What to do going forward post RP - Advanced Prostate...

Advanced Prostate Cancer

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What to do going forward post RP

DesertDaisy profile image
17 Replies

Wife here. My husband is 70 years old and in very good health other than having prostate cancer. His doctor is taking the wait and watch approach. His last Lupron shot was in May of 2021 and the plan is to test his PSA every 3 months. When it starts to go up, additional treatment will be considered at that time. The doctor advised us there is an 85-90% chance the cancer will return. Next PSA will be in December 2021. We have asked the doctor about consulting with an oncologist, but he doesn't think it is necessary. We wonder if more aggressive treatment would be better and are open to any thoughts on his situation. Wondering also if anyone here with a similar situation could comment on their personal course of treatment and results.

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DesertDaisy profile image
DesertDaisy
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17 Replies
Shooter1 profile image
Shooter1

After prostatectomy my PSA went up instead of down...I was sent to oncologist for chemo. It worked and I am 71 and 5 years into this trip...

Tall_Allen profile image
Tall_Allen

So you're saying that with positive lymph nodes, he did NOT receive salvage radiation to his pelvic LN area? I don't know what you mean by "return" since he never got rid of it with potentially curative salvage radiation. The doctor you SHOULD be seeing, ASAP, is a radiation oncologist.

BobbyMac07 profile image
BobbyMac07 in reply to Tall_Allen

Yes, if cancer only in pelvic lymph nodes salvage radiation is necessary.After my 2016 Da Vinci had persistent psa - went to UCSF for PSMA scan that found lymph nodes had cancer. Salvage completed Dec 2016 and psa undetectable since.

I listened to Tall Allen back then, on a different board. Thank you TA

tango65 profile image
tango65

Consult with an oncologist specialized in PC and with a radiation oncologist. IMO he should be offered whole pelvis radiation including prostate fossa and lymph nodes as high as possible and 2 years of ADT plus abiraterone.

urotoday.com/conference-hig...

TA is correct. You need a RO now. If there is 1 positive node, there are likely many more. I followed my RP with IMRT and 2 years ADT + zytiga. You'll want to do the same.

I was G9 pt3bn1m0 with SVI, ECE, +margins and 1 of 12 nodes positive.

Good luck!

Poowater profile image
Poowater

It's up to you. Get your doctor to refer you to a MO. If he won't, change doctors. You definitely need an expert who specializes in the disease.

rscic profile image
rscic

Get a Medical Oncologist ASAP & with Positive Lymph Nodes he will likely refer you immediately to a Radiation Oncologist. I am also 70 & had adjunct RT (Radiation Treatment) because the cancer went through the prostate capsule & was recommended even though the lymph nodes were negative. Your husbands RT would be salvage because positive lymph nodes were found.

Justfor_ profile image
Justfor_

I am of the same stage like your husband, only N0 (even my SVI was the left one, like his). 2,5 years after RALP my PSA is steadily advancing. Before entering the next treatment, probably sRT, I will take a PSMA PET/CT to rule out distant metastases,. As already suggested monthly PSA test will give you a more precise indication of his doubling time, a good metric for the aggressiveness of PCa. But, he may be still within the ADT wash-out period which blurres things. Just another reason for more frequent PSA tests. Blind sRT is a very silly thing to do. There are many papers stating occurances between 1/5 to 1/3 where the spot of the remaining cancer is either distant to the irradiation field or local, but not targered in order to spare organs. It is not thus surprising that blind sRT has a success rate of +/- 60% at best (for high risk cases like ours, it can get as low as 40% because the risk of having metastasized to bones, organs, etc is higher). Irradiation is NOT risk free and a PSMA PET/CT can only help to better estimate the risk/reward ratio. Those that may tell you that PSMA is useless at low PSA values are semi-ignorant which according to a the proverbial phrase is worse than total ignorance. The PSMA - PSA mutal relation passes through their individual relations with the type of cancerous cells. There are types of cancerous cells that express PSA and NOT PSMA and equally the opposite, i.e. they express PSMA and NOT PSA. Consequently, the test's sensitivity at high PSA (>10) is very high (in the 90+% BUT NOT 100%) and in the undetectable PSA very low (BUT NOT 0%). Between these two border lines it follows a continous accending trend. Those that place hard binary limits like 0.2, 0.5, 1, etc, only do it for offloading their grey cells from the burden of proccessing. It is far easier for the human mind to decide on a simple GO vs NO-GO binary dilemma than a multi parametric estimation taking into account not only the PSA variable but also its kinetics (like PSADT or PSA velocity), the age of the patient, his treatment history (that changes the composition of the cancerous cells type), technical matters like the sensitivity of the PET scanner, the scanning time, the density of the radio ligant, just to mention a couple already found to have an influence.

