I was diagnosed in January 2008 after a routine PSA showed my PSA had increased from 1.2 to 5.4 in just over one year. My twelve core biopsy showed only one positive core with 50% involvement in the right lateral apex including the perineural space. My Gleason was 7 (4+3). Subsequent testing in February showed a clean Bone Scan and CAT Scan with no evidence of metastasis.
My urologist indicated I should take my time to decide upon a course of action. He is an experienced surgeon on the Da Vinci Robotic equipment and was prepared to perform that type of RP, if I chose that route. I was fortunate enough to have a couple of close friends who had been down this road before me, one chose RP and the other went to Loma Linda California for Proton Beam therapy when Loma Linda was one of two places in the country that had the Proton Beam. They both provided extremely valuable insights.
The four key things I learned from my friends were:
(1) Research this disease on the Internet; through books; and through friends who have been down this road before you. There are so many different treatment options and the decision falls to you. You cannot abdicate it to the first doctor you talk to.
(2) Get multiple opinions from different types of practitioners. The first specialist you see is a Urologist who performs your biopsy. Urologists are surgeons and tend to favor that course of action. You must also see a Radiation Oncologist; who would educate you about IMRT (Intensity Modulated Radiation Therapy) EBRT (External Beam Radiation Treatment)), Seeds, and if you are lucky, about Proton Beam Therapy. I saw two urologists and two Radiation Oncologists and I'm damn glad I did.
(3) Gleason score matters. Not just the total but the split. My score was 7, but the split was 4+3 denoting a higher percentage of type 4 cells than type 3 cells. Therefore, while only one core testing positive for cancer might have given me a false sense of security, the 4+3 told me that the cancer, while caught early, was probably more aggressive.
(4) Read your medical report, don't just take your doctor's word for what's in there. My friend who underwent the RP had chosen not to have nerve sparing surgery because the results showed "cancer present in the perineural space." What does that mean? It means that if you performed nerve sparing surgery, you might miss some cancer cells. I found out about my cancer being in the perineural space and about my Gleason 7 being 4+3 when I read my report, not from my doctor.
While I felt both the Urologist and Radiation Oncologist in Lancaster, PA were quite competent, they tended to treat me as though I were a Gleason 6 patient. I don't know if they did this to spare me additional worry about my diagnosis, but they were both on a path of less aggressive treatment of the disease. My Urologist promoted Laparoscopic Da Vinci Robotic nerve sparing surgery, while the local Radiation Oncologist discussed the choice of Seeds or IMRT. When asked about proton beam treatment, they both reacted as if it were still in its experimental stages.
I went to The Hospital of The University of Pennsylvania (HUP) in Philadelphia for second opinions for both surgery and radiation. I chose HUP because one of the foremost Da Vinci practitioners in the country was there and because they were in the process of installing a Proton Beam accelerator there. I was fortunate to get an appointment with the Doctor responsible for the installation and management of the Proton Beam facility who happened to be both a Radiation Oncologist and a Medical Oncologist. I was certain he would give me the straight scoop on Proton Beam Therapy without dismissing it as experimental. (By the way, my friend who underwent proton beam therapy in 2001 has had no side effects and no increase in his PSA for seven years. And this "experimental" procedure has been performed tens of thousands of times in six facilities in the states and numerous facilities overseas.) My HUP Radiation Oncologist explained that newer forms of Intensity Modulated Radiation Therapy (IMRT) with Calypso seeds to aid the aiming of the beam were essentially the equal of proton beam therapy for sparing healthy tissue and killing the cancer. This development will make the proton beam less necessary for treating prostate cancers in the future and leave the proton beam for brain cancers and some other childhood cancers that cannot be treated with conventional EBRT.
