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Husband's PSA 7.8, Gleason 9 - 2nd opinion?

SCHRCH
Posts: 18
Joined: Jan 2013

My husband was just diagnosed with Prostate Cancer with a PSA level of 7.8 and a Gleason score of 9.  We are waiting on results from the bone scan and CT on abdomen and pelvic area last week.  12 tissue samples were taken and 10 were positive.  Tumor is very aggressive per our doctor.  My husband is 62 years old with high blood pressure.  He also has DVT (Deep Vein Thrombosis) in his left leg.  I want a second opinion after I get the results from the bone and CT scan.  They would then have all test results available.  The Urologist wants to remove the prostate but I want  a second opinion from an Oncologist after we've gotten all the results back.  I'm very scared at this point with the levels being so high and am worried sick that it may have gone outside the prostate.  I'm scared to wait but I'm scared to just move forward.

ralph.townsend1's picture
ralph.townsend1
Posts: 350
Joined: Feb 2012

Sorry for your husband condition, but the facts are not good. With gleason score of 9.0 and psa that high 7.8. It was almost like mine. I went for a second opinion and they said remove too.  I got it out as quick as I could. Your husband has aggressive prostate cancer and do not wait to long, are it will get to the bone or Lymph nodes. The CT scan and bones scan will tell all, good luck and God bless.

On the good side, my PC ( Monster) started in August 2008, I'm in my fifth year. MD Anderson cancer center has kept it in my Lymph nodes.

Make sure the Doctor's and surgeon are specialize in prostate removal. In your case RP removal over the DiVinci surgery.

That only personal opinion! The surgeon can see better on a radical Prostatectomy specially with a aggressive PC!

Ralph.

SCHRCH
Posts: 18
Joined: Jan 2013

Thanks Ralph.  I called office today and the scans take 3-5 days so I'm hoping we will get them this week.  We have tentatively scheduled appt with Oncologist on 1/29.  If it needs to come out -- we're ready to accept the decision.  Am glad to hear you are doing well and that gives me hope.  I'm so glad I found this board.  The "hurry up and wait" is hard.   

hopeful and opt...
Posts: 1278
Joined: Apr 2009

I am sorry for this situation that you are faced with solving.

Gleason 9 is very aggressive by definition. PLease let us know what the Gleason score is for each of the cores(i it a 4+5=9 or a 5+4=9), and the invlovement of each, that is what percent of the core is cancerous.

It is important to have a second opinon on the slides by a world class pathologist since deteterming Gleason score is subjective. Also a second opionion on every thing.

In your husbands case where there is extensive cancer found with  aggressiveness cancer it is highly likely that the  cancer has left the capsule so localized treatment such as surgery is not appropriate since you still in all likelihood  require other treatments such as hormone and some forms of radiation. You will be subject to possible side effects of surgery plus the side effects of other treatments. This risk is cummulative

There are additional diagnostic tests that are appropriate; one being a MRI with a Tesla 3.0 magnet that major institutions have available to evaluate if the cancer has left the core. This test is will indicate if cancer is found outside the prostate, where the cancer is in the prostate.

It is time for you to find a Medical Onocologist, the best that you can afford to be in charge of your husband's medical team to treat this "beast". There are about 50 medical oncologists in the united states that specialize in prostate cancer. Let us at the board know where you live, hopefully some of us can refer a medical oncologist

Additonally there are major centers of excellence such as md anderson, johns hopkins, etc. where there are the best facilites on personnel that specialize in this. /

Consider attending a local support group and research research research books, internet

I wish you the best.

 

 

 

SCHRCH
Posts: 18
Joined: Jan 2013

We don't have the core numbers but I will certainly ask for them when we go back in.  So much was going thru our minds at the time that we forgot half of what we were told.    What he did tell me was the there was a 50/50 chance it had left the prostate, a 3-4% it was in the lymph nodes and 12% in the seminal vesicule.  They staged at at a T1C but only because we had only gotten the biopsy at the time.  We live in Woodstock, GA so YES - PLEASE - if you know someone I would be grateful for the info.  Our insurance is with CIGNA.  The 2nd opinion doctor is at the Northside Hospital Cancer Center and he came recommended by another patient.

