Is radiation still a good idea? Can APC be cured (until last week I always heard no)?

[barrybayarea]

Once again turning to this forum for a decision I am struggling with. I have been ADT since Oct 2019 which (maybe assisted with some lifestyle changes) has resulted in a dramatic reduction in my cancer, as verified by my CT scan last month, PSA score (<0.1), and now the MRI. As of now, there is no evidence of cancer in my body.

This MRI was done for radiation planning after I had the gold markers places in my prostate. I had the radiation simulation session on Friday, treatment starts 8th July. My radiation oncologist said that given my response to ADT, my age, and otherwise good health he is going to proceed with the planned radiation in the hopes of CURING me. That is the first time some used the word "cure" for APC. I still remember in Sept 2019, the first doc I saw after my diagnosis said, you may have just 6-months left.

The radiation oncologist said that the plan is to radiate my prostate and to give a lower dose to the lymph nodes that had shown tumors last year, which was pretty extensive, maybe over 30 lymph nodes, from below my pelvic region (thigh area) to all the way up to my rib cage.

Give the possibility of a cure, I pretty excited and cautiously optimistic. I know there are risks involved with radiation, the docs said a 50-50 chance of ED and some lower risks of additional cancers developing in 10-15 years. Given the possibility of the upside of getting off ADT for good, it makes me feel like it is worth the risk.

Am I doing the right thing taking this risk?

Have people heard of others being cured with similar lymph node involvement?

Thank you for your feedback and continued support

The MRI report is below -

MR PROSTATE WITH AND WITHOUT CONTRAST, MR 3D PROSTATE 6/22/2020 2:50 PM

COMPARISON: CT abdomen pelvis 1/20/2020. PET/CT 2/21/2020.

CLINICAL HISTORY:

55 years man with biopsy-proven prostate cancer on 10/20/2019; Gleason score = 4+5

Management = ADT and abiraterone

Most recent PSA = less than 0.1 ng/ml; PSA date = 5/29/2020

TECHNIQUE:

Multiplanar T1, T2, and diffusion weighted MR images were obtained through the pelvis on a 3 Tesla magnet using a pelvic phased array coil..Dynamic post-gadolinium images were acquired following the intravenous administration of gadolinium.

3D post-processing and segmentation of the prostate was performed in an independent workstation (DynaCAD) in preparation for possible MRI-ultrasound fusion biopsy with UroNav.

CONTRAST MEDIA: Intravenous gadolinium chelate was administered for post-contrast imaging.

FINDINGS:

Prostate volume: 23 cc

PSA density: Not applicable

Length of membranous urethra: 14 mm

Post-biopsy hemorrhage: None

Multiparametric MR evaluation:

Heterogeneous appearance of the central gland is consistent with benign prostatic hyperplasia. Diffuse low T2 signal throughout the gland extending into the bilateral seminal vesicles with thickening of the rectoprostatic fascia compatible with post-treatment change.

Capsular margin and neurovascular bundle: No evidence of macroscopic extracapsular extension.

Seminal vesicles: No evidence of seminal vesicle invasion.

Lymph nodes: No lymphadenopathy seen in the field of view.

Bones: No suspicious lesions in the field of view. Scattered bone islands and herniation pit in the right femoral neck.

Bladder: Trabeculated without focal lesions.

Rectum: Unremarkable

Other: Trace free fluid in the pelvis. Small fat-containing inguinal hernias.

IMPRESSION:

- PI-RADS v2.1 score 2: clinically significant cancer is unlikely to be present.

- Diffuse low signal throughout the gland and seminal vesicles with thickening of the rectoprostatic fascia, compatible with post-treatment change.

- No evidence of macroscopic extracapsular extension. No evidence of seminal vesicle invasion.

- No lymphadenopathy. No suspicious bone lesions.

