I never thought that cancer would be something I would face one day. It’s not that I ever thought of myself as invincible, but cancer just was by no means at the forefront of my everyday thoughts. Of course, I always received the regular prostate cancer screenings because my physicians recommended that I do so. I was in no way a big fan of the constant prostate specific antigen (PSA) screenings, yet they were done on my annual visits to my Primary Care Physician. During one of my visits, the test showed unusually abnormal results. I went through a number of tests and even took Avodart, which helped reduce my PSA levels. Eventually, my prostate cancer antigen 3 gene (PCA3) levels significantly rose, requiring me to seek further treatment.
My physician, E. David Crawford M.D., is a well-known Urologist who provided my unique and unconventional medical treatment, targeted focal therapy (TFT). At the time, he wouldn’t perform my first biopsy at the VA because for him the equipment simply wasn’t good enough. Though this could be his personal choice, it made me reconsider my promise to Veterans in providing care that is second to none. I questioned myself and asked: “How can I make it perfect? Is our program just as good as any other?”
I did not truly understand the importance of the delivery of care until I myself became a patient. I realized how difficult it could be to navigate through any medical system, including that of the VA. Patient centered care began to play a large role in my life. I found that communication and information sharing were two aspects of care that I wanted delivered in the VA. Today, as a VA patient and leader my goal is to provide high quality care to our nation’s Veterans. I continuously strive to improve our health care system, by focusing on each and every individual Veteran and by supporting new ventures such as robotic surgery.
Lawrence A. Biro currently serves as the Network Director, for VISN 17 VA Heart of Texas Health Care Network, in Arlington, Texas. Mr. Biro leads a Network that serves more than 360,000 Veteran enrollees with a Veteran population totaling approximately 1.1 million.
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I agree that we must be totally open with our patients. One principle of patient centered care is “information”. Giving the patient all the information necessary to make decisions about their care. Additionally all employees need to participate in continuous quality improvement. To do this you must be exchange information freely.
Thanks for the input and honesty concerning shortcomings within the VHA, Mr. Biro. Would you be willing to share how this issue got resolved? (your own personal health problem, and finding a suitable location for you treatment, as well as what is now being done for veterans in your VISN in light of the shortcomings in VA care). It’s nice to hear buzz words like “patient centered care”, but what is the real plan? Again, thanks.
Attached is an article that tells how I resolved my personal health problem.
http://3dprostate.com/news/vanguard_11_pages18-19.pdf
As for the shortcomings of the VA at I was getting my care, I worked with facility to get the necessary equipment they were lacking. I did get my treatment at the university affiliate. I am now working to get Targeted Focal Therapy at the VA.
As for what I (we) are doing to ensure that we are providing care second to none there are many steps we are taking. First I make a promise to all Veterans that the care we provide will be second to none. To fulfill that promise we must constantly evaluate the care we provide. We do this in many ways; inspections, data analysis, and critical analysis. Additionally we have ways for Veterans to let us know when they feel they did not get care second to none. First my door is always open to talk to Veterans. We have Veteran Advocates whose job is to address issues with the system.
I agree patient centered care must be more than just words. For this to happen there has to be a true paradigm shift.
I have been working with the VA since June 2010 trying to get my husband’s shoulder operated on, per the VA it is over 90% gone however because it is not life threating he is on a waiting list which MAY have his surgery done in December, VA has not done an aditional MRI to see if it is worse or anything. My husband who has both PTSD and TBI is of the opinion that since he is 59 years old they must work on the productive members of the system first. I have been very proactive with calling and trying to get this done but with a doctor that is only there 4 days a month it is imposible. We have been with the VA for over 30 years and this is the worse it has been. We have been working with Congressman McClontock who got letter with several erronous items in it, they are restricked with what they can do also. I have about reached the end of my patience with the VA, most of the doctors are excellent however when something major like this happens you think they could move faster than a year and a half.
I ran into the same thing with a shoulder surgery,but the facility I was at I disappeared off the waiting list.I filled a 1151 form and a Torte Case against them.By the Standards of 38 CFR and United States Code Title 38 the Department of Veterans Affairs and the Veterans Health Administration has a Legal responsibility to provide prompt and approprate care . The lack of surgery for my dominant shoulder left me Disabled.Also theses 2 agencies like to give misinformation to cover themselves for lack of care or respondsibility.
I also have suffered with PTSD and other ailments, was treated by military doctors and host of private doctors. It took years later to discovered I had PTSD. Years of treatment were for various ailments, and I SUFFERED before proper diagnosis.
I agree with this writer, you must take care of your own health.
VA has told me, aswell as military doctors nothing was wrong with
me, I was in perfect health. I have suffered with PTSD for years since my
discharge, receiving various treatments, but none worked.
I was not being treated for PTSD, but pains and other body ailments.
Please learn from my mistakes as another VA Patient! I was thirty-six and awoke one day and had indigestion and back pain symptoms, I never had felt these both before at the same time, I thought maybe I was having a heart attack or heart issue. I was young, healthy and athletic. I went to see my civilian primary care physician, who upon examining me said that he thought that I had a possible stomach ulcer. This was followed by months of being prescribed acid pump inhibiters with instructions that I was to follow-up with the doctor at first in ten days. Then this was followed by that I needed to be on these medications for eight weeks to find relief. This was then followed-up with that I needed to be on a different medication for another eight weeks, which was then followed-up with that I should be placed on another medication and treatment for another eight weeks. This whole event began in May of 2001 and finally in September of that year I had been referred to a gastroenterologist who conducted an endoscopy and a colonoscopy which showed a mass in my stomach.
