Good News-But Do I Belong Here?

[London441]

Hello all. I comment/reply sometimes (usually about exercise), but create posts much less often. It's been awhile though, and something has come up that prompts this one,

Quick recap: RP in June '19 and a subsequent clinical trial beginning Sept '19 due to positive lymph node and seminal vesicle invasion found in post op pathology. Trial was Lupron, abiraterone, Taxotere and 37 IMRT sessions.

If it were today, I would have access to better scans and avoided the RP, which I probably should have done anyway. This is in the past. Consequences were both ED and incontinence for me but both also rectified to a large extent by trimix and AUS for the incontinence. PSA has remained undetectable throughout.

Since I've had full return of testosterone (over 700) for 16 months now I am of course happy so far. Early docetaxel probably didn't help any (as has been shown by now in STAMPEDE) but the hope is that the rest of it was worth it. Early treatment this aggressive in my type situation has not been proven efficacious either but my hunch (shared by my MO) is that could be.

I haven't met or heard of any guys who took this much treatment right after RP with 4+3, negative margins and a undetectable PSA (despite the adverse features), but I'm sure you're out there somewhere.

My question is this: Tall Allen posted a response in the 'Prostate Cancer Network' forum (the place for less advanced disease) about ADT and heart issues. He said that 'Men on this site who are doing ADT are on lifelong ADT'. When I replied it was news to me, he apologized and said he forgot he was in the non-advanced forum. So did I actually.

Therefore, if I understand correctly, he is saying (you are saying if you're reading this TA) that men in the advanced forum who are on ADT are on it for life. I was on it for 18 months only. I'm pretty sure I'm not the only one on here that is either on it for a specified length or is (hopefully) finished with it.

So I am definitely not on 'lifelong ADT'. although I certainly may wind up there. My odds of cure/durable remission without having to resume ADT, probably for life, at some point are still high enough I never gave it a second thought that I might not be a 'card carrying' member here.

ADT 'vacations' notwithstanding, am I to believe that being on finite lengths of ADT, perhaps never to return to it, preclude one from 'proper' membership here? if so, I don't belong in this forum, and in fact, since I was given ADT as part of curative intent, I never did! I am NOT arguing or trying to be antagonistic, not resentful. I just want to know I am not in the wrong place.

[Tall_Allen]

I'm cured too. When I have something useful to say to men with advanced PCa, I post here; otherwise, I post on the network site.

Worry over CV side effects, which are low, is not a good reason to avoid ADT if ADT is what is keeping one alive. That may change if one has had serious heart problems, and one's risk of dying from either is similar.

Here's what the latest systematic review says about CV side effects from ADT:

"While the risk of CVD should be considered when prescribing ADT, the findings suggest that it should not be considered a contraindication if the expected benefit is substantial."

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

[London441 in reply to Tall_Allen]

Thank you for your reply.

It’s always notable to me that you use ‘cured’ frequently. There are some quite knowledgeable who refuse the term for anyone oligometastatic or beyond. Perhaps that space is in flux?

[Tall_Allen in reply to London441]

I agree that once there are bone mets, it is a disease to be managed rather than cured.

[Tied2work in reply to Tall_Allen]

What would be the criteria to be considered cured? Thx.

[Tall_Allen in reply to Tied2work]

For me, cured=localized PCa +a treatment known to permanently stop PCa+biochemically, no evidence of disease

[epfj3333 in reply to Tall_Allen]

How do I find the network site. My computer always puts me on this site.

[JPnSD in reply to epfj3333]

Hit 'my hub' icon above....select your areas of interest.

[Tall_Allen in reply to epfj3333]

The network site is at this link:

healthunlocked.com/prostate...

[epfj3333 in reply to Tall_Allen]

TA - Do I belong on this site or is there a more appropriate site for me? Thanks.

[Tall_Allen in reply to epfj3333]

I think this site is best for recurrent men.

[ragnar2020]

Dear London441,

I find your situation informative, and slightly different than my own.I had a RARP in 9/19, and my pathology was G9 with some PCa in the margins, but nothing in the lymph nodes, and my PSA was undetectable. At that time, I had been dx with CAD, so I knew that I had complications with CAD if I used ADT. I proceeded slowly and monitored my PSA. I am ED, but I recovered control of my urination within three months.

I watched my PSA, and by 5/22, it had risen from undetectable to .2. I had a PSMA-PET CT scan in 7/21 in a trial at the LA VA, and the RO detected one suspicious uptake near my uretha. In 10/21, I had an MRI at MGB, but the radiologist was unable to determine what the suspicious area was from the MRI scan.

