Just Diagnosed and Starting My Research

Hi Everyone,

I did not expect to be here, but unexpected news hits pretty hard at first so here I am. This place is a wealth of good advice and have been reading and researching several hrs/day since being diagnosed 11/30 w/ pCa. Looks like we caught it early enough for a cure hopefully, G-7 Intermediate Risk.

Had my initial visit w/ my URO last week and even through he was very positive that I was a good candidate for surgery, I am looking to explore other options. Right now I just feel better about radiation therapy and not having to worry about if they got it all during surgery.

I have a consult setup at the proton therapy center here in Knoxville TN on 1/10/17, but not being 65 yrs and on Medicare, it may well be that my insurance will not cover it. After that consult, I have a consult set up with Vanderbilt Medical Ctr RO on 1/12/17. I don't know if they do HDR BT as mono-therapy or only in combo with IMRT, but HDR Brachy looks to me a very good next candidate if Proton Therapy is denied as not medically necessary.

Does anybody have experience with Vanderbilt in regard to HDRBT as a mono therapy? I like the results that UCLA gets using 6 fractions of HDRBT over 2 visits one week apart, very incouraging. An option would be to do the HDRBT boost at Vandy and get external beam reduced fractions near me at University of Tennessee (UT) Medical in downtown Knoxville. UT may do HDR as well, but my first inclination would be to go to Vanderbilt since it is also relatively close and does much higher volume.

Look forward to hearing anything more specific in what to expect at Vanderbilt if anyone has first hand experience.

Thanks

Hi, Sponge, and welcome to the club that none of us volunteered to join.

It seems that you have one of those "favorable intermediate risk" PCa diagnoses. Yes, you have G7 cancer, but with more G3 than G4, it should behave more like the low-risk G6 than like high-risk G8. With favorable intermediate risk, you have numerous choices for treatment.

I do not have any experience with the facilities you mention, but I do want to make a couple of comments.

First, I applaud your intent to learn about your various options before choosing a treatment path. I feel that too many men just don't want to have to worry about it and make their choices without fully understanding what they are asking for. By doing your due diligence, you will equip yourself with the understanding of not only the success rates of the various treatments but also of their side effects. My own opinion is that for us favorable intermediate risk guys, the majority of our decision should be based upon the side effects of the chosen treatment. They are different, and only you can determine which of them is best for you.

After that, I guess I would ask "Why proton therapy?" The research shows that proton therapy doesn't have any greater efficacy than photon therapy (conventional radiation), but has far greater cost and spotty insurance coverage. If you are committed to radiation, it makes just as much sense (maybe more?) to consider all of the radiation options and then see where the benefit lies for you.

If you are considering high-dose brachytherapy, I would also suggest that you look at SBRT (another version of external beam radiation). SBRT's dosimetry (pattern and intensity) is patterned after that of HDBRT, but it is an external therapy given in 5 fractions over a one or two week period. It has been shown to have very similar results to HDBRT, but is non-invasive (other than marker placement, which is minimal).

I don't want to write a book right now, as it is still early for you. Think a while, ask questions and read the posts on here. Others will, I'm sure, be along to help more than I can.

BTW - I had CyberKnife SBRT about a year ago, so if you want to know about that treatment, just ask.

Sponge,

Welcome. Sorry you got this news but you've discovered the right place. Many folks on here with some excellent research and expertise. You will get many different viewpoints but the choice is ultimately yours what you are most comfortable with.

My diagnosis was just about exactly what yours is. Luckily this allows you to take a "little bit" more time researching options than higher risk levels. You should be able to make a very well informed decision. Personally, after doing some homework here and consulting the very best docs of each treatment option, I chose SBRT. I decided to fly from Mid-Michigan all the way out to UCLA to get the treatment I desired, by the physician I desired. No matter what comes of it, I am 100 percent satisfied with the decision I made. (I'm only 3 months post treatment). I hope you will come to the same comfort level with the decision that you make.

Frosty

I have BCBS up in Michigan and because of that, California BCBS covered everything for my SBRT. Dr Kings office took care of all the legwork on that. Took them a very short amount of time to give me an answer that they will cover it. I'm pretty sure I didn't even have to call anyone.

(Edit: Not sure if it makes a difference but my BCBS is also through the federal employee program)

Frosty

Thanks Frosty, will do. Mine is through the federal employee program also so that is very good to know. My insurance (Fed BCBS Basic) agent here in TN said to check as well with each fedblue contact for the state that will be doing the treatment for certification approval. I am glad it came through for you. I may be following in your footsteps.

Were you able to do your labs locally before heading to California or did Dr. King do everything once you got out there? How many trips and consecutive days did it take until you finished your treatment there?

Remember that each of the 1327 men in that 5-year proton study had an anecdote to tell, whether you heard it or not. Unfortunately, being human, we overvalue anecdotes from people we talk to personally and undervalue the "dry" statistics. Anecdotes improve qualitative understanding, but go to reliable (peer-reviewed, high-status journals) statistics for the quantitative understanding.

I did my PSA and Biopsy at University of Michigan. The urologist (surgeon) there really tried to pressure me towards surgery going as far as saying "at your age you need a 50 year fix, not a 10 year fix". I also had consults with one of the HDR-BT pioneers Dr. Martinez who was local for me. I was really close to going this route and would have been comfortable with him if I were to choose that treatment. I also consulted an SBRT Dr Spratt at UMichigan. He was young but extremely intelligent as far as my regular ass can read someone else's intelligence. But there were a few issues with UM hospital (that had nothing to do with Dr. Spratt) that led me to reach out to one more doc. One call to Dr. King at UCLA is all it took for me. Everything went extremely smooth and quickly from there. Communication and concerns were very clear and they took care of everything to get me set up. All I had to do was make travel arrangements. I could have done the fiducial markers locally in Michigan to save a couple days out there but I figured I would use the docs that he uses regularly and make a mini vacation out of it. You can do it on a 10 day plan. I chose to spread out treatments one more day. (HW poster "PAX" from Hawaii did the same plan).

I flew in September 10th. Rented little gas saver and stayed at "Tiverton House" right across from UCLA where we get the "UCLA rate" the entire time.

Sept 11th, three fiducial gold markers were inserted at UCLA by Dr Z. The only thing that kinda sucked for max 3-5 minutes. I'm over it. Drove to Dr King for talk.

Couple days off for markers to settle/recovery. Explored some sights and scenery.

Sept 14th, treatment 1. Maybe a 15 minute drive to Dr Kings facility in Santa Monica. I was in building like 30 minutes. Went to beach afterward.

Sept 15th, treatment 2. Was only in the building literally 15 minutes. Amazed!

Weekend off. More beach time and California eats.

Sept 18, treatment 3. Same same.

Sept 20, treatment 4. No issues

Sept 21, treatment 5. Done. Flew home that night.

If you end up going this route, there are some resources that may help financially with the travel if necessary. I just sucked it up and bit the travel cost bullet to make it happen right away. There are a lot more tips that others here helped me out with as far as local parking secrets, dining, prep, etc.

As far as side effects. There was some very mild pressure and or irritation. Couldn't even fully tell exactly that something happened down there. Completely went away within a few days. Only lasting SE thus far is reduced ejaculate and I'm back to maybe 3/4 volume now.

Tall Allen said...
Sponge60-
I strongly recommend you get a second opinion on your biopsy slides from Epstein's lab at Johns Hopkins. That is something you want to be very sure about, and Epstein is the gold standard..

+1000

There's a lot of 3/4's there. Sending those slides to JH is non-negotiable. It's gotta be done to know exactly what you're dealing with. A change could change your treatment choice. It's $250 cash to have the best in the country read them. Your uro's office will send them.

I live and, had my surgery done, in Knoxville as well. They come from as far away as Rutledge, Hazard, KY and Newport to have this surgery done here. So....you'll be in good hands

You would be shocked, SHOCKED.. (as Capt. Renault in Casablanca would say) at who's gone out of town to have treatment for this. There's no discussing specific doctors or hospitals on this site.....as far as the level of expertise.

oh...proton on Middlebrook can get 'er done.....payment wise. They got mine approved.....on the third try. They've learned how to handle insurance and medicare.

Sponge, welcome to our club. From what I understand, Proton is more hype and justification for spending millions on cyclotrons (and then paying for it) than actual therapeutic benefit. If you're inclined by the bells and whistles, I say go for it.

We've heard good things in here about Vanderbilt, by the way. If you were going for surgery, Dr Smith down there is one of the very best. Their RO team has a great reputation as well. (If you google 'Top 10 prostate cancer centers', Vanderbilt pops up on the list)

Good luck with your research, you're heading down a solid path of making the Right decision for you. And that is the only one that matters. YOU have to be at peace with the path you choose, and we are committed to supporting you in that

You have several good options, equally effective for a cure, but with different side effects, and treatment logistics and recovery.
Since you live near the Knoxville proton center, and you have several personal testimonies, it’s probably a good idea to have the consultation to hear what they have to say. You have nothing to lose talking with them.
As you can see from my signature, I had proton treatment at UFPTI 3 years ago. I evaluated many of the same options you’re considering except SBRT. It was not as popular as is it today or I would have certainly looked into it.
I receive calls regularly from men who have an interest in proton therapy at UFPTI. I tell them about the excellent care I received there and how my side effects have been minimal. My comments to them are probably similar to what your friends say about their experience at The Knoxville center. A few of the men here at HW have contempt for proton therapy that I really don't understand. It may not be a treatment that appeals to many but for a few of us it was our choice. Yes it is more expensive than other treatments. Yes it takes 6-8 weeks and may involve expensive travel. No, it's probably not any more or less effective than IMRT. But it's not pseudoscience. Most of us would do it again I think. Why disparage it like that? There are thousands of men out there who would disagree with them.

hrpufnstuf,

Bragg's peak is certainly not pseudoscience, but it is also not all there is to say about proton toxicity in biological systems. It sounds great on paper, but theoretical advantages do not always result in clinical advantages. As you can see in the reference I provided of the longest follow-up study in the US of modern proton equipment, the patient toxicity is low, but no better than those reported in single-institution studies of photon-based treatments.

The basis on which I and others "disparage it" is not efficacy or toxicity - it measures up well on those. The problems are cost and putting the patient through so many treatments when there is no incremental value provided. It is possible that the newer compact proton machines may be able to bring down the cost someday. Early clinical trials of hypofractionated proton therapy look good and there are many more ongoing trials. That will bring down the cost and the number of treatments. However, a similar development has occurred with hypofractionated photon therapy, so it will be difficult to stay competitive.

If the US wanted to engage in a national project, I think a carbon ion therapy center would be a great idea. A few countries have built them (Japan, Germany, Italy and China). They require a huge investment, and will never be cost-effective.

/pcnrv.blogspot.com/2016/08/carbon-ion-radiation-therapy-for.html