Newly diagnosed post radical prostatectomy

[Hailwood]

I am 65 and have a PSA of 8.4 after radical prostatectomy in Nov 2020, MRI shows no pelvis infiltration so suspicion are distant mets, PET scan coming up. I have requested surgical castration as opposed to meds, as even loading dose of oral bicalutemide floored me with fatigue and worsening arthritis and I want to still work and ride my Guzzi. Its a different look at life, switching from being an RN to being an RN/patient, and all of the health care professionals I have dealt with have been great. This site is very helpful.

[Shooter1]

The bilateral orchiectomy was right for me... good luck with yours.. no chem cast. for life.

[Hailwood in reply to Shooter1]

Thanks for the information. I think there is enough information out there whereby the increased risk of fractures and cardiac issues far outweigh those from an outpatient surgery, but I will of course be waiting for the results of the PET scan to see if that option is best as of course we could be looking at significant deposits elsewhere. Again thanks for your input

[GP24]

Orchiectomy causes the same side effects as Lupron. So if Bicalutmide already floored you, which I can hardly believe, orchiectomy will do that for the rest of your life and you cannot take a break from that.

[AlanMeyer in reply to GP24]

I think GP24 is right that orchiectomy is a bigger decision than Lupron. If you have bad side effects from it it might be possible to treat them with testosterone supplements but it might be hard to find a doctor who will give them to you and you might not like taking them for the rest of your life.

I don't think you really know yet that the side effects of Lupron will be the same as those of Casodex. They are different drugs and work differently. I suggest that you try it before you reject it. It is normally given in 3 or 4 month doses, but can be given in a 30 day dose. Assuming it takes about two weeks to be fully effective, that will still give you two weeks on the drug to evaluate whether and how serious a problem it is for you.

Lupron will very likely reduce your energy level but that's something that can be combated with exercise and, if necessary, other drugs. I had a desk job (computer programming), so I wasn't doing hard manual labor, but I found no real problem doing my job on Lupron. I did have to exercise fairly hard to keep up my strength, stamina, and alertness (all somewhat reduced by the Lupron in spite of the exercise) but I could still drive an hour and 15 minutes each way to work and back and, when I worked at it, still keep the clear head I needed for work. I drove my car quite a bit and am not wure why it has to stop you from riding a motorcycle.

As for the arthritis, I know about aggravating that can be. In my case, conscientious physical therapy done every day made a huge difference. You may need one or two sessions with a good physical therapist to show you the right exercises for your condition but, after that, it's all something you can do yourself, at home.

Don't despair! Try the Lupron, at least for one month. Exercise, Then get on that Guzzi, ride into the countryside, and glory in the greatness of life!

Anyway, that's what I recommend :^)

Best of luck.

Alan

[Spyder54 in reply to AlanMeyer]

Well spoken words. Great advice.

[Tall_Allen]

It's premature until you have a PET scan. A persistent post-prostatectomy PSA that high indicates cancer somewhere. If still regional, you may only need 2-3 years of ADT. If distant, you will need lifelong ADT, probably along with other hormonal medications.

[Brano975 in reply to Tall_Allen]

I only had ADT 6 months and RT, 2 injections.When applied only 6 monts?

[ARIES29]

Hello Hailwood, My experience with prostate cancer sounds similar to yours & i would offer the advice that if only i would have had castration first i would not have been were i am today, but i opted for radiation which started the Lupron & casodex "tests". I could not stand either of the side effects & went to LU177 which worked for two years only.The Pet scan & your MO will indicate what you should do next.

The best of Luck.

[dac500]

If I were you, I wouldn't rush into Orchiectomy. It would give you the same side effects as ADT. But it would be a life-sentence. With ADT you can take breaks and with 2-3 years of ADT you might get a long remission depending on where the cancer is.

[doc1947g]

On some peoples (like me) it can takes up to 8 weeks before you get the effects.

[TJGuy]

Hold off on the orchiectomy for a while. Get a PSMA scan and or a Choline, Axumin scan as well.

