Will it be the end of me soon if no hormone therapy? PSA Doubling

By brain2

1 min read

At age 55 (11/2018) I had a Radical Prostatectomy for prostate cancer by my Urologist through my previous insurance carrier just before being laid off after 20+ years. My PSA was 7 and Gleason 4+3, Pt3aNo, positive margin. I believe at about 9-11 months or so after my surgery, my PSA started doubling, and Salvage therapy was recommended by my Urologist.

Radiation without hormone therapy

Now in April / 2021 my PSA is at .2 and am scheduled to receive EBRT radiation only, with no Hormone therapy on 4/12/2021. The Radiation Oncologist through my new insurance (Kaiser) does not believe (strongly) that the risks outweigh the benefits of going through hormone therapy (Lupron).

All I read, is that for high-risk cancer, radiation + hormone therapy is a must. Yet the Kaiser Radiation Oncologists states that recent studies suggest hormone therapy is not needed. Could it be a cost-saving decision for Kaiser or is it in my best interest?

Emotional toll of prostae cancer

I feel I have 1-2 years of life at most as I read through all the articles on the Internet. I’ve tried to hold back tears as I research the Internet for answers. I want to just release my tension through crying but I hold back so much. No one to talk to that is in the same situation as I am, and is taking every bit of energy I have left.