SCHRCH
Posts: 18
Joined: Jan 2013

He also cannot have an MRI due to having a rod in his left leg.  He also has deep vein thrombosis in the left leg.  Needless to say -- I am very scared at this point.

hopeful and opt...
Posts: 1278
Joined: Apr 2009

results of all tests,etc. so you can bring to any doctor that you might see so they can copy for their records. (you can call the doctors office in the morning and ask them to send a copy of the biopsy written document results to you)

Since this is a highly emotional time, you can ask each doc  permission to record  your office visits  for later review.

I am not familar with the doctors in your health coverage, or facilities in the Georgia area that can treat you. If I was you, I would carefully look at the competencies of the treating doctors that you will be seeing, and evaluate if it is worth going outside this network.

Samsungtech1
Posts: 350
Joined: Jan 2011

I am so sorry for your husbands condition.  If they are certain it left the prostate then there are two differing opinions.  I am 66 and was diagnosed at 64.  I had agressiive cancer.  It had left prostate.  I chose RP, followed by radiation for bladder.  I wanted it out.  Doc said if I had radiation and it did not work I was out of luck.  There are plenty of people here that can give their opinions regarding straight radiation, cyberknife, or RP and radiation.  Everyone is different.  If it has escped to the seminal vessels then RP will ensure impotency.  Usually they take the nerves as well. Sex will be a thing of the past.  Unfortunately decisions can cause emotional thinking.  Now is the time for deep breathing, and calm.  Being scared is the norm on this site.  We all fight one day at a time.  

Good luck with your choices.  Cancer can be agressive, but a month is not going to change things that much.

Mike

SCHRCH
Posts: 18
Joined: Jan 2013

Thank you Mike.  Doc just called and said the Bone Scan is normal but they did detect "something" in the lymph nodes.  We're waiting to see if the radiologist can do a biopsy.  If not -- then they said they would do it via Laparoscopic.  I'm trying to remain calm and breathe thru this but it's so hard.  I know everyone has battles and while I've always prayed for people when they needed prayer, it really slaps you in the face when you need it in a situation like this.  I praise GOD that the bone scan was normal.  Now we move on to the next hurdle.  Again - thank you so much.

 

ralph.townsend1's picture
ralph.townsend1
Posts: 350
Joined: Feb 2012

Was your Husband in the service? Army, or something in the 60s or early 70s?

hopeful and opt...
Posts: 1278
Joined: Apr 2009

The traditional scintigraphy scans such as bone and typical CT do not perform that well to locate small tumours or colonies that produce low PSA levels of less than 10. These equipments got limitations (low resolutions) in detecting small sizes less than 1 to 2 mm." ...by Vascoda Gama

 

 

"Newer modalities with better contrast agents like C11 acetate and F18, in cross information data base done with PET and CT or MRI can perform better with more accuracy

..........................................

I received your csn email where you stated that you would be open to a medical oncologist outside your network.

Although I am not familiar with the doctors or hospitals in the Atlanta , Georgia area where you are, there is a a world renoun medical oncologist  in VA. , his name is Dr. Snuffy Myers, he is the best of the best.  This is very serious, and if necessary I strongly recomend that you go to tibuck two if you have to, and can afford it to see the best.

There may be some other highly qualified doctors near you, hopefully another poster can help.

I did not receive the site  that you referrenced in your csn email about the doctor that you are considering.  

ralph.townsend1's picture
ralph.townsend1
Posts: 350
Joined: Feb 2012

Dr. Snuffy Myers is one the best.  You need get to a prostate specialist and a removal of the prostate sooner than later. Getting on a Hormone treatment to stop the food source to the cancer and looking at a drug like Zytiga to stop the cancer.

A doctor like Snuffy Myers would be great.

I live in Dallas Tx. and see doctor here, But I go to Doctor's at MD Anderson cancer center in Houston to do my CT and Bone scans. The equipment they have can see the smaller tumors and I get on trial's for new drugs to fight this Monster!

 

I had a friend that got the monster at the same time and used local doctor's and this cancer advance quicker than mine. Now he in trouble and starting using Zytiga and his prostate cancer is backing off. Zytiga is not for all prostate cancer, but it kick mine for a whole year and maybe longer!

