Feedback Please: Hi all, Perhaps more... - Advanced Prostate...

Advanced Prostate Cancer

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Feedback Please

whitebird
whitebird

Hi all,

Perhaps more of a rant here, but I'd greatly appreciate feedback if I'm being too hard in my evaluation of the care being offered in this disease.

Brief summary: RP 2001, biochemical recurrence in 2015 to salvage radiation 2016, now looking at systemic tx as PSA is rising again (last dt was 4 months, low load) and one mets located at pelvic edge lymph node. Being offered Lupron.

In my analysis, care/tx of prostate cancer has been a little slow in the past. Perhaps because it was viewed as slow growing and a disease of "old men" who are going to die of something else first. My RP was open abd at a good center (Seattle) and at the time told I could get robotic surg in France, but an 8 hr procedure at U of W if I wanted it here. Surgery went well, no real bad results in terms of QOL (very lucky). In 2015 I was told looking for mets before salvage radiation was not a good idea due to low PSA (0.41), but that for salvage radiation, I needed to do it now for best outcome. Completed, nadir of 0.11.

Today I would try and get a better scan option before SR to see if we could locate mets, and many advances in RP since 2001. My understanding is that Lupron has been the SOC "go to" for the past 40 plus years. It works (at least for a time) and sure the side effects are not pleasant, but "do you want to die and miss out on the grand kids", etc). Totally get that, but it seems again that this isn't really the only SOC first step, but rather the "usual" first step. Accept that I've always been a little late in terms of advances and really not all that unhappy about care to date; but it seems that SR and Lupron are pretty blunt instruments and may be better ways to go, without getting to out there in terms of chasing every "new thing" in someone's research or phase 1 testing.

Am I off base here?

10 Replies
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Hidden
Hidden

You call that a rant? Wait until I vent on line ? You are calm. Im working on it ! KA good venue to let it out because who else besides others in the same boat could relate to the irony of APC ? With luck we will have more chapters added in our stories. We need to have ways to offset the agony.. for me it’s a loving partner. That‘s all that I need. You are not off base .you are on point. It’s all a crap shoot anyone that has all of the answers if full of it . You’ve been at this a lot longer than I have. 2001 darn , mama Mia! We’re all in different phases of the same disease. I’m hoping you get on the correct path and get some years past treatments to really breath in life . So what’s good for you , can be good for me and others in the future. Let us know These fine fellows of HU can answer any tech question .Just know , that I amongst many others follow and support others here . Iam for miracles and good results for all of us . Take care and good luck!

whitebird
whitebird in reply to Hidden

Thanks for your response and support. It is helpful to have this venue

Hidden
Hidden in reply to whitebird

I thank you and everyone else . It helps me to be in touch with others in similar circumstances..

It's very discouraging that you had a recurrence 15 years after RP. That's a perfect illustration of how slow-growing PC can be at first. It sounds like the recurrence was in your pelvic lymph nodes and the salvage radiation didn't quite get all of them. it was recently found that the field size of pelvic radiation is often not large enough. Have you talked to your RO about whether it's possible to treat just the area where the recurrence is? With SBRT that can sometimes be done, but it's anyone's guess as to whether that will be helpful or not.

In 2015, it was very true that it was unlikely that you would find any mets with a PSA of 0.4. Now, with the approval of the Axumin PET scan, and the new PSMA-based PET scans on the horizon, they can find mets earlier. But they have to be at least 4 mm.

It sounds like you received the best treatments available at the time.

whitebird
whitebird in reply to Tall_Allen

Thanks for your reply Tall_Allen. I have an appt at OHSU on Tues with an MO. Local guy is not prostate specific. Plan on discussing options of SBRT , PSMA scan, etc. I have followed your responses to others on this forum and found them very helpful

This article might be of interest to you:

Optimal Management of Oligometastatic Prostate Cancer Remains Unclear

renalandurologynews.com/pro...

Charles

whitebird
whitebird in reply to ctarleton

Thanks Charles for the link to this article. I actually am going to see a MO at OHSU Tues.

ctarleton
ctarleton in reply to whitebird

I saw Dr. Thomasz Beer at OHSU in 2014, before seeing the folks at UCSF, which is closer for me.

ohsu.edu/providers/tomasz-m...

Charles

I don't think you are being too hard with expectations of the amount of care available to extend your life. If you were not "hard", then what would you be, "soft", and thus die earlier than otherwise.

