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Prostate condition after Proton/Photon/Brachytherapy?

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Posted 8/6/2012 3:29 PM (GMT 0)
I had pretty much the same SE as Overthepond. You can read what I went through by clicking on the link in my signature. As far as SE, I'm prety much the same as before all this started.
Posted 8/6/2012 3:51 PM (GMT 0)
BB1100,

My stats were fairly close to yours with my PSA going from 4.28 to 6.8 in less than a year so I decided to not go down the AS route and address the PC. I had Pencil Beam Proton Therapy at MDAnderson Cancer Center in Houston. The Pencil Beam facility at MDA has even more precision than the other forms of Proton Therapy (scattered beam) that are available at the other proton centers in the US and I guess, is even more more "overkill" since they do all treat additional margins (5-10mm) around the prostate and seminal vesicles. Why do they do it? Two reasons most likely: One, from what I've learned, there is really no way to tell if there are smaller micro scale clusters of cancer that are "waiting to bloom" and treating the entire area gives better outcomes for a larger population. Which brings up #2: The Proton facilities are very, very expensive and take a very long time to build and validate - the owners (investors) of these facilities do not want to do focal applications because they need their "cure" rates to be as high as possible to continue to get insurance companies to cover the procedure. When I went through it earlier this spring, I was pressured a bit to also start hormone therapy prior to the protons, which I believe was another way to hedge their bets and increase "cure" rates. Since I did not have and enlarged prostate, my PSA was fairly low and the tumor was located only in one area, there was not any real benefit for me to add HT to the PT (as validated through any clinical trial that they could cite to me - and I researched all the trials that I could find).

As far as side effects for me, I really had none, outside of some fatigue and a brief period of very minor urgency. I have had no ED issues, other than the fact that I started having "dry" orgasms about 2/3rds of the way through the treatments (8 weeks). I assumed that this would continue (dry), but now 8 weeks out some ejack has returned (10-20%?), which makes me believe that my prostate/sem vess are starting to produce a bit again? Anyway, I met a lot of fellow PC patients down there during my treatments and I did not run across anyone who had any issues with rectal bleeding or heard anything about bloody balloons. I did meet one gentleman who had returned for his 6 month follow up and was telling other patients that the docs were "full of it" when they say that most men retain normal sexual function as he had not had any since that start of his therapy. Of course, he was also still on Lupron, was about 70+ and did not say if he had issues prior to treatment.

I do not get my first post treatment PSA for another 4 weeks and I won't really know how well it worked for me until I get my 6 mo test, but at this point I am very, very happy that I went to MD Anderson and I would recommend that newly dxed patients at least research PT prior to making any treatment decisions.

Tom
Waiting but no longer worrying. :-)
Posted 8/6/2012 4:35 PM (GMT 0)
Ziggy,

I knew Dr. Crawford was well known and a national authority on prostate cancer as he had also been interviewed in a book I had read. However, I wasn't aware of all the affiliations he has and his intense focus on prostate cancer. The research and focus aspect also applies to Dr. Al Barqawi. Glad to know you were in such capable hands.

The next time you have a follow-up, could you check what the margin was around your tumor that they treated or if they treated the affected (entire) lobe? Wonder how they control the margins as the vprobe they use can create a variable size ice-ball, freeze tissue down to various temperatures and also need to consider time as the longer they freeze, the more surrounding tissue is frozen. And this procedure is done twice with warming in-between. Without the warming probe for the urethrae, the patient would have some not-so-fun issues to deal with afterwards.

From what I understand, even though my tumor is only a bit larger than a raisin, but by the time the margin of 10mm is added, this would encompass the entire lobe and one NVB. (And I really like my NVB!)

A friend recently went to a urologist with frequent urination symptoms and an three-fold increase in his PSA. The urologist wants to do a roto-rooter (TURP), but did not give him any medication for BPH or addressed the PSA. I pointed that out to my friend and now he needs to find another urologist.

So you are absolutely correct that many men spend more time researching the right car than researching their prostate problem. I think part of the problem is that they trust the urologist and think that he/she is trained in all aspects of treating the prostate. The other problem is that - as you all know so well - it takes a while to understand the medical issues around the prostate. Those not that computer literate really struggle as it complicates their learning curve. It took a while before I could read detailed clinical trial reports and understand them. There are still aspects where having an MD or Ph.D. would be beneficial as sometimes I get the feeling there are implications I don't understand.

Salvage treatment is another aspect where I am in agreement with you in that all treatment options should be considered. That is why I consider it imperative to have someone with experience in their specialty do the initial treatment: decreases the possibility of positive margins, reduces potential side-effects, improves the overall success of the treatment.

When you consider that a surgeon is fluent in Da Vinci surgery (RP) after 250 operations, I certainly wouldn't want to be part of their learning curve. It may be less with a radiation oncologist, but they have other aspects (e.g. prostate positioning, treatment plan, margins, simulations, etc.) where I'd like to have someone treat me who has a lot of experience under their belt.

BB1100
==================================
Age 62
Oct 2008 2.8 PSA
Jan 2011 6.1 PSA
May 2011 5.3 PSA
Sep 2011 5.6 PSA
Sep 2011 36.0 PCA3+
Jan 2012 6.9 PSA
Jan 2012 14.8 PCA3+
May 2012 6.9 PSA
May 2012 19.4 PCA3+
Jun 2012 Biopsy: 1 core out of 7 had 25% adenocarcinoma Gleason 4
- Gleason = 4 + 3 = 7 - Clinical Stage T2a
- Prostate size 35cc; tumor size 1.5 cc approx. 5mm next to NVB
- Tumor on left lobe only; tumor within prostate capsule
- No visible bloodflow to tumor - very early stage, but intermediate grade
Jun 2012 Second Opinion on Biopsy: 1 core out of 7 had 20% adenocarcinoma Gleason 4
Jul 2012 7.27 PSA (5 weeks after biopsy - prostate must still be healing)
Posted 8/6/2012 5:15 PM (GMT 0)
GOP,

You have an interesting observation about the clinical trial process. I have considered joining a clinical trial, but I would like to have some sense (control) of direction in my treatment.

Once thing that is still unclear to me is who pays for the treatment/therapy and the extra tests (lipid/urine tests, colonoscopy, biopsy, etc.)? Doing a clinical trial adds another level of complication - from my perspective - as one has to give up something else that may not be what one wants. On the other side, one can back out of a clinical trial, I assume, if one is uncomfortable in the treatments decided by the 'computer'.

There is a clinical trial I am looking at as instead of trying to find the outer boundary of radiation exposure on the human body, this clinical trial wants to see if less treatments at the same radiation result in less side effects. Obviously, the trade-off is that there is a higher potential of prostate cancer coming back.

You made the right choice as your PSA is definitely heading in the right direction. So were the side effects of your brachy treatment as you had expected?

BB1100
==================================
Age 62 (my dad still calls me a 'young whipper-snapper'!)
Oct 2008 2.8 PSA
Jan 2011 6.1 PSA
May 2011 5.3 PSA
Sep 2011 5.6 PSA
Sep 2011 36.0 PCA3+
Jan 2012 6.9 PSA
Jan 2012 14.8 PCA3+
May 2012 6.9 PSA
May 2012 19.4 PCA3+
Jun 2012 Biopsy: 1 core out of 7 had 25% adenocarcinoma Gleason 4
- Gleason = 4 + 3 = 7 - Clinical Stage T2a
- Prostate size 35cc; tumor size 1.5 cc approx. 5mm next to NVB
- Tumor within prostate capsule on left lobe only
- No visible bloodflow to tumor - very early stage
Jun 2012 Second Opinion on Biopsy: 1 core out of 7 had 20% adenocarcinoma Gleason 4
Jul 2012 7.27 PSA (5 weeks after biopsy)
Posted 8/6/2012 5:56 PM (GMT 0)
Jerry,

I appreciate your posting (your "PCa History" pic is great, btw) as you talk about something I don't have a good handle on:

1. Was the location of your tumor in the prostate identified? If so, did they treat the entire prostate with the same radiation (proton) level? Since you had perineural invasion (PNI), I would have thought they would also treat your neurovascular bundle (NVB). Are the seminal vesicles part of the PNI? (Guess so as they treated them.) Was there any treatment for the lymph nodes?