In 5/22, I had moved from MGB to Dana-Farber Brigham Cancer Institute (DFBCI), and added an MO. A PSMA PET CT scan detected a lesion on my left sacrum. Because I had quintuple cardiac by-pass surgery in 7/21 at MGB, I have avoided any ADT because of the risk of MACE issues with the CAD and the use of ADT for the PCa. Like your's, my T is 700.

Next week, I'll begin thirty-seven sessions of proton beam SRT at the Roberts PB Center at UPenn. Both my MO at DFBCI and my RO at UPenn agree that the risk of cardiac S/E's from adding ADT HT to my treatment plan at this point is not worth the risk of incurring a MACE. I agree with them.

I have two close friends with APC who are both G9. Both men have had RPs and SRT after three years before BCR occurred. Neither friend has CAD nor CHF, so our situations differ. One friend has been on Lupron injections every three months for the past eighteen years, and he has stable PSA. He is cared for at DFBCI.

My other friend tried ADT, but the S/Es from Lupron were too extreme for him. He switched to BAT treatments with Dr. Glenn Bubley in Boston, and he has remained stable for the past dozen years. He is cared for at Beth Israel.

Personally, I view my PCa care as an effort to out run the disease and hope that some of the new treatment options provide me with options to survive this disease until care become chronic and not terminal. I have no doubt that my PCa is systemic and the cancer cells are circulating within my various body systems seeking a place to grow, mature and kill me. HT with ADT and chemo may be treatment options for me eventually, and when I'm told that these are my only options, I'll decide whether the SEs and QOL are worth the extra time the treatment options offer.

Every guy's PCa is different and they must manage their disease themselves with the best information they can find and evaluate. Then, we make our decisions, and roll the dice.

Good luck.

Jeff

[Papillon2 in reply to ragnar2020]

Very encouraging. Now I know um in the right place.

[London441 in reply to ragnar2020]

Thanks for your story. It takes fortitude and creativity to pursue the necessary treatment path with a G9 when you essentially are disqualified from ADT. As you well know, no matter what you do, you’ll continue to be challenged. Great job so far.

One of the main reasons I treated aggressively early was my biological age, fitness etc. Lucky genetics and being a lifelong athlete came in handy. I wasn’t confident of anything except that the ADT, Zytiga and chemo concurrently followed by radiation might be a bit tough, but not really a big deal. It wasn’t, but I was still most grateful for it.

Waiting to act nearly 3 years after RP made sense to you, moving swiftly made sense to me. No side effects for you! As far as disease eradication/control, time will tell for both of us. Great luck to you!

[timotur]

I think anyone that started as advanced high-risk belongs in this forum. It’s commendable the path you took, and thanks for sharing, it may help others considering aggressive treatment, and early chemo. We started about the same time/place, t3bN1M0+SV, and wound up at nearly the same place, I’m T:700, PSA0.04, and been off ADT for two years, but I took the BT route and declined chemo after researching some trial results. Remission or cure, time will tell, wishing you the best.

[Papillon2 in reply to timotur]

I do not know you. But I like you already. May the Gods smile upon you!

[London441 in reply to timotur]

Very similar indeed. 3+4 and no RP I’m a little envious of. The liver issue not so much, but I have stuff I don’t even talk about😀

Only for brevity. Great luck to you sir!

[London441]

You’re on active treatment for a G9. I’d say you qualify, but that and $4 gets you the big fancy coffee. Good job on working that BAT.

[Soumen79]

Hi London441 and smurtaw

It is very honest to raise the question to yourself, but for all practical purposes, it will not be beneficial for us that you leave the group. Your path, your experience, your fight, your feelings - all are important assets to this group. This group is like a knowledge hub, like a library, you are a book on the rack awaiting a needy reader. With your win, you are now more powerful, more able to do more reasearch and contribute, but that is optional, but your presence and your sharing of first hand wisdom is necessary.

Thank you sir. Please be here for us.

Regards

Soumen

[London441 in reply to Soumen79]

That is very kind thanks. At the same time, to use a most well worn expression, you never know. It’s best to never forget how fecund and survival endowed this disease is. Each day we can thrive is all that matters I’m sure you’d agree. Onward!

