heading for salvage therapy

[Elkguide]

hello all. Well my last two ( three month) PSA tests were 0.10 and MO. And RO. Recommend somewhat early salvage radiation treatment. A question I would like some input on is should I look into proton therapy over IMRT. I would need to travel to Fred hutch or Salt Lake City as I live in Reno Nv. Just want some of the best treatment with less side affects. Would really appreciate your thoughts

[NanoMRI]

Thoughts - my salvage RT to prostate bed was unsuccessful because my cancer was unknowingly out of the prostate bed.

My RP nadir was 0.05 and I waited until 0.11 for salvage RT. Looking back my treatment was not 'early' although I suspect we were already too late at the time of my RP.

Based on my experience more important than the treatment method is confidence level all the remaining cancer is confined to the treatment field. If I had a do-over but was to do RT I would have multiple imaging methods seeking confidence all my cancer would be radiated.

[Elkguide in reply to NanoMRI]

Thank you Nano MRI

[NanoMRI in reply to Elkguide]

I am camping in Idaho, start of elk bow season. (a pseudo metaphor) As we know, just because we don't see em it does not mean there are not roaming around. Two days ago went fishing mid afternoon at a small lake and there, across from us, was a herd grazing the trees and shoreline. Hoping your treatment does not keep you out of the woods. All the best!

[Channelhomec in reply to NanoMRI]

Was psma scan available in 2019 they did not offer me when I had salvage..

[VictoryPC in reply to NanoMRI]

I know I can drop that .11 to .01 in a week and avoid all that scare stuff as I have for over 10 years but I won't dare say it on here or get attacked. That's why most of the time I stay silent and just read....

[Fortysstyle in reply to NanoMRI]

Nano - I am in the same boat. Reoccurrence. Had RP in June 2021 My last two PSA’s were .1 in the last 3 months. I met with RO yesterday for possible proton but said he would not treat me until he knew where the cancer is and isn’t. But also said PSMA will not find it until at least .2 and then only 45% chance of finding it. I am concerned that waiting might allow it to move beyond the bed if still contained there. What would you do having been down this road? Wait? Thanks.

[NanoMRI in reply to Fortysstyle]

Is that a Carlisle in Roma? Been down that road too and certainly a better road to be on! Having read your bio several times and given careful thought to my reply – I hope this is helpful.

Regarding knowing where all the cancer is, we cannot, so whether we treat sooner or later we are rolling the dice. (A side note – IMO salvage or adjuvant timing studies are nothing more than an analysis of Russian Roulette).

If I had a prior to salvage RT do-over, whether it be to bed or pelvic region, today I would first take several more investigative steps. An easy one is liquid blood biopsy testing. I know there are those (docs and other men) that say no to these at your/our respective stages, but I say to them, you are not facing our dilemma, our challenges. This is my life, not yours. I also feel this way about imaging.

Having traveled to Europe nearly seven years ago for imaging at 0.11 that identified five suspicious lymph nodes, confirmed cancerous by salvage ePLND, I say seek out multiple imaging methods. The evidence I see clearly shows some methods work when others do not. I say give several a try and dismiss the rankings of which are better – the key is to find the one that ‘works’ for your cancer. And I dismiss the thinking that it is too soon. Why give this beast time to grow and spread to achieve certain “successful” PSMA imaging? If we get lucky and whatever flavor shows cancer is beyond RT field, then isn’t this invaluable information?

As I rely on <0.010 post RP as best indicator and dismiss the use of ‘undetectable’, and as I had six cancerous pelvic lymph nodes at 0.13, I would be most uncomfortable letting my PSA rise above 0.1. But then I want to do all I can to defer treating this beast as a chronic illness with ADT, awaiting CR.

All the best!

[Fortysstyle in reply to NanoMRI]

Hi Nano -

Thank you for taking the time to review my PC background and your input. My intent is similar to you in that I plan to stay off ADT therapy for as long as possible. My MO seemed dismissive of liquid biopsies when I asked her. However, I found a lab that will provide do one for cash. If my understanding is correct, the point of a liquid biopsy is to determine if PC can be detected in the blood (before a PSMA can detect) because PC needs to be in the blood to move to distant locations, such as organs. If so, then RT is no longer a practical option for salvage radiation of the prostate bed. Am I correct? Thanks.

[NanoMRI in reply to Fortysstyle]

About that beer?

Yes, I think you are correct. The hematologist who introduced these to me was not dismissive. Being that these are ‘relatively new’ I can understand why doc’s don’t promote them. Maybe they just don’t appreciate the value. Maybe they do not want to have to argue for provider approvals. Maybe they have no economic incentive. Maybe my hematologist was biased by economic incentives and had a quota to meet?