2. I read that rectal bleeding can take time to appear and even longer to disappear, if untreated. Somehwere I read that steroid suppositories can help a lot, but I would hope that this was addressed by UFPTI, right? Many have said that they had no rectal bleeding during treatment, so I guess that having hemorrhoids (got that, too, btw) was not an issue then.

3. Yes, incontinence during radiation treatment doesn't seem to be the problem that it used to be, still a gotcha with RP, though.

4. Not to make light of it, but sometimes at work in the good ol' days, I thought I got something inserted there, too. never did like it...

As an aside and possibly unknown to those considering radical prostatectomy: when they cut out the prostate, they also cut out part of the urethrae, thus shortening the penis length by about an inch, maybe less. I don't think us guys have an inch or half of an inch to spare.

The other aspect I read repeatedly is that without use, a penis will atrophy (someone else called it the 'wet noodle syndrome'). They mentioned that when undergoing hormone deprivation one should use whatever means (Viagra, Cialis, etc.) to keep the plumbing working until the medication wears off and things return to 'normal'. The gotcha is that with the medication, there is no interest in sexual activity. A nice female thigh looks just as good as a chicken leg. Wouldn't believe it unless I had read it from someone undergoing ADP.

Among other reasons, like positive margins, incontinence, and ED, these two arguments above also contributed to my decision to not even consider RP as other treatments were that much better.

At the age and situation most of us are, we still need to be able to put a smile on as the alternative of being depressed is too ugly. And my wife won't let me get away with it even though I have inherited the "glass is half full" attitude from my parents.

I am glad you were able to get your PSA down to <0.1. Hope the side effects were not the bummer you expected, but then again, you live another day to smile in the face of adversity.

BB1100
==================================
Age 62 (my dad still calls me a 'young whipper-snapper'!)
Oct 2008 2.8 PSA
Jan 2011 6.1 PSA
May 2011 5.3 PSA
Sep 2011 5.6 PSA
Sep 2011 36.0 PCA3+
Jan 2012 6.9 PSA
Jan 2012 14.8 PCA3+
May 2012 6.9 PSA
May 2012 19.4 PCA3+
Jun 2012 Biopsy: 1 core out of 7 had 25% adenocarcinoma Gleason 4
- Gleason = 4 + 3 = 7 - Clinical Stage T2a
- Prostate size 35cc; tumor size 1.5 cc approx. 5mm next to NVB
- Tumor within prostate capsule on left lobe only
- No visible bloodflow to tumor - very early stage
Jun 2012 Second Opinion on Biopsy: 1 core out of 7 had 20% adenocarcinoma Gleason 4
Jul 2012 7.27 PSA (5 weeks after biopsy)
Posted 8/6/2012 6:13 PM (GMT 0)
Joe,

I had thought the 'cold spots' were history with the advent of 3D mapping of the prostate, incl. software to calculate positioning of the seeds.

In a 2009 video, Dr. Blasko said he had hoped that the future would help develop differential seed therapy (seed spacing is based on the location of tumors). Didn't come across that so far, though.

Sounds like your doc did the right thing playing it safe using BT with IGRT with your PSA now at <0.1.

BB1100
==================================
Age 62 (my dad still calls me a 'young whipper-snapper'!)
Oct 2008 2.8 PSA
Jan 2011 6.1 PSA
May 2011 5.3 PSA
Sep 2011 5.6 PSA
Sep 2011 36.0 PCA3+
Jan 2012 6.9 PSA
Jan 2012 14.8 PCA3+
May 2012 6.9 PSA
May 2012 19.4 PCA3+
Jun 2012 Biopsy: 1 core out of 7 had 25% adenocarcinoma Gleason 4
- Gleason = 4 + 3 = 7 - Clinical Stage T2a
- Prostate size 35cc; tumor size 1.5 cc approx. 5mm next to NVB
- Tumor within prostate capsule on left lobe only
- No visible bloodflow to tumor - very early stage
Jun 2012 Second Opinion on Biopsy: 1 core out of 7 had 20% adenocarcinoma Gleason 4
Jul 2012 7.27 PSA (5 weeks after biopsy)
Posted 8/6/2012 6:48 PM (GMT 0)
Hi Susan,

We all think and hope that we make the right decision in the treatment we choose. Everyone's body reacts different, plus the doctor's experience can make a big difference, too, especially in the context of being part of a great hospital team.

Thanks for your observations. Based on the research reports and feedback from the group of my PCa brothers here, the side effects seem more or less typical for internal and external radiation. Especially glad to read about no ED issues as men seem more hesitant to admit to it, which caused one clinical trial lead to state that the ED results from the questionnaire were so inconsistent, that he left them out of the trial results and conclusions. I think if the questions were clearer and the answers more specific, the results would be better. Putting a good questionnaire together is more art than science. Plus, having the wife confirm the results would be of great help, if possible. (My wife looked over my shoulder when I was doing the SHIM (Sexual Health Inventory for Men) and added her five cents. Actually, more like a Dollar! Heck, maybe the wife ought to fill out the SHIM!)

Looks like your husband is having a PSA bounce, which is normal from what I understand (see the Phoenix definition for biochemical failure which is PSA nadir + 2 vs. the ASTRO definition).

I am surprised he can still do or want to do such a physical job. I have a bad back and just get tired *watching* people work physically hard.

The main thing he is getting his health back and has your support.

BB1100
==================================

Pearl of Wisdom read some time ago:
------------------------------------
If we are smart, we learn from our mistakes.
If we are really smart, we learn from other people's mistakes.

==================================
Age 62 (my dad still calls me a 'young whipper-snapper'!)
Oct 2008 2.8 PSA
Jan 2011 6.1 PSA
May 2011 5.3 PSA
Sep 2011 5.6 PSA
Sep 2011 36.0 PCA3+
Jan 2012 6.9 PSA
Jan 2012 14.8 PCA3+
May 2012 6.9 PSA
May 2012 19.4 PCA3+
Jun 2012 Biopsy: 1 core out of 7 had 25% adenocarcinoma Gleason 4
- Gleason = 4 + 3 = 7 - Clinical Stage T2a
- Prostate size 35cc; tumor size 1.5 cc approx. 5mm next to NVB
- Tumor within prostate capsule on left lobe only
- No visible bloodflow to tumor - very early stage
Jun 2012 Second Opinion on Biopsy: 1 core out of 7 had 20% adenocarcinoma Gleason 4
Jul 2012 7.27 PSA (5 weeks after biopsy)
Posted 8/6/2012 7:20 PM (GMT 0)
Hello, Anxious in Florida,

Until I got the positive biopsy results, I was more of an outdoor person, healthy and fit. Since then, reading about PCa and learning about it has more or less become a full-time job in front of my PC or being on the phone. (Don't know how one can have a fill-time job trying to find the right treatment.) My wife complains about that as in Colorado, we like being outdoors with all the sunshine we have. I still drive my go-fast motorcycle and watch my weight, even more so since the diagnosis. I feel fit and have no symptoms, but it does affect my psyche. Could be getting older, too.

Like you, I like my prostate - and especially my neurovascular bundle. Doctors worry more about the prostate to make sure they get rid of the cancer. Ideally, imaging should be good enough to see each tumor cell and then follow up with focal proton or photon treatment until a DNA-based genetic solution found. Maybe it will happen in my lifetime, but I need to solve my PCa by the end of this year.

The bad news in Colorado is that there are no proton treatment facilities. IMRT is a mature technology and available here. IMRT-based technology like RapidArc or TomoTherapy is just being established here. So if I want proton therapy, I will need to spend a few months somewhere else getting treatment.

Without wanting to step on anyone's toes: the healthcare situation in the US is not good. PCa patients spend a lot of their own money to get treated, and sometimes need to declare bankruptcy. If one had to decide between food on the table for the kids or PCa treatment & the kids starving, is that a choice we need to make in 2012? I'll get off my soapbox now...

