Frustrating...PSA results!!!!

So I need to vent... AND get some advice.

It's been a while so let me catch you up to speed....

Gleason 4 + 5= 9 -- John Hopkins second opinion ---- one or more of the "4s" actually a "5" -- not sure if that changed it to 5 + 4=9  BUT anyhow...

Surgery was mid Feb. - Dad lost alot of blood ---and had to get two transfusions.

The catheter remained in for 6 weeks (due to a bladder leak). They removed the catheter today.

Initial PSA before surgery was 9.7 (aprox)

PSA test done this week--- post surgery and reveals ----- 5.1 (6 weeks post surgery)....

Doctor indicates the following:

Although 12 lymph nodes were biopsed and were negative ---- he "suspects" and is "concerned" cancer may be in some of the lymph nodes they weren't able to check or get too. His concern comes from the fact that his PSA is still over 5.

He spoke w/another doctor and they are going to re-test the PSA in 2 weeks --- at that time if the PSA is still high and/or has elevated they will begin Hormone Therapy (and it sounds like they would bypass radiation all together).

Thoughts... Encouragement.... Is this normal? 

My thoughts are that "It's only been 6 weeks -- should his PSA have dramatically dropped???????"

The doctor wanted his PSA to be 1.2 or lower.

So is a 5.1 PSA too high for 6 weeks post surgery? Any others experience this?

 

Thanks Fairwind,

That's the frustrating part. They can't confirm that it has spread. They froze 12 lymph nodes in surgery... all were negative. Now they are saying 6 weeks later which a 5.1 PSA it must be in the lymph nodes somewhere they didn't check?

We are so confused--- he's thrilled to have the catheter out (6 weeks seemed FOREVER). However, we are VERY concerned about the high PSA.

They are going to re-test in 2 weeks. Is 5.1 really that high given it's only been 6 weeks? It was stage T3b after surgery.

I'm guessing if it's in the lymph nodes its a 4 now?

Thanks. You may be right - they may have been concerned w/all the bleeding. The doctor specifically told us he took all he could take. He went as far as he could to try and make sure he got as much of the margin as possible.

I guess they believe it's in the lymph nodes then ---- we will wait for the 8 weeks and see what comes about.

Concerned, that is a tough read.

For sure, the purpose of the surgery has failed, and there is still cancer behind. I would not use terms like "blotched surgery" as noted above. That's hardly fair to the surgeon in question here. Bleeding is always a risk, and though not as common as it use to be, it can still happen. The catheter part I understand, my original post surgery catheter went for 63 days, and that was before I had all the other stricture and additional catheters.

Some lymph nodes are so deep down, that there is more risk extracting them, so they check the ones they can get, and if they are "clean", they usually stop. It's also possible the remaining cancer is elsewhere, but at 5.x and above, its significant at this point.

The advice of a top medical oncologisit at this point is critical in my opinion.

I wish him, and you, only the best.

David in SC

So sorry to hear about this... not good news.

Someone on this site once said there is a detailed report that is filed by the surgical team about how the surgery went that is part of your medical record, but not generally given to the patient. I forget what it's called. Ask for it. There should not be any ambiguity as to exactly what happened and whether any of the prostate was left behind due to having to deal with the bleeding. No need to guess about this.

If the hospital messed up and left some PC behind they might owe your dad another surgery to get the rest of it. Don't assume that the bleeding was due to something unique about your Dad's physiology, although it could be. It could also have been due to an error by the surgical team. You just don't know and shouldn't assume anything either way at this point. Where was the surgery done? How much experience did the surgeon have?

If you can't get the report or it is ambiguous or you are suspicious if it's accurate, maybe some other imaging can be done to see if there was any prostate tissue left behind? Ultrasound or endo-rectal MRI are possibilities. I really don't know.

Right now all you know is that this is no longer a "garden variety" case, and if the hospital made a mistake there could be a lot of defensiveness. I would for sure get a second opinion from a top medical oncologist who is not affiliated with the hospital where the surgery was done.