To those docs (and some members within HU) who say no don’t do them, I say this: the one I had last year reported “No reportable tumor-related somatic alterations” – which I consider great encouraging useful information. However, this year’s reported “TP53 R248Q Somatic Alteration” which can be coming from several types of cancer. Upon further investigation and biopsy, mine is metastatic melanoma - which we were not even looking for. This unexpected early detection finding gives me a better chance to fight this new beast.

This statement from Cleveland Clinic is how use and value were explained to me: A liquid biopsy is a blood test that detects cancerous tumors. As a tumor grows, pieces can break off and circulate in your bloodstream. A liquid biopsy can identify those pieces. Liquid biopsies can detect: “Circulating tumor cells (CTCs): A CTC is a cancer cell from the tumor that’s traveling in your bloodstream. Circulating tumor DNA (ctDNA): ctDNA is a DNA fragment from the tumor cell circulating in your blood. DNA contains the genetic code, or instructions, that control a cell’s behavior. CTCs and ctDNA in your blood provide evidence that you have a cancerous tumor. These pieces of your tumor also provide genetic information about the cancer that can help your healthcare provider decide what treatments may work best to treat it. Liquid biopsy is a relatively new test with several potential groundbreaking uses in cancer treatment, with a few U.S. Food and Drug Administration (FDA)-approved uses. Research into its benefits is ongoing”.

[Fortysstyle in reply to NanoMRI]

Thank you. Yes, I spent three weeks in Rome and Greece in May. Had many excellent beers. One of the best being the local beer in Corfu...called Corfu Beer Interestingly, it lacks shelf life-extending additives, making it unsuitable for export. Thus, it has a very clean taste. I noticed that LB is approved by the FDA for several cancers, including prostate cancer.

[NanoMRI in reply to Fortysstyle]

I enjoyed many happy times and good beers in Europe. Yes, LBs are FDA and Medicare approved and yet...... They are part of my testing trifecta to not give this beast time and obscurity; ultrasensitive PSA, LB, and multiple contrast agent imaging.

[Justfor_]

Looked at your bio but not certain if you had SVI or not. If yes, you are staged as high risk and a 20-30% success rate can be the result of salvage RT. If not, your GS 4+3 warrants lower risk so a 50-50% success rate is possible. Success is defined as 5 years without further treatment. Educate yourself regarding late toxicities from irradiation and do your due diligence.

[Elkguide in reply to Justfor_]

Thanks just for. Yes SVI. And on that note. I watched a few videos of a RP and have to tell you the surgeons doing the surgery were not very friendly when removing the seminal vesicle both videos the gland was ruptured

[NanoMRI in reply to Justfor_]

IMO what is misleading about the 'studies' are definitions such as 5 years - not how I measure "success". I was GS 4 + 3 and came out on the wrong side of 50/50.

[Justfor_]

Your negative PSMA is a plus. When proceeding with sRT blindly, there is a 15-20% risk of metastases outside the area to be irradiated even at PSAs lower than 0.2. All in all the highest success rate at optimal conditions is short of 70% (67% if memory serves).

[NanoMRI in reply to Justfor_]

I do not always see negative imaging as a plus. As I share my PSMA at 0.13 was clear while better imaging identified five suspicious pelvic lymph nodes; six confirmed cancerous by ePLND. And there is the matter of contrast agent avidity.

I have no understanding that my rad onc reported my failure - so how accurate are the stats?

[Elkguide]

thanks just for. About now I would take 67%. Thanks again

[Justfor_ in reply to Elkguide]

Edit: This is a response to NanoMRI.

It is a plus in a non negative sense. Please follow my weird logic: A positive detection entails the probability of seen or unseen distant lesions. In such a case no salvage is advisable as its failure is certain in the event of seen distant lesions and highly probable in the unseen one. But, the salvage is decided blindly, so no route for passing through the warning message. The complement of the above, i.e. PSMA yes, detection no, leads to a more positive prospect. It doesn't guarantee success, as in your case, but the odds for such are elevated.

[Elbers123]

My psa was creeping up. Intial consult said salvage radiation to prostate bed only. But I was advised to have a decipher test. Came back at .76.(high risk) My treatment was adjusted to include nodes and short term ADT. This is as per the ssport protocol. The math for freedom from progression at 5 yrs goes from 70% to 87%. Tall Allen led me to study. My RO was totally onboard with the approach.

[Tall_Allen]

There's no data showing that proton has fewer side effects than photons.

