I'm 46 and was diagnosed with prostate back in November 2018. My PSA was 9.5 and my Gleason score was 7 but upgraded to a 8. I opted for radiation therapy after receiving several different opinions and doing some deep soul searching. The issue was was plagued with was whatever professional I tapped for an opinion they opted for their speciality. If you go to a hammer the answer to all questions is to hit it with the hammer. I wish I could have spoken to ( 2 ) person in my age range that when down each path to pick their brains on why and how they feel now. I'm about 50% through with my radiation treatments, but I'm not 100% sure whats going to happen at the end of this path.
I opted out of removal after having a bad experience with the biopsy. While being transported to the surgical room, my arm started to itch and luckily a nurse noticed it. Turned out I was allergic to whatever antibiotic they gave me. When I woke from the process, I walked to the restroom to pee and went well. Until, I returned to the bed and turned blue. I woke to a nurse beating my chest to revive me. Needless to say, I felt like crap for days.
Life is filled with unknowns and accidents...I try my best to minimize them.
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biegelboy
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I had the same issues. Whomever I spoke to said theirs was the only way to go. Luckily I found an oncologist (dr Mark Scholz) in Southern California who does nothing but PC. He became my quarterback giving me the positives and negatives of each option. He had no financial skin in the game as most of these guys do. Ask the site for a good prostate oncologist at a center of excellence near you. You won’t regret the move.
I think every patient is fully capable of making that decision for himself after gathering information from experts about the therapy that they themselves practice (and not therapies that they don't practice). In fact, I think it is a mistake to give that power to anyone else. Everyone has biases, but only your biases matter. I advocate against asking any doctor "what would you do?" or "what would you do if I were your father?" Only you are capable of knowing what you should do in your case. No doctor has any expertise about you and what is important to you. Here are some questions I think patients should ask themselves in making this decision.
I would suggest you not come to web or facebook based sites on PCa until your treatment is done. The tendency is for people to reassure themselves that they selected the best treatment by suggesting the same treatment for others, even when the other people are facing entirely different problems or comorbidities... That can cause doubt in your mind about if your decision was correct.
The decision you made was a rational one. There is no one perfect treatment, if there was everyone would get the same treatment. You had issues that made you question having surgery and decided to do radiation. To me that seems a perfectly rational decision based on your experience with the biopsy, and the fact that ALL the treatments come at least somewhat close in successful outcomes.
I'm about to complete my radiation treatments (72, G9, some comorbidities that make me want to avoid intensive surgery), and continue on with my ADT. That was my decision based on my situation. It also was a rational one, and I do try to not push it on others.
Log off the web, stop browsing sites. Give it a break until at least your treatment is done. Talk to your radiologist about your doubt (hopefully you're seeing him at least once a week during treatment), and perhaps ask about the possible benefits of other treatment at the completion of your radiation.
I don't totally agree with Don_1213's suggestion to "log off the web" until treatments are done. I was diagnosed in the summer of 2010 and have been undergoing treatment since then...probably will for life. For most of us treatment will never be done it is a life long battle.
I had a radical removal with the Da Vinci robot and for me that was right. Most of the time we will never really know for sure if another route would have been better so we accept our decision as best for us and move on.
Knowledge is power...the web and this site help you gain a lot of information as well as the experiences of many others. Without the web you would never be able to contact, discuss or read about those experiences.
Keep searching for what is right for your and keep fighting the beast!!
I had a Gleason of 9 when I was diagnosed in Feb 2016 with metastatic lesions on the bones. I decided that RT was the better choice for me because of my age (62) and expected lifespan. Survival rates are very good in patients who have Gleason 8 and opt for either RP or RT. At your age I would have opted for RP, but your decision to go with RT is sound considering that you went into anaphylactic shock after the biopsy. A possible advantage of RT is the “potential” for an abscopal effect, especially with concurrent ADT. Cheers, Phil
I don’t know what antibiotic you were given. But in 1972, I was returning from a tour overseas. For safety sake I went to the doctor and was given a mega dose of an antibiotic. His last words, “You’ll be fine; however your urine will be blue, don’t panic. It will dissipate in 24-36 hours.”
In 2004, the numbers led me away of a Prostecomy to Brachytherapy with 25 sessions of IMRT as my primary treatment for a Gleason 7(4+3). Both clocked in at about 92% effective. PSA never really came down and less than a year later, PSA exploded. Mets and a six month chemo-hormone trial.
Research Medical Oncologist told me not to second guess, either primary treatment would have failed in my case.
