PSA after surgery higher than before surgery

Welcome to HW, sorry you need to be here.

That's odd. What did the doctor say about?

However, six weeks post surgery is a little soon to be getting a PSA test. I vote for a retest in another six weeks and see if it's still high. There is a possibility that this is in error so you should get it confirmed.

Even if it is true (which I find very hard to believe) you still have options left. HT should be able to knock down the PSA and possibly some radiation treatments might help. It not a death sentence. You've got plenty of to keep this at bay for many many years.

Andrew

They usually have your first post-op PSA 3 months after surgery.
Maybe it is just too soon to test. Hopefully the PSA will go down by that time.

Bill from Florida

This is not a death sentence, although it is a shocker. I experienced the same back in 2011 and I plan on living another 10 years, maybe more. What's hard is that no one has a good explanation other than cancer is still located somewhere. You can read my signature and see all the details. Just know that even though my psa was more after surgery, hormone therapy has sent it down to undetectable more than once. So sorry for this bad news but find yourselves a good oncologist and know things will get better
soon.
Jim and Marie




sDx@62-PSA 6.7
5/2011 BX: R 6of6+ L 2of6, 3+4
8/2011 RRP@Henry Ford
PostOp:G7(4+3), pT3b,-marg,+SVI,1+LN, 6wk. PSA 6.9:(
11/11 Lupron#1,2,3 -1Yr.
NO RT (out of the barn)
2/2013 on IADT-
C11scan@KU 5/21/13 Clear
Dr.Lam adds Metformim&Avodart
NCT01875250 Prostvac w/Enza.
PSA-5/13 .58 8/13 .911- 10/13 1.610- 12/17 3.44,.
3/10/14-.01 Enza Ends -PSA hit 7.11
1/10/15 MORE enza- PSA to .08 in 60daysomewhere.

adrastea,

What is your husbands age? My husband too had an elevated PSA 6 weeks after RP, although not as high as your husbands. You might be thinking about seeing a medical oncologist soon. They will probably start you on HT (Hormone Deprivation) to lower his PSA.
You may also want to get him into a clinical trial (PET/CT scan) to see if there are Mets. somewhere.
Where are you located?
We are all here to support you!

Good Luck,

BOOGEE

Adrastea,
You may want to consider having your husband consult with a Radiation Oncologist and a Medical Oncologist. Scans might also be in order to get a clearer picture if there is a visible tumor. If not, your husband may be systemic and Hormone Therapy may be able to bring his PSA back down. As you will see from my numbers, I had a very high PSA prior to surgery but was placed on Hormone therapy prior to surgery. I believe that knocked my PSA down for quite some time and then it began to rise again about 8 months later. I am on a new therapy and hope it brings my PSA back down.

Keep up the fight as you still have plenty of options. Best wishes to you and your husband.

Hello Adrastea and welcome. While this is not good news and is serious it is far from a death sentence. But, he most likely does need additional treatment. I also recommend that you and he seek out an experienced oncologist who is expert in prostate cancer. If you tell us your location, it is likely that some of our members may be able to give you a reference.

Good luck and please keep us up to date.

Jim

Got called away from my computer and you answered some of my questions before I got back to hit "submit". I've gone back and crossed out some stuff and added some new bits.

A death sentence? Not likely. It's more like community service. There's lots of stuff he will have to do that use up a lot of his time -- things that were never part of your plans. We have lots of guys here on the forum who had similar results and they have been members here for years and years.

A couple more questions if you would: First, how old is he? and, second, did his post-op pathology report say anything about lymph nodes? Often the surgeon will remove some lymph nodes during the surgery and the pathologist will check them over, too. My surgeon took 17 nodes.

I would recommend that your husband find two doctors to add to his team. He should talk to a Radiation Oncologist and a Medical Oncologist. He may still have a chance for a cure with radiation to the prostate bed (to get what the surgeon left behind) and the Radiation guy can help him evaluate that chance. The medical oncologist is an expert at treating cancer with drugs and chemicals. If radiation isn't in the picture, or if it doesn't work (no guarantees with this stuff), then the MO will help him manage the disease. Most larger cancer centers will have both sorts of doctor. If you tell us where you live -- nearest big city we don't need details -- then we might be able to suggest a cancer center you might look into.

Update (from the additional info you posted): He really, really needs to find that Medical Oncologist. What you describe his Radiation Oncologist as saying seems fairly bizarre. There have been many studies that found that hormone therapy makes radiation more effective for high-risk patients. If the RO thinks the cancer is too advanced for radiation plus hormones to have a chance for a cure (which is possible) then the usual thing would be to question the value of the radiation, not the hormone therapy.

It's possible that what you and your husband heard isn't what his doctor meant to say. Some doctors are not very good communicators and people who have recently received bad news are sometimes too dazed to understand. It would be a good idea for your husband to get a second opinion from a medical oncologist before he starts his radiation. Having another doctor go over his records should help sort out which parts of the radiation oncologist's recommendations make sense.

As for your husband being impotent for life that is possible, too, if the surgery took the erectile nerves, but there are ways to work around that. Once he figures out what he is going to do about the radiation and the hormones we can make some suggestions on that sort of thing, too.

Sorry you find yourself here but glad you found us. Hope we can help.

The urologist removed quite a few lymph nodes and they were all cancer free. The urologist really thought the cancer was confined to the prostate bed and that with radiation Erik had a good chance of full recovery. That is why the pessimistic radiologist and now this high PSA hit us so hard.

