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Need some education fast - husband just diagnosed Gleason 9

Texas_Lady
Posts: 3
Joined: Jun 2014

 

I found out 2 days ago that my husband has Prostate cancer. Two PSA's done 2 mo. apart 33 and 34. 12+ Biopsies - Gleason score 5 + 4 / 9. I have read and read and read and cannot find the information I want. My husband is 100% disabled Vietnam veteran - a real American Hero. His disabilities are caused by Agent Orange. So, before getting this news of a Gleason 9, he already has medical conditions: Diabetic, Obese, High Blood Pressure caused by a hormone deficiency (took 5 years of runaway high blood pressure before we finally walked into the right doctors office, diagnosed, and now under control with meds), Neuropathy, had one stroke years ago, and taken to hospital 7 months ago with Congestive Heart Failure (caused by him not taking the evening water pill for many weeks). He has had several of the Prostate Cancer Symptoms for some time now (not that we knew before now). He asked the VA twice to do the biopsy sooner than 4.5 months after the second PSA of 34, but he says they wouldn't  budge. I am crazy at this point - out of my mind.
I cannot find any information about treatment for aggressive Prostate Cancer in CONCERT with an Agent Orange disabled person with my husband's illnesses. He has bone scan, bloodwork, and cat scan scheduled for late next week. We see the urologist specialist in two weeks. I am also 100% medically disabled after working with my disabilities for at least 20 years of the 43 years I worked. I mention this so you all can appreciate that there isn't any retirement account / savings. We sold our home ten years ago and paid off medical bills. My husband is 63 and I am 61. Anyway, second opinions outside of the VA would be very expensive, and not possible. Having said that, I do believe when we walk into the doctor's office in two weeks, we need to be educated and know what it is we need to know to have intelligent conversation regarding my husband's treatment plan. 

nickg
Posts: 1
Joined: Jun 2014

Gleason 9 is a  agressive tumor type--10 is the maximum possible. Your husband has multiple other illnesses which will make his treatment of the prostate more difficult. You should find out whether or not there has been spread outside of the prostate-your scheduled exams should help determine this. If there is no spread, I suspect Radiation will be the primary treatment. If there is spread outside, anti androgen hormonal treatment will likely be added

VascodaGama's picture
VascodaGama
Posts: 1588
Joined: Nov 2010

There have been several veterans reporting on similar conditions in this forum. You may want to read their posts and contact them via CSN mail to get advice regarding the VA benefits, the system and medical care scope. It seems that in some places they treat in more detail. Here are some links;

http://csn.cancer.org/node/236006

http://csn.cancer.org/node/237449

http://csn.cancer.org/node/248209

http://csn.cancer.org/node/225820

http://csn.cancer.org/node/264437

http://csn.cancer.org/node/259662

http://csn.cancer.org/node/234869

Gleason 9 is very aggressive and in most cases patients are in advanced status. In any case you should get the results from the Bone scan, CT and bloodwork, firstly. Those will rule what to do next.

Hormonal treatment is the best PCa palliative treatment that he could start right away but the drugs may interact with the medicines your husband is taking at the moment so that you should consult the doctor on what to take. Take a list of the medicines with you for your next meeting.
Try getting second opinions on the suggestions you are going to receive. Make a file of all results and data collected to date, together with a list of questions to expose to the doctors when going around. Here are some ideas to your list;

http://www.cancer.org/Cancer/ProstateCancer/DetailedGuide/prostate-cancer-talking-with-doctor

http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor

http://www.mayoclinic.org/diseases-conditions/prostate-cancer/basics/preparing-for-your-appointment/con-20029597

 

This is a link to a sort of compendium on Prostate cancer and care;

http://prostate-cancer.org/decision-aide/where-to-start/prostate-basics/

 

A good book to read for advanced status is;
“Beating Prostate Cancer: Hormonal Therapy & Diet” by Dr. Charles “Snuffy” Myers; which informs on diagnosis and treatments for systemic cases.

 

A very good booklet named "How to Heal" by Dr. Jeff Kane is a guide for caretakers to advise them on caring and communicating with someone with a serious illness.

Many survivors in this forum can help you in understand the facts but you need to share details to get good opinions.

Best wishes and luck in your journey.

VGama

Texas_Lady
Posts: 3
Joined: Jun 2014

Thank you so very much. We will look into each and every one of these information leads.

Bill91101
Posts: 34
Joined: Apr 2009

Very sorry to hear about your husband's condition(s)!

First of all; thank him for his service to this country!!  (That can never be said enough.)

Perhaps you could print out a detailed medical history and give to the doctor.  Keep a copy for yourself (if you're not already doing this) for discussion with the doctor.

I found this helps for my wife and me when we go in.  Otherwise I forget all that has happened.

The above comments have some good recommendations for what to look into.

I wish I had more to add...

Best of luck to you both.

Never give up!

 

 

moonlitnight
Posts: 58
Joined: May 2013

Hello Texas Wife...I can't add anything to this as I am Canadian and our system is different. I just want to send my support from afar (my husband is a Gleason 8, with multiple bone metastases) and to echo the words of someone else back there, never give up. Antonia

Trew
Posts: 892
Joined: Jan 2010

Just to share a little hope with you.  At the time of my surgery the biopsy on my prostate gave me a gleason of 5+ 4.  This January I am five years out from radiation.  And doing well. Pretty much.  Still side effects from radiaiton, but PSA is at 0. 

I have bladder neck involvement.

 

 

-Trew

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