I was told to apply for insurance at each hospital as each state has different laws. Someone once said he had to abandon getting proton treatment as the insurance coverage was declined. Someone else said it took a lot of time to finally get approval. With Social Security becoming less secure and payments less in the upcoming years, I'd like to make sure I have enough for retirement.

Good thing you were able to work things out with the insurance and that your PSA is now down at 1.2.

BB1100
==================================
Age 62 (my dad still calls me a 'young whipper-snapper'!)
Oct 2008 2.8 PSA
Jan 2011 6.1 PSA
May 2011 5.3 PSA
Sep 2011 5.6 PSA
Sep 2011 36.0 PCA3+
Jan 2012 6.9 PSA
Jan 2012 14.8 PCA3+
May 2012 6.9 PSA
May 2012 19.4 PCA3+
Jun 2012 Biopsy: 1 core out of 7 had 25% adenocarcinoma Gleason 4
- Gleason = 4 + 3 = 7 - Clinical Stage T2a
- Prostate size 35cc; tumor size 1.5 cc approx. 5mm next to NVB
- Tumor within prostate capsule on left lobe only
- No visible bloodflow to tumor - very early stage
Jun 2012 Second Opinion on Biopsy: 1 core out of 7 had 20% adenocarcinoma Gleason 4
Jul 2012 7.27 PSA (5 weeks after biopsy)
Posted 8/6/2012 10:22 PM (GMT 0)
BB1100,

My uro would disagree with your comment about the shortening of the urethra resulting in a shorter penis. There are many on the board who believe that, and others who do not. I don't see any size issue after a shot of Trimix. More likely the "size" issues really do happen as a result of atrophy. That is a very good reason to use the pills and shots on a regular basis, even while on HT, if your uro is agreeable to that.

 

Posted 8/6/2012 11:26 PM (GMT 0)
Hi PC@52,

Thanks for your detailed posting. Sorry to read that you were only 52 years old when you were diagnosed. Supposedly younger men have less problems with side-effects and a better overall survival rate when treated with proton therapy. Having a lower PSA also improves the odds in general, I was told.

I have talked with the proton expert at MDAnderson and they had to do some head-scratching to get my answers, which just weren't as detailed as I had wanted. Basically, after reading many, many reports and talking to some of the experts in the field I came to the conclusion that I wan't getting the definitive results/recommendations I wanted nor a detailed description of the impact on the prostate and NVB. So I started asking what is the radiation impact on the prostate and how/when does the healthy tissue recover, if at all? Ditto for the NVB? The answer the expert received from the oncologist was: "It depends". Not good enough for me. I realize that every "body" has a slightly different effect and side-effects on radiation, but they should at least have a general knowledge of what radiation does to the prostate and surrounding tissue.

When I was first diagnosed, I tried talking with urologists to see what their specialty is and if they could help me. I could not get them on the phone as one after the other front desk person said: "Their time is money" and they wanted to meet me in person. The front desk person either had no clue what the doctor's specialty or just wanted me to come in. The last time I was pissed and told them that may be the case that their time is money, but my time is more expensive as I have much less of it than they do. So wasting my time meeting a urologist whose only focus is to do surgery is simply a waste of both of our time - and my money. The first - and last - urologist I met spent five minutes with me, did the DRE with the same conclusion as my GP: no nodules, and then charged me $300 for my visit. OK, his nurse used ultrasound to check if my bladder was empty and I filled out a SHIM test. The total time in the office was under 15 minutes, including emptying my bladder as requested. I did not receive any specific knowledge about my options other than to "let's do a biopsy". Discussing my options with members on this board pointed me in the right direction.

The proton expert at MDA did help me get a better understanding of the overall proton treatment process and he also confirmed that the 'bloody balloon' can happen occasionally, but not typically. The more detailed questions I asked were, though, quite a bit above his 'pay grade' and he needed to consult with their experts. At least he went as far as he could to get the answers.

I know MDA uses pencil-beam proton therapy (ditto for U of FL PTI, but not Loma Linda to my surprise), but the MDA proton expert mentioned that it is up to the physician to decide on its use for prostate cancer. More specifically, it was also up to him to decide on the margins - around the prostate and NVB - depending on the results on the initial assessments. I didn't think to ask about the margins around the seminal vesicles in hindsight.

If I may ask:

- What technology was used to identify your tumor grade and location? (multi-parametric) MRI/CT/PET scanner? Do they typically treat the seminal vesicles as another poster mentioned that his proton treatment also included his seminal vesicles, too?

- Do you know the margin around the prostate? The NVB? The seminal vesicles?

- Did they use the pencil-beam for your treatment? Did they mention if they expected less side effects using it?

- After the treatment, do they plan to do a colonoscopy to see if there is any residual damage to the colon?

(Note: anyone else having similar information on their treatment assessment would be good for all of us to know)

Imaging is still the weakest part of treating PCa. Ditto for defining muli-focal and bi-lobal cancers. Apparently breast cancer is quite a lot further along in this than the doctors are with PCa.

I appreciate your thoughts that the investors want to have an overall high success ratio to get more health insurance-related treatments. As far as I know, the cost of putting a proton therapy center in place is between $125 to 200 million. Interestingly enough, a report I came across yesterday said that the Mayo Clinic is putting up two Proton Therapy centers. (I think the one in FL is already under construction, if not already completed). As competition increases, maybe it drives down the cost. Anyway, the justification for Proton Therapy for the insurance companies is that it reduces the overall treatment cost in the long run as there are between 30-50% less secondary cancers according to one clinical trial. Don't know if the health insurance companies buy that argument. I have not seen that case made for IMRT or BT.

Thanks for pointing out neoadjuvant HT in your case. Not something I'd want to do just to increase the success odds for the hospital. Ideally, we should get just enough radiation to kill the cancer and to minimize the side effects. There was a clinical trial at Loma Linda and they found that 82 Gy is the upper limit of what we men can endure without significantly increasing the side-effects.

Another question if you don't mind and you can answer it rhetorically if you want:

As far as I know, the prostate gland is also a muscle which ejects the sperm in pulses during orgasm. If the prostate is radiated, would that not weaken its ability to pulse or not even be able to pulse? Would that not account for the "dry orgasms"? It is good to know that apparently the body does recuperate a bit as you noticed a return of the ejacs, which must be due to the prostate being able to pulse again. Any thoughts?

According to the comment by the radiation oncologist I consulted, the sperm may also go into the bladder, which had been mentioned in various research reports. (There is also the possibility of fistulas, which I think would gross us all out.) In any case, post-treatment and checking out our plumbing makes a lot of sense.

Thanks for any additional insights and feedback to my questions you may have. Let us know about your first post-treatment results. As someone else one said: Wishing you all zeros (PSA).

BB1100
==================================
Age 62
Oct 2008 2.8 PSA
Jan 2011 6.1 PSA
May 2011 5.3 PSA
Sep 2011 5.6 PSA
Sep 2011 36.0 PCA3+
Jan 2012 6.9 PSA
Jan 2012 14.8 PCA3+
May 2012 6.9 PSA
May 2012 19.4 PCA3+
Jun 2012 Biopsy: 1 core out of 7 had 25% adenocarcinoma Gleason 4
- Gleason = 4 + 3 = 7 - Clinical Stage T2a
- Prostate size 35cc; tumor size 1.5 cc approx. 5mm next to NVB
- Tumor on left lobe only; tumor within prostate capsule
- No visible bloodflow to tumor - very early stage, but intermediate grade
Jun 2012 Second Opinion on Biopsy: 1 core out of 7 had 20% adenocarcinoma Gleason 4
Jul 2012 7.27 PSA (5 weeks after biopsy - prostate must still be healing)
Posted 8/7/2012 12:28 AM (GMT 0)
On the other side, one can back out of a clinical trial, I assume, if one is uncomfortable in the treatments decided by the 'computer'.

BB, precisely. If I had been told that I had to undergo 40 sessions of beam radiation only to satisfy a research project, I very well may have said thanks but no thanks even though I wanted to be treated by Dr. Merrick. I firmly believe that by working closely with the patients, it is possible to allow them to get the treatment they want, and still have the necessary number of cases in each category. That is just my theory.