It's natural to question one's treatment choice. Futile, but people do. You made a choice with the input of your doctors, including your preferences and assessment of risks for side effects. You are well down that road now, so there's no point in looking back. For my G9, 5+4, stage cT3a case, I also chose radiation and ADT (3 years).
To your question of what happens from here on, now that has some validity. If you develop any issues during your radiation therapy, be sure to tell your radiation oncologist (RO). They have ways to help with various things that can happen. The main thing I dealt with was frequent urination toward the end of mine, up about 8 times a night to pee. That got better quickly after radiation, and by around six to eight weeks was back to normal. It's been a few years for me now, but my urinary habits are the same now as before any of this happened.
After the radiation is complete, you'll continue ADT for some period, also guided by your doctors. For high risk cases, there seems to be some consensus around 2 years, but that may vary with the individual case.
When the ADT is finally done, you'll be monitored for PSA level every quarter or so, for a long time (5 years is common). Your PSA and testosterone levels will vary after the ADT ends, in a quite unpredictable manner. You want to end up with low, steady PSA, hopefully less than 0.5 or so, and a normal range testosterone level.
Greeting biegelboy. We all have gone through "could have" "would have" "should have" phrase of Pca so you're not alone. You made a decision based upon what you knew at the time, so no looking back. Just make sure you get a good Pca Oncologist and I assure you, you'll be around until at least the year 2060. Now here comes my questionnaire. Where are you located? being treated? doctor(s) names(s)? This info is voluntary but it helps us help you and helps us. Post this info at a later date on this site (don't respond to me).
I generally think that surgery is appropriate for men with G7 or above where it is thought that the cancer has not escaped the prostatic capsule. If the capsule has been breached, you're going to have radiation and probably ADT anyway so why add surgery to that? That said, for various reasons that are unique to the individual, even when the PCa is a more aggressive variety and the capsule has not been breached, the person prefers radiation and ADT to surgery. However, don't fool yourself into thinking that you'll escape the side effects of surgery with radiation and ADT. Studies show the same rates of ED and incontinence with surgery and radiation but with radiation, this happens later versus right away. As a wise man once said, "nothing happens fast with radiation". Even after your radiation therapy is over, it will impact your bodies, change your tissues and, therefore, has the potential to produce side effects.
Wow on that reaction to whatever antibiotic they gave you. The cipro I was prescribed has three pages of dire side effects, which I luckily didn't suffer from. RP surgery was off the table for me -- the two urologists I spoke with wouldn't offer that as I had had TURP surgery years prior. I was offered radiation but after research, including hitting this site hard, I went with HIFU instead. My urologist wasn't keen on HIFU or brachytherapy but why would he be -- neither is in his bag of tricks. Somehow I also got the notion that brachytherapy was passe and there was no one I spoke to promoting it.
I just read you bio. Wow are you fortunate that you cut your head! No matter what, if you’d not had that psa, it’s likely the PCa would have ravaged your body and by the time you had symptoms from metastatic disease treatment would have been futile. Focus on your good fortune! Hang in there and know there are lots of folks who understand and give a damn.
Well 13 years ago I was about where you were. I just a few years older and decided on surgery. I went almost 7 years in remission. Then I went with hormone therphy. My cancer is in stage IV and I have completed a number of different treatments. Imunno, radiation 3 different places, surgery and chemo Taxotre. but I have been blessed and we have kept it under control. I’m doing a fairly new treatment for those who have it only in our bones. It’s Xefego radiation. I’m still here. After 13 years so I’m happy.
What you need to do is do the research on everything you can. Every ones case is different. No 2 are the same. So you need to take your numbers and know what works for you. What worked for me may not work on others. I know a guy who was just finishing his 10th chemo treatment. He looked good except he lost his hair. His PSA was .001 that was two years ago and now he just does 90 day hormone treatment. While his numbers are slowing rising he is doing great. I have a friend and he did what you are doing. He’s in remission and been there for 5 years. He gets Hormone treatment shots every 90 days. I also know others that nothing slowed or stopped it. My dad chose to stop all treatments he had a great 2 + years before he got real sick he was 90 and alone so he chose what was best for him. In a nut shell that is what I believe you should do. You decide what is best for you then do it. Don’t look back or think I should of......... no we just don’t know. Only God knows when your time is up. Get the knowledge you need, pray, meditate and make your decision. It’s really all you can do.
Take care. I pray all works out for you and you have a large support group.
Wishing you the best. You have a long road and many years to travel.
Thanks for all the feedback and positive wishes. All the comments were super helpful. As it was said above, each person has to select the best path for themselves and walk that path into the unknown, but I find it helpful to know others have made it through. It gives me hope as I stumble in the darkness.
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