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3 months after surgery PSA 4.5???

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Posted 8/21/2013 11:46 PM (GMT 0)
Hi Guys,

Great forum, much appreciate all the information! Can someone help guide me to information on a PSA of 4.5 3 months after robotic surgery? Has anyone heard of a post surgery PSA that high? Had a curve ball throw at me...

Gleason 8, Margins clear, Lymph Nodes clear, Seminal Vesicle Involvement present. Just had a CT which came back negative, waiting to hear on the results of Prostascint Scan. I'm sure I'll be on HT and maybe need RT.

I'm trying to get a handle on where I'm at in this, thanks for the help!
Posted 8/21/2013 11:59 PM (GMT 0)
Hi RobO,

Understand your surgery was three months ago. Can you fill in some more about your original diagnosis? PSA level pre-surgery, biopsy results, etc.

Lots of great people here to help. You have come to the right place.

pat
Posted 8/22/2013 12:10 AM (GMT 0)
Thanks Pat, I just added a signature with the info. Let me know if you need more.

Thanks again!
Posted 8/22/2013 12:14 AM (GMT 0)
By the way Bone scan and CT in Feb 2013 were negative, and MRI in March 2013 indicated tumor still isolated to Prostate.
Posted 8/22/2013 12:32 AM (GMT 0)
That's called "Persistent PSA" and it's not particularly good news..My case is similar, G-9, PSA 0.9 at 3 months...

What comes next is usually radiation combined with HT. Find the best radiation oncologist you can who has access to the latest equipment (LINAC). Your chances from here on are 50-50 so seek out the best people possible....You are in a fight for your life here..So you hit it as hard as you can with everything that's available....Best of luck to you!
Posted 8/22/2013 1:57 AM (GMT 0)
https://www.healingwell.com/community/default.aspx?f=35&m=2076472

An older post by Fairwind..
Posted 8/22/2013 2:35 AM (GMT 0)
That is very unusual ----- I don't believe that I have seen that before on this forum or any other. Your current PSA at 4.5 is actually higher than your pre-operative PSA of 3.5. I find it difficult to believe that removing the prostate has had no effect at all on your level of PSA. That is remarkable given that margins were clear and local lymph nodes were negative despite the fact that you were given a Gleason 4+4=8 (Tertiary 5?). My first move would be to have that PSA test run again to ensure somebody has not made a grievous error ------- it sure would not be the first time we have seen that happen. If it is confirmed then HT would seem to be on the cards.
Bill
Posted 8/22/2013 3:17 PM (GMT 0)
I vote for a retest. If it comes back high again you've got more work to do. If it is confirmed you'll need to think about radiation and/or HT to bring it down.

But I do find the test result very suspicious so in your place I'd want the result confirmed before I did anything. If I am reading your numbers right - PSA went UP as a result of RP. That defies logic as the expectation is the other way.

Hang in there - there has to be an explanation.

Andrew
Posted 8/22/2013 3:31 PM (GMT 0)
Yes, definitely add a radiation oncologist to your team, even if it turns out radiation is not currently necessary.

My opinion is that everyone with advanced PCa should have a team quaterbacked by a medical oncologist and comprised of a radiaition oncologist, and two urologists (2nd opinion always a good idea) and not all from the same practice. The more from a national PCa center the better. In theory the MO is least biased on the question of surgery versus radiation.

First order of business is a re-test as the metrics defy logic.

Good luck and keep posting as you find out more.

Rob, you did not say where in CA but with the number of members on HW forum, I am sure someone can point you toward doctors in your area they have had good experience with, if you are more specific.

LupronJim
Posted 8/22/2013 3:39 PM (GMT 0)
Thank you gentlemen! Yes this is very odd, my PSA is higher 3 months after surgery than before… I took two PSA test within 4 days, one with my urologist and one with my oncologist, both in the 4.5 range. They are both baffled. To add to the mystery I just received results of the CT and Prostascint Scan I took in the last week, both are negative. I am following up on the possibility of Heterophilic Antibodies being involved.

My question at this point is what would cause such an elevated PSA after surgery? Can prostate cells grow that fast? Could an area in the prostate bed outside the scope of the surgery have a sizable tumor in it? If yes to either how likely is it to be missed on the CT and Prostascint scan particularly since it is throwing a 4.5 PSA?
Posted 8/22/2013 3:58 PM (GMT 0)
Thanks Jim! I’m in Central California. I have my local urologist and oncologist, I had some mystery blood clots in my lungs 2 years ago that I didn’t know about and currently on blood thinners. My oncologist has been a part of the process since the biopsy. My robotic surgery was conducted by an urologist at Stanford, and I consulted with a Stanford Radiation Oncologist prior to electing for surgery. Now I need to figure out whether to go with the recommended local radiation oncologist or head back to Stanford, about 2-2.5 hours away.

