Prostate condition after Proton/Photon/Brachytherapy?

After trying to find out more about the side-effects of Proton, Photon, or Brachytherapy and not finding conclusive evidence that one is better or worse, I decided to see what the impact is on the prostate (bottom-up approach).

Basically, all three treatments damage the DNA of both the tumor and healthy cells. There are claims that the healthy prostate cells will recover, but I have not been able to find anyone in private practice, at different hospitals, or NCI.gov to confirm that. The best response I received was : "It depends". Also, no one was able to confirm the impact on the neurovascular bundles (NVB) and if they would recover.

I talked with a REALLY NICE and SMART radiation oncologist the other day. He mentioned that doctors are inherently conservative in their treatment and generally want to treat the entire prostate. So primarily, they want to eradicate the cancer. Period. They look at the side effects, but not at the pathological impact on the prostate. Even if only one lobe of the prostate has a tumor, no one can predict if a tumor is multi-focal or bi-lobal. (My research indicates that prostate cancer is roughly 25-30% multi-focal and 20% bi-lobal.) I mentioned that I feel time is on my side, so if I can just treat the tumor with minimal side-effects and gain 5-10 years, a better treatment, like DNA/RNA gene re-sequencing, might be on the horizon.

The radiation oncologist said that overall treatment duration causes the prostate to move, especially from the bladder or colon. The longer the treatment time, the more the bladder or colon can fill and change the position of the prostate, which he needs to consider in his treatment plan. He also mentioned that there are side effects like ED in Tomotherapy and that LDR Brachytherapy has less ED side-effects, but may not cure the cancer as well as TomoTherapy. As for Proton therapy, in the 90s supposedly after every proton treatment session back then the balloon was bloody (CAN ANYONE CONFIRM IF THIS IS STILL TRUE?). So there are apparently issues not being mentioned in the many medical reports, publications, and clinical trials I have read so far.

Lastly, with respect to ED, he broke it down into different categories:
1. Unable to have an erection sufficient for penetration
2. Unable to ejaculate (dry orgasm)
3. Unable to orgasm

So having the NVB in good working order seemed like a priorty to me after this part of the conversation.

Basically, I have a very, very early tumor on the left lobe of the prostate the size of a raisin about 5mm next to the neurovascular bundle (NVB). The other lobe is clean. Focal therapy (I looked at all of them) on one lobe has side-effects about as bad as when treating the entire prostate. Typically, focal therapy treats one lobe (more or less) which also affects one (out of two) NVB. The numbers I found in the research reports are not consistent and a lot depends on the individual: the lower the PSA, the less side effects. However, many clinical trials do not separate the side effects down to that level.

I asked why is it necessary to have a 10 mm margin in focal therapy if Proton (Conformal and IMPT) and Photon (IMRT/RapidArc/TomoTherapy) are accurate down to 1mm? He could not answer this question as he specializes in TomoTherapy and always treats the entire prostate. I also said that when brain cancer is treated with Proton/Photon therapy, it just would make no sense to use a 10mm margin. The bottom line is that Focal Proton Therapy down to the 1mm level is not going to happen anytime soon.

If anyone has direct experience with Proton Therapy, TomoTherapy or LDR Brachytherapy and could detail the side-effects, incl. recovery time, grade and severity, I'd really appreciate it.

I hope I wasn't too disconnected in my description above. If something is unclear, please let me know.

In the meantime, I am still trying to find the best treatment for me - soon,

CowboySailor
===================================
Currently PSA 6.9 - Gleason 4 + 3 = 7
Waiting is no longer an option...

Boogee,

I have attached my stats - needed to update them first. My PCa is intermediate risk, but I need to do something before the end of the year. 'Active surveillance' or waiting for six months is not a viable option. Working through the insurance maze right now and could be ready for treatment early next month.

What I meant by "having time" is that if I could find a focal therapy or a whole prostate treatment that minimized side-effects, but may come back in 5 or 10 years with secondary cancers, then I'd go for that as by then new treatments would be available. It would give me another 5 to 10 years with a good quality of life. That is why I'd like those who have already been treated with Proton (Conformal and IMPT), Photon (IMRT/RapidArc/TomoTherapy), or LDR Brachytherapy to tell me what they experienced or at least mention what other patients experienced.

The gotcha is that it is hard to find a PCa treatment as in the medical community they understand the PCa options, but recommend their specialty. That makes it hard for us PCa patients to make a decision. Which is why I am trying to understand how the treatment affects the prostate and NVB.

I hope your husband is OK with his decision for RP and understood what it meant. Having an understanding wife makes a big difference. Glad his PSA went down.