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Tony Collier Moderator & Contributor
Hi <inline-mention username="brain2" user-id="3268238"/> I'm Tony and I'm one of the moderators. I'm afraid I'm not medically qualified to advise on your particular position regarding whether you should have HT as well as ERBT. Maybe in this respect it would be worth seeking a 2nd opinion? However, I'll try to put your mind at ease a little if I can. I was diagnosed with advanced stage prostate cancer in May 2017 aged 60, PSA 129, Gleason 5+4 with extensive mets throughout my skeleton from pelvis to skull. I was given a worst case prognosis of 2 years with a best case of 10 years and an average of 6-7 years. Well here I am coming up to 4 years. My PSA hasn't been recordable now for over 3 years. My treatment has been HT (Prostap) coupled with Abiraterone (Zytiga). In your case I'm aware of a number of treatment options ahead of you should the ERBT not work including chemotherapy (Docataxel and Cabazitaxel) as well as Abiraterone and/or Enzalutamide plus at least two other similar drugs. Then there's Radium 223 and plenty of trials that you could access. I have a friend here in the UK who seemed to have run out of all treatment options but is now on his third trial and it's brought his PSA down from over 500 to 150. Please don't despair. I know it's horribly tough. I know my treatment will fail at some point but the longer I stay stable the better chance of something new coming along. In the meantime I try to stay as fit as possible and despite 4 years of HT and it's grim side effects today will day 331 of a streak of running or hiking (some days both) every day. I really recommend exercise to help cope with physical and mental well being. I hope that someone can give you the specific advice that you have asked for.
Richard Faust Community Admin
Hi <inline-mention username="brain2" user-id="3268238"/>. Your concerns and confusion are certainly understandable. First, I want to join <inline-mention username="Tony Collier" user-id="3271452"/> in saying that treatments for PCa have advanced quite a bit in recent years and survival right along with it. Second, I want to address your question on salvage radiation with vs. without hormone therapy. In all honesty, the research points in both directions. This research paper mirrors your initial thoughts concluding "The addition of 24 months of antiandrogen therapy with daily bicalutamide to salvage radiation therapy resulted in significantly higher rates of long-term overall survival and lower incidences of metastatic prostate cancer and death from prostate cancer than radiation therapy plus placebo:" <a href='https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5444881/' target='_blank' rel='noopener noreferrer ugc'>https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5444881/</a>. In contrast, this research found that for those with a lower PSA (0.6ng/ml or less) there was no overall survival benefit for those receiving hormone treatment in conjunction with salvage radiation: <a href='https://www.medpagetoday.com/meetingcoverage/astro/82181' target='_blank' rel='noopener noreferrer ugc'>https://www.medpagetoday.com/meetingcoverage/astro/82181</a>. Finally, falling somewhere in the middle is this research which found that short-term (two injections at three month intervals) "could increase the MFS at 10 years, compared to radiation alone, in patients with rising PSA after initial prostatectomy:" <a href='https://www.practiceupdate.com/content/asco-2019-short-course-hormone-therapy-added-to-salvage-radiation-therapy-slows-progression-of-prostate-cancer/85096' target='_blank' rel='noopener noreferrer ugc'>https://www.practiceupdate.com/content/asco-2019-short-course-hormone-therapy-added-to-salvage-radiation-therapy-slows-progression-of-prostate-cancer/85096</a> (Note: the "MFS" stands for metastatic-free survival). So, what do these results mean for you? It means that you are armed with some information to ask your doctor why it is their belief that that hormone therapy is not necessary in your particular case. They may be able to make that case. Don't be afraid to ask for specifics about the research they are relying on. In addition, as Tony said, don't hesitate to ask for a second opinion (note: Kaiser's web site says you have a right to a second opinion). Hoping you get some answers soon and please know that this community is here for you. Best, Richard (ProstateCancer.net Team)
Dennis E. Golden Moderator & Contributor
Our MDs recommend the use of Lupron with radiation - I had surgery and the cancer returned so did the 40 radiation treatments
Dennis E. Golden Moderator & Contributor
If you go to my website <a href='https://www.TheProstateCancerCoach.com' target='_blank' rel='noopener noreferrer ugc'>www.TheProstateCancerCoach.com</a> there is a video on my treatments
Dennis E. Golden Moderator & Contributor
Hi Brian ... I was away from my computer on my earlier responses but wanted to get back to you when I returned. This whole prostate cancer diagnosis has a way of knocking the wind out of you. But just know you are not alone and as fellow survivors we can relate to your concerns. My Experience... When the prostate cancer returned 5 years after my 2013 surgery for a Gleason 9 , I spoke with 2 different radiation oncologists and asked if there was a difference in outcome between Radiation vs Radiation combined with Lupron. The hospital in Connecticut is affiliated with Memorial Sloan Kettering . At that time (201😎 the studies done by Memorial SK were suggesting the combination treatments were more effective than the use of external beam alone. Treatment protocols change over time and based on your situation you may be OK with just radiation. That said ask lots of questions. Trying to get insurance companies to cover things can be a challenge but with sufficient support from your medical team they may reconsider. Here again speak up and press to speak to supervisors for a reevaluation of your case. The internet is filled with lots of information - some is good and some is not so good. In the end my suggestion is take a deep breadth, turn off the internet noise and trust your MD. If you are uncomfortable ask for a second opinion. Prostate cancer is slow growing and it divides slowly. It is not a fast growing cancer. On top of that radiation treatment takes time to impact the cancer - my radiation oncologist told me at the start of my treatment that it can take up to 2 years for it to be fully effective. During that time you can also be given hormone therapy. Hope some of this personal experience helps - It is not medical advice- it is up to you and your team to make those decisions. Please feel free to reach out to any of us. We have all been where you to some degree or more ...Dennis(ProstateCancer.net Team )
Guy Meredith Moderator & Contributor
