Medical Background and Chronology- KEY LEARNINGS

I am a 51-year-old male with a medical history for renal carcinoid- NET.

MEDICAL BACKGROUND/CHRONOLOGY:
- While living as an expatriate in Costa Rica 2002, I underwent a retroperitoneal resection at CIMA Hospital San Jose, for an unknown primary tumor near my right kidney. Subsequently, this tumor was determined to be metastatic, renal carcinoid (neuroendocrine carcinoma, intermediate grade). Unfortnately, the surgeon noted in his surgery clinic notes that during the operation he 'laserated the tumor during the resection, letting the necroric material escape in my body'!

(From the "Informe Clinico" "Despues de levantar el colon ascendente e identificar el rinon derecha se encuentra una masa blanda que comprime el borde medial y la pelvis renal que se logra liberar y resecar. Tambien se libera y reseca una formacion ganalinar pre-cava de escasos 2 cm de diametro. El rinon derecho asi como la blandula pre-cava de escasos 2 cm de diametro. El rinon derecho asi como la glandula suprarenal son de aspecto sano. Durante la maniobras de liberacion y reseccion de la masa esta se lascero y dejo escapar material necrotico".)
This is a critical surgical issue, made during the course of the surgery, which I think, in essence "seeded the body" with billions/millions of cancerous tumor cells.... throughout my body.

I know this doctor, and he is a very good person; however, it would have been helpful to me to have taken the time to explain what happened to me during surgery, and helped me to explain the risk, issues and let me design a treatment plan going forward (I only found out about this when I requested all the clinical paperwork during discharge). In addition, after surgery, I was uriniating blood for a week, and did not understand why. When I asked about the blood, I and was never told why it was happening, and told it was "part of operation". That was wrong.

Perhaps what happened may not have mattered at the end in the long run in my case, I am not sure, because I have never receieved an explanation, and its hard to get an explanation from anybody. I would assume, and from what I have read about cancer surgery, the lasceration of the tumor was not helpful in my overall battle in this diease.

I do plan to communicate with the hospital and MD to gain a better explanation and discussion.

LEARNING--> Wait to have surgery in the US! I did not need to have my inital surgery done in Costa Rica, but I was led to believe it was critical to have it done right away. I was told it could be an abcess and cause problems if it burst. This was not done with malice, however, I did proceed to have surgery on Monday, Febr 17 @ CIMA hospital based on the data I had at the time.
The decision to have surgery @CIMA turned out to be a mistake, I believe, as the tumor lasceration, as noted in the surgery notes, during surgery, essentially spread the tumors cells and diease throughout my body. Also, by not taking the time to explain this issue with me after the surgery, and potential consequences, left me in the dark as to issues, risks and treatment along the way. Since then, the aggressive tumor mets, which in past typically do not occur in a horseshoe kidney NET, that have have come about over the past 3-4 years, may be indicative of a potential issue.

RECOMMENDATION---> NEVER, NEVER, NEVER, NEVER go into complex surgery outside the US, if you can avoid it.....WAIT, COME TO THE US, GET 2-3 OPINIONS, THEN DECIDE. I DID NOT DO THIS AND IT WILL COST ME DEARLY ! I have no one to blame but myself......


- Following the diagnosis, I started medical care at Moffitt Cancer Center and Research Institute in Tampa, Florida, under the care with a physician specializing in this rare type of cancer.

- In December of 2003, I underwent a partial nephrectomy for the primary tumor identified as a renal carcinoid, at Moffitt Cancer Center. Of note, I had a horseshoe kidney and have the left portion of the kidney remaining after surgery. Prior to the surgery, I had an Octreoscan, the primary tumor in the kidney lite up and showed up in CAT scan. In addition, an "worrisome" area in the liver "lite up" in the Oct scan, but nothing showed up in a CAT scan and MRI done after.
Unfortunately, although they also searched for the liver tumors (hot spot) during surgery, nothing was found and the liver remained intact. These "hot spots" were from tumor cells that showed up in the Oct scan as I was very senstive to the scan.
The tumors then showed up in the next CAT scan 6 months after my sugery. Net, if the surgeons had been more familiar with the Octreoscan, they may have been able to address the unseen, small lesions, not seen during surgery (by possibly use a "neo probe" during surgery)? I note maybe because I dont know!

Another issue (in retrospect), made during this procedure was removing my entire right kidney. The right kidney had a 3cm primary lesion (small) on the outer edge of the kidney. MCC recommended a complete removal of the right kidney, as typically done, when the primary showed up. The Octreoscan already showed a focus 4 hot spot in the liver, so it was strongly suspected I had additional disease mets, in addition to the previous CIMA hospital surgery .