Good luck to you both, too,

BB1100
==============================================================
Age 62 - 'Spring Chicken' as my dad calls it
Oct 2008 2.8 PSA
Jan 2011 6.1 PSA
May 2011 5.3 PSA
Sep 2011 5.6 PSA
36.0 PCA3+
Jan 2012 6.9 PSA
14.8 PCA3+
May 2012 6.9 PSA
19.4 PCA3+
Jun 2012 Biopsy: 1 core out of 7 had 25% adenocarcinoma Gleason 4
Gleason = 4 + 3 = 7 - Clinical Stage T2a
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
Gleason = 4 + 3 = 7
Jul 2012 7.27 PSA (5 weeks after biopsy)

Dear Cowboy:

Welcome to HW...sorry you have to be here but I'm sure you will find lots of info as well as caring folks here.

In specific answer to your question about experience with LDR brachytherapy, please feel free to copy and paste the link at the bottom of my signature to get a fairly detailed first-person journey of my brachytherapy experience.

Beyond that, if you'll permit, I will make a few other observations about the info you provided:

1.  You described your cancer as "very, very early".  Honestly, with a Gleason 7 you have intermediate stage cancer.  That doesn't mean it's terrible (I was a G7 as well) but - especially with the 4 as predominate - this is intermediate stage cancer.

2.  You had a very small sample size with your biopsy.  The standard sample size for most urologists is 12.  Mine was 16.  Insurance may have only covered 7 samples but, with fewer samples, there is less info about your cancer.  For example, you say that "the other lobe is clean".  That may or may not be true.  What is true is that, with only a few samples, the biopsy did not find cancer in the other lobe -- that does not mean it is not there.

3. We have a couple of posters on this site you have used focal therapy -- Ziggy is probably our resident expert.  Hopefully he will weigh in.  When and if he does he will tell you that this procedure will require a saturation biopsy to better determine the location of the cancer so that it can be properly treated.

4.  The placement of the seeds, should you choose brachytherapy, will likely allow radiation to penetrate beyond the wall of the capsule therefore treating any cancer that may have slightly escaped.

5.  Frequently with a G7, a RO may recommend brachy + IMRT.  But...with only 1 core and 20% brachy alone may be recommended.  Personally I would feel better doing brachy with 1/12 or 1/16 rather than 1/7.

Hope this is helpful.  Feel free to ask any more questions and please keep us up to date.

Jim

As Tud pointed out I'm sort of the unofficial TFT spokesman here. I was dx in 11/2007 and i had the all the normal panic and anxiety PCa initially brings on. I was first leaning towards radical surgery then later brachytherapy until a local newsman who had done a series on his Pca put it all together in a special broadcast 12/2007. Talk about good timing. Well below is a link to that broadcast it's in 3 parts about 9 minutes long each. It's a very good primer on PCa still and all the treatment options. The newsman picked TFT as I did and I had the same doctor Al Barqawi who is the director of research at CU hospital, Yes the same university hospital that mass killer James Holmes attended. The video will go more into TFT too along with specific links on the site below such as mapping biopsies. Bottom line my only side effect is a 60% loss of ejaculant. My worse Pca experience was a total of 5 days with a catheter.

http://3dprostate.com/

BB,

I had a combo of BT and IGRT (25 sessions). During treatment the SEs were the usual that you will hear about on HW...burning, urgency and frequency and some fatigue about half way through the IGRT sessions. These have now all gone away. As to ED, I still am able to have erections but have no semen/ejaculate at orgasm. As you can see in my signature below, my PSA has been at 0.1 since treatment. I may still experience a "bounce" in PSA but my uro tells me that I about 30% of BT patients don't.

BT/IGRT turned out to be the right choice for me. Given the research you have done and are doing, your ultimate decision will be the right one for you. Best wishes,

Joe

Skeeter,

Thanks for your feedback and for pointing out your recent postings during proton treatment, which I will review shortly - especially focused on the side-effects. I am glad that things have changed for the better and there is no longer the worry about "bloody balloons". The urinary side effects you mentioned are also more/less typical, but as you pointed out, are a temporary issue. I did read clinical trials reports and that it may take up to one year to solve rectal bleeding. I realize that there is a potential for a drop in physical energy during radiation treatment after 2-4 weeks, but it usually just takes some time to get over it as it is not a long lasting effect.

As for the margins, did you have a multi-parametric MRI to identify the exact location of the tumor(s)? Based on what I understand, the doctors want to know where the tumor is, but primarily they want to make sure that none have not escaped the prostate. Once they know that, they treat the entire prostate. I am still trying to understand the "intensity modulation" aspect of treatment as the reports and feedback tell me that the entire prostate is treated with the same dosage. Obviously to me, I must be missing something.

