Apex, Incontinence, & Proton

Overwhelmed, scared, & confused. 58 - diagnosed 1/9/12. Have read extensively on prostate cancer ever since (Johns Hopkins, Walsh, Scardino, McHugh, Prostate Snatchers, Prostate Underground et al ad nauseam plus tons of stuff on the web). First biopsy – 11/12 clean, 12^th PIN. Second biopsy – 11/13 clean, 2 cancer with 40% & 70% involvement. Gleason 6 (3 + 3). Latest PSA – 6.2. DRE not palpable. Got pathology report and flipped out over location of 2 cancerous cores – the apex. From what I understand it’s a tricky, risky location. Very close to last line of defense between continence & diapers – the external sphincter. It’s also my understanding that the apex 1) has a less definitive capsule boundary which can make local containment of the cancer more problematic & 2) is a common sight of positive margins

70% of a 2 cm core is 1.4 cm. That’s a pretty big chunk in my book. And this is the best case if the needle core hit the central (or middle/widest) part of the tumor. If it just grazed or clipped off a corner, the tumor could be substantially bigger. Have been to a surgeon and a radiologist. Very wary of the knife because of the issues above and incontinence fears. I am a teacher and have 2.5 - 3 hour stretches where I cannot take a restroom break. In addition, the facilities in my pre-Depression era school are primitive at best. I teach in a rough inner city secondary school and fear becoming a laughing stock of the students because of leakage and odor issues. Impotence I can handle. Incontinence scares me to the point of near complete mental & emotional paralysis. Talked to family doctor and he heard me and my concerns out and then took very little time in recommending radiation.

Have scheduled an initial consult at proton beam facility. One web page (protonbob.com) has 100+ positive testimonials. Anyone out there with negative experiences with proton (or additional positive experiences for that matter)? Any problems getting “qualified/accepted” as a patient? Any problems obtaining what has to be a relative small number of treatment slots? Also, were there problems with getting insurance carriers to pay for it?

Thanks. 

wb2ud

Welcome to the group, wb2ud (and a rather dubious welcome as no one really wants to be here).

I had Proton Beam Therapy (PBT) almost exactly two years ago at UFPTI in Jacksonville. It would be very easy for me to be bitter about PBT, as my PBT failed. (I had more advanced staging than you - check my signature image). I also feel that my PCa probably escaped prior to treatment and virtually any primary treatment would have failed (that's debatable, but I want to look forward, not backward).

So... here are my experiences with side effects. During the last stages of treatment until about 1 month afterwords, I had urinary urgency, flow problems & burning. When talking with my "buddies" & online forums, that is a very common complaint. Today, I pee like a teenager.

There are also a very few complaints of fatigue during and shortly after treatment.  Seems to resolve rather quickly.  I did not experience this.

In the forums I frequent, the primary long-term complaint is rectal bleeding.  Of those folks who experience this have it as a temporary problem about 18 months treatment (radiation proctitis). A small fraction need various degrees of treatment including steroid suppositories, formalin treatment or argon laser treatment. There is currently a debate regarding whether this side effect is greater or less than IMRT. see:  Proton Therapy For Prostate Cancer Comes With Side Effects: Study  What about me? I've had a few small blood streaks in my stools, but I can't say whether they are radiation proctitis or bleeding hemorrhoids (I have a history).

There are a very few complaints of ED, but many of these folks had ED prior to treatment.

I don't think I've heard a single PBT patient complain about incontinence.

Now, all these are anecdotal reports. One of the criticisms of PBT is that a scientific, peer reviewed study has not been done to prove out these results.

Treatments are a "breeze" - into the gantry, zapped with protons, and out. May folks wince at the requirement for a rectal balloon, but one gets used to this rather quickly.

There are other other downsides:

1) PBT is very expensive comparied to other treatments
2) You may have a fight with you insurance to get coverage,
3) It normally involves 6-8 weeks treatment at a distant location as there are only 8 (I think that's the current number) Proton facilities across the U.S.

Hopefully that is an objective response to your question,
...Jerry

Your analysis of the complications of having a Apex tumor are all correct. The choice of external radiation for this type of tumor rather than surgery will also give the best chance of cure and much less chance of permanent incontinence.
Your choice of Proton over conventional IMRT or IGRT will do nothing to increase your cure chances or chances of side effects as is confirmed by the many studies. To increase your probability of no side effects and cure, you would be much better off spending your time to find the best radiologist that has at least 500 procedures in prostate cancer and is well respected by his peers. An exceptional radiologist using conventional IMRT or IGRT has the best probability of achieving the results you are looking for.
JohnT

Seeds combined with beam radiation have proven very effective, delivering a very high cure rate while minimizing side-effects..Today's equipment is far more advanced than just a few years ago..

I think these decisions are very difficult and far more nerve racking than the actual treatment. I think Proton treatment is largely confined to USA so not an option for me in Asia. I eventually settled for TomoTherapy which is a form of IMRT. It is quite widely available in USA. Like you I really feared the knife and the urologist, I could see in his eyes, was not so keen either - he was the surgeon, whereas the radiologist at least believed he might have a chance to eliminate the thing all together.

Like you too have to stand and deliver for 2-3 hours. One side effect I have is sudden onset diarrhoea but whereas I have suddenly had to depart a conversation with colleagues so far have not ha to abandon a larger audience. You can get medication to stop this problem

I wish you well, take it slowly with such a decision and do not worry once you have made it.

Boris