If the blue pill clears this up, then all the better.
I would definitely recommend brachytherapy with IMRT, especially Dr. Dattoli's team, and would do so again without hesitation if AS was not a good option.
I just got back my 6 month PSA today (4/4/2013), and it is down to .5 from .8. I was thinking there might be one of those "bounces" this time due to being 18 months post seeding. All the same, glad to see it went down and not up.
Now for some talk about side effects. ED problems that I was experiencing 6 months ago have really remedied themselves, and am at about the same point pre-seeding.....which is a good thing. Had to take a Viagra a couple of times, but last 4 months have been fine and no drugs needed. No issues at all with incontinence, and never had been an issue.
I do have an annoyance that happens every now and then, and I guess you could classify it as a side effect. I have noticed when drinking coffee or alcohol, there is sometimes a greater need to urinate. Just about the same feeling you get shortly after the seeds are inserted. Doctor Dattoli warns of this and advises his patients to avoid coffee as it is a bladder irritant. If this is the only side effect I have for the rest of my life, then I can certainly live with it. Brachytherapy has, so far, been the correct treatment choice for me.
Recently returned from my oncologist for my yearly checkup. Blood test results were as follows:
I was concerned that Testosterone was low (Normal indications for my age are 212-742 according to the blood work chart). So, it is in the "normal" range, but at the low end of the scale. Called the doctor's office and was told the doctor is not concerned with the level, and does not recommend any sort of testosterone "boost" methods. I will heed his advice and let testosterone do what it will.
Side Effects: Unfortunately, ED has returned once again. Sometimes "It" works and other times it does not. Quite maddening actually, although bearable because Viagra ALWAYS works. Just have to plan now for sex instead of relying on spontaneity. Still no incontinence or rectal bleeding that you sometimes see other patients who have had brachytherapy and IMRT complain about. I was experiencing intense urges to urinate when I drank coffee or alcohol, but strangely these urges have disappeared in the last few months. Now, I get a pain in the right side of my groin every now and then, that seems to get better with walking. I mentioned this to the doctor, and he was not sure what it could be since the CT scan of the pelvis does not show anything that could be the cause of the pain. Not even sure if this is related to the brachytherpy procedure, but thought I would mention it. I am still happy I chose brachytherapy as my treatment, and would recommend it to anyone. Feel free to contact me if you have any questions.
Just a quick update due to getting 6 month blood results back.
PSA 0.2 (No change Since October. Yes!)
PAP 0.9 (Slight increase since 0.7 in October, whatever that means.)
Free Testosterone 91.3 (46-224 pg/nl)
ED continues to come and go, but always responds to Viagra. No big deal at all, and you just get used to it after a while.
Urination urgency I was feeling before has normalized. No more urgency when drinking coffee or alcohol. This was a welcome relief.
Still experiencing a pain in the right side of groin every now and then. CT scans and physical exam has shown nothing in the area that could be a culprit to this pain. Definitely worse while sitting, and gets better while walking. I have no idea if this is in any way a side effect of treatment.
It has been 3 years since diagnosis, and honestly could not have expected much better than this.
One year follow up at the DattoliCenter went very well. They are very thorough with each visit and perform CT scans, color flow doppler, blood and urine tests, etc. All of my CT scans and color flow doppler showed no signs of cancer. Blood work came back with a PSA of 0.042. I am very pleased with this number, and it has been the lowest it has been since seed implants 3 years ago. The urine test revealed some abnormalities that are common with men who have had brachytherapy and IMRT, but can also be indicative of more serious issues. It is recommended I have another urine test in 6 months along with the normal PSA test. Hopefully everything will be OK, and I am not concerned at this time. Side effects have been mild. No urine retention issues, or any urination issues for that matter. Erections are not the same as pre-seeding, but nothing to be overly upset about. Sometimes it works, and sometimes it needs help. If I want to be 100% sure the plumbing will function, I take a Viagra.
Well, it has been over a year since I last updated my story, so here is a quick update. I went to the Dattoli Cance Center in September for my yearly checkup. The checkup includes a CT Scan to check on the placement of the "seeds", some blood work, and a color flow Doppler scan of the prostate and surrounding region. The CT scan showed the seeds have not moved since placement. The color flow Doppler showed no signs of tumors in the prostate, and the blood test showed a PSA level of .2. A great report, and the doctor was pleased with the results of the treatment. The CT Scan also showed that I have a 4.7 cm pericardial cyst. So, no more prostate cancer, but instead, I have to worry about the pericardial cyst, and get to see a doctor about that. It sucks getting old.
Now, as far as any long term side effects. ED remains a confusing problem. Confusing because sometimes the plumbing works, and sometimes it does not. Viagra usually causes a full erection, but even Viagra has failed one time in the past. The ED is not something that overly concerns me, or interferes with my normal life, but I would not be honest if I did not mention it. As far as other side effects, I don't really have any. Urine function is normal, but every now and then, maybe once a month, I still get an urgency that I have to pee "Right Now!". I have not suffered from any urine leakage, slow stream, forcing to pee or any of those other effects that other unfortunate people complain of. I truly feel blessed with the treatment I received.
Have a Merry Christmas, and a Happy New Year! If anyone reading this has any questions, do not hesitate to email me, and I will answer any question about my treatment.
Another year has come and gone. Without sounding repetitive, there is really less and less to say. Everything seems to have stabilized just fine. Visited The Dattoli Cancer Center again in October for the usual CT Scan and Color Doppler Flow Ultrasound. Everything was normal. PSA undetectable. I had the pericardial cyst checked out by a heart specialist, and it is benign. I can't complain.
Still having some issues with ED, and I guess it will remain like this or get worse as I age. Nothing I can't live with. No issues with urinating, bowel movements, or any of that stuff that can happen to us when we receive treatment.
I would not hesitate to have brachytherapy again, although this article really caught my eye today, and reminded me I need to update my story. What an awesome breathrough this would turn out to be if it really works: http://www.telegraph.co.uk/science/2016/11/30/man-cured-prostate-cancer-doctors-shock-tumour-death-testosterone/
Merry Christmas and Happy New Year.
Scott's e-mail address is: firstname.lastname@example.org