Instead of removing the entire kidney, I should have investigated removing the lesion from the kidney only. There are hospitals which perform this surgery---NEPHRON SPARING KIDNEY SURGERY-- The hospital I was in (Moffit Cancer Center), and surgeons, although very skilled overall, were not as skilled in the nephron sparing surgery at the time (it is done at the Cleveland Clinic, in Ohio for example). The results of nephron sparing surgery are generally the same as radical resection, and would have preserved my remaining kidney & function for me down the road. Below is a video of the surgery from Cleveland Clinic as reference:

See web site and video on surgery: http://my.clevelandclinic.org/urology/library/virtual_operating_room.aspx#
Refer to video:
> Follow Kidney-Preserving Surgery for Kidney Cancer
video> Partial nephrectomy, or nephron-sparing surgery, completely removes a cancerous kidney tumor while preserving the healthy part of the kidney.


LEARNING--> understand your disease and all options for surgery, the skill of your surgical team, and new advances/techniques other hospitals are using. The Moffit team recommended a complete resection of the right kidney. I knew about kidney sparing option at the time which the Cleveland Clinic performed, prior to my surgery. When I asked the surgeon about it he said "it was too difficult" and I never pursued it further. The surgeon was right, it is a very difficult surgery, but there are some hospitals which would have done this type of difficult surgery.

By me not following up with what I knew from my research, and not getting a second opinion, I now have one remaining kidney, which is not functioning normally. It now has limited my options for advanced cancer treatment, chemos, etc., to address the spread of the disease. Everything flows through the kidney, and I should have protected it, and myself, and followed up on the information prior to surgery.....
I am not sure if I would have gotten another option after talking to other hospitals about the kidney sparing surgery, however, I never gave myself a chance to review and question options by not taking the initiative in this very important and life and death decision.......this was another big mistake on my part!

- In June 2004, I was diagnosed with a re occurrence with two liver and retroperitoneal metastases and underwent open surgery with radiofrequency ablation of the liver metastases (SURPISE, this was the hot spots on the scans from the prior scan). Prior to this surgery, only one of the lesions were seen on the CAT scan, while the remaining two on the Octreoscan were not seen on CAT scan. Unfortunately, the surgeons were not able to address the “hot spots” in the liver and lymph node during the third surgery, as they could not see them. From a retrospective perspective, I should have realized they, although very good surgeons, were not very familiar with the technology of Octreoscan, NET tumors, and how best to leverage the technology & scan data in a surgical setting. Net, they treated/resected what they could see only. I am very sensitive to the Octreoscan material and it enabled the scans to show up areas of cancer (hot areas) prior to a tumor mass being seen. Net, I had an advantage with my tumors being sensitive, but unable to take advantage of it.

I later learned from another hospital and surgeons that were more skilled in these areas that there are tools surgeons can use, such as a “neo probe”, to highlight unseen "hot spots" during surgery, and remove the tumor cells/area during surgery, even if there is no tumor showing in the classic sense. In my case, one of the hot spots which lit up in the Octreoscan was near the removed kidney (tumor bed), and was inside a lymph node. During the third surgery, the surgeon who removed the kidney (and did a great job since my horseshoe kidney was complex surgery)reviewed the area suspected and "found the area to be clear of cancer", per the report. After surgery, when I asked why lymph nodes were not removed, I was told "false positive". Even my oncologist, who sent me to him, asked us "why did he not remove any lymph nodes"?

This lymph node soon after started growing rapidly, and it is now my largest mass in my body (6cmx6cm). The tumor mass will end my life soon if I don’t undergo risky surgery to remove it, or find a way to arrest its spread. It is wrapped around the aorta, and kidney vessels, amongst other things. In retrospect, this mass could have been removed very easily by resecting the suspected hot spot lymph nodes around the area, even as preventive, during the June 04 surgery….but nothing was done at the time and the once unseen cancer cells in the lymph node started growing rapidly soon after I was out of surgery.

LEARNING---> Understand the surgical plan completely prior to your operation -request that you have the surgeons, oncologist and radiologist in the same room to talk what is being seen in the scans, and what the approach will be. Make sure all of them understand the scan/technologies being used and how they are going to maximize the technology during the surgery. Ask them what tools will be used and, if the Oct scan reflects hot areas that are not seen in CAT or MRI or ultrasound, then what are the options during surgery to remove or address potential cancer cells?

Finally, if after asking one of the surgeon prior to surgery, whether the other surgeon will be in the"operating room and is ready to address the unseen hot spot?", and he responds by yelling at you while you are in bed, I would recommend you not undertake the operation as his state of mind may not have been proper for an effective surgery (remember the movie "cool hand luke"). I would recommend you consider changing your surgeons for another day (I can talk that off line if someone is interested!)
Unfortunately, I did nothing and went into surgery, yelling surgeon and all, as I was too drugged up to get out of the surgery and afraid if I didn't do it. I survived it but the issue of hot spots not addressed remained.... and it was my mistake!

-In October of 2004, I went back for another set of scan and now it finally demonstrated further retroperitoneal growth and liver metastases (surprise, the hot spots were now growing!). The MD recommended I undergo another risky surgery, with the same team (what is the definition of insanity?) to remove the seen areas!