 

 

 

 

SCHRCH
Posts: 18
Joined: Jan 2013

No - he was never in the service.  I appreciate all of the wonderful advice and I am going to do everything I can to get him the best help he can get.  I don't know how to evaluate doctors credentials.  This is brand new to us and I'm researching everything I can get my hands on.  I've googled best prostate cancer doctors in the US and I get so many sights that I'm dizzy from trying to figure out who's who and what's what.  I will look at Snuffy Myers to see if this is viable for us to do.  We're not rich but I will spend all of our money to fight this monster if necessary. 

SCHRCH
Posts: 18
Joined: Jan 2013

No - he was never in the service.  I appreciate all of the wonderful advice and I am going to do everything I can to get him the best help he can get.  I don't know how to evaluate doctors credentials.  This is brand new to us and I'm researching everything I can get my hands on.  I've googled best prostate cancer doctors in the US and I get so many sights that I'm dizzy from trying to figure out who's who and what's what.  I will look at Snuffy Myers to see if this is viable for us to do.  We're not rich but I will spend all of our money to fight this monster if necessary. 

ralph.townsend1's picture
ralph.townsend1
Posts: 350
Joined: Feb 2012

A hug and a kiss is pretty good! Thank you for your support and your caring love of your Husband. Keep fighting this monster, it early in the fight! I know it you can do it and be there!

God bless!

Ralph

SCHRCH
Posts: 18
Joined: Jan 2013

He's getting lots of hugs and kisses.  He's my soulmate and I will be with him no matter what and thru whatever comes our way.  Thank you again for all of your advice.

SCHRCH
Posts: 18
Joined: Jan 2013

He's getting lots of hugs and kisses.  He's my soulmate and I will be with him no matter what and thru whatever comes our way.  Thank you again for all of your advice.

ob66
Posts: 214
Joined: Apr 2010

Schrch:   Had somewhat similar (not quite as bad numbers) in 2009. To be brief I have had daVinci surgery (2009), slight elevation in PSA post surgery 10 months later, AUS surgery June (2010), and radiation therapy July/August (2010)....From May 2010 through January 2012 I received lupron shots every four months.

Why am I telling you this? Well 12 months after my last lupron shot, and after all the treatments I have described above, my Ultrasensitive PSA was less than 0.02 (in other words undetectable). Let me mention that since Sept 2010 I have been on a NO red meat, NO dairy, Low sugar diet to decrease the food source for CA. Also added mega doses of Vitamin D.

I was initially Gleason 8, Stage 3B. My point is that aggressive treatment has worked and worked great for me. I would suggest you include it in your discussions with your doctor. I am sure the immediate impression would be that of "overkill", but don't try to convince me of that.

Best of luck in your pursuit of control of this horrible disease. Bob

SCHRCH
Posts: 18
Joined: Jan 2013

Thank you so much.  To update everyone, I have decided to swich to Emory University (Winship Cancer Center) in Atlanta,  My boss has some sort of connections there and he made a phone call and they are getting us in right away (probably next week).  They are #39 in the nation.  I know it's not MD Anderson or other top ranked places but we can't move there and if he's going to get constant treatment, I need to be where we can go whenever we need to.  This will be with a full team of doctors and not just one.  The entire team will evalute him and his condition and then collectively make decisions as to the best treatment and options.  I value everything everyone has told me and you don't know how much this has truly helped me as I have been really upset since this whole monster entered into our lives.  I am relying on God's strength to see us thru and his wisdom to guide the doctors in all of the decisions that need to be made.  They do the work but God is the Great Physician and I have to believe that I was led to this board and to Emory.  You've all been wonderful and I can't wish enough good blessings on each of you as you go thru your valley.  I will keep updates coming and I will still watch the board so I can pray for others.  God Bless

ralph.townsend1's picture
ralph.townsend1
Posts: 350
Joined: Feb 2012

That is great! They have the staffing to understand prostate cancer and fight this monster. You are on the right track with God is the Great Physician.

My prayer's will be with you and your husbands fight.

I go to MD Anderson on the 10th and 11th for my next CT and Bone scan to see where the cancer is and see if my tumor's are being good in staying small.

