Intro Info – I’m 66 relatively good health, obviously gay. During a routine physical I had a slightly elevated PSA score of 4.3 so my primary care doctor recommended me to a Urologist. After some discussion we decided to do a biopsy. The result from the 12 cores was not what I wanted to hear. I was hoping for PHB (Benign prostatic hyperplasia) diagnosis but he told me that they found two cancer tumors one a 3+3 and the second a 3+4 Gleason 7 and a Tumor stage T1c. All still contained within the prostate. But All I heard was CANCER.
The doctor walked me through all the numbers and told me about all the different options I might consider. He was suggesting surgery but told me to come back in a couple of weeks after I had done my own research and we’d discuss treatment options.
In my research I found this group. It proved to be a great help and comfort and gave me some ideas on what to ask my doctor next time I saw him. Hours and hours on online research, reading the post from this site and other support sites, buying a couple of books on the subject, talking to other men who had similar experiences, I soon discovered there are two types of treatment – Standard (covered by insurance and/or Medicare) and “rich man” options.
I decided pretty quickly that surgery was not for me, there were simply too many negatives and long term quality of life issues for me. But the other options did not sound too much better. Impotence and incontinence seemed to be the price you have to pay. The doctor was trying to be reassuring that there are all kinds of ways and work arounds to the impotence issue. Still it was a major factor in my decision making process.
I looked at the robotic Prostatectomy and read that it was the “gold standard” treatment but after only a little more research found there were many other less evasive, less destructive and less long term negative consequences with similar positive long term results.
Radiation therapy seemed interesting but also had issues. I looked into EBRT (external Beam radiation therapy), 3D-CRT, IMRT (intensity modulated Radiation), SBRT CyberKnife, (which a few of you guys here had positive things to say about this), seeding with Brachytherapy, both LDR and HDR, Ultrasound HIFU, MRI Laser Ablation, Cryotherapy, and finally Proton Therapy
I went back last week to talk to my doctor and had 4 pages of questions about all of the above therapies. I told him I was gay and he agreed that gay men have different concerns and he would take those into serious consideration in any treatment path I chose.
My question for this group is – Does anyone here have any experience with PROTON THERAPY?
From my research it seems to be quite a bit less evasive, and the use of proton vs photon seems to reduce the amount of collateral radiation damage. My doctor was not negative about it but said it also has some issues and that being a “newer” technology the long term results were not conclusive.
There is a proton treatment center near me and my doctor was fine with me making an appointment to talk to them. I’m also going to a local oncology center to discuss Brachytherapy and Cyber knife SBRT treatments before I decide.
My Urologist is a surgeon and of course he would recommend surgery because that is what he does but he said I am an ideal candidate for surgery, radiation therapies in any form I chose, and also for proton therapy, but ultimately it was my decision. He even said if I chose to just do Active Surveillance for 6 months he’d be OK with that too. That made me feel more comfortable with him not trying to "up sell" me on one particular treatment or another because of the bottom line profit motive. He made me feel more like a patient than a customer/client.
Right now, I’m considering:
1.Proton Therapy
2.Cyberknife (SBRT)
3.Brachytherapy
I’d be curious to hear any of your experiences with any of these three treatment options pro and con.
I’m thankful for stumbling upon this group. You seem to be a great group. I look forward to sharing
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Congratulations to you on all the good research you are doing. It is an important decision that is well worth the time and effort. I met with 6 different specialists and took about 9 months to make a decision that was right for me. You have plenty of time.
First - it's really a good idea to get a second opinion from Jonathan Epstein at Johns Hopkins on your biopsy slides. Just call your urologist and have them sent - it's a very common thing to do. I think it costs $250 - money well spent. It may not make a difference, or it may allow you to go on active surveillance.
I did look into proton therapy. Despite their overblown claims, the data so far show it is no better and no worse than IMRT. Like IMRT, it is a big investment of time and money. There has never been a randomized comparison, which is why most insurance companies won't cover it. Here's what we know so far:
Knowing that there is no difference in oncological outcomes for any therapy for favorable risk PC, the most important side effect was impotence. Both SBRT and HDR brachy (monotherapy) seem to have the highest rates of potency preservation, so I narrowed my choice to those.