I declined the surgery reco at Moffit and left to look for other opinions. I was offered, and elected to take part in an investigational phase II study of RAD-001 5 mg (everolimus) and Sandostatin LAR 30 in February 2005 at MD Anderson Cancer Center (MDACC) in Houston, Texas under the care of Dr James Yao.

- The RAD worked! It shrunk the tumors by 25% and held me stable for 18 months with little side affects!!!!! Finally, success! (I have a video which Dr Yao used in seminars about the success of RAD which is my scan (my 15 minutes of damn fame the hard way!). Its in one of the posts .

-In September 2006, I was taken off the protocol study after an 18 month course, The study was originally designed for a 12 month period, but the MDACC physician continued me on the medication because of my successful response until he was required to cease treatment due to study protocol and small diease growth,

- Since I have been taken off the medication, I sought additional medical opinions from carcinoid oncologists & surgeons at MD Anderson Cancer Center, James C. Cancer Center in Columbus, Ohio, in addition to Moffitt Cancer Center, in order to seek treatment alternatives/options. In all cases, surgery and radiation were not viable options and current available systemic options are not very effective. In addition, scans taken from September 2006 (when I got off the medication) as compared to November 2006, reflects significant growth in the tumors, which had been stable for the previous 18 months under treatment. It has been noted that I need to control the retroperitoneal growth encasing the aorta vessel as will threaten critical vessels and organs (remaining kidney) .
LEARNING---> If you are looking for surgical options, make an appointment at the neuroendocrine clinic in Kenner LA, as well as 2-3 other places familiar with NET. Kenner seems to have the most aggressive surgeons, and I understand are very skilled in managing complex and risky surgeries. I did not visit them during my inital review (off the RAD) time so I lost the opportunity to have them input to a surgical option.

- In November 2007, I returned to Moffit Cancer Center who confirmed the retroperitoneal adenopathy and liver metastases, which have been there for at least two years. After reviewing the findings and my current state, the MD recommended that I restart on the medication (RAD001 everolimus and LAR 30) that I was previously taking. The everolimus medication is available under the brand name Certican (everolimus) as a medically approved immuno-suppressant in majority of countries around the world, including Europe and Latin America. In the United States, this medication is currently under investigation and review by the Food and Drug Administration (FDA). Sandostatin LAR 30 is currently available and FDA approved in the United States.


-In December 2006, with the recommendation and treatment plan of Moffit, I began acquiring Certican (everolimus) through my physicians in Costa Rica. In addition, physicians in Columbus and Cincinnati were administering the monthly dose of Sandostatin LAR 30. To note, both medications have little or no side effects, have not caused interference with work, and because I have one kidney, it is non-nephrotoxic. The insurance did not cover the cost of the medication which costs $2100/month. Adding the cost of travel monthly, my medical costs totaled $3500/month, for a drug that at best was stabilizing the tumors!
LEARNING---> Think about the cost of medicine before undertaking something like this. In my case it worked for 6 months, at a cost of $20,000 without success. This is money that my family will need when I am no longer around! All it did was give me 6 months, not worth it.

- In March 2007, I underwent an MRI at Moffit Hospital to determine the status of my lesions and the effectiveness of my treatment with Certican and Sandostatin. The results indicate that my lesions are once again stable in comparison to my previous scans in November 2006. The MD was very encouraged by the results and it is his opinion, and recommendation, that I should continue on the lifesaving therapy from Certican 5 mg daily and Sandostatin LAR 30 monthly.

- In August 2007, CAT scan at MDACC revealed rapid progression of disease in liver and lymph nodes, including new areas of growth in liver and outside liver. The RAD001 was stopped. I have a full month supply of the medicine left if someone is interested!

- Sept 2007, I started a new experimental treatment with Pazopanib 800 mg daily and LAR 30 monthly at MDACC.

- Nov 2007 CAT scan @MDACC noted “demonstrate able interval decrease in size” in the liver and lymph nodes. PAZOPANIB WORKS!

- May 2008 CAT scan noted stable disease in bipolar liver mets, perpetual node and retroperitoneal adenopathy.

The protocol length is 12 cycles and the MD stated if the scans show stability, I will be taken off the study in August 2008. Dr noted that they would wait 1-2 months after I am taken off the study, he would then “decide a course of action” with the greatest possibility being Avastin.
In addition, I also discovered today this study is opening up for those “expressing clinical benefit from treatment with pazopanib through participation in a Phase I and II (NCT00387205” as a study to “access long term safety of pazopanib”.


- August 2008- CAT scans demonstrated stable disease, however, I have reached the 12 month study limit and I have been removed from the study. Fortunately, Pazopanib is a Glaxo drug and they are enrolling participants in a study to access the long term affects of the drug. I have started working with GSK in an effort to enroll in the study and thereby remain on the drug for a period of time. I have been in contact with a very helpful Glaxo administrator and she is following up with the MD @MDACC for continued use of the drug. I need some help! from God above and others to get approval to continue taking this medicine…,,,,wish me luck please!