Dec 21, 2011 - 12:25 pm
During the month of November Don (my husband) had trouble with food getting stuck - he wasn't choking, and it wasn't every meal, but became troublesome enough that he went to our primary care doctor. He had Don do a barium swallow test and sent him to a gastroentrologist that recently moved into the suite of offices at our medical center/hospital.
The gastro doc said "yup - there's something going on - we need to do an endoscopy". That was done on November 18. On November 21, we were called on the phone as the doc said he would do in Don's case to keep the ball moving, and told that indeed it was esophageal cancer. The gastro doc's office gal set us up with someone at Univ of Mich and said UofM would call us with the details.
On November 22 UofM did call and said they could see Don on December 23! I asked who is he going to see and I was told a gastroenterologist. I asked why are we seeing another gastro doc - we've already done that? She said that's what your doctor wanted. I then called the referring gastro doc and asked why are we seeing another gastro doc - it is my understaning that with esophageal cancer you need to move as quickly as possible and December 23 didn't seem right to me. Our primary care doctor's office is closed on Tuesdays so I could not speak with them until the next day - November 23. In the meantime, I called over to UofM myself and found out that indeed Don should not be seeing another gastro doc - he needed to see a throacic surgeon. They gave me an appt with a head and neck oncologist - Ok - then - we'll take that appointment but I am calling our primary care doctor to get him involved in this.
The office manager at the referring gastro doc's office admitted they had made a mistake and it was because the gastro doc is new to our hospital and doesn't know anyone at UofM to make a physician-to-physician referral to. Are you kidding me? He has two partners he should have consulted and asked for their assistance. You don't wait an entire month to do nothing at all. He even told one of his nurses or assistants - that a month wait was probably pretty typical for UofM. Unbelievable!
I did talk with our primary care doc on Wed, November 23 and they tried to sort this all out and see what happened - who cares what happened - just fix it - then look at what happened and prevent that happening again. Now we have Thanksgiving on Nov 24 and of course, no one working on Friday the 25th. But the primary care doc would for sure get things going on Monday, November 28. They did 'start' working on it, but of course, they are closed on Tuesday, so we didn't hear anything from anyone until Wednesday the 30th.
We finally got an appt with a thoracic surgeon who does the THE at UofM and has been very well trained by Dr. Orringer who has perfected this surgery and who actually has done more of these surgeries (THE which is also an MIE procedure) than Dr. Luketich (does the MIE) who has recently changed the procedure he performs.
In the meantime, Don had a CT scan (11/20) and a PET scan (12/3)and the thoracic surgeon needed clearance from a cardiologist that Don could be cleared for treatment and surgery. Now our cardiologist was killed in a car accident two years ago on his way to his daughter's graduation. Don had a heart attack in 1996 and a stent placed. He had done so well over the years and takes a bp med and chloesterol med and an aspirin every day. The cardiologist and our primary care doc decided a long time ago that Don could be managed by our primary care doc unless some other issue came up. So we had to be reffered to a new cardiologist. Went there and he set up a stress test for the next day so it could be done prior to us going to the thoracic surgeon (12/13) and the doctor who was doing the EUS (12/9). Stress test fine. Proceed with EUS on 12/9 and see the surgeon on 12/13.
Surgeon says you need to have chemo and radiation and we are going to refer you to West Michigan Cancer Center in Kalamazoo, MI which is a lot closer to home for us. Great.
On Monday (12/19) we go see the radiation onc (who is going on vacation but that won't be a problem!). Not going to do feeding tube unless necessary - two out of the three doctors prefer that. Ok - we'll go along with that and hope we don't have to do while he's on rad/chemo. Also - when they make that decision they can then schedule the port-cath which they held off on pending the feeding tube decision. Radiation doc says ok - get the port-cath set up hopefully for next Tues and treatment could begin Wed (12/28). Turns out the hospital can't do the portcath until the 28th. Ok - now we're thinking - we'll start the 29th - the radiation doc said they can do the port in the morning and you can begin treatment in the afternoon. Well the port isn't going in until 11am so the likeliehood of treament starting the afternoon of the 28th is probably not going to happen. We are, naturally, very anxious to begin treatment - it has been a month of nothing but tests, we're finished with all that crap - let's get this show on the road.
Need to come back today (12/21) for simulation, mapping, tattoos, etc. The nurse from the chemo office came in while we were in the office at radiation doc and said that she overnighted the biopsy tissue sample yesterday (supposed to have done that last Friday) and needed to wait for that to come back to see if Don would be part of clinical trial so treatment won't start until Jan. 4. She failed to tell us that if Don is HER2 positive and can do the clinical trial that radiation is delievered with a different type of machine - she said she did not know this until this morning. So her and some other technician chick took our frustration with waiting as to mean we don't want to participate in the trial - they took it upon themselves to call another hospital to see if the port can be put in this week and that would allow Don to start treatment next Wednesday.
Well, that's when I got very upset and told them just what I thought of this whole deal - and they need to communicate and disclose information so patients can make an informed decision as to the care THE PATIENT CHOOSES. We were told that the clinical trial deal would not hold anything up, yet apparently it does. You cannot have simulation, mapping, etc done in the 2-3 days that the radiation onc told us - the technician said it takes 7-10 days. The chemo doc told us that the port could be ordered and put in within 2 days - not it cannot.
None of them can tell us at what point does this tumor go from stage III to stage IV - they all seem to know that this is an aggressive cancer and swift action is necessary, but now we're looking at the minimum of one more week or even possibly two more weeks depending on whether or not the other hospital can do the port earlier than next Wednesday. Still waiting to hear from someone on that issue. Don does not to participate in the trial if it means waiting longer to get treatment. He wants treatment to begin - and was hoping that it would start before Christmas. Like I told a couple of the doctors and nurses WHEN YOU HAVE CANCER THERE IS NO HOLIDAY. I told them just how unhappy I was with their whole deal over there and I left the office. Don and our daughter stayed. I went outside and cried and smoked a cigarette in their non-smoking parking lot!
Of course, insurance plays a part in this scenario also as their permission for anything to be done is required and that is crap - we should not have insurance companies who are always mindful of bottom lines (i.e.; bonuses for themselves)dictating whether or not a test is necessary. Our doctors are for the most part honest, have been very well trained and know what steps are necessary. We pay our premiums - no questions asked - like "is this really necessary - I think I should only pay you half that much". We should not have to add waiting for referrals to the already lengthy process of getting Esophageal Cancer treated.
If ever there was a clusterf)*^ - this is one of them.
This afternoon, we are off to the primary care doc so that Don can have a pulmonary function test and we are all getting our flu shots. Hopefully, by venting here, I will get it out of my system and not go off in their office.
Thank you if you bothered to read this - I just had to get this off my chest and on 'paper'.