So were the side effects of your brachy treatment as you had expected?

To the letter. I had some discomfort for the first 30 days or so when the seeds were 'hot'. But I went back to work 2 days after treatment. Back to the gym after 1 week, and on my Harley (albeit with a doughnut) also after 1 week. I have no real continence issues except added urgency when I drink too much coffee or alcohol. Drinking either in moderation is not a problem.
My main concern was always ED. I was told that brachy patients who experience ED respond more readily to meds than do surgery patients. I do have partial ED, and I do respond wonderfully to Viagra. My sex life is actually better than it was before with more intense (although dry) orgasms. The only trick with Viagra is that it works best on an empty stomach so it requires a little planning.
All in all, I feel blessed, and I truly mean it when I say that my life actually more fulfilling now than it was prior to my diagnosis. I know that that is not the case with everyone, and I am very grateful to my creator for my good fortune.
God Bless, Man
Posted 8/7/2012 1:12 AM (GMT 0)
BB, some interesting stuff in this thread, but in a post just above, you said, "When I was first diagnosed, I tried talking with urologists to see what their specialty is and if they could help me. I could not get them on the phone as one after the other front desk person said: "Their time is money" and they wanted to meet me in person. The front desk person either had no clue what the doctor's specialty or just wanted me to come in. The last time I was pissed and told them that may be the case that their time is money, but my time is more expensive as I have much less of it than they do. So wasting my time meeting a urologist whose only focus is to do surgery is simply a waste of both of our time - and my money."

I have to say, unless I'm misreading what you're saying here, you were telephoning urologists out of the phone book, you weren't even their patient at this point, they had never set eyes on you, but you were angry that they wouldn't take time from their schedule of patients to jump on the phone and talk to you?  Maybe I'm misunderstanding.

Not only is THEIR time money, but so is the time of the patients stacked up in his waiting room, waiting nervously and patiently to get in to see them.  The day my uro delivered the news that I had cancer, he took  as much time with me as my wife and I needed.  He didn't hurry us in any way.  It may have been 45 minutes....I lost track of time.  I'm sure he fully understands what it's like to receive a diagnosis of cancer, and he was incredibly patient and understanding. 

When we walked out, I saw 8 or 9 patients in the waiting area, and it immediately occurred to me that they were probably angry because "the doctor had kept them waiting."  Ever since that day, I have a lot more patience with doctors, knowing full well they may have just delivered some terrible news to the patient just in front of me.  Or, maybe a patient had an unexpected difficulty with a biopsy, a cysto, or some other procedure, or something like that.

I also question your assertion that a uro's only focus is to do surgery.  My case and several others with which I'm quite familiar haven't been like that at all.  My uro said all along that surgery would be a good option for me, but that I should go home, learn all I can about this disease, and that he would help me find a good radiologist if I wanted to opt for brachy, or external beam radiation, or even cryo. 

Maybe I misunderstood what you were saying?

Post Edited (clocknut) : 8/6/2012 8:34:37 PM (GMT-6)

Posted 8/7/2012 5:47 AM (GMT 0)
Hi Clocknut,

I guess there is a bit of misunderstanding as I usually don't loose my cool. Nope, I didn't use the phone book to find a competent urologist, which I still have not found in my area, btw.

For example, I called a specific urologist - pointed out by a friend who had had IMRT to cure his PCa and had been the president of the local PCa chapter. This urologist had spent time at PCa chapter meetings talking about treating PCa and who really impressed my friend. Over the phone I introduced myself to the lady at the front desk, mentioned my friend who had referred me to him, and wanted to know about the types of treatments the urologist did aside from surgery. She said she didn't know, but would be glad to schedule an appointment. I said I'd appreciate it if he could call me back as it would only take a minute or two to clarify his treatment focus. I left my phone number. Then she called back and said that his "time was money" and he wanted to see me in person before discussing it any further. That's when I lost my cool. If she had simply said he does/treats RP, IMRT, BT, etc. I would have scheduled an appointment.

Another example: my GP mentioned a urologist at a local Cancer Clinic. I called up and talked with the front desk lady. I asked if this urologist was the local expert on prostate cancer. She replied that ALL their doctors (over 20+) were experts with ALL cancers, including prostate cancer. I said that there are about 2,000+ papers published every year just alone on prostate cancer, does she really think every doctor is really fluent in ALL cancers? I did not loose my cool and hung up after telling her I did not think I am talking to the right place to treat my cancer.

I realize that doctors are busy people and am patient in a waiting room when I have to wait. Like you said, they could be dealing with an issue that simply needs more time. Thus, I left my telephone number so that they could call me whenever they have time. I assumed they were with a patient and would give me short call at their leisure.

I leaned the hard way that doctors are not gods. My father-in-law died *very* painfully after two years of leukemia being treated at a University clinic back in the 90s. No one, possibly except for the doctors, had a clue he would die. Yes, I know that cancer kills and someone has to die sooner or later. I don't have all the facts of what happened there, but it certainly was a wake-up call for me. It felt like I hit a brick wall.

Another example: my neighbor could not sit due to severe pain for 4 years because many, many doctors (somewhere between 10 and 15) could not find out what he had. He finally flew to the Mayo Clinic with lots of painkillers and in 30 minutes it was obvious that he had nerve-ablation caused by a virus in his tail bone, which had to be removed. Then he spend almost a year getting off his painkiller addiction. He had lost 5 years of his life and had no income during this time. He had to pay for everything and couldn't even get disability when there was no solution to be found for 4 years.

Maybe to a person at a front desk, they feel like gatekeepers to make sure their employer and doctor/urologist is not side-tracked. But if I had gone to the meeting with the urologist, I would have taken time away someone who really needed his expertise and I would have been out at least $300 just to find out he is the wrong urologist for me.

You made a valid observation and I hope you understand my frustration of not finding any guidance - aside from my GP, whose PCa expertise is unfortunately is not that deep.

Hope this clears that point up. Thanks for bringing this to my attention.

BB1100
Posted 8/7/2012 3:44 PM (GMT 0)
Hi BB
I Googled “Phoenix definition for biochemical failure which is PSA nadir + 2 vs. the ASTRO definition”. Thanks for that, some very interesting reading amongst the various studies. One which caught my eye was “Relationship between prostate-specific antigen bounce body fat distribution and body mass index” which concluded that patients with a lower BMI are more likely to experience a PSA bounce.
For any other ‘bounce’ candidates, you may also find the studies of interest
http://www.ncbi.nlm.nih.gov/pubmed?term=psa%20bounce%20brachytherapy
Posted 8/7/2012 6:14 PM (GMT 0)

BB1100 said...
Ziggy,

I knew Dr. Crawford was well known and a national authority on prostate cancer as he had also been interviewed in a book I had read. However, I wasn't aware of all the affiliations he has and his intense focus on prostate cancer. The research and focus aspect also applies to Dr. Al Barqawi. Glad to know you were in such capable hands.

The next time you have a follow-up, could you check what the margin was around your tumor that they treated or if they treated the affected (entire) lobe? Wonder how they control the margins as the vprobe they use can create a variable size ice-ball, freeze tissue down to various temperatures and also need to consider time as the longer they freeze, the more surrounding tissue is frozen. And this procedure is done twice with warming in-between. Without the warming probe for the urethrae, the patient would have some not-so-fun issues to deal with afterwards.

From what I understand, even though my tumor is only a bit larger than a raisin, but by the time the margin of 10mm is added, this would encompass the entire lobe and one NVB. (And I really like my NVB!)

A friend recently went to a urologist with frequent urination symptoms and an three-fold increase in his PSA. The urologist wants to do a roto-rooter (TURP), but did not give him any medication for BPH or addressed the PSA. I pointed that out to my friend and now he needs to find another urologist.

