May 09, 2012 - 9:46 pm
I posted much of this on a reply to William and Mishti on a post Mishti started about her dad, but want to let those of you who didn't see that post know what is going on with Don - I am modifying this slightly so that it only pertains to Don's situation. William and I have an agreement to disagree at times and actually I think that's a good thing. If we all agreed all the time would there ever be progress? A healthy debate can move us toward progress and that is our goal here - to someday have learned so much about this cancer that it becomes an easily treatable and cured cancer.
Don's update 9 May 2012
After meeting with Dr. Hayman today, we have come to the conclusion that Don will receive no further treatment at this time. Don did not have any positive nodes - in fact, two of the nodes showed response to treatment and were basically destroyed.
They have explained to us just how rare Don's situation is - his distal circumfrential radial margin tested positive - not the nodes. The area that is likely to have cancer sits in between the lungs, heart and trachea - to have radiation again would likely cause more harm than any benefit to be gained. Don had a very poor response to treatment the first time and really had just about all the radiation a person would normally have. Don's poor response leaves the doctors to say to us "If it didn't work the first time which is the optimal time, it isn't likely to have much of an affect a second time in the same area which is very high risk." Also the first time around the dose was higher than what it would be this time.
Multiple doctors have explained that at this point, chemo would be of no help and neither will radiation. Now, if the cancer is active and goes into another area or organ, they would determine at that time what could be done, but, of course, we know that at that point, Don would then be classified Stage IV.
Ours is certainly a very rare case and we have now consulted with five different doctors as to the path forward. They have each looked at the data available and have consulted with each other and the best scenario offered was possibly 8 more radiation treatments which would be very moderate and if a fistula (hole) were to happen to the lungs, heart or trachea that would likely mean death - therefore, we are choosing not to pursue this avenue and all of the doctors seemed quite relieved with our decision.
Obviously this is not something we wanted to hear and I know it was hard for the doctors to 'get real' with us about this. Dr. Hayman said that some people may want to proceed with the 5-8 radiation treatments, but if it were his family or loved one, he would advise against it due to the high risks associated with this particular situation.
In any event, we are contributing to the knowledge base of esophageal cancer and hopefully, someday soon, future esophageal cancer patients will reap the benefits of the seeds we each sow today.
We are thankful and grateful for any information or advice given to us and I do take the time to research all information I can find regarding this stupid cancer - so thank you for passing info along.
As someone has stated before, we are a statistic of one and though I prefer to have my eyes wide open, I know that someone has to be the 1%. So for now, we will carry on and pray and hope for the best.
Many of you know that Don broke away from his normal 'very frugal' self and bought himself a new Harley Davidson and we have a trip to Sturgis, SD planned for later this summer and we are very excited about that. He is buying some 'bling' for the bike and that let's him 'play' with the bike until the day comes that he is released to ride it, which is June 22. Looking forward to knees in the breeze and seeing some of our beautiful country.
Hugs and FEC,