After talking with the two HUP doctors, I realized that I was not in a low risk category, but an intermediate risk category due to the fast doubling rate on my PSA and the Gleason 4+3. Furthermore, I learned that this intermediate risk precluded Brachytherapy (radioactive seeds implants) as a form of treatment. More aggressive treatment was warranted. I decided upon IMRT guided by Calypso Seeds. Calypso Seeds implanted in your prostate permit recalibration of the beam during each treatment session based upon slight movements of your prostate due to gas bubbles, a full bladder, or movement by the patient. It is essentially a GPS guidance system for the prostate. The net result is higher dosage of radiation to the tumor and less exposure to radiation for healthy surrounding tissue. The dosage due to the increased accuracy was going to be about 50 centigray higher than the IMRT in Lancaster. HUP could give me 792 centigray versus less than 750 centigray at the local facility. Higher dosage of radiation means lower chances of metastasis.
Another issue pointed out to me at HUP, but not in Lancaster, was with temporary Androgen Deprivation Therapy (ADT) for seven months in conjunction with IMRT, your prospects for long-term survival are greatly improved. The ADT shrinks the tumor and reduces the risk of metastasis while the radiation works its magic.
Once I had determined that my likelihood of long-term survival was virtually identical with either Da Vinci or IMRT, I chose IMRT. One of the big factors in choosing IMRT with Calypso over Da Vinci Robotic surgery were quality of life side effects. An experienced surgeon will tell you that his patients have low incidence of side effects. Yet they will also tell you that you will wear a catheter for five weeks for your urine, and that you may have to wear a diaper for months or forever for stress incontinence once the catheter is removed. That may be fine if you are 80 years old and sit in your living room watching FOX News all day, but if you go to work or want to be active in your retirement, it sucks. Your sex life will suffer, or be non-existent in a high percentage of surgical cases. If you have perineural involvement, and take the sensible route of foregoing nerve sparing surgery, you will need a vacuum pump to get an erection. Good Luck with that!
While radiation does have side effects, with more accurate direction of the beam due to IMRT and Calypso, the incidence is greatly reduced.
I have almost completed my nine weeks of IMRT and I am happy to report that my side effects to date are minor. The radiation does cause irritation in the area and has had slight effects on my bowels and bladder. The increased frequency of urination has been largely resolved with a prescription for "Flomax." The urgency is still there but I sleep all the way through the night about half the time. They warn about diarrhea as a side effect of radiation, so I cut back on roughage and have had the opposite problem.
The ADT has given me spontaneous sweats occasionally rather than true "hot flashes." It's rough on the libido, but doesn't prevent sexual activity if you didn't have any ED issues before you began treatment. The one miserable side effect, but short-lived, was severe joint pain after the injection of Lupron for a few days. They also warn you about mood swings and other psychological effects. My wife might argue otherwise, but I haven't noted any serious issues in that regard.
Radiation treatment has a common side effect of causing fatigue. I have had less energy than before I began treatment, but I drive 150 miles roundtrip to Philadelphia every morning for treatment, go to work until 7PM every night, I am taking ADT, and, of course, I have cancer, which is a depressing thought. All things considered, I am a bundle of energy.
So far, I am happy with my decision on all counts. I'll keep you all posted.
It has been nine months since I completed IMRT and my recovery from the radiation has been excellent. The fatigue from radiation lingered for a couple of months, but finally faded. I don't have any significant ill effects from IMRT, which I attribute to the accuracy of the Calypso guided targeting. I think the damage to surrounding healthy tissue must have been minimal, because all systems are functioning as they should. The only concession to the treatment is that I take Flomax. I'm not sure I need it but I sleep through the night most nights and don't have any urgency. I don't know what the difference might be without Flomax, but since I don't have any noticable side effects from the Flomax I'll continue taking it.
The ADT ended at the beginning of January 2009 (my last 90 day shot was in October 2008). As expected, the effects of ADT linger for several months. It took about three months for the sweats to go away. My libido is now showing signs of life. And I see my muscle tone coming back. While being treated with ADT, I added a couple of inches around my waist without adding more than two or three pounds. I think the added girth came from muscle mass that was lost and replaced by fat, so I gained inches and not pounds. I'll be happy to see that reverse itself, although I suspect it will take some effort. At the rate I'm going, I think the effects of the ADT will be gone by this summer.