<inline-mention username="brain2" user-id="3268238"/> , Get a second opinion. Or even a third. It never hurts. I did and saved the family jewels. I had Gleason 7 (3+4), no surgery. IMRT and ADT are a common treatment for my level of cancer but was told I didn't need to do the ADT by a second opinion. I agonized over doing the ADT, but when I told my urologist I wanted to go for it, she remarked that I was giving myself the best shot. I may have "over medicated" but that is fine. Ask around. Guy B. Meredith, moderator.
Guy Meredith Moderator & Contributor
<inline-mention username="brain2" user-id="3268238"/> , Did your OR explain what the risks associated with lupron might be? I'm skeptical and would like more information. 
1. brain2 Member
 <inline-mention username="Guy Meredith" user-id="3261432"/> He did not explain any risks associated with Lupron at all. I basically Googled potential side effects of Lupron. When I first became a member of Kaiser, I reached out to Kaiser Oncologist and stated recommendation from my Uruologist (prior insurance network) that included EBRT radiation and Hormone therapy. He initially stated he would put me on low dosage of Lupron for 3 months plus the radiation as prescribed. As my PSA level reached .20 ( uruologist recommended best at .1 for treatment) I reached out and said I was ready for treatment. I believe at that point in time is when he was not recommending for me to take hormone Therapy. He mentioned recent studies indicated radiation alone is sufficient. Upon googling, I sent email stating research indicated hormone therapy had great results. He left me a voice mail stating nowadays it’s not done (paraphrasing) while radiation. He left it up to me to decide. Who am I to make that uneducated decision ( I thought to myself) and I opted not to do it at his recommendation. He also stated the side effects outweigh the befits ( or visa versa - however the saying goes )
2. Guy Meredith Moderator & Contributor
 <inline-mention username="brain2" user-id="3268238"/> You probably learned that for my situation of Gleason7 a very standard course of treatment is 28 sessions of IMRT (EBRT) and 4 to 6 months of lupron. Again my 2nd opinion OR said the ADT was not necessary, but his advice is based on actuarial tables. He was assuming I'd be gracious enough to die in 10 years and probably that I'd not be worried about sex in 10 years. I had a different take as my family is generally long lived. I was supposed to have two one month injections followed by a 4 month injection. When we went into lockdown for the Corona virus I decided to have the 4 month injection after the first 1 month injection so I would not be around the urologist's other fragile clients until we perhaps went off lockdown. The side effects for such short term lupron are basically the same as almost every woman experiences with menopause: hot (or warm) flashes, needy emotions (cry for no reason), total lack of interest in sex for most of us, fatigue, sensitive nipple/breast, possibly some beginning increase in breast and belly fat. Contrary to what the medical folk think, I was able to have sex every day while on lupron to avoid ED, but can't guarantee that for all men. Longer term ADT has more serious side effects. Again much like post menopausal women. Again, I may have overly medicated, but I was determined to do everything I could. Guy B. Meredith, moderator.
brain2 Member
I thank you all for for taking the time of your day to respond and giving me some hope. It helps me immensely! Tomorrow 4/12 I will start my radiation. I couldn’t reach me Radiation Oncologist as he is on vacation. The earliest appointment I could get for 2nd opinion will be in about 2 weeks. I plan on getting a 3rd opinion also. If Hormone therapy is recommended, hopefully I can still take it even though I would have already started radiation. Although on paper, the possible side effects scare me a bit since I had stents about 5 years ago and have high blood pressure. I also don’t have currently an uruologist that I can consult since I’m now with a new network ( kaiser ). I do plan on requesting an one soon. Thank you all !!
1. Diane Talbert Moderator & Contributor
 <inline-mention username="brain2" user-id="3268238"/>, We are here if you need us. My father went though this journey 14 years ago. Today he is 87 and going strong. He just stop working at 83. This is a long road to travel. I had to get several opinions in my fathers case also. They had him on his was out of here. And your right, the side effects were crazy. But, in the end; he didn't do too bad. It's good to reseach and study up on things, but some things will scare you. Stay in touch, Diane Community Moderator
brain2 Member
Thank you Diane Talbert, Tony Collier, Richard Faust, Dennis Golden, Guy Meredith for all your help and support and for sharing yours stories. Thank you for all tremendously!
brain2 Member
I have 12 more days to go on my radiation therapy and I’m already starting to research medications that I can try should the EBRT therapy not work. I’m not sure if there is a specific medical term that would narrow my search on what I’m looking for.
Gary Member
My situation is similar to yours. PSA 8 Gleason was 4+4, chose prostectomy mainly because I had BPH for 6 years and figured I could kill two birds with one stone. Had a positive margin. I told the Urologist, from my prospective, I think they named it wrong. PSA tested every three months after surgery. First was undetectable, second was higher .04, oncologist said if it got to .2 I needed radiation and possibly hormone infusion. Third PSA 9 months after surgery was .18. Urologist and Oncologist said the cancer was aggressive, PSA will not drop, only continue to rise and I should start the stated treatment which was 9 months after the prostectomy. Here we are 4 months after the end of the treatments and three undetectable PSA’s later, we are measuring my testosterone level and PSA. Testosterone should rise and PSA should stay low. The way the oncologist described it, testosterone is like gasoline to prostrate cancer. Having the hormone treatment will help the radiation work better. Appeal any decision you do not agree with to your insurance company and be emphatic about it. Most times they are trying to save money and will approve the proper treatment. Your not going anywhere. This cancer can just go away with treatment or it can be like luggage and you can have it forever. My neighbors uncle had it reoccur multiple times over 32 years and passed when he was 92. Hopefully none of us have to deal with that. We just need to stay on top of it and make good decisions after doing our homework concerning proper treatment based on our situation. Best to you, and all of us
Dan Franke Moderator & Contributor
Hey Brain2. Always the worst outcome is a legitimate fear. But with early detection, good care, the disease is manageable. Trust your doctors-learn your options. Thirteen years into my cancer walk and still here. Feel free to check in once and a while-be glad to share my story with you. I was 55 when diagnosed too! 68 now plan on many more years. DanF, moderator, <a href='https://prostatecancer.net' target='_blank'>ProstateCancer.net</a>.