Newly Diagnosed Husband - Proton Therapy Possible

Hello BaMAc and husband, welcome to our cozy little club. No, I didn't want to be here either, but that's the way it rolls. It was only back in April when I was where you are now, it is very disorienting and not a little scary, but it seems like you are handling it well by trying to become as informed as you can in such a short time. So here's the good news. First, he is not a candidate for AS - that is good, as it means that prostate cancer aside, your docs think he has at least another 10-15 years before his warranty expires. Second, with the numbers you provide, he has an excellent chance of cure with any of the treatment options you list (and there are a few more as well). Third, and most important, PCa develops slowly, so there is no need to rush to a decision - take your time, gather more information, and try to figure out what is the best treatment plan for you. Every cancer is different, and every man is different, but the folks here are great at helping you work through your journey.

Here are some starter tips.
1) Get a second opinion on your biopsy slides. Dr. Epstein at Johns Hopkins is the go-to guy for this, I am sure someone will post the contact info.
2) Get whatever diagnostic scans done (CT, MRI, bone, PET) that you can get your doctors and insurance to sign off on. It is important to see if the cancer is probably contained in the prostate, or if it possibly has spread beyond. This will affect your choice of treatment.
3) Look into Brachytherapy as well. Depending on your details it is possible that High Dose Rate Brachytherapy could be used as a monotherapy. That has worked well for some.

I myself just finished Proton Therapy a few weeks ago. I had only a few minor side effects that have abated now, and I feel great.

Take care, and ask questions!

Post Edited (Vynbal) : 9/20/2021 7:09:24 PM (GMT-6)

Thank you Michael and Vynbal. We are calmer tonight. We plan to take a short break from doctor visits, get our booster shots, and continue reading. I did contact the Proton Therapy Center to ask them to send us the preliminary information on our options since there is no direct referral from our urologist to the Proton center.

Welcome BaMAc and glad you found us but sorry you’re here. The good news is we have many treatment options for PCa when caught early. It’s unlikely you’re a good candidate for active surveillance but a number of treatments options should lead to a cure for your husband. This is a great place to become informed and learn what option is best for your husband and you. My wife is an RN and was able to help me with some of the technical stuff. She’s also a good listener and judge of people. Together we made a good team. I thank you for being involved in this important decision. Far too many people hear they have cancer from their urologist and immediately decide to have it removed. Although surgery can be a great choice for some guys it may not be the best choice for all.

It can be challenging wading through all the radiation options; however, it’s worth doing if you want to make an informed decision. The best choice is an informed one.

Every treatment options come with side effects. It’s important to choose a treatment with side effects you can live with. Urologists are surgeons and the treatment they know best is surgery. Prostate removal is major surgery no matter robotic or open. Since I had good urinary and sexual function prior to diagnosis I didn’t want to risk either with surgery. With two active grandchildren I ruled out permanent seeds. Nine weeks of five days per week of IMRT seemed just too invasive.

My choice boiled down to high dose brachytherapy (HDBT) or SBRT. Proton was interesting but at the time of my treatment out of pocket and a short track record. I explored the SBRT option and once we met with the team at Cleveland Clinic it became an easy choice. SBRT is precise high dose radiation given in five treatments. It has arguably the highest success rate of the radiation treatments. My urinary, sexual and bowel function are the same now as prior to treatment. My wife considers the loss of ejaculate a bonus. The only negative was we had to travel a couple hours drive away since this treatment was not available locally. I believe our good results are the norm and not an exception.

No matter what choice of treatment your husband and you make I hope it’s an informed choice and the best for your situation. No matter the choice I encourage you to seek out the best practitioner and team you can find. Good luck and keep posting and learning.

BaMAc, I would like to expand a little on Terry's comments. SBRT is really just one style of external beam radiation where the use of ultra-precise aiming techniques allow the use of very high doses of radiation over the course of very few treatments (5). While this usually refers to using X-rays (photons), it can also be done with Protons, as was offered to you. But just like you were also offered low-dose photons over 9 weeks, Proton therapy is also offered over a longer period.

While my biopsy numbers were very similar to your husbands (3+3s and 3+4s) I was not a candidate for SBRT. My biopsy and MRI indicated that the position of my tumor was very close to the edge of the prostate (Extra-Capsular Extension - ECE) and there was a significant chance the cancer had already escaped. Part of the precise aiming of SBRT is that only the prostate, and none of the surrounding areas are treated. Hence my earlier comment about the need to get those diagnostic scans done.