Thank you for the welcoming and quick response . I am having a second lab look at my biopsies and I'm have a genome testing (Polaris) Done. I asked my doctor to do both based on what I've read here and elsewhere. I will read your links. Thanks
Congrats on your research and welcome. Glad to hear you are doing your homework! And like Tall_Allen said you have plenty of time! I was diagnosed in 2014. PSA was 4.5. 1st biopsy indicated GS 6 (all 3+3) and T1c. I was 66 yo at the time and in good health w/o any other chronic-serious heath issues. So I chose to wait. Every year I had a biopsy done and the GS remained at 6. PSA continued to rise. Finally, a few weeks ago in July 2020 I had my radiation TX. I chose SBRT. (5 fractions). The reason I finally had treatment was the Pca had grown from low to almost intermediate. (close to that point). I had SBRT and it went well. I had some bladder irritation for 5-7 days and AZO helped. No other side effects. I have erections and semen. I never had been a big "cummer" My RO did place me on Cialis which I began using before, during and after TX. So this is MY story and like I have said before each person and cancer has its own unique characteristics. Tall_Allen loves providing research links which I found helpful and appreciate. I also engaged in mindfulness meditation which helped me remain focused. I didn't have much anxiety over any of it. So, continue to take your time, weigh options, do the research, get the support you need. And then finally arrive at your decision. With love and many blessings on your journey! Joe
Thank you! This really helps to hear others with similar stories. SBRT is one of the options I am considering and am going meet my first RO tomorrow. We'll see how that goes. I'm working with a Proton center coordinator to get in to see that doctor shortly. I Also do mediation and am not too stressed considering. I do have time to make a decision that is right for me. Thank you again for your reply and I return the love and blessings to you on your journey. Gary
I elected to go with NYU CyberKnife and am happy with the decision. For me it was the least invasive approach of the options I evaluated with a very good success record. After 1 year my first PSA was 1.4 and as of two months ago it is at 0.4.
The staff is very supporting and it is a painless approach. And I have blessed to retain my potency.
I made a List of the pros and cons of each option I was considering and for me at least, the CYBERKNIFE approach came out ahead.
As much as possible you should make an appointment and visit the treatment option centers viable for you and be guided by your inner instincts to your decision.
Wishing you a great outcome regardless of your choice and I hope this is helpful.
Alan, Thank you for your response. It helps me a lot to hear other peoples personal experience in addition to all the medical research. I am making appointments with a CyberKnife specialist and a Proton therapy as well as an radiation oncologist for Brachytherapy. After meeting with them I will make a final decision on what to do. Withing you all the best, Gary
Hi Alan,Appreciate your comments wrt NYU CyberKnife. Glad to hear you are doing well.
I am 72, PSA 4.99 , GL 6 (3+3) with biopsy confirmed cancer in 1 core and suspicious cancer in 4 other cores. My urologist recommended SBRT but I opted for AS because I am terrified of becoming incontinent with PC treatment.
Is incontinence a risk with cyber knife? Would you mind sharing your list of Pro/Con of the different treatment options.
Hi Edward, thanks for reaching out. I can't speak for anyone else's outcomes, but I have not had any incontinent issues whatsoever, and I don't think that's too common. I chose Cyberknife (which is sort of a terrible name as there is no 'cutting" per se) as it was far less invasive than surgery, did not require any sort of pre-catheterization, seemed less likely to create impotency and has been around long enough now to demonstrate a measurable success rate.At the end of the day though, each of us is different, and it's best to meet with the service providers of any option you're seriously considering. My last PSA test in mid May was now .02 and I feel blessed.
Wishing you great success on your journey, and hope you'll do great!
Hi Edward, They do put some gel gently into your rectum and you wait about 20 minutes lying down before going into the main treatment room where you lay on your back for 25 minutes and they tell you it’s done. The center where the actual treatment is done had a sort of sanctuary feel to it. They will pipe in music if you like and I chose meditation music. I found it to be a sort of spiritual experience each time
Thank you for sharing your experience. Knowing that such a good outcome is possible allays some of my fear of the treatment.
Next month I will be 6 months into AS and I am feeling a little apprehensive about having to make any decision if my PSA rises. If you don’t mind I’d like to consult with you again on next steps.
Thought our PC was similar GL6 (3+3) and was wondering how high your PSA was before deciding on SBRT? I just tested 5.5 (up 10% in 6 mths) and am continuing AS until next PSA, MRI and biopsy in September . Would like to anticipate next steps rather than be surprised and pushed into a quick decision regarding medical treatment. Recall that you thoughtfully weighed the treatment pros/cons so your guidance is much appreciated. Does SBRT not work with PSA over a particular number?
Thought our PC was similar GL6 (3+3) and was wondering how high your PSA was before deciding on SBRT? I just tested 5.5 (up 10% in 6 mths) and am continuing AS until next PSA, MRI and biopsy in September . Would like to anticipate next steps rather than be surprised and pushed into a quick decision regarding medical treatment. Recall that you thoughtfully weighed the treatment pros/cons so your guidance is much appreciated. Does SBRT not work with PSA over a particular number?