I think I have now talked Erik into seeing an oncologist. I sure hope he turns out to be a nicer person than Dr. Brown (our dear radiologist) As a side note, we weren't even interested in discussing impotence with Dr. Brown. We feel fairly confident things in that department are not permanently disabled. At any rate it is the least of our concerns and not something we expected a radiologist would be able to help with. Dr. Brown just had to bring it up and rub it in Erik's face for God knows what reason. He even told Erik that he would still be an impotent man even if he got things working with Viagra. Dr. Brown also called me Erik's ex-wife, even though I introduced myself as Erik's wife and repeated the fact several times. The man is a real piece of work. He is so over-the-top displeasing both in appearance and demeanor that we actually found him mildly humorous afterwards, although we were certainly not amused at the time.

We live in Traverse City, MI. They are in the process of building a cancer center here, but it is not completed yet. In the meantime, we have one practice of urologists, one practice of radiology oncologists, and one medical oncologist who specializes in prostate cancer. All of these doctors have lots of experience and people drive many miles from all the surrounding towns to see them. They are also all overwhelmed with work and we don't get a choice of which doctor we see or get to go get a second opinion.

Please don't anyone suggest that we drive to Grand Rapids. We are talking 5-6 appointments a weeks. We absolutely cannot spend all day everyday driving. Erik is already missing a lot of work but he cannot stop working altogether. He needs health insurance and we need to pay our bills. I have two part-time jobs and two toddlers from my first marriage. There is no reason to believe that the level of care we would receive in Grand Rapids would be significantly better than here (the doctors up here have great credentials) and using Grand Rapids as our center of care would certainly make us go broke.

So many people tell me we should go camp out at a huge state-of-the-art cancer center for weeks or months on end. I know people mean well, but it drives me insane when they throw that out there like a real option. To me that is right up there with flying to the moon and getting my fairy godmother to wave her wand and make the cancer go away. Perhaps living at a cancer center is feasible for someone who is retired from a good job, but Erik and I are both working manual labor jobs and raising little kids.

Sure hope the oncologist is better than your (loony-sounding) Dr. Brown. My husband's first urologist just didn't want to talk to us after the biopsy and bone scans.

You can probably get good care locally (if the oncologist turns out to be a decent guy!), so mentally tell the people who are telling you you have to move somewhere else to mind their own beeswax. (As you say they're trying to be helpful.)

But, you will have to get educated in order to advocate for that good care, and being here is a great way to do that. You can learn a lot just from reading people's .sig at end of posts (once you learn the lingo!)

If you can establish a good working relationship with the local oncologist, but what he's suggesting doesn't match up with what you learn here, a third way to do things is to have a consult somewhere else (if you feel it's needed, which it may not be). The most "politically correct" way to do that is to discuss it with your oncologist ahead of time. Asking his advice on where to go for a second opinion on treatments is a good way to start - most decent doctors will not feel threatened by that at all, especially if you tell him you like him while you're doing it.

In our case, our local oncologist was very curious to know what the big cancer center docs would say. So for us, that's been ok so far.

Good luck and don't give up hope. Antidepressants are good too if you need them :)

Carolyn

It was encouraging to hear you say that the local MO specializes in prostate cancer. MOs who specialize in PCa are somewhat rare. Making an appointment with him as soon as possible sounds like a good idea.

You are probably right that your husband will need to receive his radiation treatment from the local radiation practice because he is tied down with job and kids and such. Hopefully the MO will be able to make sure the overall treatment plan makes sense.

You will probably find that adding a MO to his team of doctors doesn't add that much to his medical-appointment load. The five-or-six appointments a week is for the radiation treatments. A medical oncologist will see him once every three months or so. One of the things you could ask the MO is whether there is someone else your husband should see for a consultation. If you approach them right most oncologists rather like second opinions. It keeps them from feeling so all alone with their decisions. It might be worth one trip to Grand Rapids if your husbands MO would like a second set of eyes on the problem.

And the good news about the radiation treatments is that your husband probably won't need to put up with Dr. Brown that often. Mostly he will see the radiation techs who are generally lovely people in my experience. I only saw my RO once every two weeks.

Thanks, Pratoman, for sharing the story about the man with PSA of 3200 who is still in the fight 10 years later. That was very encouraging.

I wish Erik and our current doctors were all more motivated. It was like pulling teeth to get our urologist to refer us to a RO, (he literally refused the first several times we asked) and the RO has not yet made the referral to the MO even though he promised he would. We see the urologist again tomorrow, so I am going to insist we get a referral to an MO. Erik of course wants to get better and he is eating healthy and taking all kinds of supplements, but he doesn't want to fight for referrals or drive all over the state or spend significant time on research. I feel like I am the only one fighting for him. And frankly I am worn out.

I met Erik right after getting out of a 9 year abusive marriage, and an abusive childhood before that. This past April, I felt like for the first time in my entire life, I was actually in a good place and could take a break from 33 years of struggling. Within a couple weeks we found out something was wrong with Erik's health and it has just been an avalanche of bad news ever since, with things constantly turning out to be more severe than we thought. For some reason, Erik's diagnosis motivated my ex to behave even worse than before and every minute we are not living in the nightmare of cancer we are living in the nightmare of my ex. And then the problems with the doctors on top of that. It really is too much. I wish so much I could trade places with Erik and be the one with cancer. I have spent most of my life wishing I was dead (and yes, I am on anti-depressants), but Erik really wants to live.

Thanks, Pratoman. Erik was really glad to hear about the man with such a high PSA score who was still with us 10 years later.

Next week is Erik and my honeymoon. We have been together two years but just got married on 6/5. Next week is our little window of opportunity to do something fun between surgery and radiation. We are going to try as hard as we possibly can to have fun! It is hard with this black cloud hanging over our heads, but I don't waste this chance.