Despite twenty biopsy samples taken, the pathology showed that there was no presence of cancer. However, the gastroenterologist said to my wife that if I was an “older man” that he would say that “I have cancer.” Six weeks later in November, two days before Thanksgiving the results of a follow-up endoscopy showed that yes in fact the mass was cancer. How could this be there was no history of cancer in my family going back as far as the 1880’s that we could research. How can twenty samples are taken one time and negative for cancer and then more samples taken and now positive for cancer? “Sampling error” was what we were informed. One doctor said that I had “Hit the cancer Lottery, that this type of cancer is so rare with men in your age, race and given your risk factors and family history.” I had surgery with a subtotal gastrectomy with chemotherapy and radiation treatments all completed by June of 2002.
When you are the main provider for your family and are stricken with a catastrophic illness such as cancer, and you lose your health, your job and so forth, you also lose choices and options in life. I lost my civilian health care insurance and so I turned to the VA in 2003.
This was all well and I was in remission, my follow-up blood work and CAT scans were wonderful, my health was returning to me after recovering and suffering from the effects from the cancer treatments. I was being treated by a VA oncologist and in May of 2006 I had even allowed myself to have thoughts that I would beat…
this cancer, as that month I had seen the VA’s oncologist as part of the follow-up protocol of both blood work and most importantly the CAT scan that all cancer patients such as me dread. To quote the VA’s oncologist “You’re going to beat this, you are doing great, see you in six months!” By then I would be one month short of the all-important (important for cancer patients as it is the five year survival mark) five year anniversary from my initial surgery.
Then I was admitted to my local civilian hospital with complaints of stomach problems, during this I underwent a CAT scan, surely there would be no problems here as I had a CAT scan conducted at the VA just a few weeks earlier. How wrong could I be! The CAT scan showed major issues a possible metastasis in my stomach, liver and both lungs, how could this be? I was told to see my VA oncologist. I gathered a copy of the CAT scan with report from the hospital and then I decided to pick up a copy of the CAT scan that was just completed by the VA.
When my wife and I read the two reports they were virtually identical, they both said that there was possible metastases in the stomach, liver and both lungs! But how could this be, I just had visited the VA’s oncologist who was so very happy that I was “going to beat this cancer!” When my wife and I met with the oncologist the doctor said that I had stage IV cancer, that he wanted me to undergo intensive chemotherapy and that he promised that I “would not be in any pain” until I succumbed from the cancer.
When my wife and I asked him about the CAT scan that he supposedly had just read the month prior, the scan that said all over it that further testing and correlation needed to be conducted to confirm the metastases. I asked the doctor point blank did he even read the CAT scan, did he read the right CAT scan, and was the CAT scan that he read even mine? The doctor’s response to these and every other question was “Let’s not take about the past, but let’s talk about the future.” I said that all throughout the CAT scan that you were supposed to have reviewed, it says that further testing needs to be conducted to confirm the metastases, did you not read this? Again we were met with “Let’s not talk about the past.”
Both my wife and I said how can you be sure just from reading two CAT scans that for certain that the cancer has returned and that if it did, that it is for certain in all of these organs? The VA oncologist said that “based on my experience that reading CAT scans such as these, it is almost certainly true that the cancer is in all of these organs…
I said that a biopsy that was conducted of the stomach and that was positive for the cancer reoccurring and we agree but should testing be done to confirm the spread of cancer to the other two major organs? The VA oncologist said that “through my experience and gut feeling is that if it is in the stomach it is also in the liver and lungs.”
My wife and decided to go back and see my original civilian oncologist that had initially seen and treated me. When we did he said let’s not guess but let’s prove the cancer is back scientifically in these other organs. If the cancer is back and has just returned in the stomach, which he agreed that it had, but if it has not come back to the other organs it is the difference between the ability of having surgery conducted or not, the difference perhaps between life and death in my case. For most cases of cancer, the best form of treatment is surgery is what we were told in my case.
And so I was to undergo further testing and additional biopsy’s and was fortunate that I did not follow the advice of the VA’s oncologist as the cancer was localized, my stomach was removed. Despite “experience and gut feelings” the cancer was proven scientifically that it was localized, it had not spread. I am alive today despite these “gut feelings and experience”, along and despite of the VA oncologist not willing to talk about the past. If I had followed the course of treatment and care from this oncologist and just had the intensive chemotherapy, I and my wife along with many other medical doctors feel pretty confident that I would not be alive today to be able to write this Blog.
The some of the many lessons we learned is that always to ensure to get all copies of all tests conducted, anywhere. Never rely on any doctors “Gut feelings”, that if a doctor does not want to discuss the past, then make him/her part of your past, and ensure that you have things proven scientifically, and always get several other medical opinions before a course of action is taken if possible. Remember you are your own best advocate for your health, your health and even your course of care and treatment such as with cancer is your choice!
I agree with you Craig and thank you for letting everyone know of your experience. I really would like to add something to this story. To all veterans , if you can Please try to get a second opinion from a private doctor. We have experienced alot of misdiagnois from va doctors and i thank god my husband has a private insurance company as well as va benefits and is able to get these second opinions. If you feel something is not right with the system and treatment your getting , please seek help. I hope everything works out for you ..again thank you for sharing your story , hopefully it will help others in need.