Hi Edward, Thanks for your note and I'm doing well. I did the CyberKnife procedure when my PSA was 5.6. I do believe that the procedure is best done when at an intermediate stage, but it's really best to ask your contact at CyberKnife directly as I would not want to misguide you.I chose the procedure to avoid fairly major surgery with what I considered considerably more potential to have adverse side effects such as impotence, incontinence and the like while not offering significantly different/better outcomes, and I believe the less invasive approach is best (although others believe that it's best to "take it out immediately!").
I'm happy with my decision, but everyone has to make their own choices and probably another MRI and biopsy will help to determine next steps if any.
Hi Alan,Thank you for your quick reply and good advice. My urologist/surgeon Dr Huang@NYU said my PC was not aggressive so I have not consulted with a Cyberknife doctor. Am I wasting precious time waiting for results of my next biopsy? Did you get 2nd opinion from Johns Hopkins on your biopsy? Which doctor performed your SBRT? Seems like you had the best outcome one might expect. Appreciate your time and guidance in answering my questions.
Hi, the main doctor at NYU Cyberknife was Seth Blackburg, but I believe he is now at Lenox Hill hospital and you could try him there. You can also make an appointment to visit the NYU Cyberknife team and their chief person will meet with you. They are not at all pushy and hopefully Dr. Blacksburg or the Cyberknife team can address your concerns.I also have used Dr. Aaron Katz as my urologist and his team is also very good, and Dr. Katz is very considerate.
I cannot speak to any of the therapies that you list. However, my PSA was over 10 before the biopsy and I opted for robotic surgery in 2017. About a year later my PSA started creeping up and I opted for external beam radiation -- 40 consecutive days (M-F) of treatment which I actually finished yesterday. This group was very helpful to me as well. Best of luck. - SPENCE
Good to see how much research you are doing and thoughtfully you are evaluating your options. You asked if anyone on here has been successfully treated with Proton Therapy and I am happy to share my story.
At age 66, in 2017 I changed my Primary Care Provider and bloodwork done at the time revealed my PSA was 13.59 By 8/30/17 it had risen to 14.42 prior to meeting with my urologist. He recommended a biopsy which was done on 10/4/17, 12 cores were taken: # 5, right apex, prostatic adenocarcinoma, Gleason Score 3+4+7 (10% Grade 4) (Grade Group 2), involving 12 mm (90%) of one out of one core. #10, right apex, Gleason Score 3+3=6 (Grade Group 1) involving 9 mm (40%) of one out of one core; #11, anterior, Gleason Score 4+3 =7 (60% Grade 4) (Grade Group 3) involving 18 mm (90%) and 1 mm (10%) of 2 of 2 cores. He understood my desire to check out non-surgical options and recommended an MRI of the pelvis and a full body bone scan, and that I take all of the results and meet with a Radiation Oncologist.
Full disclosure here at this point. For almost two years I had been volunteering in the Radiation/Oncology Department at the University of Pennsylvania Hospital with one of my dogs, a certified Pet Therapy pup. It was an environment I was already comfortable in, which made my choice easier to make.
My MRI indicated that the cancer was contained to my prostate, though it was quite enlarged. The bone scan showed some abnormality in the upper part of the spine, so I had an additional MRI of that area just to be sure that area was not part of the problem.
My Radiation Oncologist was Dr. Neha Vapiwala, one of the top doctors in the field I began Lupron Therapy in December 2017 in anticipation of scheduling Proton Therapy early in 2018. My treatment plan was 28 High Dose Proton treatments. The Lupron shots continued for six months after treatment. One side effect of the Lupron I was warned about on this site was the chance developing osteoporosis. They assured me that was a very infrequent side effect and I never experienced any symptoms.
My actual treatments began in late February, continued through March, and ended on April 4. Each day the treatment took about 1 hour from arrival to leaving. To help protect surrounding areas you drink 24 oz of water before getting on the table for the treatment. A balloon is inserted your rectum which is then filled with warm water, again to protect surrounding areas from the beam. Actual exposure time is about 3 minutes total. The balloon is deflated and you get off the table head for the restroom to pee, and then you change and head back home.
I felt great through the 28 treatments. I was able to do all of my normal day to day activities. I drove myself (except for two days when there was snow, when I used public transportation and walked). I went to three or four plays/concerts/operas most weeks, including two Saturday trips to NYC for Met Opera performances. I was feeling so good 2/3rds of the way through my treatments I decided it was time to think about adding a puppy to my household (my other two dogs were 11 and 12).
My PSA in July 2018 was .48. I had just had my final Lupron shot. Lupron’s side affects I experienced included hot flashes, which for me were never unbearable, but it was in the summer, so was it me or the weather?), tiredness, and weight gain. The only painful part of the treatment plan was the biopsy, and the subsequent and similar procedure when they placed the markers around the tumor to be able to consistently align the beam.
