Rare cancer with a rare pathology report

Hi everyone:

I posted the following on facebook in Don's Updates and rather than try to rewrite here, I will just copy what I posted there. It's hard to explain what is going on in writing but I did my best.

FEC and Hugs,
Judy

Geez, I don’t even know where to start. We have met with the surgeon (Dr. Reddy, UofM) and the chemo onc (Dr. Chandana, WMCC) and radiation onc (Dr. Nigrin, WMCC) and they have told us that Don’s pathology report is extremely rare (UofM has seen it once and WMCC has never seen it). There will be no more surgery, at this time there will be no chemo and they are not sure if radiation is a viable plan or not. The positive margin was not at the resection area, it is completely around the tumor area on the outside edge of the removed esophagus. This is called a circumferential positive margin.

Don has already received the amount of radiation that would normally be given someone, but they are checking to see if there is any way he could have additional radiation. Michigan does not have a lot of positive things going for it right now, but we do stand out in the medical field. One of the worldwide top radiation oncologists is at UofM and they are sending Don to him for a consultation. That doctor will then gather his team and consult with the radiation team at WMCC and see if there is anything that can be done. This will be our second opinion and we are fortunate to have these experts right here in Michigan and won’t need to travel somewhere else. They want to act quickly if anything can be done.

The area that is the problem is a very tight area – the new “stomaphagus” runs through the middle of where the heart, lungs, and trachea are located and this is exactly where the positive margin is. This area has already been radiated and chemo will not work there. They have explained to us that even if they do come up with a plan, it will be a very high risk plan and we will need to really think about it. We will wait to see what they may come up with and make a decision at that time. UofM is one the top hospitals in the US to deal with EC and they perform hundreds and hundreds of these esophectomies yearly so for sure Don’s case will go in the ‘record book’.

Worst case would be ‘just wait and see what happens’. Don would be monitored very often and very closely. This is an extremely rare and aggressive cancer and Don now has an extremely rare pathology report – and we all know Don is a rare, wonderful man. I would be willing to bet that even in the worst case scenario, Don would be one of those rare statistics, after all – someone has to be in the 1% class right? We remain positive and Don is getting stronger each day and the coughing is getting less and less. He continues to amaze me with his strength and attitude.

We would ask that if you have heartburn, acid reflux, or indigestion – please insist that your doctor do an endoscope to be sure that you are not experiencing the symptoms of esophageal cancer. Though it is a rare cancer, it is the fastest growing cancer in the United States with a very grim prognosis, and they don’t know why – they just know it is. The prescriptions these doctors give for heartburn, acid reflux, etc only cover up what may be a very serious situation. Please help us spread the word on esophageal cancer and the possible dangers of anti-acid medications.