I was diagnosed in late September. 2 of 12 Biopsies were positive, one 50%, one 40%. I felt like my world had collapsed and was very down for a few days. My best friend had been diagnosed a few months earlier and was in treatment at RCOG (Radiatioin College of Georgia) Atlanta , having combination seeds and IMRT (Intensity Modulated Radiation Therapy) for 8 weeks.
I decided that being in a funk would not help me beat this cancer so I called a few friends I know who had PC and asked them what they did and how it turned out. I did lots of research, hundreds of hours, read several books by Bob Marckini, Peter Walsh, and Peter Scardino. I read clinical studies, read information from American Cancer Society and other non profits. It was a daunting task that took every minute I had for days and weeks. I contacted men at YANA, Healthboards message board, Bob Marckini's volunteers who would let me call them and also via e mail. I heard from an amazing bunch of men who shared their experiences in detail with me and found that my best source of information.
My urologists said I was an excellent candidate for surgery, the Gold Standard. But I had not heard a lot of good things from the men I talked with who had surgery so continued by exploring journey. I scheduled and went to a Multidisciplinary Second Opinion Clinic at a large hospital where I live which was excellent and provided me lots more information to dissect. They used a team approach and had a very experienced urologists (600 Da Vinci surgeries alone), a radiologist, an oncologists, and team of other professionals. They review your file, redo the pathology report, each meets with you to answer questions and provide you their slant. The purpose at the end of the full day is to give you a consensus of what they team believes you should do. They came back and said either surgery or radiation should be fine for me and would likely have similar results.
Well, after that second opinion and much more research I ruled out surgery. I discovered that seeds and IMRT (x ray radiation) alone or in combination had good outcomes but some side effect issues could hit you a couple years out from the treatment. I kept researching, reading, agonizing, and ruled out HIFU (several YANA stories turned me off that treatment, Cyberknife, EBRT. I kept coming back to a treatment that is not very well known or publicised (even my urologist did not know much about it) and that was proton therapy. It is only done at 5 places in the US. Most are connected and owned by major universities. Loma Linda is the most well known but I could not get a consultation there. I finally got one at University of Florida Proton Therapy Institute in Jacksonville and had my consult on the 7th of January. I hope to start treatment in April as they have a 3 month backlog of patients at this time.
There are no guarantees with any treatment you will find but I am glad my decision is made and will proceed on this path. I will update this site as I start treatment and let you know how it goes.
I finally got my appointment for the 3 day workup at UFPTI in Jacksonville for the middle of February, 2009. Not looking forward to that but am glad I am finally getting started and hopefully begin the daily treatment the middle of March.
Later: I have completed my 3 day workup at UFPTI the 17th - 19th of February and my 2 month daily treatment is now scheduled to start March 12th.
The 3 day workup went extremely well. I was a little anxious about it, particularly the implant of the 4 gold markers into the prostate, but it all went very well and my anxiety was really unwarranted. Day one I had an injection of some chemical that is absorbed by the bones and had a bone scan later that afternoon. It was just like a shot and only side effect was a little taste in my mouth. Bone scan was done to just try and confirm that cancer had not spread to the bones. Also had a chest X ray that afternoon and met with case manager to go through schedule for the 3 days.
Day 2 was the gold marker implants. It was very much like the biopsy, same procedures such as taking antiobiotic before and during and after, enema in the morning and then the implant. It only took about 15 minutes and was only slightly uncomfortable. It did not hurt and I was shocked that it went so quickly. When I thought he was doing the local anesthesia he was doing the implants so it went real well and is nothing to be concerned about. Also, had an MRI and orientation and tour of facility that afternoon.
Day 3 was a CT scan and MRI simulation along with the making of the plastic mold I will use for my treatment. They did the injection of the saline water into the hiney to do the markers on my body. I was quite honestly dreading that but it did not hurt any and now I am not concerned about that being done every day. They will use the saline and not the balloon but they use both there, depending on your own circumstances. If you are a gassy person they may use the balloon and maybe in other situations but I am not sure. Anyway, I am ready to go now and have found a nice 1 bedroom apartment in old section of town and it appears it will work great for me. Rent is $1,400 month which seemed to be on par. You can spend more and maybe a little less but you can count on something in that range.
I will update you during treatment.
