Cancer is back after Cyber Knife

Vic, I’m not generally an optimist regarding cancer and that’s why I chose early treatment rather than AS. I’m glad you’re taking a very proactive approach regarding your testing to date. I also recall my panic during my bounce’s even when the Cleveland Clinic team kept assuring me that it was most likely a bounce and extended my 3 month PSA schedule to six months rather doing a biopsy. I hope the review of your post treatment slides from Epstein provides some good news. I second JNF’s recommendation to continue researching HDR options since the cohort of guys having recurrence following SBRT is so small. All of my followup with Cleveland Clinic (Dr. Tendulkar) has been easily done virtually and that maybe another option. I’m a strong supporter of seeking out the very best for treatment.

JNF said...
Good update Vic. I still advise you to check in with Alvaro Martinez MD in Detroit regarding HDR. He is the leader. What would it hurt to have another 20 minute call? Will be interesting to see a proton specific assessment. Have you called your insurance/Medicare to see about reimbursement? Could be tricky.

Hey JNF. After being turned down for HDR by Dr. McChord and referred to Emory Medical Center for proton therapy I relayed that to my RO. His comment was that proton therapy is viable but he still believes that HDR is a better alternative and would deliver less radiation to bladder, rectum and hips. Interesting take. I will call Dr. Martinez on Monday.

bump

Oh ok I thought it was a brand.

I'll look into it just so I can research the actual brand.

Love to Google stuff.

Glen

Vic Hardy said...
Hey JNF. After being turned down for HDR by Dr. McChord and referred to Emory Medical Center for proton therapy I relayed that to my RO. His comment was that proton therapy is viable but he still believes that HDR is a better alternative and would deliver less radiation to bladder, rectum and hips. Interesting take. I will call Dr. Martinez on Monday.

It sure makes sense that you would want to put the radiation right where the cancer is, and HDR does exactly that. Puts those isotopes right into the lesion. Physics 101.

Proton therapy still dumps energy into the tissue on its way into the prostate, while photon therapy dumps it going in and out.

Yes Seimens. The search sidetracked me and I found out about heavy ion acceleration machine and it holds promise for certain types of cancer.
They use carbon ions and other heavy ions.
Seems that science is forever marching on ward.

Glen

Paxton said...
Vic - How do you feel about all this? Your PSA just could be bouncing around (or maybe not?), as you've noted. As it is still rather low right now, how do your docs feel about waiting one more test cycle before jumping back into the treatment fracas?

I say this because of two general thoughts:

1. Your PSA still doesn't fit the Phoenix definition of BCR, which IIRC, is nadir +2.0. Yes, it does have that pesky "two consecutive increases" but the differences aren't monumental.

2. My own experience was that my PSA readings were quite "noisy" and rattled around for quite a while. . . then at 5 1/2 years I finally hit a new nadir below 0.5. Yours may just be a noisier version of mine, and it could go back onto a downward trend next test.

Salvage treatments may have greater side effects than primary treatment, so I just wanted to be sure you were really ready to move ahead before taking that particular risk.

Hey Paxton,

My RO thought it reasonable to wait and take another PSA reading in three months. My Urologist I think is nervous but I'm waiting. So I had a PSA test on Monday, 4 weeks after my biopsy and it was 1.09 (where my last one that started all this was 1.46). I realize that it's just one data point but it's certainly more encouraging than if it had been 2.0. Then I had a different lab take a blood draw an hour later on the same day. It came back at 1.4. And yesterday another lab drew blood and it came back at 1.2. I'm sort of a nerd for data and I just paid out of pocket for the other two tests. That two labs doing an analysis from two draws an hour apart vary by almost 30% is probably worth a separate thread...

But as far as waiting because it's below 2.0 or so, I'm still faced with the biopsy results that shows a core at 80% volume. I have to assume that it's real adenocarcinoma per the report rather than the possibility that it's just cancer cells still in the process of dying from the SBRT radiation. Maybe if the PSA stays at this level or starts to drop I can afford to wait longer but I feel like I'm kinda rolling the dice. Sometimes I think I shouldn't have had the biopsy as a lot of post RT men don't, but data is data.

I had a video meeting with a Urologist who does cryotherapy yesterday. We were short on time so I didn't get the kind of feedback I wanted on what he sees for SE. He didn't talk about incontinence at all but seemed to be saying that the nerves on the tumor side that control erections would be compromised, but that the other side would still work, whatever that means. I think in an earlier post JNF called cryo 'dicey' and I'm starting to agree. The only thing going for it is that there's no radiation but definitely SE as far as I can see/research. I'll probably move cryo to the bottom of my list.