I’ll keep you updated! Thanks again for the support!
Posted 8/22/2013 4:25 PM (GMT 0)
Welcome Rob,

We (mswampuscat posting) were in somewhat the same situation post surgery with a higher post-op PSA. It scared us, especially when our local Uro in Illinois stated "What's going on here?" Fired him. It took us almost 2 years, but we finally found a medical oncologist team we can trust.. in California!
Yes it is unusual, but in addition to us, myman, paxnova, to name a few, have had persistent PSA. You can search back in the threads for their stories. In retrospect, we probably should have had Radiation as our primary treatment, but we were not as informed as we are now.
The GOOD NEWS is scans are still clear for us, HT knocked that PSA out of the park (threw us a few foul balls too!!), we have a plan thanks to Dr. Lam, and we are LIVING LIFE above Cancer, Every day is a bonus, and We're gonna beat this cr@p.
You do need to find the best (impartial) medical oncologist who specializes in PCa who can guide you to a treatment plan and you need to read and learn all you can about this beast. This forum has been a great place for that.
We are by no means as smart as most of the posters on this forum, but we have learned so much here.
Keep asking questions, email us if you want. We're all here for you. And hey, we'll be back in LA next year for our next Dr. appt. not a bad place to visit, especially in January

Marie (and Jim)

wink smilewinkgrin
Posted 8/22/2013 4:28 PM (GMT 0)
HEy RobO

Sorry to hear your news but please know that this does happen and there are others in the same boat. Mrs Wampuscat is replying to you as well so you are getting a double message from us. I was dx in May of 2011 with a gleason 7 and a psa of 6.7., Had robotic surgery with a great surgeon at Henry Ford in Detroit and 3 months later my psa had increased to 6.9. You can go back and read all my posts starting in the fall of 2011 and my signature below. I just want you to know that life is good--(in many ways better than before and I've had a good life overall)

In my situation, the "horse was already out of the barn"-anotherwords, my pathology report found SV invasion and one lymph node positive. HT got my 6.9 down to undetectable after a year and I've been off it for a year. Not likely to find a cure and more treatment of different sorts will be needed to keep things in check. In my case my new Prostate Onc( in CA!!!!!!!!!!!!!!!!!!!!!!!) says no radiation. Presently on avodart, metformin and a supplement -see sig. and will start HT again when my psa gets up to 3 (presntly at 0.911. My new Onc., Dr. Richard Lam of the well known duo, Scholz and Lam in Marina Del Rey, CA. We've fired a couple of local docs here in central Il. as well as Chicago. I'm wondering how close you might be to Lam.

As I said life is good and I plan on living many wonderful years in retirement (beginning next July) If you would care to talk to  us or have any questions, just let Marie or I know.

Take care

Jim

 

Posted 8/22/2013 4:36 PM (GMT 0)
FYI-- links to (i hope)
PaxNova
www.healingwell.com/community/default.aspx?f=35&m=2427468

myman
www.healingwell.com/community/default.aspx?f=35&m=826731

wampuscats
Posted 8/22/2013 4:47 PM (GMT 0)
Rob,
You have to look at the possibilities and eliminate them one by one.
The only things that can cause that high of a PSA is:
1. large amount of prostate tissue left behind. Unlikely
2. Cancer in the prostate bed. Likely with extra capsular extension. Unlikely to throw off that much psa.
3. Cancer in the lymph nodes. Most likely and would go along with with seminal vesicle invasion. Lymph nodes infected by seminal vesicle invasion are not the ones readily sampled in surgery.
Imaging like Color Doppler or multi parametric MRI to the prostate will eliminate or confirm number 1 and 2.
A scan like C11 PET scan or Fereme at Sandlake can confirm or eliminate #3.
Radiation will help both 1 and 2, but will not impact #3 which is the most likely cause.
Good luck. Radiation, unless it is full body radiation will not impact lymph node cancer and will cause more side effect and is usually not effective when psa is greater than .5.
Good luck.
JT
Posted 8/22/2013 5:24 PM (GMT 0)
My Dad's situation was similiar to yours but he was a G9 (5+4) at that. His doctor skipped radiation because of his incointence and along with the fact he was on catheters for several months. They went straight to Lupron. Lupron worked for a while and now he's on Zytiga and by all CT and Bone Scan accounts its doing what it's supposed to. PSA is slowly rising but bone scans have been stable and CT scan only shows 1 lymphnode which is staying about the same size.

My guess is they'll give you the radiation option or opt to suggest Lupron right away. Make sure you have a good doctor and opt for a respected oncologist - they seem to treat much differently than urologist.

