Cryotherapy

[wally198562]

Seeing Dr. Polascik on the 3rd to schedule cryotherapy. I was going to do HIFU with Dr. Rotherberg but he's really new and has only done about 70 procedures, whereas Dr. Polascik has done thousands. Does anyone have any info on cryotherapy? Stats....39 Years old, Gleason 3+4 with last PSA of 6.28 back in July. Tumor is 11mm. Dr. wants to do RALP but, ive only seen maybe 1 out of 20 people have a good story about RALP, even years down the road. My thought is, if cryotherapy fixes it, that's a win. If it comes back in 1 or 2 or 10 years, then I'll have it removed. Please advise. Thanks

[Tall_Allen]

I have data, but it's not what you want to hear:

In a whole-gland study of cryoablation (1), 37% had residual cancer in the ablated prostate. In a study of focal cryoablation (2), 23/50 (46%) of patients undergoing re-biopsy were positive for PCa. Baskin et al. (3) reported that neither MRI or PSA were adequate indicators of progression. On biopsy, 10% of patients had residual GS≥7 cancer on the treated side, and 10% had GS≥7 cancer on the untreated side. Aker et al. (4) reported that on biopsy 18 months post-treatment, 35% still had clinically significant prostate cancer (only 46% had no prostate cancer), and that neither MRI nor PSA were good indicators.

(1) sciencedirect.com/science/a...

(2) pmc.ncbi.nlm.nih.gov/articl...

(3) sciencedirect.com/science/a...

(4) onlinelibrary.wiley.com/doi...

Is potency preservation important to you?

Have you talked to an SBRT specialist? Your age should not exclude you.

Salvage Prostatectomy

It is not a simple matter to have salvage prostatectomy after cryo. If you think finding a cryo specialist was difficult, try finding a surgeon who has done a significant number of prostatectomies after cryo -- it will be nearly impossible.

"Overall, pad-free postoperative urinary continence was achieved in 319 (68.3%) patients. A total of 107 (30.5%) preoperatively potent patients continued to have potency at 12 months, either spontaneously or with medical assistance. Two studies [21,23] had 0% potency rates. Meta-analysis revealed an overall continence (Figure 2D) rate estimate of 67% (95% CI: 0.53, 0.78) and potency (Figure 2E) rate estimate of 37% (95% CI: 0.18, 0.62)"

pmc.ncbi.nlm.nih.gov/articl...

"The overall pooled biochemical recurrence rate post-salvage treatment was 26%.The overall pooled rate of urinary incontinence was 20%. The overall pooled rate of erectile dysfunction was 43%."

sciencedirect.com/science/a...

[wally198562 in reply to Tall_Allen]

I had HIFU scheduled but as fate would have it, my doctors wife had her baby 6 weeks early so I went back to Dr. Polascik for a cryotherapy appt as that's the only focal therapy he does. I will look into SBRT but, when I met the radiation oncologist he said he wouldn't nor would I be able to find anyone that would radiate my prostate at 39 because they don't have the data to show what a prostate looks like, 30 years post radiation. I will ask again. Thank you so much.

[Tall_Allen in reply to wally198562]

That is true for any prostate cancer treatment on a 39-year old man. There are no studies for any therapy because PCa is just so rare in a 39 y.o.

But our best data shows no extra cancers after radiation with SBRT:

thegreenjournal.com/article...

For me, the decision devolves around what risks can I live with and what can I not live with. At the age of 57, being single and sexually active, I could not live with the risk of loss of potency and incontinence. But that is me - you might feel differently.

[wally198562 in reply to Tall_Allen]

Same for me. 39, not married no kids. I've looked at brachytherapy as well and Duke has a brachytherapy suite. I'm just torn. I just want this gone without the lowest risk of ED and impotentence but Duke seems hell bent on RALP. Thank you so much. I truly appreciate all of your insight

[Tall_Allen in reply to wally198562]

High dose rate brachytherapy has the same excellent results on potency preservation as SBRT, so if you know an experienced practitioner, it has excellent outcomes.

Duke usually has excellent doctors. Bridget Koontz used to be there, but I think she is now at Advent Health in Orlando.

I think the burden unfortunately will fall on you to convince any doctor. Treating a 39 y.o. man is so unusual it is outside of the comfort zone of any doctor you will talk to.

A very convincing thing to say to the doctor is "I would like to engage in 'shared decision making' with you [use those exact words -- it will get his attention]. Please understand that I acknowledge that a prostatectomy will probably be curative, However, maintaining my potency is as important to me as a cure. The risk of ED from a prostatectomy is just unacceptable to me."

After the RO tells you that we don't have any data about what the long-term effect of radiation on the prostate and surrounding tissues will be, say, "Thank you. I understand that there is a risk that in 20 years there may be secondary cancers, and no one knows what the risk is. But understand that the next 20 years are among the most important for me sexually, and I am willing to risk dealing with a secondary cancer then, if I can have a better chance of maintaining potency now." It may be useful to have emailed the following link beforehand:

thegreenjournal.com/article...