It seems your Psa is very low, well suppressed by Lupron, and maybe Psa stays low for some years. But of course maybe Rodger has gone permanently soft, and could not go hard even with viagra, but I am guessing what might be too difficult for you to discuss, because so few men want to talk about sex after treatment for Pca. After 5 years of ADT, I became totally sexually exterminated. For the most luridly attractive and sexually arousing situations, Rodger stays soft, before going this way, I lost any ability to climax, and the skin join between head and shaft became so fragile it would sometimes tear and bleed, even when I didn't put a hand near it. Before becoming soft, it shortened, with some of the spongy tissue that fills with blood to get a hard on became clogged with fibroids, so when if did harden, only 1/2 th length, less girth, and with curve towards toes and like a brass garded tap spout. But years after that became a fact I still get "hard-ons" in early morning, but not for long, and there is absolutely no pleasure possible.

I have not been married for 40 years since a young wife vamoosed late one night. Sex is a bit of an overated thing, but while young ( under50 ), it is extremely important, and no man would ever succeed to date & marry any lady if he could not do the regular business of letting Rodger enjoy the company of Fanny.

But what of returned soldiers who stepped on a mine or had IED blow up beneath them and they thus have had all their sex parts blown right off? Many are married, and not all are a dysfunctional mental case, so some how they and their wives get over the problem. Love is part of it, but maybe being very caring with a vibrator is the other part.

I'm 71, and my mind ofter drifts to "what would she be like in bed?" when I see a nice looking lady between 18 and 78, and so all th ADT has not changed my mind. Desire for sex remains, but a much stringer desire for a partner remains, but I know I just must squash all such concerns, its most impolite to bring up such subjects with anyone.

I see older couples where thre lady stopped wanting sex at 45 due to menopause, and the fellow just finds time to be alone with himself. Groucho Marx once said "Masturbation has a lot going for it, you meet the best class of people".

IMHO, self love beats going to a sex worker. But then I never ever went to one. If I want to ride a bicycle, I need to own the bicycle, and it has to own me. Same idea has always applied to females. So now sexuality does not mean anything for me. It appears whatever else in life there is supposed to be than may be called love and care just don't exist; no woman is going to look at me and find me desirable as a partner.

I am just a bald headed, chemo damaged, cancer riddled old man sexual attraction quotient = -69, well below the "normal" range score of 1 to 100.

Luckily, I found more pleasure on a bicycle and doing craftwork to please a wide range of humans rather than chase females around. Not being a Full Man does not matter.

So at the moment, it seems your Pca is well "managed", but definitely not cured.

If Psa rises when Lupron stops working, and there is little doubt that it will stop working sooner or later, then you have Lu117, Ra223, Actinium 225 and goodness knows what else will become available in coming years.

Because Pca has no cure, all that can be done is to slow down its progress. Hence the sequence of treatments which usually begin with RP. Maybe 50% of men get a permanent fix, Ie, Pca never continues on after the RP. The surgeon must be top class to allow a man to have no ED and to have full continence. Men who have the op and no more Pca will never post here. Nothing to post about. But 50% have ongoing Pca progress after their RP, so they like to know what to do about it when it happens, so posting here is a mine full of information. Some men last 25 years after diagnosis, some only 3 years. Some get a very long time of ADT effectiveness, maybe 20 years, others get 3 months, so your journey details will be different to everyone else's, but we all have the same cancer, and the common factor binds us.

Much of what is available now, Lu177, or say Provenge immune therapy is extremely expensive of you have no money, and your net worth is $1,000. But it all is extremely cheap if your net worth is $2million. If someone has that much dough, I have no sympathy if he complains about medical bills for Lu177 which might be $50,000.

One has to learn to part with dough for medical bills to lengthen life.

Its no use feeling pissed off because a doctor earns outrageously high wages.

I have had 3 chemo shots, and it may not reduce Psa. After first chemo, Psa rose from 12 to 36 ( the Beast roared at me and the docs ) an then went down to 26, and 3 weeks later was 27 and if it remains at 27, it means Pca is not being held back and I could expect Psa to rise very fast when I quit Chemo. So I should book the date for Lu177 or maybe Ra223 after Chemo 4, and it takes 6 weeks to begin Lu77 from time of booking, ie, acceptance by Lu177 clinic as suitable patient following referral from my onco.

But at least the chemo is probably killing some Pca cells. I have some in viceral soft tissues, and they often lessen with chemo, but I have countless bone mets, and chemo is not so good with bone cancers.

I can pay direct for Lu177, but there is also a trial for either Cabazitaxel OR Lu177, and this is free, and if one don't work, they switch you to the other, and if both don't work I'd have to try carboplatin, abd by the time i progess through one treatment after the other, my QOL is eroded due to side effects. So the treatments can kill you before the Pca.

Patrick Turner.

It’s not clear why you’re second guessing. You’re very fortunate. Whole pelvic radiation plus adt is an obvious next treatment assuming your SRT was just to prostate bed.

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