Geason 9, recurrence?

46 and counting

I joined another site also, so I hope I am not boring people with the story again.  Just nervous.  My husband was diagnosed in 2005 with a Gleason 9, 10 of 12 positive, cores ranged form 10-100% involved.  Mostly 70-90% involved.  His PSA was only 5 at time of diagnosis.

Treated with hormones, radiation, then a chemo study (VA, Stanford doctor).  His PSA never zeroed, but has risen steadily, doubling about every 2 years.  Now it doubled in 8 months (now at 1.5).

He is having a bone scan on June 5, then a CT on June 19.

My concern is how low his PSA was at the start for such an advanced and aggressive cancer.  

I read someone else's post about everyone saying "Well my husband has the same thing and he's fine.  It's not a big deal."  I do get tired of hearing that.  But maybe I am too touchy and over reacting.

I am going with him to his visit with the VA on July 1.  I have had the feeling that none of the doctor's have even looked at his chart or the start of this whole thing.  Perhaps I am just building up an irrational anger.  But we moved to a new state and I want to make sure they look closely at the original diagnosis.  They all kept saying "We don't worry until the PSA hits 2", but I had read in a VA newsletter from some years ago that Agent Orange patients should be looked at closely when the PSA returned to 1 or higher.

A little straightforward honsesty would be nice and not the feeling that we have just been patted on the head.

The waiting is awful.  

VascodaGama

Not "boring" us at all

 

Prostate cancer affects everybody in a patient’s family. I sense anxiety in your post and you should care for you as much as for him.

13 years ago I experienced the same in my home. We managed to calm down anxiety by reading and studying about the matters concerned to PCa. It gave us a great relief once we understood what was happening. My wife and I used to exchange details from our researches and both discussed so fervently as the cancer was part in both bodies.

Instead of seating and listen to others (doctors included) I would recommend you to try to digest as much information as you can obtain in regards to their opinions, pros and cons. That will lead you to proper judgements and to satisfying answers.

 

PSA anxiety is common among survivors. Though a fantastic marker to judge progress and treatment outcomes, many times the PSA just doesn't follow the common patterns. Common sense is necessary to interpret the meaning of its values.

Aggressive cancer is very much linked to high Gleason scores in low PSA environments. It is though that the cells become poorly differentiated so that they cannot produce as much PSA serum as the low or medium differentiated ones (patterns up to 3). Small variations may signify “big” in low levels environments.
Gleason pattern of 5 is the highest and needs to be tackle accordingly. In any case, the treatment is not just decided on the Gleason but on a patient’s clinical and pathological stages. Constant vigilance with tests (lipids and image studies) are required.

Aggressive diagnosis requires aggressive therapies in all the fronts. Your husband needs a team of specialists in which he trusts; however, your husband must take the “driver’s seat”. He needs to be ready for the fight and decisions when they come along.

 

I would recommend you to investigate about the newer drugs available to refractory patients. Here are videos from Dr. Myers that may help you understanding the facts in your husband's case. Scroll the site and you will find about the newer drugs;
http://askdrmyers.wordpress.com/2013/05/22/alpharadin-pca/

You have not shared details of his treatments (type of medication, protocols, etc, and cause of failures) or about the diagnosis of apparent metastases. Is there any symptom (pain)?  What is his age?

Do not despair. Your hubby will tackle the bandit again and knock it down.

 

Let us know more details. Guys here are not doctors but will try to help you in your journeys.

Best wishes.

VGama 

 

46 and counting

VascodaGama said:

Not "boring" us at all

 

Prostate cancer affects everybody in a patient’s family. I sense anxiety in your post and you should care for you as much as for him.

13 years ago I experienced the same in my home. We managed to calm down anxiety by reading and studying about the matters concerned to PCa. It gave us a great relief once we understood what was happening. My wife and I used to exchange details from our researches and both discussed so fervently as the cancer was part in both bodies.

Instead of seating and listen to others (doctors included) I would recommend you to try to digest as much information as you can obtain in regards to their opinions, pros and cons. That will lead you to proper judgements and to satisfying answers.