March 12, 2009. I had my first of 39 proton radiation treatments today at UFPTI in Jacksonville, Florida. By the way it is a beautiful day here and temp. is 79. Sure beats weather in most places this time of year. The actual treatment was a non event. I was a little bit anxious but the saline insertion process was totally a non event. No pain whatsoever and actual treatment took only a couple minutes.
I will update a few weeks down the road to keep all interested posted. If anyone has any questions please feel free to contact me.
Later: I have now completed 12 of 39 treatments at UFPTI in Jacksonville, Florida. Things overall have gone very well. Only hitch for me was that twice times my prostate moved during treatment more than the team wanted to see and they put me on the balloon program at treatment number 11. So now I really am an official member of the "Brotherhood of the Balloon". It is a little bit uncomfortable when they insert and then fill the balloon but nothing to get concerned about based on the 2 times I have had it done.
For me, it was better after treatment versus the saline injection solution because I did not feel like I had to go have a bm several times as I did with just the saline treatment.
The staff is great here in Jacksonville and are really perfectionists. I have not had any side effects whatsoever. No urinary issues and Mr. Happy is still happy. Some guys have had some burning urinary issues but took Advil and that solved the problem. Only problem I have had is two blisters on my heels from me walking so much here in these beautiful neighborhoods. I have been walking about 1 and 1/2 to 2 hours a day here. So if that is the worst side effect I have had that is pretty good in my opinion. Of course, that can change but so far so good.
I have not heard of one person who has had any major problems with this treatment so far.
Jacksonville is a nice place, people are friendly and helpful, weather this time of year is great, and lots of wonderful places in area I am staying to walk.
I will provide another update later but please contact me if you have any questions.
May 9, 2009 I completed my 39th and final treatment on Wednesday, May 6th. I received 2Gy each treatment for a total of 78Gy, One day they would treat the left side and the next day the right side.
Everything went very well during my 2 months of proton treatment in Jacksonville. The facility and staff are just incredible and I literally shed a few tears on my last day. They were professional, kind, caring, and made me feel very much at ease each day I had treatment. They are just awesome.
I had to go on the Balloon program starting with the 11th treatment versus the saline injection program. So now I am an official member of the "Brotherhood of the Balloon". I actually preferred the balloon but either program is fine. The insertion place is the same regardless and it does not hurt either way so it didn't matter to me. My prostate just moved too much with the saline so their protocal made the change necessary. My prostate was treated with a 5 to 6 millimeter margin and they are very precise with these margins. If you are outside their tolerances you will be put on the balloon. I had only minor side effects. I had a slight increase in urgency and frequency although I have had some problems with those issues since high school. I did not have to take Flomax but the doctor and case manager recommended I drink 100% Cranberry juice which I had to buy at the local health food store (which I diluted 1 part 100% juice to between 3 and 5 parts water) each day (about 4 to 6 ounces of the 100% concentration) and 2 Advil, one in the morning and one in the evening. Doing so helped me to manage those two issues and I had no accidents or close calls with urination. Also, I found that if I drank most of my liquids during meals that I had no problems with urination side effects. If I drank 15 to 20 ounces of liquid on an empty stomach I did have both issues to deal with. You do find you are more aware of where the bath rooms are in your area.
I had a minor ED issue which was totally resolved with Cialis during and after treatment and that part of my life is as good as it ever was. My doctor said the proton radiation irritates the seminal and urinary areas and that these issues can happen. I have not had to use Cialis every time and may not at all in the future once I am down the road a few months. I will let you know in the future. Not a problem regardless as far as I could tell because I had no side effects from the Cialis. I also did not have an erection that lasted 4 hours or more which disappointed my wife (sure and if you believe that I have some land in Florida I want to sell you).
One issue I had and one all the men I talked to had was the "Lovers Groan". That is a slight pain during sex. Hard to describe but not anything that overcomes the joy of sex. According to men I have talked to who had Proton treatment, this goes away in few months after completion of the treatment. My doctor said this should go away too as the prostate has less inflammation each week.
