On Mar 29, 2015, at 8:58 PM, Anthony Passaro <firstname.lastname@example.org> wrote:
Advances in Lung Cancer Treatment
From: A.G. Passaro
Subject: Anthony (Tony) Passaro
I am suffering from terminal lung cancer…
How did this happen?????
In early 2010 I was examined at the Perry Point Maryland VA. Hospital Center because I was exhibiting blood in my urine. I was told that the condition I was suffering from was called Hematuria. The Perry Point Hospital Center then ordered a CT scan to determine the reason for the blood in my urine. I saw the doctor several times on this issue. Cancer and its treatment are never mentioned. Results of that CT scan where never shared with me. (I have in my possession the internal med report that confirms the CT scan & diagnosis of probable urothelial carcinoma). However, no action was discussed or taken.
About a month later I was examined at the VA hospital in Hampton SC. They only refilled my blood pressure meds with no mention of the Cancer or the results of the CT scan. Another opportunity to discuss my health & cure me had been missed.
Remember, up to this point I was unaware that I was suffering from an early stage of Cancer that was detected but no action was discussed or taken.
In April 2014 I was examined at the Viera Florida VA again for blood in urine (Hematuria). The Doctor there made a note in medical records regarding 2010 Perry Point Md. VA CT scan which stated that there was a growth on my right kidney. I was then advised that the growth was Cancer and that my kidney must be immediately removed – four years after my original Perry Point VA scan, which had showed unbeknownst to me, Cancer. At this time I was also diagnosed with Hepatitis C.
This was the 1st time I was made aware that there was an existing cancer. The cancer had by now metastasized completely in my right kidney requiring it to be removed immediately.
In May 2014 there was a rush to remove my kidney. The kidney operation was performed on June 11 at the Tampa VA Hospital. At the time it was also necessary to remove a large amount of surrounding tissue. I was not able to get any pathology report or update as to if they got all the cancer.
We were told by Dr. Delvecchio, attending physician at the VA Tampa FL who did the surgery it was all removed.
That surgery took a lot out of me. I feel I have been chasing my cancer care & putting myself further at risk by believing the VA & Dr. Delvecchio who stated I was a stage 4 survivor at this time. If it was not for my daughter’s over sight & constant question asking about my health issues I would have just been told I was O.K.
We now know that Dr. Delvecchio the VA Oncologist in Tampa has now changed his opinion and states I have a poor prognosis……This is reflected in a note submitted by said Doctor in my file on Nov. 2014. In short, the Doctor changed his mind (why???) from good “you are a stage 4 survivour” to bad “you are terminal”….I have yet been able to speak with him in spite of many calls…
Dr. Delvecchio had last seen me in June 2014 after he performed the surgery and released me from the rehab center…. There was no follow up by him after that point even though my daughter and I tried numerous times to speak with him.
I have had Cancer since 2010 and nothing had been said or done about it. I have since learned: According to the National Cancer Institute at the National Institute of Health –
“Most transitional cell cancer of the renal pelvis and ureter can be cured if found and treated early.”
Transitional Cell Cancer of the Renal Pelvis and Ureter Treatment (PDQ®)
In July 2014 the VA assigned Dr. Ross 321-636-2111 of Cancer Care Centers of Brevard to be my follow up oncologist in Florida as I was living in Melbourne, FL at the time. I have yet to receive any chemo as was originally planned because of my very low blood platelet counts which indicate some form of liver damage most likely caused by my earlier diagnosis & untreated Hep C.
We were then working with the VA both in Viera Florida & Orlando to get the proper protocols to solve my liver problem as well as the tests required to assess why my platelets were so low. The VA would not allow Dr. Ross (of Cancer Care Centers) to do either blood work or any scans directly through his office – we were instructed by the Orlando FL VA to schedule those through them only. There was a lot of lag time getting the tests finished. Also the VA put in my chest port which they did not originally want to do but Dr. Ross insisted I needed as the chemo therapy would damage my veins. At first, the port did not work. I did choose to have private care fix that rather than wait and shuffle around more waiting to get the port repaired by the VA.
A CT scan was performed & reviewed by FL VA Doctors in July & again in August 2014 as well as a PET scan which found what appeared to be nodules that had developed in my lungs. No biopsy was ordered. This was when it became too complicated for me to manage and receive health care in FL so I moved to TX and largely turned my health matters over to my eldest daughter Theresa Gustafson. I have all the records from my appts with Cancer Care from July 14th, 2014 to September 2014 when I made the decision to transfer my health care to the VA in Texas.
