More questions- after surgery concerns (recurrence, etc.)

worried
My doctor has run the FREE or TOTAL psa test on me for the last 18 months at about a 6 to 8 week span, He should also be checking for testorone levels. I would request these tests.

Donot be frustated. Pain will be there after surgery, from the surgery. This will vary from person to person, there is no set scale here. I found that walking helped me a lot, One item to keep eye on is depression, watch for this because it will most likely happen

Hang in there and take it easy, go to dinner with your Hubby and spend some quiet time with him.

Kurt

lewvino said:

It does sound like you have
It does sound like you have done your part to educate yourself and prepare. I'm not a Dr or in the medical profession though my wife is a certified Surgical assist in Labor & Delivery and I have two children that are 2nd year med school students.

Your list of concers are very valid. Being able to look at the entire prostate will show the 9 or 10 as you have mentioned. The symptoms are real and may or may not be related to the PC. Though at age 57 is worrisome. (I'm 58)

Different docs of course order different tests on the PSA so make clear what you would like. Make sure and use the same lab for each test. They have an ultra sensitive test on the PSA that you might want to consider using. It measures to a different decimal precision that the standard test. At times you have to be the ADVOCATE For your health and your husband's health!

The MRI may or may not show mets. I've read many stories of men with high psa's that after surgery still have PSA Rises and yet doctors are having a hard time to pin point where the mets are at. One man I know and have talked to had his surgery 1 month after mine. Also a gleason 7, PSa keep rising, had radiation...PSA is still rising. So far they have not found out where the 'cancer is hiding at' this time.


After your hubby recovers from the surgery (Are they doing open or Davinci?) they will most likely recommend radiation to the prostate bed pelvic region being a Gleason 9. THis will help for any cancers that are in that immediate area. However if the cancer has escaped to other areas then they typically have to wait for a met to show to determine where to radiate.

The URO is correct with surgery being a first line of attack. They can perform surgery after radiation but its a very complex surgery due to scar tissue.

Its ok to get Frustrated..believe me I was scared and frustrated also! If you are a member of a religious organization don't forget prayer, meditation or just therapy talking to others. For me prayers from others and my ability to talk to a close friend and attend a support group were key!


lewvino (larry)
age 58
Gleason 7 (4+3) Pre surgery 3+4 7 (Slight downgrade post surgery)
Davinci Surgery - Vanderbilt 2009
PSA's - 0 since surgery
Positive margin noted during the review of the entire prostate post surgery but so far so good!

Signature of Hubby
Worried wife

The “signature” of Hubby’s stats may explain his doctor’s decisions. In this case surgery is done with debulking intent to try to contain the cancer spread. His Gleason grade and score are for highly aggressive types known to cause recurrences and that in young patients takes doctors to aggressively "attack" the cancer. I agree with Larry, most probably his doctor will recommend a continuing protocol with radiation (RT) or the combi of HT + RT.

The positiveness in his diagnosis is the negative image studies in the presence of a high PSA (73.76 ng/ml). Traditional CT and MRI usually do not miss cancer at these high levels, unless the tumour is hiding in far places (falling out of the range of the “picture”).

I think that the “firm” DRE justifies the voluminous cancer found in the 8 positive cores out of 8. After surgery the pathological report will reveal other findings such as existing BPH which may be the cause for the urination frequency, or any extra-capsular extension.
Hopefully the surgeon will dissect lymph nodes during surgery. I recommend you to discuss with the doctor about the operation protocol, now, because DaVinci may not include removing nodes (it is typical with robot operation) and Hubby should get some out for proper “diagnosis”. I recall reading that doctors must stop the robot while in operation to use their hands to dissect some nodes.

Other symptoms you mention could be due to neuropathy which is not rare in voluminous PCa cases. In any case, your comments regards the bone structure and it would help to find out about osteopenia/osteoporosis with a DEXA scan (urologists never request this test in young patients).

Regarding your questions;
Tests after surgery, Free PSA and PCA3 are not performed. There will be no prostate gland in place so that any PSA would come from tumours else were. I think that Hubby should do a Testosterone test which matters a lot with PCa and with any future hormonal treatment.
It is typical to get the first PSA at the two weeks mark (post op) followed with periodical 3-month tests. The body requires approximately ten days to “cleaning” (drain) dead cancerous cells.
A low level PSA below 0.06 is regarded with success from the surgery and if such is maintained then they call it in “remission”.