[Elkguide in reply to Tall_Allen]

Thanks TALL _ALLEN Just scares me he will be shooting blind and my luck hasn’t been that great lately. Gotta do it though

[Tall_Allen in reply to Elkguide]

They shoot very precisely, not blind. They do imaging as part of a planning study to determine exactly where to place the radiation. They treat the entire prostate bed because that's where the cancer goes after leaving the prostate.

[NanoMRI in reply to Elkguide]

Doc's I have spoken with indeed find the use of "shooting blind" offensive. What they do not appreciate is we do realize they know how to aim, and where to aim, but, none of us can know where all the cancer is. As lay people, mere patients, some of us see this as shooting blind.

I was on the table for 39 sessions - very precise. However, my cancer was already out of the bed, at PSA 0.11, post RP. The precise radiation missed more than it got.

Something I find interesting is that urologists are routinely criticized on multiple grounds, even disparaged. Yet. rad onc's seemingly get a pass when they miss. I declined ADT concurrent with salvage RT because I realized it can mask misses, and for several years. My post RT nadir, done four months after 39th session, was 0.075. We knew we had missed and cancer remained. Follow on monthly testing showed slow steady rise.

[Elkguide in reply to NanoMRI]

I hope and pray for everyone in this terrible situation. So Nano MRI what was the next course of action? (After salvage) Sorry I miss spoke about radiating where they can’t see it. I apologize.

[NanoMRI in reply to Elkguide]

well okay, but no apologies from me as I felt and still feel mislead about the risks/chances for missing. I am headed back to deep woods tomorrow, I will never shoot blind, nor with partial site.

After my unsuccessful salvage RT I went for uncommon in US salvage extended pelvic lymph node surgery with frozen section pathology method. Wish I had done that with RP. Then maybe, if RT was still warranted, it would have been successful.

Yes, all the best to all of us fighting this beast!

[maley2711 in reply to NanoMRI]

Did you have either surgical removal of lymph nodes or pelvic radiation? I would think one or the other would be advised?

[Elkguide in reply to maley2711]

Hello. Yes four lymph node’s removed during Radical Prostatectomy. All negative no positive margins. SVI though

[NanoMRI in reply to maley2711]

Yes, six years ago, salvage extended pelvic lymph node surgery with frozen section pathology method instead of pelvic radiation and/or ADT. Previously I had RP and unsuccessful salvage RT to prostate bed.

[Tall_Allen in reply to NanoMRI]

Some patients and even some doctors who should know better (Eugene Kwon for example) think that imaging can show all the cancer and radiation can be aimed at only where the cancer is. That is absurd. A 5mm tumor, which is the smallest that can be seen by a PET/CT consists of tens of millions of cancer cells. It only takes one cancer cell to start a metastasis, and the prostate sends out millions. That is why radiation has to be targeted to where the cancer cells typically travel to next. Can it miss some? Certainly. It is a matter of probability. It will probably travel to the prostate bed next, so the entire prostate bed must be irradiated.

[NanoMRI in reply to Tall_Allen]

Allen, I do not understand why you have replied directly to me, especially given our prior exchanges. Do you include me as one of the “some patients”? Are you trying to educate or correct me?

I have never thought imaging could identify all of my cancer. My informed patient imaging experiences include two mpMRI following initial diagnosis, Ga68 PSMA PET with Ferrotran nanoparticle MRI following my salvage RT, three additional PSMA PET following my salvage ePLND and just last week a MRCP MRI with pancreatic protocol. The latter is because my recent PSMA PET identified a 20mm lesion on my liver (at a PSA of 0.033). I have an upcoming biopsy to determine whether this is a metastasis or atypical hemangioma.

I did have my entire prostate bed irradiated. Based on my pre-salvage RT PSA of 0.11 and post salvage RT nadir of 0.075, it seems logical the greater volume of my remaining cancer was outside of the prostate bed. My “miss some” reality was 100% and more than some.

In contrast to your statement about some patients and doctors, I think it is most unfortunate that some patients and doctors wait until PSA rises to higher levels so a good number of mets will more likely be identified. I see no reason to give this beast time and obscurity.

Addressing your derogatory slam of Dr Eugene Kwon, Mayo Clinic, can you kindly share evidence supporting your attack? For you see, a close friend of mine is a patient of Dr Kwon and Dr Kwon has never told him this – in fact he told my friend imaging will not show all the cancer. Also, I have studied a number of his writings and videos. Not once did he write or state imaging can show all the cancer.

[Tall_Allen in reply to NanoMRI]

NanoMRI, you replied to my reply to Elkguide. If you don't want my replies, dont reply to me. Trust me, I don't have time or inclination to read every post unless it lands in my inbox.

I have no desire to give Dr Kwon's youtube videos any more non-peer-reviewed airplay than he's already gotten, but if you're that interested, you can find the link here:

prostatecancer.news/2020/12...

