PROTON RADIATION TREATMENT WITH HORMONAL THERAPY
It is important for prospective patients to listen to the Proton Therapy Center doctor carefully if hormonal therapy is suggested for treatment along with proton radiation. Understanding the expected effects on your body and how long the effects may last is critical to being an informed and satisfied patient.
Roughly 1/3rd of the Proton Therapy Center patients are having hormone treatment and given Lupron shots along with proton radiation. Higher risk patients are given the shots. Higher risk is defined as a Gleason score of 7+ and/or a PSA greater than 10 and/or T3 disease and /or many positive biopsy cores. Hormone shots are also used for those with enlarged prostates to reduce the size of the proton therapy target. Two shots are normally given, one before treatment and one during treatment. The second shot is to maintain the size of the prostate reduction as keeping the target the same size in important to eliminate a marginal miss. Shots are given in different doses for different patients. The decision to pursue hormone therapy is left to the patient who generally relies heavily on the doctor’s recommendation.
While talking to patients in the patient’s dressing room it appears that 100% of the hormonal patients experience erectile dysfunction (loss of sex drive) and this loss will continue as long as patients have hormone therapy. It is not clear when the effects wear off and this likely varies among patients.
It is important to understand that treatment causes no real problems with the basic sexual plumbing and that Lupron is a very effective treatment for cancer but it dramatically reduces one’s testosterone level and eliminates one’s sex drive and makes an erection difficult. Remember the doctor’s goal is to eliminate cancer. Although loss of sex for a period of time may be a concern the time likely compares favorably to patients having their prostate surgically removed (and proton radiation is painless).
Hormone therapy patients also normally experience hot flashes, possible weight gain, and sometimes mood swings and fatigue. We suggest you obtain Sexuality and Cancer published by the American Cancer Society and available in the Proton Therapy Center lower lobby.
A few more points to remember are that any radical therapy will impact ED, there is a natural decline of erectile function with age, men with good erectile function prior to treatment will maintain this function post treatment and that medications (Viagra) will help some patients.
Many questions arise concerning testosterone. The normal range is 241 to 827. Many things effect testosterone readings, even including the time of day. The Lupron shots drive the testosterone reading to near zero and temporarily eliminate sex drive. After treatment testosterone reading will return but not necessarily to the same level but that is generally not a problem.
(P) proton therapy only (PH) proton + hormonal therapy
If sex was important before treatment and you had Lupron shots, how are you doing now and would you still recommend proton therapy? How long did it take you to return to where you were before treatment? Please send us your input. Send your reply to Ban Capron firstname.lastname@example.org or if you receive this by e-mail simply click reply to Joe Landry. We are looking for comments on how you function either during treatment or well after. You can provide “your first name, e-mail address (optional) and completion date” or say “anonymous and completion date”. Also indicate if you had proton radiation only (P) or proton and hormonal therapy (PH). Always put your completion date. Please be brief.
I am half way through I can barely get an erection and even if I could I have no sexual feeling in my penis whatsoever. My testosterone has dropped from 450 to 18.
Don (PH) email@example.com. completion March 2008
At the 90 day point after completion my PSA was less than 0.1. I can’t really claim any side effects either during or after treatment so I’m pretty happy with the whole deal. I had two hormone shots, in August ‘06 and in Dec ‘06, so my testosterone was still low at the 90 day point and I still don’t have any hair on my chest but everything else seems to be in working order.
Gordon (PH) firstname.lastname@example.org completion January 2007
Wanted to report my three month findings. My follow up was on Wednesday, 11-21-07. PSA 0.1 – Testosterone 26 – Normal 240-800 – 4/07 Reading was 332. Dr. Choi tells me it will be 2-3 months before the T begins to head back to normal. Also, my PSA should rise during this time then level off. I am told not to panic in the next year and a half while the PSA stabilizes.
James (PH) email@example.com completion August 2007
My first 90 day check was in 2/08 at which my PSA was less than .01. My first shot was in 6/07 and the second in 9/07 at the start of the proton treatment. From then, my sexual desire went to zero, but I was able to maintain an erection and perform intercourse about once a week. Now, the sexual functions are almost what they were before treatment. No other side effects.