The good thing is that my PSA has been declining. In October it was 0.8 and in my recent check up it was 0.3. It is supposed to take from one year to eighteen months for it to bottom out, so I'm right on track.
I've received quite a few emails from people considering IMRT in general and Calypso in particular. While only time will tell if this treatment cured my PCa, I'm very happy with my decision. I cannot imagine a better treatment for me, with my diagnosis and prognosis, to address the disease and minimize side effects.
It has been a while since I've updated my history. I am doing very well. I'm not having any problems with regard to two of the "quality of life" issues that sometimes follow radiation. I have normal urinary function and sleep through most nights. The bowel symptoms one sometimes has during treatment and after are long gone. In my case, I only had some irritation during the radiation and that quickly resolved itself after treatment and things have been completely normal since then.
The only area I'm not completely happy with is that my sex life has not returned to normal. Obviously, there are no avoiding some of the issues whether they remove or irradiate the seminal vesicles. But I guess I had hoped to return to something closer to my pre-treatment status. No such luck. While I am still able to have and enjoy sex, it very different than prior to treatment. It takes a little more work to get there and ain't quite as satisfying as it used to be. I still haven't tried Viagra, but I will.
I still feel very strongly that I made the right treatment decision for me. The Calypso targeting seems to have done its job in limiting collateral damage from the radiation. Surgery really wasn't an option because the cancer being in the perineural spaces pretty much eliminated the possibility of nerve sparing surgery.
I'm due for another PSA in about a month. I'll post the results when I get them.
Since my last update one year ago, I have been seen twice by my radiation oncologist and my PSA has continued to decline. In April 2010 it was 0.24 and November 2010 it was 0.18.
I continue to have only limited side effects with normal bowel function and normal urinary function with the assistance of Flomax.
I have had moderate ED since my treatment, but am able to enjoy sexual activity without the use of drugs such as Viagra.
I still feel that the treatment I received was the best choice for me and feel that I have had a surprisingly good outcome from the standpoint of limited life style impact. Only time will tell if the treatment has succeeded in providing a long term cure for the cancer.
Another comment, I have been participating in a support group through "US Too" in Lancaster, PA and I have been encouraged by the great number of men who have had recurring disease and have managed their disease for many years with a wide variety of secondary treatment modalities. Given the objective of "dying with the disease and not from it," the effectiveness of some of these secondary treatments seems to promise an excellent chance of many years of productive life even after a recurrence. Some of the men I have met through US Too have been dealing with a recurrence of prostate cancer for 15 years or more [As have some of the men who have shared their experiences on this YANA site - see the Survivor Stories Page where there are already some 20 year survivors.]
My last check up in November 2011 indicated a slight bounce in my PSA, which my doctor said is not unexpected. Overall the doctor is very pleased with how well I've done, saying that my PSA's have been running to the low end of what they anticipated. The real test will be when I get rechecked this month.
I've have virtually no side effects other than mild ED. I sleep though most nights. Lately, I've slept through 80% of the time. If I need to get up to urinate it is only one time. There have been no bowel or urinary side effects.
One note of possible concern to ADT patients: I did have heart surgery in 2010, which according to my oncologist may have been precipitated by the ADT I had in conjunction with my treatment for Prostate Cancer. If you are prone to coronary artery disease, you probably should monitor your coronary arteries with Stress Tests with imaging after undergoing ADT.
Everything is going well. My PSA remains low and my side effects are minimal.
At last check up in May 2013, everything was as expected. While there was a slight bounce in PSA, this was not deemed significant. I'm not losing any sleep over the uptick, but I will watch the trend going forward. I still consider myself very fortunate, as compared to some of the folks I know who underwent RP either robotically or with open surgery. Those guys seem to have many more difficulties with long term side effects.
Now 5 years out from treatment and doing very well. My PSA remains quite low for IMRT treatment. Prognosis is excellent. Side effects remain minimal, if not slightly improved. Switching to annual meetings with oncologist. Next check up is December 2014. Having started as an intermediate risk patient, have no regrets whatsoever. Feel that I definitely chose the right course of treatment for my particular circumstances.