So you are absolutely correct that many men spend more time researching the right car than researching their prostate problem. I think part of the problem is that they trust the urologist and think that he/she is trained in all aspects of treating the prostate. The other problem is that - as you all know so well - it takes a while to understand the medical issues around the prostate. Those not that computer literate really struggle as it complicates their learning curve. It took a while before I could read detailed clinical trial reports and understand them. There are still aspects where having an MD or Ph.D. would be beneficial as sometimes I get the feeling there are implications I don't understand.

Salvage treatment is another aspect where I am in agreement with you in that all treatment options should be considered. That is why I consider it imperative to have someone with experience in their specialty do the initial treatment: decreases the possibility of positive margins, reduces potential side-effects, improves the overall success of the treatment.

When you consider that a surgeon is fluent in Da Vinci surgery (RP) after 250 operations, I certainly wouldn't want to be part of their learning curve. It may be less with a radiation oncologist, but they have other aspects (e.g. prostate positioning, treatment plan, margins, simulations, etc.) where I'd like to have someone treat me who has a lot of experience under their belt.

BB1100
==================================
Age 62
Oct 2008 2.8 PSA
Jan 2011 6.1 PSA
May 2011 5.3 PSA
Sep 2011 5.6 PSA
Sep 2011 36.0 PCA3+
Jan 2012 6.9 PSA
Jan 2012 14.8 PCA3+
May 2012 6.9 PSA
May 2012 19.4 PCA3+
Jun 2012 Biopsy: 1 core out of 7 had 25% adenocarcinoma Gleason 4
- Gleason = 4 + 3 = 7 - Clinical Stage T2a
- Prostate size 35cc; tumor size 1.5 cc approx. 5mm next to NVB
- Tumor on left lobe only; tumor within prostate capsule
- No visible bloodflow to tumor - very early stage, but intermediate grade
Jun 2012 Second Opinion on Biopsy: 1 core out of 7 had 20% adenocarcinoma Gleason 4
Jul 2012 7.27 PSA (5 weeks after biopsy - prostate must still be healing)

I won't be seeing Dr Barqawi until next Februay. I just go on an annual basis now. Some of the TFT details I have forgot or never got so much into detail as you are.  Face it back in 2007 I felt I only had the choices of radical surgery or radiation. AS was really unheard of then and if I was diagnosed today I probably would elect AS. But back to 2007, First of all you appear to be in Colorado so I assume you may know of (TUCC) The Urology Center Of Colorado right by the football stadium. Well that was where I had my first biopsy and my first talk with a urologist. Nice building I'll admit. So when I was told of my positive biospy I asked how long would I have if I did nothing. I received the strange answer that he never had been asked that before and he said maybe 7 years. Of course this is my *** anxiety time for I had only went initially for a physical two weeks earlier now I had a 7 year life span  if I didn't undergo radical prostate treatment.. Not soon after I looked back and saw his first answer as rather odd and the 7 years complete BS. That's when I first began to suspect the state of PCa treatment in this country and soon  became one of the early believers of massive over treatment which is still goin on, but I digress.  So when I saw the timely broadcast of a reporter being diagnosed and checking out the treatments I too had to go along with this new clinical study of TFT if I qualified. Others here thought I was crazy and foolish. I saw it as a no brainer.  But to get back to your questions at the end of that braodcast Dr Barqawi web site was shown and invites for those to contact him through it. I did and soon later after brought in my biopsy and past psa tests ( I think I had 2 over 8 years) . Below is a link to it but it appears not to have been updated recently but the link  to make an appointment or chat with him by email appears to be still working. Thus I suggest you ask him your questions directly. I haven't emailed him since 2010 but when I did he usually got back to me within a day. If you do live in Colorado I would definitely suggest you eventually make an appointment to see him or Dr Crawford. Dr Crawford looked at my mapping biopsy with Barqawi the day I had it results. Dr Crawford does have the radiation background and would be better if you want to discuss that along with TFT and other options. Dr Barqawi admitted to me a surgeon his bias against brachytherapy for what radiation does to the body. I consider myself to be very lucky for the fact I was diagnosed a month before a local broadcast of a cutting edge 21st century prostate treatment, and doubly so by living nearby (actually accross town) the institution offering it. http://www.alprostate.com/Pages/default.aspx

Post Edited (Ziggy9) : 8/7/2012 12:23:39 PM (GMT-6)

Posted 8/7/2012 8:46 PM (GMT 0)
BB,
First, don't worry about "losing your cool" now and then. Some places, definitely not all but some, treat you as though you are just another customer in line at WalMart.

Tried to answer some of your questions below:

"If I may ask:

- What technology was used to identify your tumor grade and location? Tumor Grade was scored (Gleason) by my initial urologist’s lab (G^) and I forwarded the slides to MDA and they had their pathologist re-score them and upgraded some samples to G7. Tumor location (and/or lack of) was determined through endorectal MRI (NOT fun). (multi-parametric) MRI/CT/PET scanner? Do they typically treat the seminal vesicles as another poster mentioned that his proton treatment also included his seminal vesicles, too?"

I believe that they typically do treat the sem ves.

"- Do you know the margin around the prostate? The NVB? The seminal vesicles?"

I do not know the exact margins for each. They (the RO, the “Dosimetrist” and the physicist) come up with a treatment plan which is determined by the eMRI and they come up with a 3-D treatment image that was shown to me (I could have had them determine the exact margins from that, but at some point I decided to let up a bit and put some faith in them. I kind of over badgered a couple of surgeons on specific surgical techniques that they use and by the time I had gotten to Houston, I had pretty much decided to go that route and let a few details go by.). The team then takes the treatment plan in front of a panel and it must be approved by the panel before you can start. At some point this technology may be extended to focal treatments but even with huge advances in imaging techniques, the only way to know for certain if a particular tissue has microscopic atypical foci, adenocarcinoma or malignant tendencies that might require treatment is to biopsy. Yes larger tumors, denser masses, increased blood flow can be imaged now, but focally treating smaller “tumors” or treating zero margins and not touching the nerve bundles only to have the pre-tumorous cells amass later and need retreatment would lead to the end of this therapy (as well as any that would have a recidivism rate that is anything above surgery) through insurance companies that really only look at overall survival and reoccurrence. Since the nerve bundles extend and wrap around the capsule and do not just pass alongside it like tubes that can be avoided and that post surgery pathology reports show that that is an area of first invasion, I don’t think that the radiation industry will move towards a “zero margin” treatment that I get the feeling you are searching for. I know, I was there looking for the same thing and wanted Dr. Lee to “shrink” the treatment zone to look the same size as my prostate.

"- Did they use the pencil-beam for your treatment? Did they mention if they expected less side effects using it?"

I did have the pencil beam. They don’t tell you that you’ll have less SE from it, you are there with many other patients in the facility and only about 25% of them can have it (there is only one PB gantry and 3 scattered beam gantries) and I don’t think they want the other patients to believe that they are getting a lesser option. I believe that they can plan for slightly smaller margins with the PB as it is like spot painting (VS a stencil like application with the scattered beam). Patients with odd or asymmetrical prostates benefit more from this as they can have the energy released in a non-tunnel like fashion. (ie. If you prostate is curved inward and shaped around your rectum, they do not have to treat as large an area and radiate as much of the rectum.

"- After the treatment, do they plan to do a colonoscopy to see if there is any residual damage to the colon?"

No. And they do not want you having one without notifying them. I had one right before I started to ensure that there were not any areas near the treatment site to be concerned about. From what I've read, rectal bleeding happens in only a small population and is caused by new vascular growth on the inner lumen of the rectum (right next to the prostate which is forced against it with the balloon during treatment). It usually clears up quickly by itself and is alleviated with stool softeners.




"Thanks for pointing out neoadjuvant HT in your case. Not something I'd want to do just to increase the success odds for the hospital."

One benefit of the HT therapy is that many patients present with very large prostates and the Lupron will reduce the size of the gland significantly (and also the resultant treatment area, I believe). I would have to say that I had to sell the treatment team on me not having it.

"Ideally, we should get just enough radiation to kill the cancer and to minimize the side effects. There was a clinical trial at Loma Linda and they found that 82 Gy is the upper limit of what we men can endure without significantly increasing the side-effects."