I am very pleased with my decision to have Proton therapy at UFPTI. I go for 6 months checkups for 2 years there and have PSA tests after 3 months, and then every 6 months thereafter. I do not know what my post treatment results are but will post those numbers as soon as received. I enjoyed Jacksonville very much. My wife joined me for a week and two weekends and we went to Fernandino Beach which is a beautiful little historic town, St. Augustine which is the same, drove all the way from there up A1A which is a gorgeous drive and spent a weekend in Savannah where we also had a blast. Just so much to do in that area that after 8 weeks there I did not get to all the places I wanted to visit. I walked each day between 1 and 2 hours in the beautiful neighborhood I lived in and that was a delight. Weather was great that time of the year but it was beginning to get very warm (in the 90's) the last couple of days there. I would guess the summers there are pretty brutal with high temperatures and high humidity but beaches are very close to visit even in the summer.
I will update at 3 months and 6 months but if you have any questions in meantime, please don't hesitate to contact me.
Later: May 11, 2009 Just got results of my post treament PSA which was done on last day of my treatment at UFPTI. It was 3.2 versus 4.0 before I started treatment.
I just received the results of my 3 month post treatment PSA test and it was very good, 1.8, so I am very pleased with these results of my first post treatment test.
Everything is going extremely well. I have no significant side effects. My urgency/ frequency issues are much better. I never did take the first tablet of my Flomax prescription and am only taking the Prostate Formula tablets which I get over the counter at Walgreen's. My urgency/frequency issues are much better than before I had proton radiation treatment and I am very happy about that.
I have a prescription for Cialis but seldom use it so I would say I have very minor ED issues. That part of my life is going great and so I am very pleased that so far everything works well.
I had no other issues and the results of my recent physical were excellent. In summary, I am extremely pleased with the results of my proton therapy and delighted with the overall experience. In fact I don't even think about prostate cancer any longer which I believe is the best possible outcome.
I will keep you posted as I get my every 6 month PSA tests and update any issues that may come up. I would again recommend any man who has prostate cancer to research and learn all he can and particularly all he can about Proton Therapy. It has done everything I hoped for so far and I am optimistic my PSA's will continue to fall to insignificant levels.
If anyone out there would like more information please contact me and I will be happy to answer any questions you might have.
I am very happy to report the results of my 6 month post treatment checkup which I had in Jacksonville, Florida last week at UFPTI.
My PSA has dropped to 0.9 six months after treatment and down from 1.8 three months ago. Pre treatment it was 4.0. My checkup went well and they said I am doing great. I have no material side effects from the treatment at this time and all is well. My wife and I went on a 15 day Alaskan land and sea trip this summer and had a wonderful time.
If anyone has any questions about Proton therapy at UFPTI please e mail. We are remodeling our house and do not have a land line at this time but e mail and I will call or email you.
I have just received my 9 month post treatment PSA results and it is 1.3. That is a jump from the .9 at 6 months.
I know there can be bumps or spikes in the PSA along the way with proton radiation and I hope that is the case here.
As far as side effects go, I do not have any. I feel great, have no urinary issues or ED issues.
I will update with one year results in May.
I just completed my one year checkup in Jacksonville at UFPTI and everything went well. My latest PSA results were 1.3 which is the lowest since teatment. I had a bump at 9 month check but now it dropped from 1.4 to 1.3.
I feel great, and have had no material side effects from treatment. I don't even think about prostate cancer any longer which is a big relief in itself. I will hope that my PSA continues to drop.
If anyone has any questions please feel free to contact me.
I recently had my latest PSA test and I am very happy to report that my PSA had dropped to 0.70 which is just great news to me. I still feel just great and have no side effects at this time. I am very pleased that I choose Proton Radiation Therapy at the University of Florida Proton Therapy Institute in Jacksonville, Florida. I will keep my fingers crossed that my PSA will continue to fall to its Nadir level.
If you have any questions please give me a call at 704 706 4900 or e mail me.
Good luck to all Mel.
I just returned from my two year checkup at UFPTI in Jacksonville, Florida. Everything went fine and everything seemed to be going well.
My last PSA was 0.7 which was done in March and I just got another one last week but do not yet have the results back.
The only side effects I am having is a little rectal bleeding which is not unusual at the two year mark. It has not been an issue so far and my doctor prescribed 10,000 of Vitamin A twice a day for 3 months. I have only had this problem about fivetimes and it was not a major problem only a little disconcerting. But again, this is not unusual and it usually stops in a few months.
I still occasionally take Cialis but don't need it all the time and that may be tied more to my age than with the Proton Radiation treatment.
So, I am very pleased with my treatment so far and hope to keep my PSA's in this range.