If you want to write to me further about my experience with Proton therapy, my e-mail is in my profile.

BaMAc - I don’t think anyone here is against proton beam treatment. Proton beam has had a problem with insurers as it has been much more expensive than other modern prostate radiation treatments without providing the better results or some other measurable to offset the higher cost. Mayo Clinic is one of the few that decided to lower its proton pricing to match the other radiation treatment costs to reduce insurance pushback even though the facility cost is many times that of standard radiation methods and must be a loss for them.

If it works out for your husband, it is a good option. The more important part is doing the 5-day treatment scheme with proton or SBRT where he can be done in two weeks. Normal radiation takes a couple of months which is not difficult (I could be in and out in 15-20 minutes sometimes) but you block out a lot of time with just weekends off.

Just keep studying and visiting doctors until it all gels in your mind.

Some reading for what it's worth:

https://www.cms.gov/medicare-coverage-database/view/lcd.aspx?lcdid=36658&docid=l36658

Never as simple as one would like, Medicare and Medicare Advantage plans are supposed to cover the same things but that is not so clear for the grey area items so be aware of this also. One would think a 5 session treatment scheme would be approved without thinking but this is medical insurance stuff...

Thanks Mumbo for the insurance information.

Hello BaMAc and welcome. Sorry you have to be here but we will help you guys get through this. Re AS, unless hubby has a bunch of comorbidities and a limited life span that's not something I would do with 8 positive cores. I would however definitely suggest that you get a second opinion on the biopsy slides from Dr. Epstein so that you have a real expert opinion on his pathology.

The good news with hubby's diagnosis is that you have a bunch of options for cure. It's not surprising that your urologist suggested surgery... that's what they do. But be smart and investigate all of your options so that you get comfortable with your choice. IMHO, surgery would probably be the last choice. And, actually I would put the multi-session IMRT and PBT pretty low on the list as well. They will most likely cure him but are probably overkill.

As mentioned by others, radiation is a specialty. You guys would be well served to visit docs who specialize in SBRT, LDR Brachy and HDR Brachy. You husband would seem to be a poster child for success in any of those three options which are a lot less trouble than the three your urologist has recommended and are likely to provide equal cure and perhaps fewer side effects.

Good luck and please ask any and all questions you may have.

Jim

Thank you both, Jim and Michael.

Jim, I appreciate your input on other options. Can you give me just a quick summary of why you think SBRT and the two types of brachy might be better options? Or give me links that would help. Thanks

Our urologist has faxed over my husband's records to the Proton Center for evaluation. We plan to continue our research and get other opinions, but we started with Proton since the center is very near us. We had planned an MRI later this week but the Proton Center said to hold off because they might recommend additional or different imagining, and we might be able to do it all at one time. Since it seems this is all that we do now, it was nice to get a break for a while. We should hear back from the Proton Center this week.

BaMAc said...
Can you give me just a quick summary of why you think SBRT and the two types of brachy might be better options?

It's really pretty simple in my little mind for your husband's case: Compared to surgery - SBRT, LDR Brachy and HDR Brachy provide equal cure rates but are less invasive and with a likelihood of less onerous side effects. Compared to IMRT or PBT - SBRT, LDR Brachy and HDR Brachy provide equal cure rates, similar side effects but with a much easier and simpler treatment regime.

Jim

Jim, thank you for your summary. Brachy did not even come up in our discussion with the urologist, although I have read about it. I will ask the urologist about that. We do have small children around us often, and three cats, to be concerned about, at least with respect to some forms of brachy, as I understand it. The form of proton therapy being considered is the pencil beam therapy which is usually just five sessions, so not as many sessions as IMRT (which we have pretty much ruled out for the time being)

It's unlikely that uro would being up brachytherapy--it's a specific type of radiation and you'd likely need to go to a radiation oncologist that specifically practices brachytherapy. One of our most knowledgable posters (high risk diagnosis, but very successful outcome) had brachytherapy in the Atlanta area--hopefully he'll see and respond to your post.

Regarding your other options, I agree that the 40 sessions of IMRT probably don't make sense. SBRT (5 sessions) or the Proton treatment that you're contemplating would certainly be more practical. I don't know much about Proton, it's not that common compared to some treatments, but I would presume that cure rates are similar. (Just make sure your insurance covers Proton, which I believe is more expensive.)