It would be important to remember that Loma Linda has the oldest and least precise technology in the field today and trials from one clinic with one delivery form may not be applicable to other clinics.

"Another question if you don't mind and you can answer it rhetorically if you want:
As far as I know, the prostate gland is also a muscle which ejects the sperm in pulses during orgasm. If the prostate is radiated, would that not weaken its ability to pulse or not even be able to pulse? Would that not account for the "dry orgasms"? It is good to know that apparently the body does recuperate a bit as you noticed a return of the ejacs, which must be due to the prostate being able to pulse again. Any thoughts?"

There is/was a definite change in how the gland spasms at orgasm, hard to verbalize but kind of like not quite being able to finish and seems like it lasts longer and maybe more intense. Gotten used to that and seems to have to returned to a more “normal” sensation now but still slightly different.

"According to the comment by the radiation oncologist I consulted, the sperm may also go into the bladder, which had been mentioned in various research reports. (There is also the possibility of fistulas, which I think would gross us all out.) In any case, post-treatment and checking out our plumbing makes a lot of sense."

My doctor there (Dr. Lee) was a very big advocate of continuing to exercise the organ during and after treatment and that daily erections were highly encouraged. I was down there by myself for the duration and told him I didn’t always have any outlet or inspiration and he gave me a bottle of Viagra and had me take it before I went to sleep so “at least I’d wake up having had some exercise”. From reading a few of your posts, you seem a bit like me and really want to dive in and dissect the statistics of the different treatment modalities and I can tell you, you probably won’t find what you want. I met 50+ men while down at MDA and more than 50% of them hadn’t had sex in years prior to their dx and most had suffered from urinary issues as well. Beside most of them being 65-75 and some in not great shape, we were NOT a very good population to sample from for SEs because we were so diverse in our physicality. Clinical trials are not set up to accurately discern (with statistical significance) more than one to 3 varying inputs (usually dose, a competitive treatment or possibly a very distinct disease state of type) and the trials are generally set up to evaluate only a couple of end points (usually OS – overall survival at a time point, and in our case PSA). In the majority of clinical trials, outputs such as SEs are generally only trended.

In the end, I chose PBT because I felt it was the least invasive, had the technology to minimize the effects of excess radiation to surrounding tissues and could find very few patient reports of my two biggest fears: incontinence and ED. That AND it allowed me to spend 3 months in Texas golfing 5 days a week, but I digress…

Good luck on your journey and you can always email me directly if you want my phone number to talk and ask anything in person. [email protected]

Tom
Posted 8/7/2012 8:50 PM (GMT 0)

BB1100 said...
1. Was the location of your tumor in the prostate identified? If so, did they treat the entire prostate with the same radiation (proton) level? Since you had perineural invasion (PNI), I would have thought they would also treat your neurovascular bundle (NVB). Are the seminal vesicles part of the PNI? (Guess so as they treated them.) Was there any treatment for the lymph nodes?

2. I read that rectal bleeding can take time to appear and even longer to disappear, if untreated. Somehwere I read that steroid suppositories can help a lot, but I would hope that this was addressed by UFPTI, right? Many have said that they had no rectal bleeding during treatment, so I guess that having hemorrhoids (got that, too, btw) was not an issue then.

1) Tumor was primarily in Left Base, however, 2% of biopsy in Right Apex.  Treatment is to the entire prostate.  Left side one day, right side the next.  My understanding is that the PNI is identified in the biopsy cores.  The seminal vesicle radiation was done because I had intermediate risk and was precautionary. No treatment for lymph nodes.  I think, but am not sure, that IMRT would be used in combination with proton to irradiate the lymph nodes. 

2) Yes there are a number of treatments for rectal bleeding including steriod suppositories.  Here's the statement we were given by UFTPI.

 

"Approximately 20% of patients will note at least one episode of rectal pain or hemorrhoidal bleeding at some time after completion of radiotherapy. While this can be frightening if not anticipated, these symptoms virtually always resolve spontaneously or with medication. Please contact us if you experience this symptom so that we may initiate the appropriate therapies. Initial therapy often involves the use of steroid suppositories. We generally prefer to avoid endoscopic evaluations (colonoscopies), "Electrocautery", or "argon laser therapy" unless conservative measures have failed."

...Jerry

 

Posted 8/9/2012 1:05 AM (GMT 0)
Ziggy,

I had a brain freeze and had forgotten that you already had your PCa treatment some time ago. Thanks for the URL and I'll see what additional insights I can get from Dr. Al Barqawi on margins and my (beloved) NVBs.

You are correct that back when you had this surprise sprung on you, AS was not a consideration. At some point it was called the less military term 'watchful waiting'. I had the same level of anxiety as you had when I found out from my GP that my PSA values are moving in the wrong direction and there might be a chance of PCa. He tried to keep me calm. Since there was not much movement in my PSA, we agreed to monitor my PSA and I'd also check my PCA3+. (Just read today a Ph.D. thesis - in German, in case anyone want to read it - on the value of PCA3+ on the tumor and there appears no correlation). However, when I went for a baseline color Doppler ultrasound of my prostate, I was shocked that I had Gleason 4. I have no problems psychologically being on AS with a Gleason 3, but with Gleason 4, waiting is no longer an option. The good news in all this is that my cancer is growing slow, so it allowed me the time to learn about it and the treatment options available. And that it can be cured. Without surgery. And then I exhaled.

I did see the same video about that Denver newscaster/reporter and sent him an email to his office to see how his TFT with Dr. Crawford went as it had been a while since he had the treatment, but never did hear from him.

What my brain is still trying to figure out is why do the physicians (primarily uroligists) want do to a extensive biopsy, like a saturation biopsy, and then go ahead and treat the *entire* prostate with the same level of internal/external radiation? If they find a Gleason 4 in a small tumor like with me, why go the extra mile (biopsy-wise) if the entire prostate is treated anyway?

I recall reading a paper from someone at the U of CO Medical Center that argued to have an extensive biopsy (I recall 78 samples) before admitting a patient for treatment. Since they do use TFT, they may simply want to make sure the other lobe has no cancer clusters. But wouldn't a multi-parametric MRI achieve the same results without the patient having to 'endure' an extensive biopsy? Maybe it is because there aren't that many multi-parametric MRI machines out there, nor that many experts who can read their display.

As someone else mentioned in his posting, there really is no way the see if there are any cancer clusters there, which is why they use 'extensive' margins (which would damage my NVBs) to increase the odds of getting all of the cancer. So if there is no sure way to find these cancer clusters, why do the extensive biopsy, especially if the cancer could be hiding in the NVB or seminal vesicles.

I am sure you are really glad to have all this behind you. I talked with a friend of a friend and he had IMRT about 10 years ago and could not remember his PSA values. That's where I want to be.

Thanks for your info and feedback.

BB1100
Posted 8/9/2012 1:35 AM (GMT 0)
PC@52,

Thanks for your feedback as that now made a lot of things fall into place for me, along with the feedback from all other posters. I am sure many others reading the postings/feedback can benefit from this information as it lifts the fog of uncertainty of treatment and side effects of what awaits those of us who have not been treated.

As for being cool: I was once anchored near a French island. During the night the light wind shifted and when I woke up my boat was right in front of a French boat probably less than 10' away. He was casually sipping his coffee and enjoying his cigarette watching my boat. I said: "Bon jour" and he casually replied the same. I apologized for being too close and he responded: "No problem." In most of the US, boaters would have the air horn out or somehow fall off the handlebars. So when it comes to being cool, he is my hero.

I try, REALLY try, to understand when some people have no clue or care about their job or what their boss does. It irks me, but I try to be cool. Just sometimes, when I see my time - and life - not being appreciated, I have to REALLY work on it. And once in a while, I fail - but at least I don't rip their heads off. Usually I just say: "Thank you" and hang up. When the urologist charged me $300 for 5 minutes and a 30 second DRE with no new information and no guidance or next steps, I said my good-bye and just left the office never to return.

You are probably quite correct that at some point I'll just need to move forward without all the answers. The good thing is that I am getting enough data points at the theoretical/clinical/research and patient/feedback level that when I decide on the treatment, I know what the doctor is saying and can hopefully ask some smart questions as to "why this" and "why that".

