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Very high PSA after surgery- What options to consider?

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Posted 11/26/2012 3:14 PM (GMT 0)
My husband's first post-op PSA was 3.8. From what I've read that seems VERY VERY VERY high after surgery.  

His bone and ct scans will be repeated this Wednesday.  But we can't get in to see the Uro until Dec. 7.  He has already told hubby (over the phone) that he'll give him 'a hormone threapy shot' at that visit and we'll discuss other options then.  I feel this is moving VERY slowly.  I know- I'm impatient.  I want to suggesst to hubby that he try to see a medical oncologist ASAP.  He has only seen the URO so far. 

His pre-surgry doubling rate was 2.14 months.  But that was calculated with only 2 PSA readings, about 2 weeks apart (73.76 on 8-10 and 81 on 8-20)  Even though the first scans  were clear, I strongly suspect that he has micro-mets in his spine and possibly legs (due to pain there over the past few months).  Though his Gleason was dropped from a 5+4+9 to a 4+5=9 in the path report, I know we are dealing with VERY aggressive beast. 

Apart from radiation and HDT, does anyone know if Chemo or other options will even be a possiblity?  I think I would be more comfortable with a more systemic approach than radiation.  I just can't convince myself that it is confined to the prostate bed, or even to the pelvis. 

I'd appreciate any suggesstions on what I should research.  I like to approch things well armed with info. 

Posted 11/26/2012 4:25 PM (GMT 0)
worriedabouthubby,

I strongly suggest he see a medical oncologist experienced in prostate cancer. A Lupron, or similar drug, injection at the next appointment is definitely appropriate. Many doctors would put him on Casodex prior to the injection to avoid a testosterone flare. Given his stats, my oncologists would have asssumed he was systemic at the time of diagnosis. You can puruse my signature to see how I approached my situation. Hang in there!

SC

Posted 11/26/2012 4:48 PM (GMT 0)
Sorry about the PSA. It is too soon for chemo. HT is typical treatment. Also radiation would be a common treatment I'm thinking. Thinking you should meet with a radiation oncologist. Radiation works best with HT if I remember.
You could also modify the diet and take some supplements.
Good luck.
Posted 11/26/2012 5:32 PM (GMT 0)
A medical oncologist would be the next logical step. The HT is a very good plan at this point.

It's distressing that surgery didn't do what you were expecting. Still there are other options but likely it's moved beyond what a Uro alone can do.

You could talk a RO as well but if it's not in the prostate bed then radiation there is likely to do more harm than good.

I'd see what the HT does first and get to the oncologist (likely it will take awhile to get appointment with some one).

Here's hoping the HT kicks it.
Andrew
Posted 11/26/2012 6:04 PM (GMT 0)
I would agree that you are dealing with an aggressive cancer, most likely systemic.....I would be very aggressive in fighting it ( see my sig)..... my thoughts....ADT 3 , staring with casodex for a week or two prior to lupron to avoid any possibility of a  flair.....then in the next next 30-60 start with SRT (numerous trials have shown SRT is more effective with ADT)......plan on staying on ADT3 for at least 12 months. I would also consult with one of the well known Pca specialists...Myers, Schlotz/Lam,Sartore....somebody may have more ideas depending on where you live......there is a lot of different opinions, but if you get a Pca Specialist it will help immensely ( I have a expert at UCSF who is great, but also consult with Scholtz /Lam ...you know "trust but verify")  Low fat diet/minimal red meat, pom juice,VitD, fish oil, curcumin may help.

Terry

Posted 11/26/2012 6:07 PM (GMT 0)
Hi worriedabouthubby,

We can't add much more to what has already been said, but we do want you to know that you're not alone with your post surgery PSA. We've Been There, Done That (with a 6.8 and + lymph and +SV ) and it's a pretty scary, lonely path. The HT has not been bad and we were undetectable after the second shot of Lupron. We know there may be more battles ahead but convinced 'we will all beat this beast!'

Marie and Jim
Posted 11/26/2012 6:35 PM (GMT 0)
I would suggest you see a prostate oncologist Not all Urologists are as informed as they should be. An example, a friend of mine is a Urologist and has 10 urologists who practice under him.
There are many times he has no idea what I am talking about concerning tx. my husband is receiving. He stated that when there is something serious (PCa) he refers the patient to a prostate oncologist. It seems to me that he feels he doesn't need to be so up-to-date. Not sure all Urologisys would be forthcoming with this information.
My opinion for what it's worth - your best bet is a Prostate cancer oncologist at a large institution.
Posted 11/26/2012 6:37 PM (GMT 0)
In my opinion the Uro is done and it is now the principle domain of a very good nedical oncologist who routinely treats more advanced cases than your husband's....a true prostate cancer specialist is now needed.