 

PSA anxiety is common among survivors. Though a fantastic marker to judge progress and treatment outcomes, many times the PSA just doesn't follow the common patterns. Common sense is necessary to interpret the meaning of its values.

Aggressive cancer is very much linked to high Gleason scores in low PSA environments. It is though that the cells become poorly differentiated so that they cannot produce as much PSA serum as the low or medium differentiated ones (patterns up to 3). Small variations may signify “big” in low levels environments.
Gleason pattern of 5 is the highest and needs to be tackle accordingly. In any case, the treatment is not just decided on the Gleason but on a patient’s clinical and pathological stages. Constant vigilance with tests (lipids and image studies) are required.

Aggressive diagnosis requires aggressive therapies in all the fronts. Your husband needs a team of specialists in which he trusts; however, your husband must take the “driver’s seat”. He needs to be ready for the fight and decisions when they come along.

 

I would recommend you to investigate about the newer drugs available to refractory patients. Here are videos from Dr. Myers that may help you understanding the facts in your husband's case. Scroll the site and you will find about the newer drugs;
http://askdrmyers.wordpress.com/2013/05/22/alpharadin-pca/

You have not shared details of his treatments (type of medication, protocols, etc, and cause of failures) or about the diagnosis of apparent metastases. Is there any symptom (pain)?  What is his age?

Do not despair. Your hubby will tackle the bandit again and knock it down.

 

Let us know more details. Guys here are not doctors but will try to help you in your journeys.

Best wishes.

VGama 

 

Thank you, VGama

My husband (of 46 years and counting) is still sort of set in the 20's to 40's where you never questioned the doctor.  He doesn't mind me coming along and asking questions.  (He is now 68).  His original treatment was so long ago it seems like another life time.  He has no pain, and says no symptoms (other than getting up at least 2x a night to use the bathroom).  But this is also the man who lived with major pain in his injured leg (shot in Vietnam) for 40 years before they did a knee replacement.  (He said it had hurt for so long he didn't remember what it felt like with no pain.)

He as diagnosed in March 2005, did 90 days Casodex (Bicautamide) treatment, the high dose EBRT starting in May 2005, finished September 2005.  He then went into the Taxotere study for 3 months, finishing Christmas week 2005. His lowest PSA was .02 in November 2006, and has risen each time since. 

I know I sound ignorant, but I am not sure what results I should be looking at.  Can you list any of the tests that would give me relevant information?

What should I be asking the doctor at the visit?  We are dealing with the VA, and he seems perfectly content there.  But I am not sure that the VA here is the same as the one in Palo Alto, CA.  

VascodaGama

46 and counting said:

Thank you, VGama

My husband (of 46 years and counting) is still sort of set in the 20's to 40's where you never questioned the doctor.  He doesn't mind me coming along and asking questions.  (He is now 68).  His original treatment was so long ago it seems like another life time.  He has no pain, and says no symptoms (other than getting up at least 2x a night to use the bathroom).  But this is also the man who lived with major pain in his injured leg (shot in Vietnam) for 40 years before they did a knee replacement.  (He said it had hurt for so long he didn't remember what it felt like with no pain.)

He as diagnosed in March 2005, did 90 days Casodex (Bicautamide) treatment, the high dose EBRT starting in May 2005, finished September 2005.  He then went into the Taxotere study for 3 months, finishing Christmas week 2005. His lowest PSA was .02 in November 2006, and has risen each time since. 

I know I sound ignorant, but I am not sure what results I should be looking at.  Can you list any of the tests that would give me relevant information?

What should I be asking the doctor at the visit?  We are dealing with the VA, and he seems perfectly content there.  But I am not sure that the VA here is the same as the one in Palo Alto, CA.  

Look for the newer drugs

The increasing PSA is indicative of probable recurrence. Your husband needs to return to the diagnosis process and repeat the tests done in 2005. Though he still got his prostate in place, with benign prostatic cells producing the serum, the fast increase is suspicious of metastases.
I would recommend him to get image studies with T3-MRI capability. C11 PET/ct scan is also recommended and these may not be suggested by his VA doctor. You need to insist in getting the tests done.
Look for a dexa scan too to confirm any bone loss.