Thank you for your openness in answering my questions as no report I read ever got down to that level. Everyone's body is different and I hope that my eventual treatment will have results being as good as yours and the others (with exceptions) who responded.

BB1100
==================================
Age 62
Oct 2008 2.8 PSA
Jan 2011 6.1 PSA
May 2011 5.3 PSA
Sep 2011 5.6 PSA
Sep 2011 36.0 PCA3+
Jan 2012 6.9 PSA
Jan 2012 14.8 PCA3+
May 2012 6.9 PSA
May 2012 19.4 PCA3+
Jun 2012 Biopsy: 1 core out of 7 had 25% adenocarcinoma Gleason 4
- Gleason = 4 + 3 = 7 - Clinical Stage T2a
- Prostate size 35cc; tumor size 1.5 cc approx. 5mm next to NVB
- Tumor on left lobe only; tumor within prostate capsule
- No visible bloodflow to tumor - very early stage, but intermediate grade
Jun 2012 Second Opinion on Biopsy: 1 core out of 7 had 20% adenocarcinoma Gleason 4
Jul 2012 7.27 PSA (5 weeks after biopsy - prostate must still be healing)
Posted 8/9/2012 12:56 PM (GMT 0)

BB1100 said...
Ziggy,

I had a brain freeze and had forgotten that you already had your PCa treatment some time ago. Thanks for the URL and I'll see what additional insights I can get from Dr. Al Barqawi on margins and my (beloved) NVBs.

You are correct that back when you had this surprise sprung on you, AS was not a consideration. At some point it was called the less military term 'watchful waiting'. I had the same level of anxiety as you had when I found out from my GP that my PSA values are moving in the wrong direction and there might be a chance of PCa. He tried to keep me calm. Since there was not much movement in my PSA, we agreed to monitor my PSA and I'd also check my PCA3+. (Just read today a Ph.D. thesis - in German, in case anyone want to read it - on the value of PCA3+ on the tumor and there appears no correlation). However, when I went for a baseline color Doppler ultrasound of my prostate, I was shocked that I had Gleason 4. I have no problems psychologically being on AS with a Gleason 3, but with Gleason 4, waiting is no longer an option. The good news in all this is that my cancer is growing slow, so it allowed me the time to learn about it and the treatment options available. And that it can be cured. Without surgery. And then I exhaled.

I did see the same video about that Denver newscaster/reporter and sent him an email to his office to see how his TFT with Dr. Crawford went as it had been a while since he had the treatment, but never did hear from him.

What my brain is still trying to figure out is why do the physicians (primarily uroligists) want do to a extensive biopsy, like a saturation biopsy, and then go ahead and treat the *entire* prostate with the same level of internal/external radiation? If they find a Gleason 4 in a small tumor like with me, why go the extra mile (biopsy-wise) if the entire prostate is treated anyway?

I recall reading a paper from someone at the U of CO Medical Center that argued to have an extensive biopsy (I recall 78 samples) before admitting a patient for treatment. Since they do use TFT, they may simply want to make sure the other lobe has no cancer clusters. But wouldn't a multi-parametric MRI achieve the same results without the patient having to 'endure' an extensive biopsy? Maybe it is because there aren't that many multi-parametric MRI machines out there, nor that many experts who can read their display.

As someone else mentioned in his posting, there really is no way the see if there are any cancer clusters there, which is why they use 'extensive' margins (which would damage my NVBs) to increase the odds of getting all of the cancer. So if there is no sure way to find these cancer clusters, why do the extensive biopsy, especially if the cancer could be hiding in the NVB or seminal vesicles.

I am sure you are really glad to have all this behind you. I talked with a friend of a friend and he had IMRT about 10 years ago and could not remember his PSA values. That's where I want to be.

Thanks for your info and feedback.

BB1100

Ironically the day after the TFT broadcast I had an appointment with Dr Westmacott at TUCC. He was the radiation guy and if it had not been for my TFT discovery I likely would've had seeds with him. But we discussed the TFT special for he had watched it too and had trained under Dr Crawford as a urologist. He had an accident could no longer so surgery and went to radiation. But this ties in for he warned me about the insurance not paying for the 3d Mapping biopsy. That did happen and Dr Barqawi won their approval by explaining why it must be done for TFT. It's true as you said there's no reason to do so if one is just removing the entire prostate or destroying it by radiation or cryo. At the time I found it odd that the insurance had no problem with the actual TFT clinical study. The amount of cores is largely determined by the size of the gland when taken. Mine after taking avodart was down to 28 grams and I had 45 cores removed. As far as enduring an extensive biopsy it's not done as a normal trus biopsy. You still have the sonic whatever shoved up you but all the needles enter through the perineum which unlike the normal biopsy requires sedation and one day with a catheter. You wake up sore and you do not want to look at the perineum area for after all those needles is not a pretty site. But of course you couldn't take that number of cores through your rectum without doing serious damage. TFT is also done through the perineum.

Post Edited (Ziggy9) : 8/9/2012 6:59:12 AM (GMT-6)

Posted 8/13/2012 4:29 PM (GMT 0)
I had an interesting call with a radiation oncologist at MD Anderson last week. He works with both photon and proton therapy and mentioned that based on what he knows about my case he would like to add hormone therapy (HT) to increase the overall long-term survival, i.e. no secondary cancers down the road. I mentioned that I'd rather not use HT and deal with the possibility of secondary cancer (my research shows that this could be the case in 30% depending in the type of therapy) in 10 plus years as new technologies, e.g. a DNA-based solutions, might/should be available by then.

Question for those of you who have used HT:

a. How long was it used - intermittent (On/Off time period) or long-term?

b. How long did it take for the side-effects to go away?

c. Was the primary purpose to reduce testosterone levels in combination with a therapy (which seems to be the case with many of the postings here) - or was it the primary treatment? Or was it used to treat BPH first? Or was it used after primary treatment?

d. Did your treating physician explain the impact of the side effects and their duration/recovery time?

e. Did your treating physician explain the effects on the prostate during treatment?

f. Based on the results achieved, did you feel that HT justified its use?

g. Any other comments or feedback you'd like to share/enlighten us?


I also asked if pencil-beam proton therapy reduced the side effects as it can be used more precisely. He mentioned that pencil-beam proton therapy is primarily used in prostate cancer to treat a prostate that has curved around the colon or is curved in a direction that requires pencil-beam proton therapy. There is no reduction in side effects over normal (scattering) proton therapy.

Lastly, I asked about the "modulated" part of Intensity-Modulated (Photon or Proton) Therapy. I mentioned that I would have thought if multi-parametric MRI was used they could pinpoint the tumor size and location to focus their treatment on the tumor and thus reduce the side effects by radiating the surrounding area less.

He enlightened me that while this could be done, typically the entire prostate is treated with 78 Gy proton radiation and this drops off significantly at the margins.

h. Does anyone reading this post have experience to this effect, for example with IMRT or IMPT?

He further said that margins are defined on a case by case basis as they want to get all of the cancer, which is why the NVB and seminal vesicles are also treated. Overall, in the medical community, getting rid of the cancer is the primary objective, which is also why the prostate is thus treated with a conformal beam.

Asking about the effect of radiation on the prostate, he acknowledged that both the tumor and healthy cells' DNA are damaged, but that the tumor cells have the most extensive damage. The healthy cells typically can recover, but to what extend/percentage he did not know - but they do to some extend based on his experience. The NVB seem to be able to recover better. The other side effect of reduced semen volume is typical after radiation. A 50% reduction is quite good and often is much more, but in the overall picture this is not that critical, at least from my perspective.

With respect to other sexual side effects, he mentioned that initially, the pulsation during orgasm is less and may feel 'incomplete'. However, the orgasm strength itself will eventually improve, but will feel different, even if it is stronger than before. This is where he mentioned the recovery of the healthy prostate cells.

I was quite impressed with this doctor. Not that I am a medical expert, but my questions could not stump him and he took the time to work through my questions and made sure I understood the reasoning of his approach and understood why certain procedures and processes were followed.