Hang in there!

Posted 8/22/2013 11:06 PM (GMT 0)
Rob,
I have to comment on John T's post

#3, local lymph nodes in the illiac and inguinal regions can respond well to IMRT radiation. Most radiation oncologists can hit them effectively. It's not in all cases but for many it can be effective.

But John has laid out a great approach that should probably also include hormonal intervention right away. A typical approach says start the HT now, and see the response while getting prepared to start radiation in a month. You can always back out later on the radiation. But the HT now will tell you a lot more. The likely response will be to get zeroes on the PSA. That would be good for clearing the way to IMRT. If you don't zero out then maybe radiation won't be as useful.

Still you gotta try to stay positive. It helps. You have something going on there that will require more extensive therapies and the best thing to do is get acquainted with them. Good luck and stay close. There are some terrific folks here also dealing with this disease at all levels of it.

Tony
Posted 8/23/2013 6:12 PM (GMT 0)
Maria & Jim, Thanks for reaching out, it’s good to know I’m not the only one with a crazy post-op PSA. In hindsight radiation probably would have better for me as well, but there was no way to know based on the pre-op test and scans. Thanks for the links, I’ll go through them and e-mail you if I have further questions. I’ll check out Dr Lam, Marina Del Rey is only about 3 hours away. Also I love the attitude, “LIVING LIFE above Cancer”! Thank you!

Concerned4You, thanks for the support!

JohnT/Tony, Thanks for helping to explain what could be causing this. In addition to the CT and Prostascint scans (which were negative) I have a nuclear bone schedule for next week. I see my Oncologist this afternoon and will most likely start Firmagon. When I spoke with the Doc he mentioned, as you suggest Tony, start HT immediately and tentatively plan for IMRT in a month or two. I’ll know more this afternoon.

Everyone, thank you for your thoughts, experience, and support! It is much appreciated, I’ll keep you posted on my progress.

Rob
Posted 8/23/2013 6:28 PM (GMT 0)
"Spurious " was the word given to a psa of 33 6 weeks after surgery, it had been 11 prior. Now, a year later it still baffles me, but with 8 weeks of radiation and a year HT the last psa test was <0.1. With the info from this site you get to see this disease play out in all sorts of ways.
Posted 11/13/2013 8:35 PM (GMT 0)
Hi Everyone,

This forum has constantly been on my mind, and I’m very appreciative of the support I have received here! I want to give everyone an update. As suggested in this forum I started HT and it knocked out my PSA. I began 42 sessions of radiation, with 10 more to go! On Oct 2 my PSA dropped to less than 0.05 (lab min.) and it has been there since.

I stopped Casodex after 2 weeks due to elevated liver enzymes, 2 weeks later I stopped alcohol and anything else that would irritate the liver. Enzyme levels dropped slightly, but not enough. The Doc figured it was the Firmagon and switched me to Lupron, 2 weeks later enzyme levels dropped significantly. As long as the liver settles down I will be on Lupron for at least 6 more months (10 months total), then will determine if, when, and what I need to continue.

This has been a wild ride, but both my Oncologist and Radiation Oncologist feel the cancer was insolated to the prostate bed and there is a real good chance HT and IMRT will knock out it completely!

On a side note, right in the middle of radiation and 6 months after surgery my ED issues are finally resolving themselves! With the help of Levitra it’s just like pre-surgery!

Thanks again!
RobO
Posted 11/13/2013 8:48 PM (GMT 0)
Thanks for checking back with your good news. Sounds like you are really making progress. Keep it up. And, when you have a minute, keep us posted.
Posted 11/13/2013 8:51 PM (GMT 0)
Oh to have post surgery erections again! Good luck brother!
Posted 11/13/2013 8:52 PM (GMT 0)
That's great news and great progress.

Looks like you're well on your way to beating this thing.

Keep us updated on your progress.
Andrew
Posted 11/13/2013 9:48 PM (GMT 0)
Great news. Hope you've nailed it!
Posted 11/14/2013 12:04 AM (GMT 0)
Honestly don't want to rain on a parade. I do not understand how the medical team can say it was confined to prostate, when the seminal vessels were found to have cancer. Ask them that question and gently remind them you are an intelligent man and want to know what they know. The svi is the reason they put you on HT and why the psa was 4.5 post op. They knew that and should just give it to you straight. The fact that they removed the seminal vessels, standard procedure in prostectemies, does not mitigate the prognostic significance of the SVI . Again I believe they knew that and are responding in the correct manner. I think you should be aware of my point of view on this and do what you want with it. A forum has many point of view and different POV's are accepted or rejected. Good Luck, I think all of us agree the that you are in a very treatable position, so live long and blah blah… tee hee
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