A good check-up in December 2014 marking six years plus since my treatment was completed. My PSA remains low and I continue to do well. Next appointment in December 2015.
It is now eight years since my diagnosis and seven and a half years since I finished IMRT treatment. I have heard negative comments about radiation as being "the gift that keeps on giving." Yet that really hasn't been my experience. Compared to my friends who had surgery, I am very satisfied with the treatment modality that I chose. I'm still tracking a very low PSA for someone post IMRT at 0.15. That reading is both my current reading and the average of my last 5 tests.
Now if I were to point out a potential negative, I did have a short course of HRT (hormone replacement therapy). It was supposed to last seven months, but I was warned that the effects linger for quite a while after the therapy is discontinued. While the obvious side effects of HRT, like hot flashes, abated years ago, my testosterone is still a low 147. That is a mixed blessing. It adversely effects your energy and your libido, yet a high testosterone level supposedly creates a positive environment for metastisis. "The FDA requires all testosterone products to include the warning that T [testosterone] therapy is contraindicated in men with a prior history of prostate cancer." That opinion is not universally held in the medical community, but who wants to the be first post treatment Prostate candidate to find out the pro-testosterone crowd is wrong.
While HRT, may be the real gift that keeps on giving, it shrinks the tumor prior to IMRT and improves the outcome of IMRT treatment. Consequently, I am glad I received the HRT based upon the fact that I am still healthy approaching the eight year point.
Feel free to contact me with questions and concerns. I'm happy to pay it forward.
My recent check up (last week) showed continued good health. My PSA has gone down each of the last three tests covering 18 months. Most of the side effects common in patients treated for Prostate Cancer have, in my case, either been non-existent or mild. With the help of Flomax, my only urinary symptom is needing to go at night. During the day, I can go six hours between trips to the rest room and that's while consuming a half gallon of water a day. I also have had moderate ED through out the post treatment period. Probably no worse than most PCa patients.
They often talk about Radiation being the gift that keeps on giving, but in my case I think most of my issues are more related to the seven months of hormone deprivation treatment (ADT) I received around the time of my IMRT. While I know it was given to shrink the tumor to make IMRT more effective, my testosterone levels have never fully recovered after the ADT. Furthermore, I had open heart surgery two years after ADT, and my doctors believe that there is likely a link.
Despite those concerns, I have no regrets about the treatment modality we selected. I am nine years out and doing extremely well, with limited side effects. The ED aspects of my side effects have plenty of contributing factors; bypass surgery, blood pressure meds, mild diabetes, age, and, of course, ADT and radiation.
The point I'm trying to make is that any treatment is likely to have side effects. On the other hand, living trumps virtually any side effect that you can imagine, except being in a persistent vegetative state. I had a moderate to high risk cancer. Only if you have a low risk cancer or are quite old do you have the luxury of considering "active surveillance." Anecdotally, my cousin was diagnosed with PCa about a year after I was. He asked what I would do. Given his numbers, low Gleason, minimal involvement shown by the biopsies, and slow rate of PSA increase, I suggested he talk to his doctor about Active Surveillance. That's what he decided to do. Eight years later he still hasn't needed treatment. Lucky fellow! No side effects. No impact on his sex life.
I would have loved to postpone the side effects (cause, if nothing else, any treatment will mess up your sex life), but if I had shunned treatment or even postponed it, I would have been dead and buried and missed the births of half of my grandchildren. My PSA had a doubling rate of about 5 months. I had a Gleason that was closer to 8 than to 6, and the PCa was already at the outer edge of the prostate gland.
I guess the moral of that story is don't rush to treatment just because somebody says you have prostate cancer. On the other hand, if you have any indication that the cancer is aggressive, what you save in quality of life by delaying the side effects you may pay for with your life.
Greg's e-mail address is: crowsfeet45 AT gmail.com (replace "AT" with "@")