Jun 09, 2013 - 7:04 am
I have posted about my husband who was diagnosed with Stage 4 EC that tested positive for HER2 (the most aggressive breast cancer gene)back in April 2012, went through chemo and radiation from the end of April to June then had surgery in August to completely remove his esophagus and pull his stomach up to make the new esophagus. Surgery took 9 hours and extremely invasive but we got through it. In December of 2012 after having his routine CT scan a lymph node in the left side of his neck eas detected. You could feel the lymph node was swollen to the touch and he was scheduled for a needle biopsy after Christmas. I asked why not biopsy it now and was told it was "probably" swollen from surgery. I questioned that decision again and wanted the biopsy done that day but the Oncologist said it was not necessary. NOT NECESSARY?? I argued but was over-ruled. I remember as we left I looked into the eyes of the Oncologist and said you are making a mistake. Doing the needle biopsy failed for the lymph node shrank and it was too close to the carotid artery and the surgeron did not want to risk puncturing it. So after an extremely painful biopsy failure, we were sent home and we were sent for a PET scan and sure enough that lymph node lit up as well as few other lymph nodes in the neck. Our oncologist said they only registered a 2 which meant they could not confirm it was cancer and they would rescan him again in 3 months. I once again told the oncologist he made a mistake and told him the cancer was back but what do I know..I don't have MD after my name.
So we went on with life and for a period of time Mike was doing good. He was getting ready to go back to work on a part time basis as well as doing out patient rehab. He told me "see honey, you were wrong, I feel great" and I said "perhaps" but deep down inside, I had this nagging feeling I was not wrong.. His cardiologist in the beginning of April 2013 took him off his heart pill that he was on for early in his recovery as he had a few episodes of rapid heart beat that took him to the hospital. The medication was stopped cold turkey which in all my dealing with dotors, they normally don't stop heart and blood medications like that. Within 48 hours, my husband went from days away from getting back to "normal" to extreme breathing issues, extreme weakness that could not get him off the couch to loss of his desire to eat. I told anyone that would listen what I have been saying since December, the cancer was back so we went for another CT and PET scan and it came back showing lymph nodes on BOTH sides of his neck, in the lining of his lungs and around his heart. Mike continued to go downhill and I called his surgeron who does his throat dilations and said the scans are missing something and you will see it with the naked eye. He told me that Mike probably just deconditioned but we were scheduled the second week in April for another dilation so he would look then. After the procedure was done, the surgeon cme out to talk with me. HE NEVER DOES THIS and he said that be took a biopsy as his esophagus and stomach looked inflammed. Deconditioned I said..not..the cancer is back isn't it. Surgeon said lets see what the biopsy says.
Long story short, the surgeon called me two days later and said the cancer was back and it was in the esophagus at the connection point. I replay those words over and over in my mind and saying to the surgeon, "I can understand how the CT many have missed the cancer in the esophagus but how did the PET scan miss that? Aren't they suppose to be accurate?" and there was total silence on the other end of the phone. Then I remember saying "and no one would listen to me that the scans were missing something and YOUR naked eye saw a problem!"
For 2 months now I have questioned over and over and over how in the world can the scan results ever be trusted again? I know that this does not happen to everyone but it happened to us but they lied to us and now I wonder just how much cancer is undetected or just how advanced it is. They say he is now ADVANCED stage 4 cancer because it returned, it is the same identical cancer as before and returned at the same location as the first time around. He is no a candidate for surgery or radiation so all we have left is aggressive chemo called Folfox. We had our first treatment May 21st and it took him 9 days to become functional again. We could not do the next scheduled chemo 2 weeks later as he got food stuck in his throat and needed to have a dilation done so we go this Tuesday the 18th for round 2.
I wonder how long the chemo will knock him down this time and I question..is the chemo really worth all the pain and the "quality" time it is robbing our kids of being with their dad. God I am so angry right now..but thank you all for letting me vent.