About a year post-treatment I noticed my energy level was back to normal. I then focused better diet decisions and more exercise. I was able to lose the weight I gained during treatment and an additional 30 lbs. At my most recent check in with my Medical Oncologist my PSA was .399.
I may wake up once during the night to pee. I have never had a problem with incontinence. Before treatment began I did have issues with urgency, but those stopped shortly after treatment ended.
I was worried about sexual function and had sort of resigned myself that I might have had the last of my pleasurable moments. I was pleasantly surprised that erections and orgasms were possible occasionally during treatment, and with increasing frequency post-treatment as the effect of Lupron stopped suppressing my testosterone levels. Orgasms were as intense and pleasurable as they had been pretreatment, but the amount of ejaculate produced was greatly reduced. Since I had read the stories of so many guys on here who had lost the ability to ejaculate entirely, I am counting my blessings. And gradually over the past two months it’s increased in volume to the point where once this pandemic is under control and I might start dating again, I will do so as a more confident man.
Wishing you the best for which ever approach you choose. I hope this wordy post helps paint a positive picture for one possible solution to your cancer. If I can answer any questions for you, please do not hesitate to contact me.
Fred, OMG, Thank you so much. This is exactly what I needed to hear. I've read about the treatments from the marketing brochures and the research papers but it is so helpful to hear it from someone who has gone through it and it so open and honest about the procedures and the positive and negative side effects.
It sounds like you found very sympathetic doctors. I’ve talked to mine and asked if we should do MRI and bone scans and he said let’s wait until my next appointment in October when we will check my PSA and I will have talked to other doctors about my treatment options. I’ve set up an appointment with the proton center in my area and with a radiation oncologist for primary consultations.
I think it is great that you were comfortable with the Radiation/Oncology Dept at U of Penn hospital. It also says a lot about you and your empathy and compassion that you do Pet Therapy.
I’m interested in your Lupron Therapy and will do more research on that prior to any Proton Therapy.
Again, it was so helpful to hear about the actual procedure and how you felt before during and after. That relieves a lot of pretreatment jitters.
The proton center is an easy 20 min drive from my home and that I should not have any issues driving myself is good to know.
During this Crazy COVID-19 quarantine times I can only watch NYC Met Opera on Demand, all my theater and opera season tickets for 2020 are for naught. I donated them all back instead of refunds. But it is good to know you felt good enough to go out.
It’s good to hear your energy level is back to normal. I try to focus on my diet and am exercising a lot more at home since my gym is still closed. Doing a lot of early morning walking, yoga and mindful meditation. I’m watching my diet these days, cutting out sugar, processed wheat, dairy, corn syrups, less meat, more fresh fruits and vegetables.
Thank you for talking about sexual function. Doctors talk about it but in a clinical detached way. I appreciate hearing “real” results during and after the treatment. I may be 66 but I still enjoy sex and it would be a major quality of life issue for me to lose that. That is why I am considering Proton Therapy.
I wish you the very best on your continued journey of healing and must repeat myself again, thank you for taking the time to share your story. It really helped. I may take you up on your offer if I have more questions after talking to the specialist. All the best, Gary
Sorry to hear about your diagnosis. Mine too was incidental, but I opted for the surgical approach wanting to know about whether there was microscopic nodal invasion, invasion outside the capsule etc. I'm mostly bottom, fortunately, as I did get post-treatment impotence, which hasn't recovered, and hasn't responded to Trimix. I also got radiation post surgery, because my grade was similar to yours.
It sounds as if you are really on top of things, which is good.
Thank you for your best wishes, I wish you all the best on your healing journey and am sorry to hear about your post treatment but you've seemed have a positive attitude. It is very helpful for me to hear other peoples stories and how they dealt with it. Thank you for sharing yours. Gary
I wanted to clarify something. Cyberknife is an actual product made by a company. SBRT can be done by a variety of radiation machines, some of which may be better or at least different from Cyberknife. For example, I had SBRT using the MRIdian MRL machine. This machine has some of the latest technology. What makes it distinct is that radiation exposure is reduced to the organs at risk by using a continuous MRI that doesn't allow radiation to "turn on" if things are out of alignment. MRI's can see soft tissue better, which means you do not need to have metal fiducials planted on the prostate. Because my bladder kept filling, this worked out well for me.
Below is an interesting diagram I dug up at some point showing different radiation machines and how the radiation exposure typically might occur. Two things to look at and consider: One is how much radiation goes outside the prostate to organs at risk. The other thing to consider is how much radiation is focused on the tumor. My Bro just had SBRT using TrueBeam, which is used a lot. I had my SBRT with the MRIdian MR Linac. As Tall Alan noted proton therapy is problematic, maybe because the proton therapy centers are having a hard time making ends meet so they proselytize.
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