[Hidden]

Hey Barry! I too have the gold markers. I did 8 weeks of imrt almost five years ago . I was t-4 meaning my prostate exploded with pc tumors . I was given a 50/50 shot to survive my initial treatments due to tubes out of kidneys due to pc tumors shutting urethra and bladder ... A cure? Our reality is once we are Stage #4 there is no known cure and it’s all consider palliative care for us then . That does not mean that you can not put Pc even an aggressive one down for years some have even for decades . A lot has got to go right . The good news is that your plan can work . I’ve done only adt and imrt , the same plan and I went into remission for over four years now. ED ? Almost all of us have this . Adt kills libido .. Now that you’ve seen Dr gold finger you’re ready to go .. all inhibitions and most ego and pride fly out the door. You are fighting our mutual nemesis. It’s hell bent on eating us alive. Your on your path to healing. Live well find happiness every day . No matter what you’re going thu.. . Imrt drove me into a fatigue syndrome for three years. Still today I have 1/4 my strength and even less stamina .. but I beat the odds , so can you too then .. Treat yourself well . I had anger issues before apc knocked me down . These translated into self loathing and feelings of worthlessness . Especially when I chopped the jewels and dropped the lupron shots . My belief is that we must do much more than just what our Ro or western docs tell us to do ie; diet and exercise .. Any day not in brutal pain or in the hospital and away from doctors must be appreciated . I like a doctor that is positive . It helps . If your dr says he can cure you ? Tell him hec yah , I’m on board ! Heal yourself and stay positive . Adt was hell initially for me. I felt like I was on fire as my lack of testosterone first stripped my muscles and now it’s working on my bones. We need to think about osteo and cardio issues now.. Get through your treatments then recovery and healing can begin .

Be well Barry ..

[GP24]

It depends how you define "cure". You wrote: "there is no evidence of cancer in my body" Many doctors will call this cured. So for those you are already cured - maybe for two months.

I think the excellent response to ADT will result in a long period (years) without remission after the radiation.

[barrybayarea in reply to GP24]

My definition of "cure" is not to have to stay on ADT to keep me in this state. I want some T and the good things that come with it back in my life

[GP24 in reply to barrybayarea]

You are diagnosed with a Gleason 9. Therefore you have to combine radiation with ADT, 18 months is the minimum.

[Hidden in reply to GP24]

It can put the pc down . It has for me . So far 😎

[Hidden in reply to barrybayarea]

You got that right!

[Hidden in reply to GP24]

I’ve had no evidence of pc visible for over four years now. Am I cured. Hell no! I’m still on adt ? Stage #4 we carry to the end. A remission is all one can hope for with Gods will .

[Tall_Allen]

If it is indeed true that there is no cancer in your body other than in pelvic LNs, it may be curable. But it will require strong doses of radiation to the prostate with brachy boost therapy and adequate coverage of all the pelvic LNs, at least as high as the common iliac LNs, and 2-3 years of ADT (possibly less with abiraterone?).

[barrybayarea in reply to Tall_Allen]

I am on Zytiga and Predinsone right now, I am guessing that is the abiraterone you refer to Allen. Current radiation plan is for 5.5 weeks of radiation. I am not sure if brachy boost therapy is part of it or something I might to do at a later date.

[Tall_Allen in reply to barrybayarea]

Brachy boost has to be planned upfront because they reduce the amount of EBRT given. You may want to talk to Joe Hsu at UCSF before you start.

[barrybayarea in reply to Tall_Allen]

I will ask my doc Julian Hong at UCSF about it, do not want to go to someone else without his knowledge and upset him.

[barrybayarea in reply to Tall_Allen]

Allen thank you so much for your suggestion. My doc spoke to Dr Joe Hsu and now brachy boost therapy will happen at the end of my other radiation. As I understand Joe Hsu is one of the best in the world for it.

