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

worriedabouthubby

I thought my signature with hubby's stats would show, but it doesn't. Here's his stats so far
Age 57
First ever PSA due to life insurance 'physical'- Aug. 10 PSA 73.76

PCP repeated PSA and did DRE on Aug. 20- PSA 81, DRE- 'firm'

Uro- did DRE (firm) Aug. 28- scheduled biopsy

Biopsy- Aug. 30 8 out of 8 cores positive Gleason 5+4=9 cores range from 50% to 90% involved (lowest gleason core was 4+3=7)

CT and bone scan on Sept. 5- no sign of spread
DaVinci scheduled for Oct. 9

Hubby chose surgery because URO told him he couldn't have surgery after radiation, but could have radiation/ HT after surgery if needed. Fully prepared for ED, incontinence, etc. Knows uro can't use nerve sparing techniques. Wants it out! Also want to 'really know' if it's contained, 'real' Gleason, etc.

Hubby truly believes scans are 'right'- I tried to explain that they won't 'show' any spread until it's significant- esp. the CT.

There will be no more tests prior to surgery and no second opinion at this time- I've accepted that. Putting things out for him to read, more discussions, etc. would only anger him. NOT going to do that.

My biggest concers are
1-the very fast rising PSA (doubling rate about 8 weeks),
2-high gleason (which I expect surgery will show is really a 10),
3-90% involvement in some cores which to me indicates very high possiblity of extracapular involvment,
4-and sympotms hubby has show over the past year (which he is in denial about)- more frequent urination,fatigue, back, neck, jaw and foot pain.


My questions now are-

Can they do Free vs attached PSA, PAP, PCA3 tests sometime post surgery? I know they will do a regular PSA about 3 months after surgery.


Would an MRI be more likely to show mets than a CT and/or Bone scan? Why / how? This won't happen prior to surgery- but I may push for one sometime post surgery.


What pain (and other symptoms) should I watch for - especially for bone (and other) mets? He doesn't handle pain well in the first place. What I've read so far indicates bone mets are extrememly painful.

Not to brag, but I know a good bit of anatomy - even have a very basic medical understanding, and have taken some biology and pre-EMT/first responder classes in the past- so know advanced first aid and can 'speak' /understand 'doctor' rather well. I know where his lymph glands are - they do swell regularly since his bout with rock mt. spotted fever 8 years ago. I recognize nerve bundles when I massage his feet/legs/back/neck, etc. and can 'follow' his pain. It may sound weird- but I am somthing of an empath.


I just want to be ready and able to help him. Knowledge is power to me. Another 'weird' thing about me (at least in my family)- I'd rather prepare for and expect the worst- then if things turn out better I'm ok. I HATE to be 'blindsided' by 'worse' news.

THANKS SO MUCH FOR LISTENING and for all the advice. I know I sometimes over react to criticism of how 'he' is proceeding. But that is just frustration on my part.

laserlight

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

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!

VascodaGama

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

Kongo

You're right
Worried,

I think your concerns are well placed. Given your husband's diagnosis it is likely that RP is not going to get all of the cancer and that it may well have already started to metastasize at the microscopic level. Removing the prostate is not going to do anything to stop or slow the cancer that may have escaped the prostate gland. My personal, lay opinion is that your husband risks having continence and ED problems PLUS the cancer will continue to spread and require additional treatment down the road such as radiation or hormone therapy.

Your doctor gave incorrect information about not being able to do surgery after radiation but that really isn't the point. It's not cancer in the prostate that is life threatening, it is the prostate cancer that moves to other organs and bones that kills men.

The choice is your husband's but I fear he is basing his decisions without the benefit of a balanced perspective from other experts.

The thing to watch at this point will be the post surgical PSA. If it is above 0 immediately after surgery and continues to rise then you will know that the surgery did not do what the doctor has told your husband it will.

Best of luck to you.

K

hopeful and optimistic

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

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!

ralph.townsend1

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

ralph.townsend1 said:

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!

You have done good job
Worried, You have done a Very good job in preparing and helping your Hubby. The one thing about cancer is the constant unknowns. Everyday there will be new questions with this monster.

I had bad back aches up to surgery, after that it has gone away, I have no answer for this, maybe somebody out there can answer.

The next major item is the pre surgery prep this needs to be followed exactly. I started mine the day before surgery. Your doctor should of already explained this procedure.

The one thing I learned about prostate cancer is that now I take it one day at a time.

Your Hubby is entering into a very intense period, stay with him and support. I know that you will do this, We can all tell that thru your previous post's.

Prostate Cancer is a very difficult and confusing journey. Hang in there keep us posted.

Good Luck Kurt

hunter49

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?

laserlight

hunter49 said:

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

this is good question
I asked my doctor about this, the answer is even with surgery there is chance that some of the pc still might be left. I donot know the medical term here. My doctor does one on me about every 6 to 8 weeks. I have all of my lab reports and he does the FREE PSA TEST. I will ask him again at next visit. The question, if the prostate is removed as mine was, then why is there still psa level.

lewvino

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

mrspjd

lewvino said:

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

Well said
Well said, Larry (lewvino).

"It is a tragedy of the world that no one knows what he doesn’t know, and the less a man knows [or strives to learn], the more sure he is that he knows everything."
~ Arthur Joyce Cary

BLUEpac6

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.

Swingshiftworker

BLUEpac6 said:

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.

Not true!
Sorry but it is simply NOT true that "if you have radiation and cancer comes back there isn't much left for a cure."

Actually, there are MORE alternatives available to men following radiation failure than after a failed surgery. If the surgery fails, the only alternatives are IMRT (or another form form of external beam radiation) and hormone (ADT) therapy.

Surgery following radiation is difficult but not impossible. However, if radiation fails, there's really no good reason to try to surgically remove the prostate anymore given the difficulties/risk of the procedure (not that there was necessarily any good reason to remove it at the outset) and the availability of brachytherapy (LDR or HDR) and hormone (ADT) therapy as alternative forms of follow-up treatment. Cyrotherapy is also possible but it presents extremely high risk of urinary/rectal damage.

See, for example: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1477547/