Upon moving to Texas in Oct 2014 with the help of an advocate I was able to meet with the VA Oncologist at the North TX VA. At that appointment I was told that because of the numerous delays waiting for the VA to get things done, I was past the window for adjuvant chemo therapy as that is usually only helpful in the 1st 3mos. after the surgery. Other than that all looked ok for now. I would not see them again unless the PETscan showed anything new. The VA agreed to schedule a PETscan (done Dec 2014) to see how I was doing.
Meanwhile I have continued to chase down the reason for my low platelets by being seen by the urologist & liver Doctors at the North Texas VA. The urologists did a cystoscopy on Dec 30 & all was good with my urethra, bladder and left kidney. I had a recent cystoscopy done on Mar 23 showing no issues with my bladder. They are recommending I have another CT scan done asap but we are waiting on Radiology to schedule it. This was requested by the urologist 3 weeks ago. They are not clear on the current status of my left kidney & urethra. Radiology is still sitting on the approval……
Secondary issue: Hep C was determined along with possible liver disease earlier in 2014. Another interminable delay of a cure…
The North Texas VA liver Dr. Brown I consulted in Nov 2014 because there is a concern re: Hep C which the VA has known about for over a year. They have not done any follow up or provided any corrective protocols. Instead of looking at the Hep C they determined I needed more tests for my liver. The North Texas VA with the liver Dr Brown resulted in them ordering scans, an endoscope & blood tests. After many phone calls on my part to see to it that I got scheduled for these tests it was finally concluded that I am suffering from a mild case of liver cirrhosis (Mar 3, 2015). When I asked about the Hep C the Dr Brown said this most likely cannot be treated now since I have a terminal disease. This would be the 1st time I heard that I was a terminal patient. Then Doctor Brown ran a Genome test anyway (which was already done by the VA in April 2014) & we have a follow up meeting with her on April 1st 2015.
The Dec. 2014 PETscan performed at the North Texas VA concluded more nodule growth in my lungs. And in Jan 2015 I was referred to UT Southwest for a biopsy. It took another month for VA to get copies of my PETscans to U.T. for the referral. The procedure performed Feb 20th with nodules found in the left lung. A 2nd biopsy was performed Mar 6th for the right lung.
I have spoken with the Dr. that performed my latest lung biopsy Dr. Seth Toomay (UTSW) and we are now awaiting the VA response as to my follow up care – that is if I am even eligible. The biopsy did come back as squamous cell carcinoma which is an aggressive variant of transitional cell carcinoma. The Doctor’s assessment is that it is not curable at this stage since there are several nodes in both lungs. Dr. Seth Toomay is with UT Southwest 214-633-4400. He said in order to give a written statement it would have to go through legal and that would slow it down. However, he said the biopsy report speaks for itself. I have Cancer and it is killing me. I have ordered my own copy of the biopsy report and have asked Dr. Toomay for a written statement as of this past week.
Hard copies of all the reports have been requested & are now available for review.
What I fail to understand is:
If I had a suspicious tumor in my kidney in 2010 why was there no follow up for a biopsy? As records show, I was seen in 2 other VAs with no recommendation for follow up there either.
Once I began to consult with FL VA Doctors in April 2014 & diagnosed with HepC, why was there no follow up for my HepC & none taken since then, even though I have had no chemo?
I am doing my best to not be emotional about this situation. I have kept notes of all my dealings with the VA & continue to try to get my medical needs met. In fact am FINALLY seeing a cardiologist after more run around & tests. This has taken almost 2 months & they are aware that I have had heart bypass surgery needing 7 bypasses several years ago……
As the VA keeps fumbling, My health continues to decline.
Please let me know what you need to continue to get attention for my case. I feel that I am getting the run around while the delays are exacerbating my condition. I need to get something done about my lung cancer before it kills me… Please help me expedite this case. I will let you know if I hear something sooner from the VA Oncologist. Right now I have a consultation scheduled for April 3, 2015 with them. As of the writing of this letter it has come to my attention that the VA has not yet requested the results of my most current biopsy (Mar 6). Several calls made today & it is expected they will have them 1st thing Monday morning (Mar 30).
Thank you for your time and attention to this matter!!
Anthony G. Passaro
According to the National Cancer Institute at the National Institute of Health – “Most transitional cell cancer of the renal pelvis and ureter can be cured if found and treated early.”
Transitional Cell Cancer of the Renal Pelvis and Ureter Treatment(PDQ®)http://www.cancer.gov/cancertopics/pdq/treatment/transitionalcell/Patient/page1#_20
Because of the VA’s fumbling I have missed this window and essentialy sentanced to death…..without getting any cure…..