Dennis (PH) firstname.lastname@example.org completion March 2007
When I started Proton therapy, I was 5 months into 6 months of Lupron. Thus my hormone shots expired mid-way through Proton treatment. My sex interest ended about 1.5 months after the first shot and returned about 3.5 months after the second shot ended (just before the first doc follow-up). The interest and ability all came back normally after sputtering for a couple of weeks. On my 3-month follow-up trip, my PSA was down from 5.2 to 0.175. Dr. Choi said it “might” rise “some” the further removed I get from hormone, but it should stabilize at a low level after 12-18 months. So far, so good. Charles (PH) email@example.com completion November2007.
Toward the end of my radiation therapy, I began to recover a small amount of my former erectile function. At 2 weeks post radiation completion, there is some slight penile sensitivity, but I remain in a rather “neutered” state. My libido has been zilch in the 4 months since the first Lupron shot however, this is a small price to pay for avoiding the agonies of a spreading cancer. Fortunately my wife is fully supportive. Don (PH) firstname.lastname@example.org completion March 08
I was able to have an erection, off and on, during most of my radiation therapy, save the last two to three weeks. Then, nothing for about two months. I have just passed my six month follow up (03/13/08). My PSA is .317, my testosterone level is 340. At the time being, I am having no problem with ED.
Peter (PH) email@example.com completion September 2007
WARNING: Make sure you understand the side effects of hormone shots before having them! If I had it to do again, I would absolutely not accept the second hormone shot. I certainly was not warned by my doctor just how seriously the hormone shots would affect my sex life. 7 months after my second hormone shot my testosterone has returned to 79% of pre-treatment level but my sexual interest and capability is still lagging. Phil M. (PH) firstname.lastname@example.org completion September 2007
As soon as the effects of the hormone therapy wore off 2 month after completion everything returned to normal. Proton therapy was everything it was touted to be and better. I have had absolutely no after effects. Actually, in some respects I am better off after therapy. Before treatment I had problems with termination of urination when standing at a urinal. Now I have no problems at all. Proton therapy is the way to go. Anonymous (PH) completion March 2007.
I am able to function sexually. I don’t seem to have the same drive that I once had and it takes more build up time. I do still enjoy sex but, it is different. I will be taking this summer to get in better shape and I may try oral therapy to see how this affects my function and drive. As I increase my body strength I hope it has an overall effect on me. My testosterone was 332 prior to shots and dropped to near zero. 4 months after the last shot it was 26, 7 months later was 264 and 11 months later 308. As my testosterone moved back towards the normal level I began to feel more like myself. I am going to spend the next three months trying to improve my physical conditioning.
James (PH) email@example.com completion August 2007
Regarding ED. As soon as the effects of the hormone therapy wore off everything returned to normal. Proton therapy was everything it was touted to be and better. I have had absolutely no after effects. Actually, in some respects I am better off after therapy. Before treatment I had problems with termination of urination when standing at a urinal. Now I have no problems at all. Proton therapy is the way to go. Nelson (PH) firstname.lastname@example.org completion May 2007
It is now December 2008. Although I continue to have periodic episodes of hot flashes in the early morning hours (last shot 05/07), ED which occurred during treatment (although desire decreased only slightly) was restored with Viagra. Orgasm seems to be more intense than before treatment but more difficult to achieve. Proton therapy is still the best treatment when one considers the statistics on side effects with other protocols. Ron (PH) completion email@example.com June 2007
I had the first of two Lupron shots 1/30/08, the second during proton therapy on 4/28/08. I completed proton therapy on 6/6/08. I had excellent erectile function before treatment and have been able to get erections all through and after treatment. My ejaculations diminished in volume and four weeks after the first hormone shot my orgasms became dry and weak. As treatment progressed it took longer to reach orgasm and they were always dry. I am writing this ten days after last treatment and can still satisfy my wife. Hormone treatment has reduced sexual desire to a very low level.
Anonymous (PH), completion 6/6/08.