Any feedback and thoughts are appreciated. My hope is that we can get a better understanding of our journey and the decisions we (may) need to make.

BB1100
Posted 8/13/2012 5:35 PM (GMT 0)
BB,
You used the term "secondary cancer" which means another type of cancer other than prostate cancer. These are rare with modern radiation. I believe your doctor was referring to a reoccurrance of prostate cancer which does occur in 30% of intermediate risk cases.
There have been a few new studies that show that a short term course of HT added to radiation for intermediate risk cancers has a significant survival improvement. There are several reasons for adding HT to radiation; It shrinks the prostate making radiation more effective and lessens the exposure to areas outside the prostate. There is more overall dose going to a smaller area resulting in a more effective kill. The HT reduces the tumor size and affects the DNA of cancer cells making them easier to kill. If there are small spots of micromets in other parts of your system then HT can kill them. If you use Casodex only for 6 months the side effects are pretty minimal. Loss of libido, maybe some breast swelling which can be stopped by Fermera and hot flashes a couple of times a day lasting just a few minutes. All these go away in about 2 months after stopping.
At 78gy this dose is more than adequate for low risk cancer and may be marginal for intermediate risk cancer. This is one of the major issues of Proton in that it cannot deliver a high dose. The usual IMRT dose is 81gy and brachytherapy is over 100 gy. A combo Brachy/IMRT is bewteen 130 gy and 150gy and this is why it is so effective for intermediate grade cancers.
Posted 8/13/2012 6:17 PM (GMT 0)
Question for those of you who have used HT:

a. How long was it used - intermittent (On/Off time period) or long-term? 12 months

b. How long did it take for the side-effects to go away? 2 months later and still not quite there.

c. Was the primary purpose to reduce testosterone levels in combination with a therapy (which seems to be the case with many of the postings here) - or was it the primary treatment? Or was it used to treat BPH first? Or was it used after primary treatment?

High Dose Radiation (HDR) in combination with External Beam Radiationfor 5 weeks


d. Did your treating physician explain the impact of the side effects and their duration/recovery time? To some degree, I believe I was give a some reading material.

e. Did your treating physician explain the effects on the prostate during treatment?

Yes , I was given the standard reading material. But I learned a lot more on this forum.

f. Based on the results achieved, did you feel that HT justified its use?

Yes I hope.

g. Any other comments or feedback you'd like to share/enlighten us?

SEs and quality of life are not talked about enough when making such major decisions.


Posted 8/15/2012 5:22 AM (GMT 0)
JohnT,

Thanks for pointing out an ambiguity that I did not interpret correctly. In my discussions and while reading all these various research documents, they said that radiation could potentially cause secondary cancers. I interpreted that as prostate cancer, but that would NOT make sense if the prostate had already been radiated. So yes, that secondary cancer would occur somewhere else. Good catch! Thanks! (I think I made a mental jump from focal therapy - where prostate cancer could reoccur in the other lobe - to whole gland/prostate treatment and didn't catch that.)

Your HT description is very much appreciated. Since I haven't delved into HT at this point - just hate those side-effects, I was unaware that HT could kill small spots of micromets. The impact on the prostate are completely in line with what the MDA radiologist described, although he didn't go into too much detail when he noted a significant hesitancy on my part for using HT concurrent with radiation. He said he understood and would respect my wishes, but the results with HT do justify using them.

In the posting reply by FoxRun, he is still waiting to get over the side effects two months after stopping HT. It could be that using HT for 12 months has a significantly longer-term impact on the recovery than just using it for 6 months.

As for dose-escalation therapy, Loma Linda did a clinical trial with dose-escalated radiotherapy (doses of 79.20 Gy to 82 Gy) and I recall that they found that the increase in side effects and Grade 3 morbidity showed that this is the maximum that our bodies can endure. I am sure they could apply an even higher dose, but our bodies can only take so much.

Based on your comments, it appears that your research indicates that IMRT - or seeds with IMRT - has better long-term overall survival. Your own results definitely indicate that this is a successful approach for intermediate risk cancers. Do you have any research data on this single or dual-therapy approach? Would these significantly higher Gy numbers not have a lot worse side-effects if 82Gy is the max PT radiation level? Or can we endure higher Gy with IMRT and seed? I must be missing something - like that there is an interim recovery period between therapies?

BB1100
==================================
Age 62
Oct 2008 2.8 PSA
Jan 2011 6.1 PSA
May 2011 5.3 PSA
Sep 2011 5.6 PSA
Sep 2011 36.0 PCA3+
Jan 2012 6.9 PSA
Jan 2012 14.8 PCA3+
May 2012 6.9 PSA
May 2012 19.4 PCA3+
Jun 2012 Biopsy: 1 core out of 7 had 25% adenocarcinoma Gleason 4
- Gleason = 4 + 3 = 7 - Clinical Stage T2a
- Prostate size 35cc; tumor size 1.5 cc approx. 5mm next to NVB
- Tumor on left lobe only; tumor within prostate capsule
- No visible bloodflow to tumor - very early stage, but intermediate grade
Jun 2012 Second Opinion on Biopsy: 1 core out of 7 had 20% adenocarcinoma Gleason 4
Jul 2012 7.27 PSA (5 weeks after biopsy - prostate must still be healing)
Posted 8/15/2012 5:53 AM (GMT 0)
FoxRun,

Thanks for your posting and feedback.

I am completely in agreement that the medical community needs to enlighten patients not only about side effects, but also about treatment options - aside from RP. The older I get, the more I hate surprises - and the side-effects of treating prostate cancer can/could make a grown man cry. I recall my "deer-in-the-headlights look" when my GP said I have a 'problem' as my PSA had gone up to a critical point and the urologist spent five minutes with me not discussing options or anything, only that a (shot-in-the-dark) biopsy could shed more light. Good thing I learned a thing or two about color Doppler ultrasound on this forum and what things to watch out for during a biopsy.

My hope is that some newly diagnosed reader with PCa - like myself - will read this thread and become a bit more enlightened. There is so much knowledge here - and compassion - that it is sad we get so little support from the medical community. The "Veteran Members" here have so much knowledge and are so willing to share, it should give newly diagnosed PCa readers -and their spouses - the confidence to reach out to them.

So sorry to read that you - being so young - had to learn about your condition by reading as there are always more questions than answers. At least we have a way to go back and forth to clarify our thinking/postings.

I have come across some more recent research reports and there appears to be a stronger focus of QOL (Quality of Life) issues. So there is a light at the end of the tunnel. The bad news is that one needs to dig a bit deeper to get to this data. I would have never thought I would/should have to dig into those medical/clinical reports and journals and in reality, should not have to. The older I get, the more I realize how much further we are getting away from an ideal world.

I would have thought your T (testosterone?) levels should be much higher after two months off HT. Did you check them before HT? Were they around 400-500? How often do you have them checked?

(I did notice that my testosterone levels are not what they used to be and am taking a natural supplement, which has indeed boosted my testosterone levels. Still no stud-muffin like when I was 18, but no complaints from my better half.)

The main thing is that it seems like you are out of the woods once the side effects wear off.

BB1100
==================================
Age 62
Oct 2008 2.8 PSA
Jan 2011 6.1 PSA
May 2011 5.3 PSA
Sep 2011 5.6 PSA
Sep 2011 36.0 PCA3+
Jan 2012 6.9 PSA
Jan 2012 14.8 PCA3+
May 2012 6.9 PSA
May 2012 19.4 PCA3+
Jun 2012 Biopsy: 1 core out of 7 had 25% adenocarcinoma Gleason 4
- Gleason = 4 + 3 = 7 - Clinical Stage T2a
- Prostate size 35cc; tumor size 1.5 cc approx. 5mm next to NVB
- Tumor on left lobe only; tumor within prostate capsule
- No visible bloodflow to tumor - very early stage, but intermediate grade
Jun 2012 Second Opinion on Biopsy: 1 core out of 7 had 20% adenocarcinoma Gleason 4
Jul 2012 7.27 PSA (5 weeks after biopsy - prostate must still be healing)
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