If in fact recurrence is set, you should be looking for second line drugs like Zytiga and Xtandi. Surely if the bone is affected Alpharadin is the most indicated. Just search the net by typing the drugs name.

Here are clinical trials using these drugs. Just scroll the site;
http://www.cancer.gov/clinicaltrials/search/results?protocolsearchid=7801130

Overall he will require a specialist in target medication. Probably he can have access to facilities other than VA. Just scroll in the threads in this forum about posts by survivors who got AO involvement as your husband. Search the name of Ralph, etc.

Best wishes in his and your journeys.

VG

ralph.townsend1

Boots on the ground

Sorry for your Husband condition, but If your Husband served in Vietnam or one of the many navy ships in Vietnam.Check the list of AO conditions like Prostate cancer,diabeties II, Heart condition and so on.Go to WWW.VA.gov or www.hadit.com to get the full list of conditions and locations that AO was used . He will be compensated for it and if at his level of gleason scores the cancer is very aggressive.

I use VA Hospital for all medicine like Zytiga/lupron, but all testing is done at MD Anderson cancer center in Houston. With the high gleason scores and a psa above 2, keep a close watch over it. Hope for 0.0!

 

Good Luck, Ralph

Samsungtech1

VA

Unfortunately the VA, all over the country are overwhelmed.  I believe that they are doing their best, but no matter what they do vets just keep on coming.  It use to be that they would send you for x-rays, CT scans, blood work, etc. just for you showing up.  Now mine is so busy they are dysfunctional.  Fortunately, I have other insurance.  If you do not have other ins, then ask Onc, or primary Dr. To refer you to a private Dr.  They can do that.

I wish you both well.

 

Mike

46 and counting

Samsungtech1 said:

VA

Unfortunately the VA, all over the country are overwhelmed.  I believe that they are doing their best, but no matter what they do vets just keep on coming.  It use to be that they would send you for x-rays, CT scans, blood work, etc. just for you showing up.  Now mine is so busy they are dysfunctional.  Fortunately, I have other insurance.  If you do not have other ins, then ask Onc, or primary Dr. To refer you to a private Dr.  They can do that.

I wish you both well.

 

Mike

OK, pardon me if I grind my teeth a little.  After 2 days I had him call the VA for the results of the bone scan.  He listened for some minutes and then said "No metastases."  Good.  What else did they say (he was on for about 5 minutes).  He said "Nothing important.  I don't remember."  So I printed it out yesterday when it posted.  "No definite evidence of osseous metastatic disease.  However oa mild linear trace uptake at L3 needs further radiographic correlation."

Ok, I don't quite take it the same way he did.  But it did prod me to make him get his first bone scans from the hospital in Los Gatos from 2005.  I couldn't understand why the VA said they didn't have anything to compare it to, but then remembered the scan was done by a private doctor.  Hopefully we will have it before next Wednesday when he goes for the CT scan.  Keeping my fingers crossed.

 

Trew

46 and counting said:

OK, pardon me if I grind my teeth a little.  After 2 days I had him call the VA for the results of the bone scan.  He listened for some minutes and then said "No metastases."  Good.  What else did they say (he was on for about 5 minutes).  He said "Nothing important.  I don't remember."  So I printed it out yesterday when it posted.  "No definite evidence of osseous metastatic disease.  However oa mild linear trace uptake at L3 needs further radiographic correlation."

Ok, I don't quite take it the same way he did.  But it did prod me to make him get his first bone scans from the hospital in Los Gatos from 2005.  I couldn't understand why the VA said they didn't have anything to compare it to, but then remembered the scan was done by a private doctor.  Hopefully we will have it before next Wednesday when he goes for the CT scan.  Keeping my fingers crossed.

 

Your husband is in the VA

Your husband is in the VA system.  My dad is 90 and uses the VA and in the last year, treatment is changing.  Seems like the VA is not as, how can I say this, not as pro-actice in addressing health issues as they were in the past.  Maybe  changes from Obamacare?  I don't know.  I do know my dad's VA care has changed in the last 6- 9 months. 

 

I think under the new medical laws coming into existence, we are going to see a decrease in the care given to pateints, particularly as they get older.  Vets may be noticing this sooner than the general population. 

 

That is my opinion.