[tad4]

You know what London441, it is all about educating oneself and taking responsibility for your health. I don't give a f#$% about whether one should be on some site or the other. I'm 74, diagnosed with PC in 2020. Went on ADT for 12mths, GS 9, had brachtherapy then followed with EBRT. Now my PSA is .008. May have some problems but I have just had a bone scan and that will determine the way ahead. If someone says you shouldn't be on this site, tell them to get f#$% because knowledge is what you need to determine what is best for you. And, when you are a senior, you can say what you like, and you don't care, lol. Good luck and stay positive.

[London441 in reply to tad4]

Yes sir I agree and thanks. I should add though that no one told me I don’t belong here. I think the question I put to Tall Allen about lifelong ADT was best answered when he drew a line between having bone mets or not as eligible for ‘cure’. The issue is it can always hide and come back later, sometimes many years later as we see. So nowhere in my life do I see less of a ‘sure thing’ as I do with this.

I like your treatment path.

Do I have an advantage going forward many men treated for Pca don’t? No doubt. However, without question I won’t be turning in my membership card😀

[MateoBeach]

Your card here does not have an expiration date. You have knowledge to contribute from your own experience and what you have learned. Those that do short term ADT, such as 18 or 24 months, as an adjuvant to salvage radiation with curative intent are not on ADT for life. As your case proves.

If you had not had the radical prostatectomy, then you would not have known that you had SVI and a positive node (regionally advanced). And you would not had the info needed to pursue early aggressive therapies that have apparently cured you. Stick around. And congratulations (but keep monitoring).

I also had early (immediate) chemotherapy and SRT when RP pathology showed SVI, ECE and positive margin. That was in 2007. They didn’t include RT to the PLN fields then, so now I still have positive LN mets. Paul

[London441 in reply to MateoBeach]

Thanks Paul. Yes my card indeed has no expiration date. Stay strong! Our respective histories are a good illustration of the rapid advancements we should all be extra grateful for.

The ‘bad’ news:

You weren’t given whole pelvic radiation, which is of course now standard. No available sensitive scans for me meant I couldn’t know the details of my pathology pre-op, which would have dissuaded me from surgery- which was definitely not my best choice.

The good news: We’re alive and well today. We look forward not back, right?😀

[Hidden]

I don't have advanced disease. I am on here to figure out what to do to prevent disease progression and what to do if it does become advanced. I don't think I'm in the wrong place being here. Some might disagree. The treatment path I chose was HIFU, after rejecting external beam radiation. After TURP surgery I was not a suitable candidate for RP and I have no regrets about that. I had 6 months ADT prior to what was to be radiation before I changed my mind and went with HIFU instead. Haven't been on ADT since then, almost 6 years ago. After HIFU my local urologist (not the HIFU surgeon) recommended a total of 2 years of ADT. I rejected that notion and refused further ADT injections.

[London441 in reply to Hidden]

What was your original stage and Gleason score?

[Hidden in reply to London441]

My Gleason score was 8. My PSA was only 2.7. An abnormal DRE finding got me sent for a biopsy at age 66. I think my stage was 2(c?). The palpable DRE contributed to that. I was warned that my low PSA could be an indicator of aggressive disease. An Axumin scan in December of 2021 showed no activity in terms of suspicious areas.

[London441 in reply to Hidden]

I see. Low PSA is indeed an indicator of aggressive disease. Except when it isn’t! That’s tough to beat.

[Hidden in reply to London441]

🤔🤔🤔

[London441 in reply to Hidden]

I do mean to celebrate! If you’re not already .

[Hidden in reply to London441]

Cautious about celebrating but I do feel good. Those are 'thinking' as opposed to 'celebrating' emojis. Very much aware of the low PSA good vs low PSA dangerous thing.

[anonymoose2]

5 months drug free. No bone metastasis. Cancer contained to prostate 4-4 Then invasion of cancer in pelvic lymph nodes. Xtandi and Eliguard for a year. 6 months undetectable PSA. Full body scans no sign of cancer lymph nodes clear.I like the word cured. I use the words blessed and remission way more than cured. I still sleep with one eye open for the cancer to raise its ugly head. Until the Im good and sure enjoy no more hot flashes.

[London441 in reply to anonymoose2]

What type of scan did you get? What is your testosterone now?

[anonymoose2 in reply to London441]

With and without contrast CT scans (10)20 PSA tests over 5 years

2 months ago T was 17.65

Been that way now for a full year.

Being chemically castrated I don’t expect it to go any higher. I thought it would but with radiation and Lupron I’m pretty well fried in that department. Keeping a watchful eye. 5 more weeks and they will do the PSMA-PET CT.