SCHRCH
Posts: 18
Joined: Jan 2013

Thnks Ralph -- I'm glad you are with MD Anderson.  I wish we could be but distance prohibits it.  I'm comfortable with Emory.  I not only wish you good reports but I pray that God would supernaturally remove all of the cancer from your body and you never have to deal with this again.  Take care - God Bless.  I will be staying on this board for a long time ---- I want to be an encouragement to others as they have been to me and to pray with those who need our prayers and support. Keep me posted on your progress.

 

SCHRCH
Posts: 18
Joined: Jan 2013

He's scheduled for surgery on 3/11 to remove prostate.  The doctor feels 99% sure it may be in the lymph nodes based on all the tests.   He also feels that radiation will be necessary and probably hormone therapy.  Having said all this --- there was an article in Consumer Reports that someone gave me regarding PSA testing.  It says "most men don't need routine PSA tests" as the test cannot differentiate between aggressive and non-aggressive and that many men have surgery and radiation needlessly, exposing them to all the devastating side effects.  It further states that up to 5 men in 1000 will die within 1 year of the surgery and that 10-70 will suffer "dangerous" complications.  This is based upon "recommendations released in October by the U.S. Preventive Services Task Force".  It said the test would most likely lead to more harm than to save lives.  Now I'm reading this that test alone is what should not be fully relied upon as a means to just take the prostate out, etc.  But my husband had the biopsy which showed 10 out of 12 samples to be cancerous.  The doctor at Emory University agreed and said it should come out within 2 months.  He said if the Gleason score was much lower, he recommends some patients to be on a "watch" and others he advises may have 2-3-4 years before they need to do anything.  But he said my husband's PSA went from 2.4 in 2009 to 8.8 in 2012 and that is very aggressive in Prostate Cancer.  What is your opinion on all of this? 

Samsungtech1
Posts: 350
Joined: Jan 2011

Once you make a decision do not start second guessing.  Move forward.  I went through same thing, but once I decided on a course of action I never looked back.  The worse thing anyone can do is to keep saying "what if".  That just adds more tension which is bad for any disease. Breathe deep and try to relax.  Sounds like you have good Dr.s.  let them do their job and pay attention to what they say.  Should you have a question do not hesitate to ask.  No question is stupid.  Just ask.

Good luck to you and your husband.  Plenty of us on this board have been down his road so do not hesitate to ask us any question you both might have.  No question is embarrassing, or stupid.

 

Mike

Wackytacky
Posts: 13
Joined: Jan 2013

He has an office about an hour from us......wonder at what point if we should consult with him for a seconD opinion?   My dad starts zytiga tomorrow or Friday for PC that has spread to his lymh nodes.  So, at this point it sounds like there really isn't another option.

 

wish your husband luck and cam overwhelmed with the knowledge and support that is on this message board.

SCHRCH
Posts: 18
Joined: Jan 2013

Wackytacky --- if I lived that close I would be on his doorstep when he got to the office tomorrow morning.  By all means -- I know very little compared to all these other people but don't think there are no options until someone tells you that you have no options.  Go see Dr. Myers if you are that close - I wish I were that close.    I'm waiting to see now about another biopsy to see if the what the radiologist saw is cancer.  If so - then my hubby's has spread to lymph nodes as well.  I will not stop until there's nothing else to do.  I thanked God all day today for the good news on the bone scan and I'm trusting in HIM and HIM alone to bring me good news about the rest.  He is the Great Physician and while the doctors are the ones I see with my eyes, I know it is GOD who is guiding them and has the situation in the palm of HIS hands.  Never give up -- NEVER......  Good luck with your Dad. 

Wackytacky
Posts: 13
Joined: Jan 2013

We've been told that he is lucky at this point because it has not spread to his bones.

just trying to calm this monster down because of the activity that is going on with the growth under his armpit....grew almost three times the size from a month ago.   The tumor that was in his lower back was shrunk with radiation to help elevate his pain, so far so good on that!

 

i will do more research on dr snuffy, and if we don't see results with zytiga we surely will be making a visit.   Our cancer center is suppose to be right up there with the best, and so far they haven't given us any reason to seek a second opinion.

 

keep us posted with your husband......

li find comfort in knowing that in the end God is in control!

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