Best of luck to you and your dad.

To 142 - The only reason I brought up the possibility of the "botched surgery" as you put it, is not to be paranoid or conspiratorial, but to be sure that the best next step is being taken. For example, if most of the PSA is coming from remaining prostate tissue, radiation would definitely be in order. If the entire prostate is gone and that much PSA is still being generated, then systemic disease is likely and radiation would be pointless. I would still recommended getting an independent opinion if at all possible.

The surgical notes are part of the patient's rights under HIPPA laws and disclosure laws. You may have to ask your surgeon for them, and sometimes they almost looked like they are in some medical code. I asked for mine, and learned a lot about the complications my surgeon underwent when I had my open surgery.

If there's any doubt, ask for a copy, you can't be refused.

david in sc

Ok we have to move forward on this. proscapt point, at this time is his best hope for a salvage. I t is very possible, that with the hemmoraging, the focus went from getting it all out to stopping the bleeding this is most probably what happened with the other nodes. You would help us a lot by letting us know the experience level of the surgeon, the hospital or medical center it happened,etc. Purg ,we are aware of your respect and affinity for your medical team, so let me slide on this one, if possible. Walsh makes exactly this point on getting the most experienced surgeon you can. He talks about the what ifs, and how the avg surgeon might handle it vs the highly experienced surgeon might. I got the script or whatever you call it with my pkg, did not have to ask, so its there. Its critical you get if you have to get a court order. Get it, make contact with the big boys, John HopKins, sloan kettering, etc, let them read it and they will do all they can, which imo, is alot. I doubt they will go back in, may not be necessary. These guys/gals want challanging cases, like this. Don't email, call, kick, cry scream thru the bueracracy, till you get to person who will help you. Darn I used the quick reply, look for second post, post haste. out of room here.

Purg, my sincere apologies for bringing you into my post that a way, it had implications that were not at all warranted. Don't know what I was thinking. Guess I wasn't, Again Mea culpa!

Unless your doctors can absolutely identify a local reoccurrance through an MRI or color doppler scan and confirmed with a biopsy, radiation will not be curative. A high psa after surgery, negative margins and a high psa is highly indicative of a matastized disease. Radiation is rarely effective as a salvage option once the psa reaches 1 after surgical removal. There are nonograms available that your doctor can use to determine the effectivenesss of salvage radiation. You best bet is now to consult with a medical oncologist specializing in prostate cancer. A list of such oncologists and their location is published in the back of "Invasion of the Prostate Snachers" by Dr Mark Scholz.
Good luck to your and your husband.
JohnT

Thanks everyone.

I have read Dr. Walsh's book. It does seem like HT is most likely the best option at this point. His doctor suggested a hormone shot and them possibly radiation.

I think it's important to note he is not working with one doctor but rather a team of doctor's. They are the best in our area and have been around for a long time. His surgeon is younger but is very sincere and we feel 100% comfortable with him.

I don't think it would be right for us to blame his surgeon at this point. The fact of the matter is he is a Gleason 9 and hadn't had this prostate checked in "years" (not just one). I have to admit I was astonished at the PSA level post surgery. I would have never dreamed it would come back so high.

The most disappointing thing about all of this is PCa appears, on paper to be the most managable and treatable of all cancers. However, for us it does not feel like we are going to get the storybook ending we hoped for. Call me naive but I didn't realize PCa was such a booger to deal with!

I hope the HT (and possible radiation) will at least sustain the cancer for another 15 years!

The bone scan and CT scan prior to surgery were negative. I'm sure the bleeding complicated matters but the doctor actually stopped surgery and brought in a pathologist to look at 12 of the lymph nodes so I don't think he was just hurrying to finish the surgery.

After reading more of Dr. Walsh's book it seems his disease might be "micrometastic" and was probably elsewhere in the body prior to the surgery.

Praying we get better news from the 8 week PSA test and praying that Hormone Therapy works!