I was 2.3 after my RP. I was told "you must have micromatastic PC throughout your pelvic bones and it's throughout your system"

The world famous hospital then cancelled my planned post RP radiation. Doctor told me "you have aggressive cancer, boy you have aggressive cancer, you have the real macoy". You have terminal cancer, you will die from this you have 5 to 10 years, likely 7.

I sought out other second opinions at other US leading hospitals and found other opinions.

After first Axumin scan. Where nothing showed up. Dr said it can't be in your bones, it would have shown up on the pet scan.

Skipping some details and skipping forward four years.

After a number of scans over a few years with PSA rising up to 3.9 it was found that PC was in pelvic Lymph nodes. I had LNPB IMRT with two years of Lupron/Eligard. I am at 19 months on ADT and 14 months after completing radiation. I have one injection left.

My PSA keeps decreasing with me testing every 3 or 4 months. Currently <0.014

So you still have a lot to find out a lot to do before making any rash permanent deccisions. Take your time. Things may turn out much better than you believe right now.

[Shooter1 in reply to TJGuy]

Wish I'd had 2.3 after RP. Mine was 53 at RP and 63 at post-op check up. Dr said sort of the same, but more so. 12 mo to go, get your affairs in order.

[rscic]

Consider also a PSMA Scan .... at your PSA level PSMA may be more sensitive vs a standard Pet scan.

I agree with Tall_Allen's advice. Know what you are dealing with before you lock yourself into a decision.

[Cooolone]

PSA post RP is not a prescription to rush to treat. First and foremost is tracking PSA doubling time. This has been used fairly reliably to predict distant metastatic disease or agressiveness of your PCa.

Again, PSA alone is a flag, but not necessarily a clear indicator of diagnosis or an ability to prognosticate OS or Progression alone. If the PSA is persistent or rising, Scans can and should be used to get a better picture of what's going on. In addition, genetic profiling be used to determine if there are any agressive markers present that may help design a more individualized treatment protocol.

Lastly, is to remember, that every patient is an individual and just because someone else experienced this or that, doesn't mean you will as well. I was deathly fearful of ADT, until post RP I went through salvage therapy with ADT & RT... And maybe I'm just a rare breed, but the SE's of both were barely noticeable. Fatique being the biggest thing I remember.

So don't rush to fix something that's not broken. As a suggestion, Relugolix is now approved, ie, Lupron in Pill form. This provides a much quicker castrate response, and if there is adverse response, pills can be stopped and the medicinal effect wears off just as quickly. No need to wait out months. Talk to your doctor about it...

Anyways, good luck!

[MateoBeach]

Welcome Hailwood. Let us know what the PET Scan shows and we can suggest more from there. Consider a bone protection/strengthening agent early on, Prolia or Zometa or oral bisphosphonate. Provenge if you can get it approved. There is a clinical trial enrolling for Provenge at BCR I understand. All forms of ADT, including castration, have lousy and wide ranging side effects. Estradiol patches can be very helpful.

What model is your Motoguzzi? I’m an Africa Twin guy.

[Hailwood in reply to MateoBeach]

I have a Griso and a Stelvio

[j-o-h-n]

Greeting Hailwood,

We know some of this info is redundant but other info helps (as an RN you must be used to that).

Please tell us your bio. Age? Location? When diagnosed? Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)?

All info is voluntary, but it helps us help you and helps us too. When you respond, copy and paste it in your home page for your use and for other members’ reference.

THANK YOU AND KEEP POSTING!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 02/14/2021 12:39 PM EST

[Hailwood]

Thanks Lulu. Stay well and thanks for the information about your experiences.

[Hidden in reply to Hailwood]

Thanks for listening .

[Doseydoe]

Everyone is different and there approach to deciding what treatments to have varies. Some take a cautious approach and some take a more aggressive stance. Perhaps because of your RN experience, you are comfortable with a process that involves surgery, fair enough. However, from my experience, the initial fear at diagnosis made me desperate and willing to do what ever it takes to kill the cancer. That was about 12 months ago and now that the fear has subsided, I'm glad I still have my boys. 😎DD.