As they predicted, I lost a lot of my drive to keep my body in physical shape but am very busy intellectually, spending about 6 or 7 hours a day in front of the computer on the internet and writing historic articles. My urinary stream has improved and I have no incontinent problems although I’m still getting up 2 or 3 times a night to urinate. Mainly it is the night sweats from the hormone therapy that wakes me up. My testosterone level the last 3 months has jumped from 18 to about 120 so the effects of the Lupron are finally beginning to wear off. Even my testacles have grown back to about half the normal size from an almost completely gone state mid-way through the radiation. After the first hormone (Lupron) shot in 11/08, my libido had fallen to absolute zero. I became a complete eunuch for awhile with no penile firmness whatsoever, not even a urinary hard-on in the mornings. Now the erections are returning slowly. I gave up on Viagra because of the side effects (dry throat and nausea) and because I worry about the interaction with my hypertension medicine. I’ve had some minor colon irritation and sensitivity, enough to make me cut down on spicy food a bit. I’d say I’m a little more prone to soft stool BMs than before but it is no real problem. Some of my body hair thinned out as they predicted but it is a blessing as I was too hairy to begin with. I’ve had a ravenous appetite and gained 10 lbs but there is a solution for that. I’m now in the market for a 35 to 40 ft multi-hull sailing yacht so I can resume my voyaging down in the Western Caribbean as I did for many years. When I can get back to spear fishing, my favorite sport, I’ll shed the excess pounds and get the muscle tone back quickly by spending 3 to 6 hours a day in the water free diving(without tanks). Used to free dive to 50 feet in the crystal waters of Yucatan, Belize and the Spanish Main.
Don (PH) firstname.lastname@example.org. completion March 2008
Hormonal shots (Lupron) reduced my testosterone from a baseline of 525 to 49 (post PT). 14 months later it has rebounded to a level way beyond my baseline (before two doses of Lupron and PT); in fact beyond a normal limiting range of 827. There is no explanation for why my testosterone keeps increasing! My physician believes my PSA keeps increasing because the testosterone keeps increasing. If PSA goes beyond 2.0, then there will be concern because this may mean biochemical failure of treatment. My libido also keeps increasing (that is good as is the potential to lower the risk of cardiovascular problems), but I still have ED and am on Cialis. I have to conclude that the effects of Lupron may not be fully understood. In addition, I continue to have night sweats that started with the first administration of Lupron. Why am I having night sweats two years after cessation of Lupron…and increasing testosterone?
Anonymous (PH) completion June 2007
I’m happy to share whatever I’ve learned from my own experience and also from extensive research among the growing mountain of literature available mostly to the medical profession but also of interest to us patients. Firstly here are some sites that I scan frequently for new developments in the prostate cancer field, these are free medical email lists of abstracts, research data, and drug trials that you can subscribe to for your edification. Having been an EMT, perhaps I have more interest in the medical side of the Proton Therapy and the growing bulk of research.
I’ve gained a world of information from these lists that was not offered to me prior to my radiation/hormone therapy but I am quite satisfied that the oncologists at the Proton Center chose the correct path for me. Hormone Therapy is an adjunct therapy with radiation when certain parameters are present. The HT will shrink the tumor, and the size reduction helps the radiation beam to be more centered and concentrated. About 30% of the patients undergoing PT with me were also taking the Hormone Therapy. My Gleason score was 6(3+3) but my PSA had risen to 8.8 and had done so rather rapidly, indicating a potentially aggressive cancer. Dr. Lee prescribed the oral HT medication for a month prior to my beginning the radiation regime. And then during the week of preliminaries I received the first of two Lupron shots. By the time I started the radiation, my tumor had already diminished in size and my PSA was way down to 0. Knowing what I’ve been able to learn about HT, I would not hesitate to receive this therapy again, but at the time I was ignorant and just believed the doctor knew best how to treat my particular tumor. The initial HT symptoms were mild and not much of a discomfort. Complete loss of sex drive and the ability to achieve an erection was no real problem at my advanced age and with the complete support of an understanding wife. The hot flashes were not much of a problem initially as I had begun HT and my radiation during the cold season in December. They did become annoying later when things warmed up as I would awaken several times each night in a sweat. Frequent urination was more of an effect of the radiation rather than the HT. My penis and testacles shrunk in size and there was a slight to moderate thinning of body hair. I never experienced sensitive breasts or nipples. Now at the 18 month stage after completing the radiation, my PSA is 0.4, I’ve regained full sexual activities and normal testosterone level, the hot flashes faded away by the 14th month, I’m back to getting up to urinate once or twice a night as before the HT and have fully regained my original quality of life which was excellent without any lingering HT symptoms. There is some slight bone loss with HT and you can help in this regard by taking calcium supplements at the end of the radiation if not before (check with your oncologist as I vaguely remember some supplements interfere with the radiation).
Don (PH) email@example.com. completion March 2008
updated Ban Capron September 2009