I am scheduled for a prostatectomy Monday with Dana Faber. My prior PSA scores were 83 and 79. They found no spread on bone scan and pelvic MRI, but they were up front with me that the margins may be a problem and I may need follow up radiation and ADT.
Today’s PSA score was 98.9. I think next step is to discuss postponing surgery, and do a better scan. I think I am headed toward radiation with longer term ADT.
Thoughts?
I agree -- it is highly unlikely surgery will get it all with a PSA of 100 --- and you would be having to do radiation anyway -- i would see about radiating the surrounding nymph nodes at the same time they radiate the prostate.
I would do it. I think removing most of the tumor is better than trying to control these cancer cells for a few years with ADT. After surgery I would continue with ADT and do the radiation when you have recovered properly. Do not let them rush with the radiation.
I followed my doctor's advice and started the Lupron injections and radiation as quickly as possible because after prostate removal surgery I still had a 4.2 PSA, meaning it had spread from the prostate. Early detection and treatment is the key to surviving any kind of cancer.
Thanks - I am pressing to get the entire picture before making any decisions. My current step-wise plan (surgery - then see if there is spread) may not be the best if we know it’s already spread.
Prostate cancer is growing slow. There are studies that high-rish patients can wait even a year between biopsy and surgery and it will make no difference. But this is completely counterintuitive, I know.
So I agree to start with ADT if the PSA value is that high after surgery. This will stop the cancer from growing. Then you can do radiation when you feel better.
Frankly, with a PSA of 4.2, I would expect lymph node mets to be present. If you didn't get whole pelvic radiation, these may not be included in the radiated area.
With a PSA of 99 I would ask for a Ga 68 PSMA PET/CT or an Axumin PET to be really sure that there are not pelvic or distant metastases.
Brachy boost therapy has superior results to surgery, even when followed up with radiation:
pcnrv.blogspot.com/2018/03/...
I don't see the point of going into surgery knowing you will have to have radiation on top of it - the worst of both worlds.
Agreed
Agreed it's a good idea to at least postpone while you explore what Tall Allen recommends--brachy boost therapy. Can you get an appointment with Dr. Paul Nguyen at Dana Farber? I believe he does brachy boost therapy.
I am going to ask to meet with an RO, thank you for the name.
I've heard very good things about Dr. Nguyen. I wish my husband and I had taken more time to explore the brachy boost therpy TA talks about. My husband didn't have the surgery, thank goodness, but ADT and radiation. He was determined to start it the radiation as scheduled when we could've taken a bit more time to explore that third option and getting another opinion. Good luck. Check back in.
TA What is the difference between bracy boost and brachytheraphy?
Mkike P.
Brachy boost means external beam radiation (usually 25 treatments) combined with radioactive implants (brachytherapy) to the prostate only. The brachytherapy can be either "low dose rate" (seeds), which are left in permanently and decay slowly; or "high dose rate", which are temporary implants so nothing is left inside.
Thank you TA. That sounds like the treatment I had 23 years ago. Just a tad more clarification please. The 25 treatments are not to the prostate but surrounding tissue. Correct?
Mike P.
It's one of the oldest treatments - goes back to the 1980s I believe. There have been improvements since then, of course. The external beam field is often whole pelvic but may be smaller.
Again I thank you. Back in 1996 I was told that the treatment was "combined radiation". Appreciate your quick responses!
Agreed
Back in 2012 with a much lower PSA the scans and MRI proved that surgery would be futile. So I went straight to hormone therapy and never looked back. After reading all of these years about side effects of surgery I can’t say I feel cheated. Seven years of Lupron and I’m still going strong, and I’m still hormone sensitive. Good luck!
Da bear!
Cal....
You feel that the side effects of Lupron are better than the SE of surgery??.... BTW... very glad that the Lupon IS still working...
Tommy from what I’ve read about surgery side effects yes, but then I think my side effects may not be as severe as many other patients. Casodex gave me more trouble believe it or not. My doctor dropped Casodex when I moved From Arizona to Florida in 2016. From then on I took just Lupron shots.
What ever you’re going to do . T-A suggests the brachytherapy ,I’d do it ,if it were I. I wouldn’t hesitate or wait to take aggressive action. You’re going to be here for awhile if you take care of yourself from now on. Live healthy ,cut stressors and hold on to what you love in this world. Peace guy. You can do this..
Thanks! What I’ve learned here is TA is the man, and this is a tremendously supportive group of great men.
Hey C-RI,
I would think by your handle and that you are going to Dana Farber that you are in Rhode Island as am I.
There is a men's prostate support group here in RI that meets on the last Sunday evening of the month. The group only started this year and info from this site as well as another is sometimes discussed at the meetings. If you are ever interested let me know.
You are in a good place here on HealthUnlocked to hear of other's experiences to help you make your choices.
I feel TA gave you good advice. The decision is yours to make and live with. Get all the information you can before making your decision.
My best,
Currumpaw
Hey Currumpaw,
I live in MA and would like info on the support group. It may be a haul to get there but helping people through this blasted disease is worth the drive.
You will do what’s best for you..
Any PSA at 4 or above is considered serious, the higher it gets the worse chance that it has spread. If cancer cells have reached the bones then the prognosis is not good. After prostate removal surgery my PSA went down from 21 to 4.2, which made it necessary for me to have 38 radiation sessions and 2 years of Lupron injections every 90 days. The end result is that I have been at .01 PSA and cancer free for the past year.