However, if they doctors do know where the tumor is, it makes no sense to have a 10mm margin around the prostate as that also treats the NVB. Overall, the larger the margins, the higher the probability of side effects. Basically, if one has a tumor anywhere in the body, but especially in the brain, only the tumor and a small margin is removed. Don't know why the prostate is treated differently in that respect. It could be that due to the cost and side-effects of the treatment, insurance companies don't want to be stuck with having to pay again in the case of secondary cancers and patients don't want a repeat of the same or having to decide on another treatment.

From a doctor's perspective and them being conservative, I am sure they want to get it all the first time as they are focused on that, not that much on the side effects based on my understanding. Obviously, some doctors pay more attention to that than others, but I have bot come across them.

Let me read your other postings. Thank you for being available to answer more detailed questions.

BB1100 (CowboySailor)

Ziggy,

Thanks for your posting. I have heard good things about Dr. Al Barqawi. Is he focused only on TFT, or does he also have radiation and brachytherapy experience? Did the Anschutz Center use a multi-parametric MRI to confirm your biopsies? Did they treat the entire lobe or just part of it?

Someone mentioned that it is hard for cryotherapy and brachytherapy to create a specific region of their impact as is the case with proton and photon radiation treatment. When TFT freezes with a double thaw cycle, I would have thought that it makes the prostate 'mush' (highly scientific description). Since the prostate is a muscle, that should have had a much worse impact on the side effects than what you encountered. I'll spend time reviewing the URL you posted. Thanks.

BB1100 (CowboySailor)

BB1100 said...
Tudpock, GOP, Ziggy, JohnT, JoeFL, et al,

Thanks for your warm welcome. You are correct, this is a club nobody wants to join. But I feel better to learn from you than to have to learn your lessons myself again all over again.

Apparently, I left some topics unclear and want to clarify them. I had learned previously from others that having a biopsy without image guidance is sort of like shooting in the dark. Some have had a biopsy every year for 10 years and increasing PSA values, but yet no tumor was found. Then they had a color Doppler Ultrasound done and the tumor was immediately visible.

So, I followed their recommendation and had a color Doppler Ultrasound done: The doctor saw three areas with increased blood flow and asked if I was ready to have a biopsy done as we had agreed that we'd only do a color Doppler Ultrasound and a biopsy would be the next step I wanted to avoid. He took 3 samples from there - all negative. Then he asked if we could also take samples from areas where he had seen typical tumors in the past on a number of patients at very specific areas. (Note: no blood flow was visible on the color Doppler Ultrasound.) So he took 4 more samples on both lobes and one was positive on the left lobe. Because there was no visible blood flow, that is why I said it was an early stage cancer and yes, Gleason 4 is indeed intermediate grade cancer. Basically, I have about 6 months to make a treatment decision as there is no evidence that the cancer had escaped the prostate as it was still so small to not even have visible blood flow.

I watched the 3d mapping biopsy - thanks for pointing it out. It reminded me of an interstitial LDR Brachytherapy video I had watched. (Just makes me shiver!) This gets back to my comment to Skeeter: once the doctors know exactly where the tumor is, why do they treat the entire prostate with the same treatment. I do know that Dr. David Crawford in Denver uses Targeted Focal Therapy where they treat - using cryotherapy - the lobe which has the tumor. But the side effects are the same or worse than if I had gone for Proton Therapy, TomoTherapy, or Brachytherapy for the entire gland. I must be missing something...

While the biopsy sample size is important, it is imperative that the tumor is found. Based on my reading so far, too many of us have endured too much during biopsy while the doctor did NOT find the tumor. As someone once pointed out to me, it is 'Not the arrow, but the Indian' who is important. So I went and spent the $$$ money to get the best doctor based on the recommendation I had found. And he found the tumor.

I still don't understand why there is a tumor as there is no blood flow. By definition, if there is increased blood flow, it could be cancer. Also, my PCA3+ values are below the cut-off of 32, so I should not have a tumor - but there it is, 5mm next to the NVB.

A biopsy helps determine if one has a tumor. But since I know I have Gleason 4 + 3 = 7 and based on conversations I had, it would be best to verify that I only have that one tumor and nowhere else. The best way to check for that is using a multi-parametric MRI (Thanks for confirming that, JohnT). Again, it is imperative to have the right doctor who is critical to read the image correctly. So that is my next step.

But finding the right treatment and understanding the side effects is what I am still fumbling with. Getting feedback from someone who has undergone Proton Therapy, TomoTherapy, or Brachytherapy and mentions their side-effects can add significant reality to all the papers, reports, and books I have read so far. It appears that the other worry down the road are secondary cancers. But maybe there has been significant progress made by then. So far, Proton Therapy seems to have an edge there.