Next week I have a video meeting with Dr. Martinez (HBR) in Detroit and an in-person at Emory Proton in Atlanta. I still haven't crossed IRE/NanoKnife focused electrical therapy off of my list but have not been able to find a reputable, experienced doc who does this. I was set up to talk with Dr. Jon Coleman at Sloan NYC but they have this goofy rule that they cannot talk to an out of state patient over the phone if they don't have some sort of agreement with that state. They want to see me in person but I don't want to just pop into NYC if I don't have some confidence that they would do the procedure on me and of course if it's covered by Medicare (probably is not), so I'd have to pay somewhere between $10K and $40K out of pocket (it is NY so probably the higher amount!). More research is needed!

Vic, have you heard back from Epstein on a read of the new biopsy slides?

I am biased against cryotherapy, first, because it is so little used that I can’t remember anyone in 10 years on the forum that has used it and, second, based on several discussions with my urologist. He repeatedly has explained that is is inherently with more significant side effects, particularly urinary. He said the one thing that is guaranteed is incontinence. To me that is a bit strong, but he is excellent and never nuanced. I checked in with him regarding this situation. He is in a premier practice of about 75 urologists and few even mention they use it for PCA. He sticks with the big numbers and evidence and stays with surgery and radiation. He also has yet to have a local recurrence with a man that used radiation as the primary treatment. This is primarily what he does with intermediate and advanced men, usually HDR and IMRT as with me. He suggested to investigate, but not to freak out

My first reaction to the start of this thread was that the docs were moving too fast. You weren’t close to the recurrence definition and within the sweet spot for a traditional bounce. You have new readings that may indicate a flattening or maybe even reversion in the trend. As you say one data point isn’t enough and I agree. You are doing research diligently and that requires time. I would definitely test monthly. And as for the biopsy showing PCa, that doesn’t necessarily confirm that it is viable and growing. It may be cancer that just hasn’t died yet as it takes years for much of the cancer to truly die after radiation (apoptosis). We all know that. As long as it is damaged enough to not reproduce then it still being present is not necessarily a problem.

I am looking forward to learning about your meeting with Dr. Martinez.

JNF said...
... And as for the biopsy showing PCa, that doesn’t necessarily confirm that it is viable and growing. It may be cancer that just hasn’t died yet as it takes years for much of the cancer to truly die after radiation (apoptosis). We all know that. As long as it is damaged enough to not reproduce then it still being present is not necessarily a problem. ....

In light of the classification cited in one of the paper:

"Prostate biopsies after radiotherapy naturally fall into four categories: negative, atypical acini suspicious but not diagnostic of carcinoma, adenocarcinoma with treatment effect and adenocarcinoma without treatment effect,"

I think that tissue that shows architecture typical of "adenocarcinoma without treatment effect" rather than "adenocarcinoma with treatment effect" is most likely viable when we're talking about two years, as opposed to, say, two month, post-treatment.

Djin

JNF,

the Epstein report should be here shortly. I have a follow-up with my urologist who requested it for me next Tue and I'd expect to see it then. I am also very interested to see what they found. After my 2nd biopsy and before the SBRT I had Epstein do a 2nd opinion and he actually upgraded 3 of 6 cores from 3+3 to 3+4! I just read on another thread that cancer from radiation can take 3 to 5 years to completely die. I did not know that, so his take should be interesting, although the local pathologist would not grade what he saw.

Thanks for checking in with your URO for my situation. I was actually going to ask this forum if anybody had opted for cryotherapy. I did a search and found nothing.

I'll be talking with Dr. Martinez on Wed.

Paxton said...
. . . and just one more re-statement of my only observation set, my own.

I am now 66 months out from my last CyberKnife treatment, and this most recent PSA reading was a new nadir. The previous 3 or 4 readings were at a higher plateau.

As for all those recent data "points" -- don't forget the advice we all received about PSA readings. We try to get them by the same assay and by the same lab due to potential for variability. I'd be less sure about those recent ones if I didn't have historical data from those same labs. All of my PSA tests were drawn by the same office and sent to the same lab for processing.

When I had my final meeting with my RO, we discussed mid-to late-term recurrence after CyberKnife. She said that she has had recurrences, but that those were all outside the prostate bed. Does your RO have any historical info on biopsy results post treatment? I hear they are very tough to read.

Do I disagree with your looking into this? Not in the slightest. I would, as others opined, vote to learn, test, and take just a bit more time prior to committing to more treatment.

Hey Paxton,

yeah, the different lab accuracy is puzzling but I guess real. As I go I'll stay with the hospital lab that I've used for three years and use one of the other labs (maybe the one that was only 10% different and not 30%) as an additional tracker to compare against. It only costs $25.

My RO didn't mention the biopsy except to say it could be a bounce and it could be still-dying cells. I expect my Epstein 2nd opinion from the slides to arrive any day now.

I think they just took a total of 6 cores, 3 on each side, which is surprising. I would expect 6 extractions on each side. Maybe it was (6 designated total areas and 2 from each?) . Quite often, an extraction piece breaks. So there can be X extractions but more than x results.

Yes, it means 80% of each extraction.

Mel