[monte1111]

If you are in London, get a sailboat and go west young man. It may be crappy here, but it's gonna be a lot crappier there pretty soon. Ben Franklin, aka j-o-h-n.

[addicted2cycling in reply to monte1111]

monte1111 wrote --- " ... go west young man ... "

by sea, land or air - a tune to travel by

youtube.com/watch?v=VmhkkTF...(Not working as expected?)

go figure, 10 years to da-DAY when posted on da-tube

[monte1111 in reply to addicted2cycling]

We were so easy to be pleased. Rawhide, Rowdy Yeats, many others. I can still hear the cows mooing. I am sure you will be the first person to cross the Atlantic on a bicycle.

[addicted2cycling in reply to monte1111]

monte1111 wrote --- " ... I am sure you will be the first person to cross the Atlantic on a bicycle. "

I'm thinking about staying ON MY COUCH until I die. Just FELL OVER a few hours ago while using my knee walker when trying to go out to the pool. Hurting almost as much as the wild hog hit on Tuesday morning. Maybe I should put *TRAINING WHEELS* on the walker or bubble wrap myself. DANG, have to PARTY like it's 1999 'cause it appears the GL10 ain't gonna kill me.

[monte1111 in reply to addicted2cycling]

God lord. I hope you got some bacon out of the deal. I PARTY like it's 2022. Nothing like the 1999 PARTY. I crashed my E-Bike first try. Hit pavement at 20 mph. I need to learn to walk better now. Long Covid has hung in there for 6 months now. Time for me to get out there again. One, Two, Three, Four. We love the Marine Corps.

[addicted2cycling in reply to monte1111]

Imonte1111 wrote --- " ... I crashed my E-Bike first try. Hit pavement at 20 mph ... "

NASTY HIT 4 sure!!! Have seen numbers that lots of E-Bike mishaps. Some of those things are way too fast for the rider's skills.

Sorry about the COVID. Biking friend got it about 6 months ago and he says it is still lingering in some ways.

BE SAFE and Get WELL.

[monte1111 in reply to addicted2cycling]

You never forget how to ride a bicycle. I'll never forget my first ride on an E-Bike. Not the same thing. I fear falling, because of bone metastasis, above most anything in the world. I am faced with a challenge I haven't accepted yet. But tiimme, time is on my side. Well, it used to be.

[addicted2cycling in reply to monte1111]

monte1111 wrote --- " ... But tiimme, time is on my side. Well, it used to be. "

youtube.com/watch?v=sEj8lUx...(Not working as expected?)

just because we were once YOUNG 😀

[treedown in reply to monte1111]

Wow, I have had conversations recently about this exact thing. I hope you get better soon and back on that bike. Just take it slower.

[monte1111 in reply to treedown]

Thanks for the concern. Don't know if you ever heard anything about Zetabow. I never heard anything about Whatsinaname. But j-o-h-n, j-o-h-n; you just can't get rid of j-o-h-n. Saw a jar of Greek Salad, made in Poland. If you can resist this j-o-h-n, you're a better man than I.

[treedown in reply to monte1111]

Sorry that was directed at the OP and replied to you in error. Consider me concerned none the less :). Zetabow passed away last year. As mentioned I have to wonder if j-o-h-n is being gotten rid of or if he is choosing to leave. That goes for many of the other regular contributors that are also posting goodbyes.

[Andy1569 in reply to treedown]

SO TRUE!!!

[treedown]

I am in a similar position though my treatment was far less extensive. When I joined I was automatically added to advanced and non-advanced forums without deciding one over the other. I have had members tell me I am not really advanced though without a clear criteria per the forum that is not clear. My MO defines me as Stage 4, technically I am T3L1M0. Based on CT and Bone scan I showed only LN involvement and a relatively low Gleason. My current status is in no way definitive so only time will tell. Based on your profile you seem to be Advanced but again I am unsure of the exact criteria, assuming any exist. I also have little to post but I have mostly been a responder than a poster anyway. Most of my questions have been answered along the way and for menthe forum has been supportive emotionally more so than a source of specific information. As you that is partly due to the apparent success of my treatment up to this point. I for one have appreciated your input as I do all members. It saddens me that member are feeling the need ot leave or being forces to. As I am unsure why this is all happening after HU was purchased I can only speculate and hope the forum doesn't change drastically. I hope you find the answer that you seek and I hope that answer keeps you a part of the forum.