London441 profile image
London441

My situation was identical to your husband except a slightly lower Gleason score. Post op my PSA was undetectable but no matter, I was referred to a MO who strongly suggested an aggressive clinical trial which I completed a little more than a year ago.

I am doing well and no evidence of remaining disease so far.

Good advice here on getting him to a MO who specializes in prostate cancer. Whoever he is seeing now is using a obsolete approach that is putting him at distinct risk. Your first chance is always your best one. Move on immediately.

Cancer2x profile image
Cancer2x

Having a Primary Care doc or an Urologist treat advanced PCa is like having an Oral Surgeon do your knee replacement. Caveat Emptor!

DesertDaisy profile image
DesertDaisy

I want to thank each and every one of you who replied to my post. Dwight has read all the comments and we will be calling Monday and making an appointment with an MO and RO at Mayo/Phx. All of your comments and knowledge has given us the push we need to see the MO and the radiation oncologist. Thank you again.

Hailwood profile image
Hailwood

After RP my PSA continued to rise. Initially it was thought to start Erleada/Lupron immediately, but I got a PSMA scan quickly which showed 7 distant Mets in the abdomen and after the result, the Erleada/Lupron commenced. Right now PSA 0.02 and T 0.5. So far so good, but eventually treatments will change.

j-o-h-n profile image
j-o-h-n

Tell Dwight he's alright but to say good night to the never right Doc and see a M.O. who specializes in Pca. Get a good one and run his name by this group in the event someone knows him or knows his reputation. An ounce of prevention......

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 11/07/2021 6:32 PM EST

Magnus1964 profile image
Magnus1964

At the very least he should be getting a Lupron shot every six months. Ask him why not. You deserve an answer. If you don't get one, find a new doctor. Some of these doctors think they are gods.

Run. Don’t look back.

DesertDaisy profile image
DesertDaisy

Hi, wife here. Just want to give an update. We met with the radiologist oncologist at Mayo/Phx this week. He advised that radiation isn't necessary at this point. As a reminder, there was 1 positive lymph node found as a result of the Apr 2021 RP. 11 lymph nodes were removed.

He said he has no way of knowing where the positive lymph node was located and doesn't think it would be beneficial to radiate a larger area than necessary.

His advice is as follows: If and when Dwight's PSA gets up to .2 or .3 (currently undetectable) to see him before receiving another Lupron injection. He said he would most likely want a PSMA pet scan at that point before proceeding to salvage radiation, but there is no reason to scan now, especially while he is still healing from the RP, and to wait for the effects of the Lupron to wear off.

anonymousdady profile image
anonymousdady

Did you know that Lu177 is well tolerated? The most common side effects are a slightly dry mouth, fatigue, and nausea. There may also be a slight fall in the white blood cells and platelets about 2 – 3 weeks after the Lu177 PSMA administration. In India, Lu 177 is available at USD 6500 per cycle.

More info at nuclearmedicinetherapy.in/t...

For free second opinion, you can mail your questions, concerns to dr ishita sen anytime at dr.ishitasen@nuclearmedicinetherapy.in. She is currently the Director & HOD of Nuclear Medicine & Molecular Imaging at FMRI India.

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