GP243 years ago

If you treat the prostate with surgery or radiation, the time to castration resistance will be much longer than if you don't. Therefore I would do that. The retroperitoneal lymph nodes can be observed or controlled with ADT. Maybe in the future you will be allowed to remove these with Lu177.

Pcnmyy in reply to GP243 years ago

Thank you for your prompt response. You mean use surgery and/or radiation on both the prostate and the lymph nodes?

Reply (0)Report

GP24 in reply to Pcnmyy3 years ago

You can choose radiation or surgery to get rid of the cancer in the prostate. With surgery you can have a lymph node disection to get rid of some affected lymph nodes, with radiation you can have the pelvis radiated.

However, radiating the pelvis has side effects and since you already have retroperitoneal lymph nodes, the radiation template will only cover a part of the effected lymph nodes. So this may cause lasting side effects without detectable benefit. Also, in the case of surgery, the lymph node disection will only remove a fraction of the affected lymph nodes.

Therefore I would just treat the prostate and leave the lymph nodes to be treated later with Lu177 or targeted SBRT radiation.

Here are links why it makes sense to treat the prostate even though mets are already detected:

esmo.org/newsroom/press-off...

redjournal.org/article/S036...

Reply (0)Report

LearnAll3 years ago

The response you had with ADT and plantbased diet is very very good so you are going to live long based on research which indicate that Nadir PSA (0.4 in your case) and Nadir Testosterone (less than 10 in your case) falls under median survival of atleast 6 1/2 years.

If you maintain PSA 0.4 and T less than 10 , you will be fine. I will not worry about those little dots shining on your PSMA scan. You have PSA producing cancer cells so that also is a positive factor. Your current treatment is working well.

Pcnmyy in reply to LearnAll3 years ago

Thank you LA for giving me the positive outlook.

Reply (0)Report

Tall_Allen3 years ago

1) T0 means that the imaging did not detect any cancer in the local area around the prostate. It does not mean there is no cancer there. Some is certainly there. It may too small/shrunken to be detected.

2) radiation has been proven to be of no benefit when significant metastatic cancer has been detected on a bone scan/CT. The same is probably true for surgery.

pcnrv.blogspot.com/2018/09/...

2a)Lu-177-PSMA might be beneficial. You can get an FDG PET scan to see if you have significant non-PSMA avid cancer.

pcnrv.blogspot.com/2019/12/...

Pcnmyy in reply to Tall_Allen3 years ago

Thank you TA for your response and insights. I will explore the Lu-177 PSMA therapy in Germany once travelling to Europe is permitted again.

Reply (2)Report

Rod981683 years ago

Pcnmyy, I too was diagnosed with cancer at 60 with a Gleason 9 and was told I had very aggressive cancer and that surgery would do me no good but I went ahead and did the surgery and I'm glad I did. I'm still here six years later and my neighbor who became a good friend also had prostate cancer about a year before me and his Gleason score was 8 and the doctors convinced him that he shouldn't do surgery to remove his prostate and now he's dead after 5 years with the cancer. There are no sure facts and evidence to say whether surgery or radiation is better, but my reasoning was, I got this lump of cancer that we know exists in my prostate and it's got to be better to remove the prostate, than leaving it there and hoping the radiation will get it all. And all my doctors said it won't do any good to remove it but I was able to persuade my urologist otherwise. Sometimes you have to be your own advocate and go against all the experts. May God bless you in the struggle with your decision.

Rocketman1960 in reply to Rod981683 years ago

Kill the host whenever possible. If they will remove the prostate, let them. Good Luck!

Reply (0)Report

dadzone433 years ago

My experience is different from yours, as are my age and my staging. For me it is heartening to read your story and rejoice with you about how well it is going. Of course we are not out of the woods and may never be. Each day is precious.

j-o-h-n in reply to dadzone433 years ago

Well said..... I would have said the same... but you already said it.....

Good Luck, Good Health and Good humor.

j-o-h-n Tuesday 03/24/2020 4:52 PM DST

Reply (0)Report

Patrick-Turner3 years ago

Hi Pcnmyy,

At 62, I had Gleason 9 in diagnosis in Dec 2009, Psa only 6, and 4 months later in 2010 the urologist found he could not remove PG after opening me because of too much Pca wrapping around PG. No spread was found, but probably was there.

Operation was terminated after seminal vesicals removed. Some lymph nodes removed, but pathology found no Pca spread.

