Update on Jean

Hi Everyone,

Apologies in advance for the group email, but I’m short on time and not able to write the many, many personal emails I would like to send. I know many of you read my blog (website) on a regular or semi-regular basis and I am about to post some news that I wanted to share with you before making it public knowledge. Unfortunately that sinking feeling you get whenever I send an email with the subject line “Update on Jean” is accurate. Another surgery is imminent and the preliminary biopsy results are not what we had hoped for.

As you know, we’ve been battling some kidney/ureter issues since last September. I’ve had a stent in my right ureter since mid-December and we knew that surgery was the most likely outcome; however the results from my last stent placement have changed the playing field a little. Two weeks ago, when Dr. Karian removed the extra large stent and scoped the ureter, he came across more polyps like the ones he removed in September. He spent some time removing them and getting good margins on them so that the lab would have something sizable to biopsy. He then placed the smaller stent to keep the ureter open. As promised, Dr. Karian called with the biopsy results last week (at 7pm on a Friday night no less).

The polyps were mucinous cystadenacarcinoma, the same cancer as all of my previous tumors. This caught us all off guard because there is no history and no documentation of this type of tumor inside of organs, tubes, etc. The modus operandi of this cancer is to strangle the organs, tubes, etc. from the outside. On occasion the tumors have been known to penetrate an organ, but never grow inside on their own.

Dr. Karian had waited almost 24 hours before calling me because he had already gotten the ball rolling in terms of scheduling the next steps. He immediately brought my last CT scan, his operative reports and findings, and the pathology report to the attention of my general surgeon, Dr. Nauta. We had already discussed my preferences in terms of surgery, so they went forward with locating a surgical team at Beth Israel Hospital to perform the procedure. It’s called auto-transplant and basically it involves removing most of the remaining ureter, and then moving the kidney down to the abdominal cavity and reconnecting it to the ureter. Basically I am both the donor and recipient in this transplant operation. Mt. Auburn Hospital does not perform transplant surgeries, but Beth Israel is one of the top facilities for these types of procedures and the doctor they have set me up with is Chief of the transplant team so I will be in good hands. Though we haven’t discussed it yet, I believe Dr. Nauta will also be present during the surgery especially now because they will have to remove some scar tissue and search for more cancer cells.

We are upset with the news that the cancer is present, but we are not yet certain whether it has recurred or if this is just a stray cell that was missed during my last surgery, 16 months ago. The timing is suspicious – it’s the exact amount of time between all of my previous surgeries / recurrences. We were really hoping to go longer than this between surgeries, but that is not going to be the case. My doctors have suspended my Erbitux treatments to allow me to get enough strength for the surgery and we’ll talk afterwards about going back on it. The findings in the rest of my abdomen will help us decide whether or not the Erbitux has been working or if the past year of beating me up with it has all been for naught.

As usual, Pat and I are doing all the research possible and have already been in contact with some doctors in the Netherlands who recently published a very relevant article. We’ll also talk with some of the PMP specialists, though it’s not worth traveling to Nebraska or Texas this time as the cancer appears to be confined to the ureter and I’m still not a candidate for intraperitoneal chemotherapy. Mostly we just want to find out if anyone else has ever seen this cancer in this location. I really don’t want to be unique anymore!!

This will be the only direct email I will send. Going forward we’ll update the website when we have news (like the surgery date which will be sometime in March) and once I have the surgery, Pat will once again post daily updates to keep everyone appraised of how well I am doing. We have no idea of how long the surgery will be, how long I’ll be hospitalized, and what the recovery will be like. We know that because of my history, everything will be slightly longer than for someone without my history, but we also know that I am a fighter and I don’t like to spend lots of time in the hospital.

I ask you all to please keep me in your prayers and thoughts – the more people on my side, the better.

Posted by gasbarro at February 19, 2006 09:39 PM