[Tall_Allen in reply to barrybayarea]

Wonderful! Not a bad idea to check with your external beam RO to make sure that coverage of the pelvic lymph nodes is adequate. This has changed recently - it should definitely include the common iliac LNs and possibly the para-aortics (T12-L1) as well:

pubmed.ncbi.nlm.nih.gov/310...

ro-journal.biomedcentral.co...

sciencedirect.com/science/a...

[barrybayarea in reply to Tall_Allen]

Will do, thank you 🙏

[Tall_Allen in reply to Tall_Allen]

And, as I said, 2-3 years of ADT are necessary:

prostatecancer.news/2016/08...

[Karmaji in reply to Tall_Allen]

Dear TA... need your opinion

I am 80 ..in May 2019 ..PSA 29 GL 8...

Bone showed nothing Choline showed two tiny spots on pelvic

Put on ADT... Firmagon ..now Decapeptyl ..each 3 months

Had EBRT ..boost 20 sessions and also on 2 metastases spots

Choline later showed on trace...sure ADT may hide....

PSA <0.03 since 6 months

Sir My question to you is;

How one knows about state of cancer...

How long to have ADT

URO says at least 2 years... Onco ..3 years

I say why not 18 months...

URO says if I do it and PSA rises.. I wil be on ADT all my life....

Very strange... I thought one may do intermittent....

Health wise right now I am in top shape with no libido...

Thanks

[Hidden in reply to Karmaji]

You’re doing well. I was told adt for life myself. I’ve been on it over five years . My dr wants me on it . I’m 59. You are an amazing guy at 80 to be doing so well . Good luck to you Sir!

[Tall_Allen in reply to Karmaji]

Because of your bone metastases, you are on ADT for life. Limited term ADT is only for men with no bone metastases. For men with few metastases, like you, continuous ADT had better results than intermittent ADT.

[Karmaji in reply to Tall_Allen]

thanks

[Tall_Allen in reply to Karmaji]

And, as far as we know, APC cannot be cured. I don't know what you heard last week, but there is no research that shows it can be cured.

[timotur]

That’s an encouraging MRI report, no indication of SV or LN involvement. Did you have a PSMA or Auximin scan before starting ADT to confirm this? If you do Brachy, you will only need 25 sessions of IMRT. ADT of 18 months is standard for advanced PCa, as indicated by your PSA of 40+ at diagnosis.

[barrybayarea in reply to timotur]

Thank you I did have those, I was told those are required if you have had your prostate removed to check where the cancer is coming from now. I had several CT scans with and without contrast and a PET scan

[Karmaji in reply to timotur]

however for my case...

uro says if hewer me he would go for 3 years ADT....

2 years goes for guys who have second reactions like bone cracking heart stuff etc..

any guideline to follow..

protocoles evolve but not docs

a time lag...

[timotur in reply to Karmaji]

Yes, landmark studies showed 18 mos as beneficial as 36 mos ADT, and another showed 24 months > 6 months. So my Uro says 18 or 24 mos, my choice. I think the more advanced the PCa, err on the side of a longer duration.

[Don_1213 in reply to Karmaji]

Your uro should catch up on his reading. 18 months is sufficient. There is no benefit to 24 or 36 months. The effectiveness is the same. That's the most recent authoritative study (2019). As far as bone-cracking, heart stuff - that's way underplayed by prescribers when they put you on Lupron. 38% more heart/coronary problems are reported by men being treated for PCa when they are on Lupron (I know - my catheterisation is in about a week.) Dental problems are increased about 80% in men on Lupron vs those without. 3 root canals and one major extraction in the past few months. The longer you're on Lupron the higher the potential for these sort of problems. Not to neglect sarcopenia that has about a 100% rate for Lupron.

DO go into it knowing what the side effects are. LOTS of exercise, starting before going on Lupron helps the sarcopenia - it may help the coronary problems. Many men must go on Lupron to survive or increase their chances of a long-term remission (commonly called a "cure" by optimists.) - but go into it knowing what it carries with it, and how to best prevent damage and to find it before it really does a lot of damage.