Definitely talk about all the options. But the benefits of a Brachy+EBRT+ADT over RP and ADT is NOT an established fact, even in the cohort studies (as you see in the text of Allen's link). Dr. Chen (mentioned as a dissident on the Ennis finding) disagrees with this type of studies (for good reasons), but does not discredit the findings (you should read his paper). Point is, discuss both, learn more and decide.
Thank you. Historic data, new developments, lifestyle & personal preference, comorbidity, family situation, and the fact that no two cancers are alike assure that there is no single answer. As many here have said, the key is knowing all of these and making best educated choice for oneself. Then hope you don’t get run over by a bus ....
I had proton plus adt for my contained G 4+5. If I were doing it today, I would have added brachy boost.
You must make your decision...here is what I chose with a 69 PSA. 1st Prostatectomy...then PSA 1.9..lowering slowly to 1.1...after 3 months 37 beams of radiation with little side effects..PSA slowly inching downward for 6 mos..then started to rise from .9 to double. Was scanned where it was determined I had Mets to hip bone..Started Lupron shots(3 month slow release) have been udetectable for a little over a year now with continued Lupron shots and multiple PSA tests! Drs say everyone responds different...best of Luck to you...fight the fight!!
I could not get the operation, because the disease had spread too far. Now I am always wondering whether that has made a difference. Anyway, good luck
I started off with a PSA of 144 and no sign of metastases, I went for surgery and my PSA fell to 2.07 five weeks later.
Post op I discovered that there was slight invasion of the seminal vesicles, positive margins and perineural invasion but the lymph nodes that they took were negative.
I think we got close to all of it, after two subsequent weeks on Firmagon my PSA was 0.27 and after three months less than the limit of detection, I suspect it was at that level before that.
I have had 66 Gy of radiation to the prostate bed as well.
I am now 12 months through an 18 month course of Firmagon
I had the operation which was not bad and I had less radiation as a result.
I hope that debulking the tumour may have left only small and susceptible pockets of cancer cells which I hope have since snuffed it.
Whatever you do it is a difficult call.
Helpful to hear. Thanks. No easy choices - that’s for sure.
Listen to TA ! And get going ASAP!
You are at one of top cancer research hospitals in the country I have been treated there for 14 monthes with good results. I wish my Dr. in Florida had told me that he never got good margins. I found out after reading his surgical note a couple months ago. He took it out Aug. of '15. You are in the right place for this.
upper case means i"m yelling...
ATTENTION!!!!
IF YOU CHOOSE TO GET A BIOPSY, SEE BELOW:
I HOPE YOU GET TO READ THIS BEFORE YOUR BIOPSY. TELL THE DOCTOR TO PERFORM IT UNDER ANESTHESIA BECAUSE IT'S NOT A PLEASANT TEST. MOST UROLOGIST DO NOT WANT TO PERFORM IT UNDER ANESTHESIA BECAUSE IT REQUIRES THAT IT BE DONE IN A HOSPITAL SETTING.
IF I HAD TO IT AGAIN... PUT ME OUT BROTHER... PUT ME OUT...
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 04/10/2019 11:36 AM EDT
Too late I had it done, and the urologist didn’t even buy me dinner.
Had my biopsy in January 2019 woke up in recovery and 20min later they gave me a cup of coffee and some fresh made sandwiches. mmm you gotta wonder lol
Think it might depend on the expertise of the MD who is doing it... My first biopsy was " unpleasant" but not unbearable by any means..... my second was barely noticeable...guy was amazing.... Wonder if your Doc numbed the prostate in advance with Lidocaine?? Don't want to scare the crap out of people who have yet to have one.... it's not always terrible... : )
Surgery makes no sense to me.
I agree with many of the others.
Radiation and ADT should offer a 'better approach', with (hopefully) fewer side effects.
I went that route about 2 years ago and believe it was the right choice.
I also had the pelvic lymph nodes treated at the same time.
Best wishes to you ....
Sorry, I can't help. Never faced with that decision. Too many mets to make it worthwhile to remove or radiate. Like many others here, I would suggest considering Tall_Allen's advice closely. And as he has said himself, we are all guys on the web, you and your doctor are johnny-on-the-spot and know the details. Most where I am at in this journey always suggest to go as aggressive as you can. Avoid being where we are, or slowing it down is the game. Good luck on your choice. And never look back.
Having a PSA of 17 after a clear bone scan and pelvic MRI, my RA said my prostate cancer was not causing that with only 3 little spots ... Did Axium Pet and found lung lesion ... I would doubt very much you have no mets with 100 PSA. Just from my experience which may mean nothing ... but the surgery definitely is not a walk in the park .... best of luck .. get PET SCAN
Hi C-RI,
I would follow the advice of others on this site who have more experience with the radiation route than I. I was put directly on ADT and had six rounds of Chemo shortly thereafter. Good luck and keep positive.
Yours,
Craig
My PSA was 72 when I had radiations. Then with metastases I started Lupron with 30 more radiations. I was on Lupron for 6 1/2 years. I no longer have cancer ad I still have all my junk! I can have orgasms but they are dry. I wish you well in your decision.
Monday’s surgery cancelled, Aximum scan 5/1. Thanks for advice all.
Update
Further treatment - Update
Update
Nubeqa monotherapy update
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