T2c N1 M1a

[KJMinPhx]

Diagnosed early March 2019, but pretty far along. 103 g prostrate - adenocarcinoma in 10 of 15 samples, all with Gleason 4+4 = 8, most samples show cancer at 60% - 100%. Metastasized to the retroperitoneal lymph nodes proven by biopsy. Strangely, the pelvic nodes seem normal. Last PSA 8.4, but none measured since started Lupron. Taking Lupron shots every 90 days (started 30 days ago) Plus just started Zytiga last week with prednisone. Radiation ruled out – nodes too extensive and too close to the aorta.

Current issues on my mind:

* Biopsy proved prostate cancer in retroperitoneal lymph nodes but according to imaging my pelvic lymph nodes are normal. Scans detect no cancer anywhere else. Per literature search It seems extremely rare to just metastasize to those distant node’s. Any insight on what’s going on?

* my prostate is huge and my urological symptoms are significant. Flomax helps, but still have all the UT problems. No doc favors removal saying it won’t do any good for the cancer. Any

thoughts on removal or TURP?

* Fatigue is the biggest side effect that I have been feeling, a lot. What do others do about this?

Anyway glad to join, looks like this is a good group.

KJMinPhx

T2c N1 M1a

(Extensive Growth to both lobes of prostate, metastasis to distant lymph nodes)

[Tall_Allen]

I doubt that it completely skipped your pelvic lymph nodes. I assume the scans you had were bone scan/CT - that can only show enlarged lymph nodes - but what if they are cancerous but not enlarged (which seems to be common)?

One man in my support group just had salvage radiation to his paraaortic lymph nodes.

Have you looked into HoLEP, REZUM, or prostate artery embolization as alternatives to surgical TURP?

Exercise is the best method I know of to fight fatigue.

[Pierreb in reply to Tall_Allen]

Hi Tall Allen. What are your thoughts on radiation to Lymph nodes? My dad has metastasis in one right posterior external iliac lymph node. Found with F-18 Axumin Scan. MO said radiation would not be helpful. What are your thoughts?

[KJMinPhx in reply to Pierreb]

I saw a radiation oncologist. He said no type of radiation was possible because the cancerous lymph nodes are too high up, almost to aorta. Too many other organs would be at risk. This line of defense is not on the table for me.

[Tall_Allen in reply to Pierreb]

You have to talk to an RO, not an MO. Pelvic lymph nodes are sometimes worth treating.

[KJMinPhx in reply to Tall_Allen]

Good observations, thanks.

Actually, I’ve had two abdominal scans with contrast and they report normal pelvic lymph nodes. That’s why my presentation is so strange.

I didn’t know about those alternatives to TURP and will look into them. I have decided to wait a while to do any of that. Gotta define and get used to my new normal.

Agree about exercise- yesterday was my first day with a trainer (who knows everything)

[Tall_Allen in reply to KJMinPhx]

As I said, there are limits to what scans can see. The scans you had only report normal size - not what's in them.

[GP24]

"... my prostate is huge and my urological symptoms are significant. .... Any thoughts on removal or TURP?"

I would suggest removal. Here is a study that found that this avoids local complications in the future (and you already have these):

onlinelibrary.wiley.com/doi...

In conclusion, the present retrospective analysis supports the hypothesis that primary local prostatic treatment provides a palliative benefit to men who later develop CRPC. RRP [=prostatectomy/surgery] was associated with the lowest local morbidity rates experienced at CRPC stage and may achieve good local palliation in men who ultimately are not cured by this treatment modality

On page E252 they write:

Patients who received local therapy to the prostate (groups1 and 2) showed a longer mean time to develop CRPC (8years) compared to patients in group 3 (4 years).

So surgery seems to be beneficial, avoiding local complications and maybe against cancer as well.

[Hidden]

Welcome aboard ! I too was gl. 4+4 non op,just about fours years ago.

The horse was out of the barn . Surgery was never considered in my case . My story is much different than yours and most . After hard Times with tubes and foley I’ve had no visible signs and an undetectable Psa for 31/2 years out of four . Find a prostate cancer specialist if possible.. I’m sure that many will answer your specific questions . I’m no expert . Fatigue has been my major issue .. Eat and stay active . You’re not done yet . It is possible to live decades past a bad dx. We have many members that have done so. The natural path of advanced Prostate cancer no matter what we do is an inevitable re-occurrence . But we can’t listen to that now . You will get in touch with your feminine side , you will

Be diminished but don’t give in to ruin or despair . Plenty of emotions involved with castration . Just Being happy is a win win . Please don’t dwell on bad stats or others negative comments. You will get fine advice from the good people here . Cure thyself amigo . The most difficult and most important part is the start ... Start now to build immunity with the need to better withstand whatever treatment you choose . Panic ,fear and gloom are enemies . I lived with them all . I pray that you can turn this rotten chemistry around and live for years with some appreciation of life. Good job finding HU early ,so you are not so much wondering around in the darkness of not knowing. How old are you ? I’m 58 soon . Take Care .. Scott 🌵

[Shooter1]

Removal of prostate even with bone mets took care of all my urology problems and killed my pain. Also don't need to get up to pee at night.

[kaptank]

I recollect that there is evidence that removing the primary cancer site significantly slows future metastasis even if it is already out. (all other things being equal)

[kaptank in reply to kaptank]

sorry, poor expression there. I mean that even if the bastard has spread, removing the primary source can slow its future spread.

[Mish80 in reply to kaptank]

I can only speak in regards to my dads story. He had his removed and it has taken 9 years for it to show up as one met.

[j-o-h-n]

"Anyway glad to join, looks like this is a good group.

" GREAT GROUP. <===<<<

Greetings...

Here goes my spiel... Voluntary info please: Age, Location, Treatment center. Doctor's name(s). Thank you. If you reply please do it in a future post and NOT to me.

This info helps us help you and helps us too.

Maybe I missed something, but who advised not having a RPD?

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 04/23/2019 11:48 AM DST