[Karmaji in reply to Don_1213]

please give reference of 2019 study on 18 months ADT...

Does it apply for T3b N0MM1..

oligo metastases ..

thanks

[Don_1213 in reply to Karmaji]

practiceupdate.com/content/...

The original paper/study: pubmed.ncbi.nlm.nih.gov/299...

mdedge.com/jcomjournal/arti...

themednet.org/question/cvie...

If you google "duration-of-androgen-deprivation-therapy-in-high-risk-prostate-cancer" you'll find a large number of comments on the study. So far I haven't found any that actually dispute the findings. There were a few comments where MD's were falling into "if 18 is good, isn't 24 better" sort of thinking. I guess they didn't understand the conclusion of the paper - the answer to that is NO. 24 isn't better, nor is 36 months. And compared with the quality of life loss with longer-term treatment, 24 months and 36 months appear to me to be inferior to 18 months.

I suspect we'll sometimes not too distant see a study of 12 vs 18 months. Since I've already completed my term in hell with 18 months it won't be significant for me, but it could certainly be significant for quite a few men newly approaching treatment, My WAG - 12 will probably work as well for most of the men in the study, but not for all - so 18 months will remain a standard unless the timing adjusted is based on considerations like Gleason #, the number of cores, percentage of cores, metastasis, etc., a more personalized prescription.

[Rocketman1960]

Never turn your back on the beast. I'm thrilled you have responded so well to treatment. With all the advances in radiation therapy the possibility of cure is more real today than it was 10 years ago an the therapies are much better at targeting.

[TheTopBanana in reply to Rocketman1960]

Of radiation therapy? Even in APC? Interested!

[Rocketman1960 in reply to TheTopBanana]

Cutting edge SBRT is one example. Wasn't even available 10 years ago for anything other than the brain.

[Doggedness]

That is awesome news. What are the other lifestyle changes you made? My husband has also had some good results on ADT and Abiraterone... he was diagnosed a year ago - Gleason 10, mets to bones... and the recent scan showed normalisation of some of the mets and the others were stable. We were very reassured. We have also been having a lot less meat than we used to and doing really ‘green tea’ thing and targeted exercise.

[barrybayarea in reply to Doggedness]

Thank you I stopped all red meat and most other meats, I do have fish, almost no sugar or dairy, nothing processed, lots of greens, big salads - I grow some of this at home. Added exercise, not a lot lot but a reasonable amount. Lost 15 pounds to be close to my ideal weight. Added some CBD and THC into my diet. A few sumplimments, mostly vitamins and a plant called Neem (capsules) (a native Indian tree), which was shown to reduce prostate cancer in a study in Singapore.

But I think most of all trying to get my mind to be more positive and forget about the past. Last few years were hard - an ugly divorce, then my ex got diagnosed with brian cancer, I brought her back to my house, my son and I took care of her until she died of the cancer. All that took a lot out of me. Trying to move on from all that, we all know how a stressed mind will eventually lead to it showing up in some form in our body.

Trying to stay in the present and accepting, being grateful for whatever life throws my way.

[Karmaji in reply to barrybayarea]

strange is this play of life

we humans get trapped by by our conditioning

strange to be born to die.

.

[Hidden in reply to Karmaji]

Yet, this is natures way.. Every being will perish from this earth . What happens to our spirit? How strange but beautiful to die and then be born again ..

[Hidden in reply to Doggedness]

Normalization is good! My wife never really ate meat . I cut it except for once every ten days a grass feed or wild game or deep cold water caught fish. It’s a treat. I think meat is terrible for us with pc. Just a personal belief of mine. .🌵😎

[Hidden in reply to Doggedness]

😷👏🏼

[noahware]

You may already realize this, and it is nothing to be alarmed over, but just because there is no evidence of cancer in your body does not mean none is there. It just means you can't see it, because it is not (currently) "clinically significant" via the level of scanning used.

