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.

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: External drains, hospital stays, biopsies and scans

Hi Kris, I wish I could answer all your questions.  You have great faith and strength.  I'm sorry you're having such a time with the drain.  That's got to be frustrating.  I'm sure some other folks on this site have experiences they can share.  Hoping and praying for the best for you too!

Carol

Re: External drains, hospital stays, biopsies and scans

Oh Kris......you are indeed on the roller coaster.  How I wish I could answer some of your questions.  One simple thing that makes sense to me is that you are correct that feeling sick and feverish can very well be the result of low level infections associated with the inadequate drains.
You don't mention anything about blood tests.  Do the labs show your markers, CA19-9 especially, moving either up or down.  This has so far seemed to be the most reliable indication of cancer activity for me.  CAT's and MRI's have never shown the cancer in my case and my understanding is that this is often true. 
If they are considering you for a liver transplant that indicates to me that they don't believe you have active cancer.  At least in the US I don't think you can get on the list for a liver if you have cancer in that region of the body.  Someone may correct me on this,  I'm speaking from hearsay and the words of just one doctor.

Courage Kris......be strong.
We all love you

-Peter

Re: External drains, hospital stays, biopsies and scans

Peter,
My blood tests (as far as I know) showed nothing of concern either. The ones I had at the beginning of this week were actually better than the ones from december, though I dont hink there was a CA19-9 done then. I had about 11 blood tests taken yesterday and dont have the results yet, so we will see. I am actually talking to the transplant team because my dr does think it is back-though small and in a tricky place. My lead doctor is a surgeon, but is in charge of the chemo program in the town. He is very against chemo for me as he doesnt think it is successful enough for this cancer and wants to be more aggressive. As a surgeon, he is pushing a cutting regime. My understanding is that I can have a transplant if the cancer has not yet spread outside the bile duct area.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: External drains, hospital stays, biopsies and scans

Dear Kris,
As Peter said:   We love you and are with you in this confusing time.
Tons of hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: External drains, hospital stays, biopsies and scans

Kris
I really feel for you  and what you are going through.  Keep positive.  You haven't been told the cancer has returned so try to hold on to that.  I know this is easier said than done but, personally, I find the worst times are when I have negative thoughts about my condition.  I think there are similarities between our situations so I can understand your feelings of frustration and anger.  But you have been through enough to know that the doctors will rarely commit themselves to a diagnosis or course of treatment until they are 100% sure.  I can't recall reading that there was a specific reason that you needed to be given drains, but I maybe missed it.

I agree that the chemotherapy situation is very confusing.  In the space of 4 months I have been advised, variously, "I would not recommend you have any until you have symptoms",  "I want you to start straight away", "come in next month to start the preparatory work to start the chemo the following month" and this week "I would not recommend you have any until you have symptoms".  So I am not having any just now on the basis that it may make me ill.

I am intrigued by the apparent move towards transplant.  There have been a significant number of references to it recently on this site.  The surgeons in Edinburgh have always been adamant that it will not be considered for cc.  Has your Swedish doctor altered his view or has he always been open to it being a possibility?

Did you get any response from Edinburgh about possible resection or is this still on the go?

My very best wishes.

Ron

Re: External drains, hospital stays, biopsies and scans

Well, my fever just peaked at 101.1 and have been called back to the hospital. What fun. I wonder what new and exciting Swedish words I will learn this time. Hopefully I will be out for my meeting with the liver specialists on Tuesday. Lets all hope for the best.

Ron, if I have another liver resection, it might be done in Edinburgh. If I have a transplant it will be done in Sweden. I do try to make my life as jet setting and exciting as possible.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: External drains, hospital stays, biopsies and scans

Best to you Kris.  Hope progress is made with your toward your surgery AND on your Swedish! :-)  Patrice

9 (edited by Janecw Sat, 12 Jan 2008 17:57:26)

Re: External drains, hospital stays, biopsies and scans

Kris you sound such a wonderful person. You have always taken the time to respond to my messages despite your own pain and suffering and for that I thank you. I realy hope that you recover from this dreadfull illness and live the life you deserve.

I am pretty new to this site and sometimes when I read some of the posts I don't fully understand all abbreviations used and medical terms and I then attempt to search for the meanings.  Kris when you were first diagnosed had it spread further than the liver. I'm trying to establish if surgery can become an option if the cancer becomes contained following initial diagnosis that the cancer was secondary.

Be strong Kris and I really hope it works out well.

Jane UK

Re: External drains, hospital stays, biopsies and scans

Jane,
No, there was no spreading. I was diagnosed VERY early. The tumor was the size of a pea but in a nice place to cause problems and be caught early.

So I found out the answers to my questions curtesy of the lovely Dr. Sanoff in UNC. PET scans usually only pick up tumors 1 cm or larger, so my little bb pellet was unlikely to be picked up. PTC (brushings) are unreliable. A positive is very rarely wrong, where a negative could actually be a positive.
No, I dont think anyone is waiting on pins and needles and I really dont think the world revolves around me, but I thought I would share the info for others who might be questioning the accuracy of scans and tests.

Off to bed and then the liver specialists in the morning. Hans and i will be spending over 9 hours on trains tommorrow. Oh what fun.
Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope