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Posted 8/27/2015 6:20 PM (GMT 0)
I just had my 6 month checkup at UFPTI. My PSA has fallen from 11.2 to 2.5 and I have minor urinary burning for which I’m taking 500mg cranberry extract daily. My next PSA and follow-up there is in January 2016, after which I am expected to be seen there annually unless I have a problem. I am thankful for the excellent treatment I received at UFPTI, but I do want to find a doctor who is much closer to home to see periodically, and one with whom I have a much better rapport. I might as well be in the room with an android as with my RO. He’s extremely smart, learned, and experienced in radiation treatment for prostate cancer, yet he’s terribly lacking in bedside manner. I don’t think he sees me as a person, but more as a medical problem to be solved and managed. This patient-doctor relationship is tolerable as long as I’m well, but if I should regress I will have to find another doctor. I’d like to find one now while I’m well and can build a relationship.
Which brings me to my question: since I had proton radiation, should I be looking for a radiation oncologist experienced in treating prostate cancer? Does it matter that he/she might not have any experience with proton radiation? I am reasonably close to Duke Medical Center and to Wake Forrest Medical Center.
Posted 8/27/2015 7:33 PM (GMT 0)
Cranberry extract? Did your doctor tell you to take that? Cranberry has a stimulative effect on the kidneys. For most of us after radiation, we experience frequency and urgency - acidic fruit juices only compound that problem. My RO told me to avoid them, and caffeine, until it resolves. Pyridium, available OTC, does a great job of relieving burning - watch out for staining, though.

Other than keep an eye on your PSA and any radiation-induced SEs, there's little an RO will do for you now that an ordinary urologist can't do. If you should have a flare of symptoms, he is the best judge of effective measures that may be needed. My RO mails me QOL questionnaires to fill out periodically and reminds me when it's time for my next PSA, but I never visit him anymore.

- Allen
Posted 8/27/2015 8:03 PM (GMT 0)
It is routinely recommended when treatment begins at UFPTI that patients drink cranberry juice daily or take the pills. I switched to the pills after a couple of weeks but it did not relieve symptoms. I exercised a lot during treatment and occasionally had knee or joint pain and took diclofenac. I noticed that it helped a lot with the burning and mentioned to my RO. He said he had never heard of anyone using it but if it helped I could take it daily during treatment. My pain went away after I finished treatment and only retuned a few weeks ago and is minor, so I started the cranberry to see if it might help. I told the nurse when she interviewed me prior to seeing the doctor. He did not mention it.

I have great relationship with my urologist, and am very comfortable with seeing him for routine matters such as the annual DRE and some of the typical minor SE's following radiation. The bigger concern is will he recognize the typical pattern in PSA progression during the next 1-3 years? As a surgeon, his experience is probably quite different than a RO regarding the PSA progression. I wouldn't want to be looking for a RO after I have developed a serious problem. I want the patient-doctor relationship to already exist.
Posted 8/27/2015 8:51 PM (GMT 0)
It's not like you're "firing" your RO - he'll still be there if you need him. It's more like being in a relationship and agreeing to see other people as well.
Posted 8/27/2015 9:46 PM (GMT 0)
But I do want to end the relationship. We're not compatible. I'm wondering if I need to replace him with another local RO or maybe a MO.
Posted 8/27/2015 10:32 PM (GMT 0)
I would just return to your local urologist for now. Once I finished my proton therapy at IU Health, I never went back for a consult (I did talk to my RO a couple of times on the telephone, but never felt the need to return to Bloomington for a face to face visit). Unless something indicates a need for a MO, I would just rely on my local family physician (in my case he did a great job) and/or your local urologist. I got my regular PSA checks through my family physician (who sent the info to IU) and I also consulted with my urologist ( who was a skeptic about my proton treatment but grudgingly admitted that it was a success ). If I do have a problem in the future, I will probably return to IU, as the care I received from them was the best I have ever had from any medical facility.
Posted 8/27/2015 10:48 PM (GMT 0)
hrpufnstuf,

There are three docs at the Duke Cancer Center that I can recommend. I've had consults with all three; Harrison, Lee and Polascik.

Harrison is an medical oncologist, Lee is a RO and Polascik is a surgeon.

I am dealing with recurrent PCa following failed Proton Therapy done in 2011. I have chosen to pursue the cryotherapy route with Polascik.

Knowing what I do now, I would recommend you choose a good urologist or MO versus a RO.

Tony
Posted 8/27/2015 11:32 PM (GMT 0)
When I finished my RT, my RO basically discharged me back to my URO for monitoring. You URO should know enough about RT to monitor PSA and know when you need to see a RO again. Likely, you'll never need to. If you still wanted to see someone other than the URO, I'd say find a good MO who does PC for the occasional consult.

Andrew
Posted 8/27/2015 11:50 PM (GMT 0)
Tony, you are the first person I have come across that proton therapy was not successful. You mentioned "postop" PSA in your signature, but it looks like proton was your primary treatment, not surgery. I assume since you're from Va Beach that you went to Hampton for your treatment. I'm surprised that your RO didn't recommend 6 months HT before and during your treatment with a 4+3 Gleason.

Polascik was the urologist who performed my fusion biopsy after my mp MRI showed a likely spread to a seminal vesicle. Gupta was the Duke radiologist. I found Polascik to be worse than my RO in terms of bedside manner, not to mention that the wait time in his office was 3-4 hours past my appoint time the 2 times I saw him. When I went to him following my MRI I was pretty scared about the possibility of have SVI. My first visit was a consultation and I had a few questions for him. When he came into the office, he asked why I was there. I told him it was a consultation visit required by his staff before a biopsy and I had a few questions. He look angry and said it's patients like you with questions that caused me to be 4 hours behind schedule today. We all have cancer, I said. What do you expect? I would never have returned except I needed the fusion biopsy and I had come too far at that point to start over. He's the only urologist at Duke who does the fusion.
Posted 8/28/2015 1:13 AM (GMT 0)
hrpufnstuf,

You are correct, I did have the PT at Hampton. I did not have surgery. Neither the RO at Hampton nor my local urologist mentioned HT before or after the PT. It wasn't until after the recurrence that I had a 6-month HT shot.

I can see how Polascik might come across that way. He's not a bubbly personality. But, he has a history of successfully treating recurrent PCa with cryotherapy and that's why I chose him.

And, yes, I agree he is usually a couple of hours behind on office visits. It's annoying, but, I can put up with that to get cured of this recurrence.

There are more like me with recurrent PCa following failed PT; I've met several more on this site and others. Proton Bob and others would have you believe PT is 100%, it isn't. However, if I had it to do over again, I would choose PT. I just happened to be one of unlucky ones where it was not successful.

I wish you the best,

Tony
Posted 8/28/2015 12:18 PM (GMT 0)
Tony, Polascik's credentials are excellent. It would be ideal to find someone with his skills and experience who's also more personable but when push comes to shove, I'll take Polascik with his skills over someone less skilled but nicer.

And yes I know not all PT is successful. Nothing is a lock, especially with this disease. I see on HW too many times where after several years of remission, the cancer returns, regardless of the primary treatment.

Best of luck to you with your cryotherapy. I hope you keep us informed of your progress.
Posted 8/28/2015 1:23 PM (GMT 0)
I have an excellent rad-onc and I see him once a year. It was quarterly for the year following the IMRT and HD Brachy. In our most recent visit he said next year will likely be the last as I will have crossed the five year mark. His practice keeps track of patients to build their database of treatment results metrics. We both agree that I haven't really needed the last couple of visits and they have been optional on my part.

For you HR, I agree that your uro should suffice at the present. I do like your point that it is good to have a relationship with a rad-onc in case the services are needed in the future. The Catch 22 may be that the rad-onc you find a relationship with may not be what you end up needing. As to whether the next rad-onc should be Proton experienced, I would suggest that it is very unlikely that you will have need salvage radiation to the Prostate area. Radiation in the future would be more oriented to finding a specific lesion somewhere else like a lymph node or bone. Thus I would be looking for a rad-onc that demonstrates strong experience and results treating metastatic PCa.
Posted 8/28/2015 2:59 PM (GMT 0)
Tony, you mentioned that you met with Lee at Duke. I found him on a Google search before you responded to my post and read his bio. What did you think of him? I assume his go to for surgery, radiation, MRI, etc would all be part of the Duke prostate cancer treatment team, rather than the best specialist no matter where.
Posted 8/28/2015 7:18 PM (GMT 0)
I liked Lee. We discussed brachytherapy for treating the recurrence. He did not think that was the way to go. He was concerned with the side effects of treating a radiation resistant lesion with more radiation.

I asked him what he would do were he in my position, he said he'd have the prostate removed. As you are probably aware, radiation changes the composition of the prostate making Salvage RP's very tricky. In fact, Duke no longer does salvage RP's. He referred me to Dr. Eastham at MSKCC.

So, to answer your question, I was impressed with Lee. He took a fair amount of time to answer questions and discuss my case, he didn't push radiation and he referred me to a non-Duke doc.

Were I going the radiation route, I would be comfortable working with him.

Tony
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