For myself, I would assume at least SOME of that cancer is hiding in caves (maybe bones?) and making plans for the future. At 4+5=9 meaning higher risk potential, I would do the ADT for at least 18 months, even if doing radiation.

If I chose radiation, I would then want a discussion with the RO on whatever the best options might be to get any abscopal effect, if that is even possible, and if testing for biomarkers/genes makes any sense. (In short, "abscopal" is a treatment that helps STRENGTHEN immune response to the cancer at distant sites, rather than weaken it).

[barrybayarea in reply to noahware]

Thanks, yes that is what the doc said that with radiation we are trying to knock out the microscopics cancer that does not show up on a scan.

I did already do biomarkers/genes testing, nothing useful there - not inherited and no unsual mutuations in the cells.

I will ask about abscopal treatment. Do you know what they do in this treatment, is it like immunutheraphy ?

[noahware in reply to barrybayarea]

I think the idea is that you combine radiation with some sort of immune-based approach (like immunotherapy) to get a synergistic effect. Lots of questions remain about optimal radiation dosing, and there is ongoing investigation into which radiation treatments might either help or hurt immune function.

Here's a bit of info:

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

My own opinion based on some reading is that many of us probably do have some microscopic PC within our bones well before anything will show up as scans, and it seems a localized treatment like radiation (or RP) cannot always fully address the potential for those micro-metastases to progress. That is why systemic treatment makes sense to me, whether with or without local treatment.

If I was more confident that a certain radiation + immunotherapy treatment WOULD be synergistic, it would seem like a no-brainer, but I guess it's pretty early on for much knowledge of definitive benefit. But maybe big in the future?

[Hidden in reply to noahware]

Don’t shoot the messenger ! But , I’m told that we can have 2-3 million pc cells at any point in time not visible to scans. At stage # 4 APC won’t leave us .

[treedown]

I am in your boat as well and to correct the phrasing, unless I am wrong, you will be treated with "curative intent". It would appear we are of similar age and started our journeys pretty close to the same time. I have already had my Radiation and am pretty active. I am also currently <.1 PSA. As it was explained to me I will be on ADT and Aberiterone for 2 years then taken off and we wait and see. My RT said I (so we) are a new set of Guinea pigs. A few years ago we would not have been offered this treatment. Today I go for my 4th Lupron injection. Best wishes to you and yours, time will tell. As my Dr. said we are playing the long game here so stay active, eat well, be happy and love the ones your with.

[barrybayarea in reply to treedown]

Thank you treedown. Agree with what you said, like you I think "be happy and love the ones your with" plays a big part in how healthy our body is. Best of luck to both of us.

[Hidden in reply to barrybayarea]

You and Tree down have got it right...

[treedown in reply to barrybayarea]

Being the healthiest us we can be is the best thing we can focus on now IMO and I am glad you found this place. There are some amazing people here to learn all kinds of life lessons from, Whimpy-p is an excellent example :).

[Hidden in reply to treedown]

We can lift each other up ! That’s all that I’m trying to do here. I’ve made more mistakes than not. Thank you

[j-o-h-n]

Cure? I looked it up and it said "Fxxked".......

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 07/01/2020 6:38 PM DST

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

Hahaha , where have you been young man? Some Folks thought that you quit this job ? Someone posted where is John ? I knew when I looked at the stages of pc cancer poster at my urologist that I was fxxked ... and there is No stage #5 baby . I asked , “ Is it terminal” ? The PA said “yep” ...I kind of figured . I had just got out of icu with tubes after one week . Got a shot of firmagon . I knew APC up close and personal at that time . Welcome to the jungle by Guns and roses came to mind .

[Karmaji in reply to Hidden]

stages are just numbers..

face it

do not become living dead

alive till dead....

[Hidden in reply to Karmaji]

Yah! What’s in a number? Pluck the day !

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

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

stay visible...

[Hidden in reply to Karmaji]

🧐

[barrybayarea]

Thank you so much Scott