So I began the alternative to surgery, ADT + EBRT. I had ADT failure in 2016, more IMRT to PG, + cosadex, then Zytiga, then chemo with Psa at 12. Chemo failed, so I began Lu177 in Nov 2018 and had 4 shots by May 2019, and was put on Xtandi in April 2019.

Psa went from 25 before Lu177 to 0.32 in Nov 2019, but its now rising again, so I have to repeat Lu177, maybe with Ac225 added, 2 shots, maybe with more PsMa scans and maybe FDG scans are needed.

I see my oncologist tomorrow to talk about this. But last week at age 72, I cycled 240km, and felt very well. I live in Canberra in Australia, and Lu177 is available in Sydney, 300km away, so I could drive to get Lu177, and return same day if I needed, and if I can't get a train ticket due to travel restrictions due to Covid19.

But it seems Lu177 has worked well initially. I'd be in palliative care if I could not have had Lu177. Its never over with Pca unless you have a successful RP where all PG tissue is removed, without leaving any behind that might get Pca in future, and all before any Pca spread has occurred. I had yearly Psa tests for 10 years before diagnosis, but should have had biopsy when Psa was 3, in about 2004, and I bet Pca would have been found. There was no good CT scan or MRI scan that could detect it then.

But now, PeterMac Hospital in Melbourne officially recommends getting PsMa Ga68 PET/CT scans as early as possible and it will show presence of Pca much sooner than any other scans. This cancer research hospital is trialing giving men initial theranostic treatment with Lu177 where the PsMa scans show enough PsMa avidity, and maybe where an RP may not have a good outcome. The early theranostics is likely to easily kill most Pca soft tissue mets before Pca moves to bones, which it usually does. And maybe the early theranostics reduce the chance of Pca mutations when the initial PG tumor ages, and reproduces new generations of Pca cells that may be impossible to kill.

My PG tumor is still there after 10 years, and my PG may be a shriveled up mess, and maybe there is some small activity, but last CT scans 6 weeks ago showed I had only 2 bone mets with Psa at 1.3.

But I expect Psa to be 5 now, and I will happily have another PsMa scan to have the best view on my Pca status to see what next treatments will be. No doctor should ever work by guessing what might work; he must be guided by the best scans, and PeterMac officially recognizes that PsMa scans are better than all CT scans.

Its another nice autumn day, and no more nice sitting in a cafe for lunch due to Covid19.

But take away is OK.

I live alone, and retired from work in 2012, so being self isolated is quite normal. But the queues outside the dole office have been huge, as many "non-essential" workers have been laid off, and ppl gathering anywhere is banned, and road traffic has dramatically reduced. I do most of my local travel on a bicycle, and I might get though all this without getting Covid19, but then if I do get it, maybe my superior fitness and absence of other bad health conditions will allow be to survive it.

Meanwhile, the Govts of countries seem to be favouring the rich with billions but the poor will suffer more.

Patrick Turner.

Pcnmyy in reply to Patrick-Turner3 years ago

Thank you Peter for sharing your story and your invaluable insight.

Reply (0)Report

Patrick-Turner in reply to Pcnmyy3 years ago

I'm Patrick, not Peter. But all that's OK, the amazing thing is we can all come together here to tell our stories, even though most of us will never meet, or see each other, but what we feel and think can be shared.

Keep well if that is possible,

Patrick Turner.

Reply (0)Report

Pcnmyy in reply to Patrick-Turner3 years ago

My sincere apologies Patrick. I fully agree with you. Thanks.

Reply (0)Report

Patrick-Turner in reply to Pcnmyy3 years ago

If you all were here I'd have a party and buy you all your favourite drinks. Alas, such gatherings are banned now.

My Psa is now 3.5, a bit less than the 5.6 I expected. My oncologist told me this morning I could have tele conference via Skype in 2 months for next appointment.

Despite Psa rise, there is not much to worry about although he would have normally said I would go on to Cabaztaxel for awhile but not with virus around because of chemo bad effect on immune system, so I continue to wait and see for awhile. He did say I would have PsMa scan in 2 months, and could go for more Lu177.

So docs are all on my side. I've had a Psa of 3.5 quite a few times since 2009 Dx, and I don't want more chemo side effects. Research docs at PeterMac in Melbourne say I might respond again very well to more Lu177.

I had a beautiful cycle ride of 43km with visit to hospital included, bought a take-away sandwich, so life is just fine despite what so many say about it being the end of the world; it ain't.

Patrick Turner.

Reply (0)Report