Topic: External drains, hospital stays, biopsies and scans
The title about sums up my last month. 2 hospital stays to have 2 procedures to put in external drains and have 2 PTC (brushings of "tumor"). The drain is not going well. From my resection, my bile ducts are now "too short" for the drain to fit properly. It leaks. It burns. It hurts. I have to go to the nurse every other day to have it flushed. There is nothing they can do to make it more comfortable. I have to keep it in until I meet with the liver team in Gothenburg next Tuesday.
Good news??? Well, one brushing came back negative for cancer cells. But dr said "Just because you catch no fish doesnt mean there were no fish in the lake". We had a second brush test and are waiting for results. I was so excited about the first results, but almost immediately remembered that when I was diagnosed the first time, the brushings came back negative. So I was sent off to the Linkorping (university hospital located there) to have a PET/CT scan. The image showed no areas of concern.
So recap...results so far show no tumor activity yet I still have a suspicious area according to MRI scan in November. Talk about roller coaster. I dont know where I stand. Has the cancer come back or not. This has been going on since November and there is still no answer. Second opinions are amounting to nothing because they cannot give a straight answer either. I feel sick and am feverish, but I think that is the result of the stupid leaking drain. I am off on Tuesday to go to the liver center in Sweden and we will be discussing a transplant. I dont even know what to make of it all. Do I need a transplant? Should someone figure out if the cancer is back before things like this are discussed?
How reliable are PET/CT scans? If I have a clean one, does that suggest there is no cancer? How many brush tests do I need before we can rule out a cancer return? Am I supposed to wait and get another MRI in a couple of months to see if the area of suspicion is getting larger? I am hoping and praying for the best, but the reality is cc is sneaky and tests for it often mean nothing. I am so confused.
36 year old patient with buckets of hope