I am glad that Mayo finally has a genuine urinary oncologist (Oliver Sartor) and is getting a new head of oncology. (Kwon is not even an oncologist).

[NanoMRI in reply to Tall_Allen]

check your reply, "Tall_Allen in reply to NanoMRI". So you have no proof of what you wrote about Kwon saying imaging finds all mets? Or maybe you just don't have the time?

I have no desire to read any more of your blogs.

[Tall_Allen in reply to NanoMRI]

For future reference, HealthUnlocked organizes threads by who replies to posts and sends emails to responders. Follow the light gray lines to the left. If you don't want to see my response to an OP, you can respond to the OP directly, and I won't even see it.

You asked for evidence about Kwon - it's up to you if you then want to ignore it.

[NanoMRI in reply to Tall_Allen]

sure looks like you responded to me -

[street-air in reply to Tall_Allen]

regarding proton, this gucast talk with a salvage prostectomy surgeon was interesting. He doesnt like the state he sees in “post proton” patients (about 9:40 ) gucast.org/episodes/salvage...

[Boacan]

I’m in a similar situation as I have been undetectable for the past 4 years following RALP in 2020. Gleason 3+4 and clear margins/lymph nodes/SVI. Recent PSA now at .03 and follow up test again at .02 and MO believes cancer has returned but wants to wait until PSA is at .20 before PSMA scan and treatment. If scan is negative, then MO suggests RT to the prostate bed along with ADT. I’m treating at the University of Utah’s Huntsman Cancer Center in SLC which is probably the best facility in the Intermountain west. Might be a good option for you considering your question and residency in Reno. As a footnote, I, too, have spent much of my life on the back of a horse and also guided many others on a successful hunt locating the elusive “Wapiti” as they are referred to by the local Shoshone tribe. I have learned much from those on this site as I’ve found them to be spot on regarding treatment recommendations versus those of my urologist and MO.

[Elkguide in reply to Boacan]

Thanks Boacan. That PSA seems pretty negligible to me. I was looking at huntsman also. Not sure what to do right now still trying to process 39 trips to radiation. No ADT was suggested. If you are hunting Utah the Monroe has some good Elk. Thanks for the reply

[NanoMRI in reply to Boacan]

Friendly share of my experiences and general question. At 0.13 I had multiple cancerous pelvic lymph nodes identified by imaging 'better than' PSMA (which was clear); confirmed by ePLND surgery. I do ponder, once we face spread outside of the gland and ADT is the treatment strategy, is earlier diagnosis and treatment actually beneficial?

To date, my intent is to not give this beast time and obscurity. This coming Tuesday I have a biopsy of a liver lesion identified at 0.033 by Pylarify PSMA. Understandably, I remain hopeful it is benign.

All the best to all of us!

[j-o-h-n]

All the best to all of us! Including the Elk...........

Good Luck, Good Health and Good Humor.

j-o-h-n

[Elkguide in reply to j-o-h-n]

thanks j-o-h-n. You sure are a bright spot in all of this. Wish I had your attitude!

[j-o-h-n]

Thank you. I guess the bright spot is due to my age and my fighting those tiny bastards for 22 years.....With all the new meds coming out each day you'll be the bright spot in 2039 when you're 88 years old...

Good Luck, Good Health and Good Humor.

j-o-h-n

[mababa]

Elkguide, I’ve just now finished my 28 doses of IG/IMRT (Photon) therapy. SEs have been on my urethra. I had a barrigel barrier installed at the recommendation of my RO. I believe that minimized SEs to my GI. Didn’t even have loosie goosies going on. :). But I feel it will be several months before I can pee normally again. I went to Fred Hutch for a second opinion re proton therapy and that RO thought the IGRT was safer because of being able to target, better, my organs and improve accuracy. He also said there’s no evidence that proton therapy result are any better. He completely agreed with treatment recommended by my first RO. I felt much more confident after that. My lesions were also very near my urethra so it would be hard to avoid hitting it. Also, think of the photons “bathing” the prostate because the cancer is likely present throughout. My lymph nodes also have lesions so a broader dosage of photons were more appropriate. Best wishes with your treatment.

[Elkguide in reply to mababa]

Thank you for your reply and hope for the best for you. I had a RP and no positive margin s but had Svi PSA stayed undetectable for about 9 months now up to 0.16. And need 39 treatments of Imrt no adt yet. I hope I’m not messing with fire cuz I hav a month long fishing trip planned on the Oregon Coast and will get the gold markers in when I get back then four weeks later the imrt. No barragel though. And hopefully mild urinary problems thanks again I needed to hear from someone how went through that.