Also let the RO know: " Please understand that prostatectomy is off the table for me. If you refuse to treat me, I will pursue some kind of focal thermal ablation, like cryo or HIFU, that has a much worse record of success than radiation, and will probably need salvage therapy."

Don't be afraid to show emotion. Most doctors are driven by compassion, and patient choice. They just want to make sure you fully understand the risk. Repeating what they tell you is important.

[wally198562 in reply to Tall_Allen]

Mr. Tall or Mr. Allen, thank you so much for your insight. I think you have me convinced on what I need to discuss with my Doctor and get this started. I'm going to discuss SBRT and Brachytherapy with my Doctor and outline my concerns with other treatments. I also don't mind being the first below 40 to get radiated. Seems like it would be beneficial down the road to collect data on me, since I am such and outlier. Maybe I can convince them that way.

[BettyandBob in reply to Tall_Allen]

Tall_Allen provides a wealth of helpful information and insights for us. The example today of using the exact words to when discussing options with your doc is invaluable. At 69 now, I am cured, but it sure would have been nice to have had T_A’s counsel two years ago. This forum is an excellent resource and I’m glad to be included in this community.

[Don717 in reply to wally198562]

You already said you don't want RP? So that's one down. So pick some form of RT and get the ball rolling. I would be careful with all of these "stats" of X vs Y so you just don't think that ANY treatment will put you back to "pre-cancer" status. I know sometimes the mind paints a picture different than what was actually seen. I know that happens to me in bars concerning women!! Good luck to ya...just remember whatever you pick you are young enough to kick the can down the road and perhaps enter a time when secondary treatment options are even better!!

[wally198562 in reply to Don717]

You said it best my friend. The RT should make me cancer free long term or forever based on the data. However, if I get a reoccurrence or secondary cancer in 5 to 10 years, one would assume treatment options would be even better by then.

[Mgtd in reply to Don717]

Like your “bar” analogy. Here is a postive example.

Some 58 years ago I was attending a “shipping out” gathering for my best friend on his way to Vietnam. Had to much to drink and I was sitting on the floor drunk and incoherent and the nicest pair of white pants walked by. So I did what any red blooded 21 would do. I reach up and … Well you get the idea.

We will be married 56 years and I am still paying for that grab!

[Don717 in reply to Mgtd]

Ha! Sometimes it works out! 56 years is fantastic! Wife and I are working on 38 years come this October....best years of my life without question.

[Mgtd in reply to Don717]

Congrats on the long run.

Yeah! That story of “How did you meet Nonni? has entered the family lore and will probably be there after we are gone.

The follow up to that is just as amazing. I tried to apologize when I ran into her on campus. Needless to say she wanted no part of it. No doubt she thought I was a total jerk.

Fast forward 4 or 5 months and my fraternity brother came down with appendicitis and he asked me to substitute for him taking this gal to her annual formal sorority ball. I agreed.

Yep it was Miss White Pants. You should have seen the look on her face when she came down the stairs and saw I was her blind substitute date. I was there to pick her up. It was priceless. After a chilly start to the evening we had a good time and the rest is history well almost.

Well I might as well finish this story. She had 6 months to go at the University and I was just entering flight training. The invitations were sent out, the church and catering etc were all scheduled. Only problem was my commanding officer refused to allow me to go home to get married.

So we cancelled the wedding and she wrote me a Dear John letter after a short visit to attend my graduation from flight school. Closing line to that letter was classic. “ Sorry I am not going to play second class to flying or the military”.

Obviously we patched things up some months latter while I was going through combat crew transition training and we had a 30 day honeymoon before my departure to Vietnam. When I returned we packed our stuff in our new Camero and off we went on our married life. Best thing we ever did was moving away from family. Just the two of us.

[Don717 in reply to Mgtd]

ha! That's excellent! Like it was meant to be. Wife and I had the much the same experience. Went to the same school but our circles never crossed. I went to college, she landed a great job, got married. They divorced after 7 years after it was determined she couldn't get pregnant. Stress from all the specialists she was seeing apparently drove them apart. Anyway we were introduced by a mutual friend having known each other from high school. Perfect woman to date as far as I was concerned. I had no goal of getting married and me having kids just wasn't a thought. She made it abundantly clear she was done with trying to have kids and just wanted to live life. So we "fit" together nicely. 6 months later she was pregnant! It was destiny I guess...lol. THANKS for your service! I had a lot of cousins that went to Vietnam. Fortunately they all returned after their service.

[Mgtd in reply to Don717]

Boy this gets more interesting. We were trying to start having kids and it was not working so we started the adoption process.