Thanks for all your insights, comments, and letting me know what your thinking process was when you were in my shoes. I am glad that your PSA values are low and you are glad you made the decision you made. I am hoping to follow in your shoes.

Hans

I don't know where you received your information on side effects of TFT at UC -Denver. I for one had it done and my lone side effect is a 60% loss of ejaculant. No incontinence no ED. I was sore for two weeks but played golf 2 days later. My worse PCa experience after the initial biopsy anxiety was just 5 days with a catheter. I've said for awhile I and the other TFT guy are the most successfully treated men here. My life really has continued as if I never had Pca, except for my annual urologist appointment. It was my understanding that Dr Barqawi does the TFT for most if not all of Dr Crawfords patients. The original video I posted had Dr Crawford as the reporters doctor but Dr Barqawi did the mapping biopsy on him and his TFT. The entire gland is not effected thus the targeting where only a small section is frozen. If the cancer is too wide spread or aggressive the patient will be disqualified by the mapping biopsy. Although mine and most TFTs have used cryosurgery they have also experimented using a laser for TFT too.

Hans,
you certantly are doing the research and taking all the correct steps to increase the probability of a favorable outcome. The low PCA3 is a good sign and may indicate a less aggressive cancer even if it is classified a G7. From what you posted there is a very high probability that the cancer is contained and you should do very well regardless of the treatment you eventually choose.
I would not worry about secondary cancers caused by radiation. Recent studies have shown no increase for brachytherapy and less than a 1% for external radiation.

JohnT,

It has been a long road to get to where I am and this is only one third of the way, if that. If my PSA had stayed at 5.3, I would not have gone for a biopsy. However, at 6.9, I felt I had to get at least a baseline. Finding the tumor was definitely not part of the plan. As I think John Lennon said: "Reality is what happens while you are busy making other plans".

Next I need to get my health insurance straightened out, decide on a treatment that finishes before the end of the year - and then recover from that. Obviously, I am hoping I'll have the same favorable results as you all.

With any luck, I'll have enough feedback and learned a bit more to help me finalize my decision to move things forward soon. Sure wish I was over the hump.

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 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)

"This gets back to my comment to Skeeter: once the doctors know exactly where the tumor is, why do they treat the entire prostate with the same treatment. "

BB,
This was one of the major reasons that a mapping biopsy was done. Once the tumors are located, the seeds are precisely placed in the areas where they are needed most.
As to multiple treatments, I have what I think is an interesting story. I went to Schifler Cancer Center because I wanted to be treated by Dr. Gregory Merrick. After the mapping biopsy, Dr. Merrick told me that permanent seed brachy would be all that I needed. However, since Wheeling is a research hospital, one must agree to be part of that research in order to be treated there. In my case, that meant that a computer would decide if I were to get brachy only, or brachy and 40 treatments of beam radiation. I was a little ruffled. If brachy was all I needed, I sure as hell didn't want to go through the beam radiation and risk even more side effects. Dr. Merrick told me that he had many patients who insisted on the beam radiation also just to 'be sure'. At any rate, he said, I would know before I left what the 'computer' decided. It was a 50/50 proposition. He came back into the room moments later and told me that the 'computer' results said that I could do brachy only. I was relieved and later started to think that there never was a computer. I don't know this for fact, but I strongly suspect that when brachy only will suffice, he feels out the patient to see which way he would want to go and then pretends that a computer did it. That is just my suspicion, but either way, he gets his research data. I could not be happier with the choice I made.
Good luck to you, Man.

BB,

The decision to add IGRT to the BT was an option that my Onco/Rad gave me and I decided to do for two main reasons:

• According to him, it potentially increased the cure rate by another 5%
• More important, the IGRT treated the entire prostate where there might have been "cold spots" from the seeds and also included a few CM around the gland in case some cells might have been in the margins.

He felt I would do fine with the BT alone but I decided to err on the side of caution. Hope that helps.

Joe

 

I had PT and am pleased with the result. I am physically active and that most likely contributed to the positive outcome. I would have been happier if the PSA had continued the dramatic drop of the first three months but was assured that was not uncommon. I have a feeling I would have missed my prostate. With the help of some Viagra (generic) I am please with the way the situation has worked out. None of the horror stories about bloody balloons. The usual urinary problems readily treated with Flomax. For me PT was the best choice. The biggest problems are paying for the procedure (some insurance companies resist) and the treatment centers maybe too far away to make it a practical solution. Good luck and good health.