With his risk profile, I am very urprised that he isn't already on HT as with that level of presurgery PSA and Gleason the probability of surgery being curative had to be zero. An aggressive treatment plan is in order not a series of responses to rising PSA.

Some specialists are introducing Taxotere early (Scholz for one) in high risk cases. Thus it is important to make contact with a great oncologist as soon as possible.....like this week. At the very leaset the Uro could see him today for a Casodex script before starting Lupron/Eligard in two weeks. Making yur husband wait is most unreasonable by the URO, in my opinion. Gleason 9 is Gleason 9. Don't be fooled by the slight downgrade.
Posted 11/26/2012 7:08 PM (GMT 0)
Sorry to hear the bad news. If it were me, I'd at least consider making an appointment at Rochester Mayo for the C11 Choline scan to see if the mets can be localized and dealt with. The C11 acetate scan in Arizona or the feraheme scan through Dr. Myers are also a possibility. With your husbands PSA and velocity, he would seem to be a good candidate for this approach. At least it might let you know if there are a few areas that can be treated curatively. If you're going to do it, you want to act before any ADT so the the test will work.

Hope you find a good medical oncologist to help you out.

Nellie
Posted 11/26/2012 7:32 PM (GMT 0)
Thanks for all the ideas.  I'll be looking into those suggessted.  We live in Charlotte, NC.  Hubby wouldn't even consider going to Atlanta prior to the surgery for a consult. So I doubt I can talk him into looking outside our area now.  I'm going to investigate who is in this area.  If the scans show anything, I'll ve very surprized and very worried.  They showed nothing in Sept.  If it's grown enough to show up now (less than 3 months between scans), then we are looking at something even more aggressive than I think.  Keep the ideas coming, and thanks again. 

 

Posted 11/26/2012 7:54 PM (GMT 0)
I just wanted to mention that the scans I discussed are not the standard, fairly insensitive ones your husband had. These are much more sensitive, especially with a PSA over two and higher PSA velocity. Check out this link:

askdrbarken.wordpress.com/2011/12/25/c-11-choline-petct-scan-dr-eugene-kwon-mayo-clinic/

Best wishes,
Nellie
Posted 11/26/2012 8:09 PM (GMT 0)
Setting up an appointment with a medical oncologist is the next thing your husband should do. With his results it is clear that he urgently needs to do something. What that something might be is less clear. A good oncologist can help sort that out. Don't be shy about asking your urologist for a recommendation.

I see Dr William Berry in Raleigh. He is well respected oncologist and is, himself, a PC survivor. He seems to know his stuff.
Posted Yesterday 12:50 AM (GMT 0)
You are close to Dr Snufy Myers in Virginia. Cases like your husband are his bread and butter. I would be on his doorstep tomorrow. G9 is very serious and needs a doctor that sees it often. As to the scans, the cancer is very active long before it shows up on the scan. You need to get ahead of it and not wait till it shows up. With the high PSA after surgery you know there is cancer in the system, just a question of where. Remember, a G9 gives off very little PSA compared to lower grades. Thus a PSA of 4 with G9 is probably 3-4 times the tumor mass of a G7. A golf ball compared to a pea at his stage. Help him take this very seriously. If he won't go out of Charlotte, at least call Myers, or someone of his stature, and see which oncologists he has worked with in Charlotte. Myers has patients from all over and collaborates with doctors in many areas. Worth a call or email.
Posted Yesterday 2:26 AM (GMT 0)
" I think I would be more comfortable with a more systemic approach than radiation. I just can't convince myself that it is confined to the prostate bed, or even to the pelvis. "

Your thinking is clear and correct..It's time to convince Hubby to consult with a Medical Oncologist who specializes in prostate cancer..
Posted Yesterday 2:33 PM (GMT 0)
Sorry to hear your husband's post numbers have been so bad.

I fully agree that it is now time to drop the URO and seek out a first class medical oncologist with extensive advanced PC experience. Charlotte has a very large medical community and I bet you can find one that fits the requirements locally. Also with DR Meyers so close in Virginia that is also a good choice. If it was me with his numbers I would be calling Dr Meyers already and I live in Alabama. Good luck to both of you and we are all here to support you both.

Terry

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