Image studies will become part of Hubby’s follow up testing. Post surgery they are performed but at a later date if recurrence becomes apparent. Newer contrast agents and techniques have shown promising ways to find metastatic cancer. You may search in the net for MRI-Feraheme that identifies metastases at the lymph nodes. Other contrast agents (C11, F18, etc) discussed in this forum have shown success in finding cancer in soft tissue or bone but they all are subjected to the size of tumours that usually produce levels of PSA above 2.00 ng/ml.

Relax and be confident. Give time to things to happen and act accordingly. Hubby will have many ways to “fight” the bandit, if in fact the surgery does not “kill” it first.
I hope he has a successful surgery and quick recovery.

Wishing you both peace of mind.

VGama

worried
As a lay person I completely agree with Kongo.... when a man receives more than one treatment, he can suffer the side effects of each of these treatments. it is very possible that your husband will be in this position.

Also you posted to another woman tpo help her husband get the help that he would need, "You need to use a bit of tough love right now and get him the help he needs."

you also say, "I've accepted that. Putting things out for him to read, more discussions, etc. would only anger him. NOT going to do that."

I don't know what your interpersonal relationship is like, however, I would rather be the recepient of anger than a peson who I love, suffer the consequences of an unneeded procedure and the potential side effects. Of course the choice is up to you.

Swingshiftworker said:

You've Got A Week
I agree w/Kongo and Hopeful.

Surgery is not necessarily the best approach at this point. If the cancer has already spread, removing the prostate does not reduce the risk of further spread BUT does substantially increase the risk of other debilitating side effects. Radiation treatment (usually IMRT) in combo w/hormone treatment should be sufficient to attack the cancer originating from the prostate and chemo is the only treatment available to deal w/the rest (until it concentrates in another specify body organ or area).

I strongly urge you (and your husband) to read the following article, which fully explains the potential risks of prostate surgery and why it is not always in the best interests of the patient to agree to it:

http://www.hifurx.com/prostate-cancer/prostate-cancer-after-effects/

You've still got about of week to change (or at least postpone) the decision to go w/surgery. I suggest you take that time to more fully investigate the risks of surgery and the alternative methods of treatment available before the decision is no longer reversible.

Good luck!

Proactive
Sorry for your Hubby condition, But now we have to be proactive against this cancer. I agree with all of the above comment's. You need to look forward at the place your being treated and how they treat you and your hubby! As my condition 7out of 12 4+5 the cancer got into the Lypmh nodes and only the Lypmh node. Thats two years ago, because I used a great cancer center called MD Anderson and they keep a close eye on me every 3 to 4 months. I think I will be here for 10 or more years and think that is good for the type of cancer WE have.

Good luck

God bless!

laserlight said:

worried
My doctor has run the FREE or TOTAL psa test on me for the last 18 months at about a 6 to 8 week span, He should also be checking for testorone levels. I would request these tests.

Donot be frustated. Pain will be there after surgery, from the surgery. This will vary from person to person, there is no set scale here. I found that walking helped me a lot, One item to keep eye on is depression, watch for this because it will most likely happen

Hang in there and take it easy, go to dinner with your Hubby and spend some quiet time with him.

Kurt

Kurt di you do a free PSA
Kurt did you do a free PSA post surgery? WOuld that matter since you have no prostate?

Worried,
I saw that you have
Worried,
I saw that you have been over on the other forum and posted your question there also. Between the two forums you have received tons of advice. As you see each person has a unique opinion to share! So now you have to decide what if anything further you will do.

Of course support your hubby and get yourself support that you need. None of us know the true outcome of what will happen with his decision but EACH OF US WISH YOU TWO THE BEST POSSIBLE OUTCOME!

lewvino

more questions
Go to page 4 6-29-12 PSA now less than 0.01 was 110.To much to write again but my psa was 110 gleason score 9.everything about same as your husbands.Psa aug.29 2012 still less than0.01 feeling fine no side affects from surgery and later radiation.Never took any pain pills and no incntinence but sexual effects.I was referred to DR. seth Lerner at Baylor Clinic in Houston after other surgeons said it was to dangerous to operate. a friends Doctor called me and said the same thing you have been told if you have radiation and cancer comes back there isn't much left for acure. Please read my case and I think it will take some of the worry off. Hope your husband does fine.He will be in my prayers as I think prayes got me this far.