Later: I just received the May 26, 2011 PSA tests which coincided with my two year checkup. My latest test was 0.7 which is the same as the previous two 3 month tests.
That is great news and I am happy as a pig in mud. It may or may not go down further and that is ok according to my doctor. As long as it does not go up 3 times in a row it is good news. Everything else is going well.
Good luck to all and low PSA's to everyone.
I had my latest PSA test in December 2011 and my results were .03 which was a slight but meaningless increase from the previous one at .02. Very pleased with the results of my proton therapy and am now 30 months from initial treatment. Everything is going great. If anyone has any questions feel free to contact me as others has done to discuss my story.
I traveled to Jacksonville on July 17 for my 3 year checkup at UFPTI. My most recent PSA was 1.1 which was an increase from the previous PSA done 3 months ago of 0.4 but bounces such as this are very common and Dr. Bill Mendenhall, my UFPTI doctor was not at all concerned and neither am I as it has had bounces over the previous 3 years.
I had had some recent rectal bleeding , called radiation proctitis, which is apparently a common side effect of radiation treatment for prostate cancer, whether it is Proton radiation or IMRT. I was seem by a colon surgeon in Jacksonville and he checked me out throughly and prescribed over the counter Vitamin A, of 20,000 per day, taken one pill in AM and one in PM of 10,000 each. He said this is very common and is not usually a long term problem. If it continues to bother me they can do a Formalin treatment where they go in the colon with Q tips coated with Formalin and that has had great results. But he recommended I try the Vitamin A for 3 months and see how that works. The rectal bleeding is not a huge problem and is very sporadic.
All my other blood tests were excellent. I have had no other side effects and I only take Cialis occasionally but the sex is wonderful and it is great to still have that a part of my life at age 66.
I am glad I made the choice for Proton treatment of my prostate cancer and I would make the same choice today, knowing what I know about this cancer and treatment options and outcomes.
I just received my latest PSA test and it was .07 which is stable and I am very happy with that stability and score. I am doing very well and the only side effect is still some minor and occasional rectal bleeding which seems to be getting less frequent and better with time. That is what is supposed to happen with radiation proctitis and that seems to be what is happening with me. I still have no urinary issues whatsoever and do not have ED issues either. I do take Cialis but at my age, 67, I would not say my Proton therapy had anything to do with that. So life is great, sex is great, and I don't have to worry about urinary issues like some of my friends who had surgery for prostate cancer.
I hope all of you are doing well and take care and smell the flowers.
Since my last update I continued to have some issues with radiation proctitis and was having bouts of on again off again bleeding issues. I waited too long to get this ablated and ended up getting some blood transfusions due to this problem. So, I decided to get with an urologist and scheduled the procedure to get the bleeding areas ablated. Since then I have had no bleeding problems and some minor problems with bowel movements. My urologist prescribed a drug for those problems and I am doing much better with those issues. I do not have any other side effects with the proton treatment.
I blame myself for not addressing the radiation proctitis problems much earlier but thought they would get better on their own as is frequently the case.
I hardly ever think about prostate cancer anymore and have been negligent in updating my status. I turned 69 in March and feel great and do all the activities I did before prostate cancer. My PSA is very low and does not change much so that is excellent outcome so far. I had some bleeding issues a year ago and had ablation. This was due to radiation proctitis from the radiation but that stopped the bleeding and I have had no recurrance. I do have some ongoing urgency issue in my bowel movements but am taking some medicine prescribed today to manage that issue. I will let you know results of that outcome. I have no ED issues nor urinary issues. I would choose Proton again if I was making same decision today. Even with the radiation proctitis issues my outcome is drastically better than friends I have that chose other forms of treatments.
Gosh, it has been awhile since I have updated my story. That is good news in my opinion because I hardly ever think abouit prostate cancer any more. Other than an ongoing radiation proctitis issue that I am managing with a couple prescriptions I have no issues. No urinary issues, no ED issues, nothing and I am very active. I just turned 70 and exercise every day, walks, hikes, kayaking, and biking up to 30 plus miles when I am near good trails. I would certainly choose proton radiation again, knowing what I know now. Of course I wish I did not have the radiation proctitis issue but that beats some of my friends who have urinary incontinence, inability to have sex, with other treatments they had. Overall, I feel I made a good choice and as I said I would choose it again.
Mel's e-mail address is: pnthrsfans1 AT aol.com (replace "AT" with "@")