That Christmas we were at squadron Christmas party and we were talking with Dean and his wife and Pat mentioned we were considering adoption. Well the next Monday Dean and I were on the flying schedule and after our mission brief and weather brief, he casually mentioned their 16 year old niece was coming there to have a baby. Maybe we might consider adopting her child.

Mentioned it to Pat and long story short we agreed to adopt the child. In those days you had no idea of the sex until it was born. So Pat got busy preparing a nursery.

Pat was very athletic and really watched her weight, etc. Turns out she became pregnant and because she keep herself in such great shape she did not show or experience any symptoms. We still adopted Joe, Jr and had William 3 months apart. Needless to say after that life changing experience we did not have anymore.

Funny how life works out.

Enjoyed sharing our stories.

[Mgtd in reply to Don717]

Just one more thing. I noticed the car in your write up so I went to your bio. We share a similar hobby. Over the years I restored old British roadsters. I have now transitioned to more modern ones - BMW and Mercedes.

My son Bill and I as a hobby work as pit crew for Jags and old British Minis. Really small world.

[PTvsPC]

I had no idea that SBRT could preserve potency. It hasn't been explained in those terms to me in my RO consultations/discussions... one at Kaiser and another by my uro, who is a surgeon. Reading all these comments spurred me to read up on it on the UCLA and City of Hope sites in addition to reading the studies TA posted.

The RO at Kaiser told me that SBRT has a higher risk of side effects, but that doesn't jibe with what I've been researching or what TA said.

It's essential to get the facts about this stuff before deciding. Sometimes doctors don't take a given patient's unique situation into account when explaining treatments.

[T911]

I can't post any studies or articles right now but I do know that the majority of proton gantry time at the cancer center where I was treated was reserved for very, very young cancer patients. Even had a pediatric inspired waiting area. I asked the doctor about it and he said they expected their patients to live forty to sixty plus years after treatment and proton therapy would provide the least amount of secondary cancers down the road. Prostate wise treatment is considered equal but not superior to other EBRT therapy's. Doctors would definitely work with younger patients

[wally198562 in reply to T911]

So inquiring about EBRT or SBRT should be the way for me to go? Is that what you're saying?

[T911 in reply to wally198562]

I'm saying to take a look at Proton therapy.

[petabyte in reply to T911]

There are some arguments that proton therapy may reduce the risk of secondary cancers although the authors are probably a little biased

The lower integral dose of proton therapy may also reduce the risk of developing a second cancer when compared with photon-based radiation therapy

pmc.ncbi.nlm.nih.gov/articl...

This is interesting as well.

pure.rug.nl/ws/portalfiles/...

[conbio in reply to wally198562]

As in everything, I'd do some research. From what I've read Proton Therapy does no better that EBRT and Brachy and SBRT has a better long term outcome. Proton was 1st developed for brain cancers in children. It's a very expensive machine. So you can't have that thing sitting around unused and oncologists started looking for other applications and have branched out into prostate cancer. EBRT has come a long way and is much more precise than it used to be. And with SBRT and Brachy they can really dial in the dose field.

When I was asking around about proton 2 radiation oncologists said they had seen more rectal bleeding as a side effect from proton than EBRT. Good luck, you have options.

[tarhoosier]

Allen doing the work on this site and recognizing the patient for whom his work can be meaningful.

Modern radiotherapy can be extraordinarily precise. Shaping and modulating the treatment areas to an extent hard to describe. Radio-surgery is another way to think of it. My way is to consider it magic (waves fingers in magic motion).

[wally198562 in reply to tarhoosier]

Would that be HIFU? Is that what you're referring to?

[fast_eddie in reply to wally198562]

No, sounds like conventional ionizing radiation, not the thermal radiation that HIFU provides.

[tarhoosier]

Brachy therapy and External beam radiation are two forms of ionizing radiation using electron based energy to damage and, eventually, kill the tumor cells. HIFU uses sound waves to destroy tissue. HIFU is not approved for treatment of prostate CANCER. It is FDA approved for ablation (damage/reduction) of prostate tissue not cancer specifically.

[petabyte]

I would also suggest investigating proton as mentioned by others (if you have a center in your area).

If proton is not your choice then I suggest looking for a center with an MR Linac. These are a little more precise and can reduce radiation to other organs.

[fast_eddie]

I had full gland HIFU ablation surgery 8 years ago with a surgeon based in Santa Rosa California. I was 66 at the time. I am almost 75 now and doing fine. HIFU provides realtime feedback on position within the prostate as well as temperature as the tissue is being ablated. I have no experience with Cryo but I do have an opinion. I think it is a dull instrument compared to HIFU. How do they manage exactly what tissue is being frozen? They do have a scheme to prevent the urethra from being damaged. My HIFU surgeon was very experienced, having done these surgeries out of the country prior to FDA approval here in this country. He was involved in that approval process. Yes, experience does matter.