Biopsy, inconclusive, non diagnostic. Can someone help me understand
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Irene,
We also had experienced frustration and helplessness when encountering this disease, for the very same reasons you are describing, in your post. Communication between all involved physicians can be a problem therefore, we made sure to request a written report from each doctor, for our own records. Prior to every office visit with any physician, we then forwarded this report to his or her office. In order to confirm the receipt of the records, I would then follow it up with a personal phone call. In most instances, my efforts were worth the extra trouble and energy expanded by me. It is tough and time-consuming and frustrating, but as I had experienced personally, when advocating for our loved one, we need to be very pro-active in order to assure that the absolute best care is given to the patient.Also, you are not rambling at all. This is the right place to rid yourself of your frustration.
Wishing for the absolute best,
MarionsGod bless you, Irene. Don’t be afraid to ask questions. We’ve all had different experiences and you may find someone with experiences similar to your husband’s. I have learned a lot here – questions answered that I forgot to ask the doctor.
Tibor, Many thanks for your information. My husband was diagnosed Sept.2006 and given 3-6 mo. At first they placed external plastic stents for drainage but he had them replaced every 3-4 weeks because of infections, including one 2 week stay with liver abcess which resulted in septic shock, and septic shock three weeks later with another infection and bile duct blockage. Following in November we went to Mayo Clinic in AZ where they replaced the plastic stents with metal stents. He received no chemo or radiation. He gained back all the lost weight He was not a candidate for surgery. He is diabetic, has heart failure, also had a five vessel bypass just two years before this diagnosis and his age , 75. Then couple of months ago he started vomiting up after every meal. ERCP showed a spread to his stomach. Lymph nodes were all clear, however, food was backed up and they drained his stomach for 8 days. No food or liquids, just ice chips.After that time period, they did a bypass from the small intestine to the stomach allowing for food from the stomach to drain. Again no food or liquids for five days waiting for healing. Of course he was on a drip. Then a liquid diet. Naturally all the weight he gained he lost again. Whereas chemo was not encouraged initially, it is now. The Oncologist wants to avoid any further spread to the liver, and other organs. This last surgery has left him very weak. He sleeps a lot. Has a lot of pain on the right side, and more so when he has eaten. Based on what the latest tumor marker and blood tests will show first of the week, will depend if the Dr. starts the chemo (Gemzar sp). Dr. would like to wait and hope he gets stronger. I don’t know if others have the same problem I find myself in at times. Which Dr. to call when something happens. eg. Bob started with diarrhea. Do I call his Gastro Dr. His Primary Dr. the Dr. who did the stomach surgery or Oncologist. I ended calling the Gastro Dr. who sent out medication. And I wish the Dr would read the chart before they come in. It seems like we have to fill them in and wait for them to flip through the pages on his chart to catch up. For instance the radiology intervention called for a cat scan before surgery. The oncologist had not even looked at the results before he came into the room. When we asked why they were still trying to get a biopsy from the bile duct area and not the tumor in the stomach, he said to bear with him a minute while he read the report. Sometimes I wonder with all the Dr’s involved does the right hand know what the left hand is doing. Sorry to ramble on. I am grateful for this board and all the people, such as yourself, who take the time to help and give of your time to answer questions, and read a ramble such as mine. Thank you again.
IreneHi,
Sorry about your husband’s and your suffering. CC is very difficult for all involved because it is a nasty and sneaky disease. The issue of a negative biopsy is a well known one. My dad went through 2 or 3 biopsies, they were all negative. The reason is that the tumor sits in the “porta hepatis”, i.e., the center of the liver right between the main hepatic bile ducts, adjacent to all the large vascular structures (portal vein etc). This makes the biopsy very very difficult and dangerous. The brushings they get via endoscopic approach many times yields insufficient amount of cells to make a diagnosis.
The diagnosis, as far as I know, is many times based on the constellation of clinical presentation, lab findings, ERCP (endoscopic exam) and/or MRCP (magnetic resonance cholangiopancreaticography). When they see the mass in the porta hepatis with erosion of the hepatic bile ducts, even in the face of a negative biopsy or brushing, doctors are willing to accept the diagnosis. This is my understanding based on my personal experience with my father’s disease.For me, the hardest part with the diagnosis was acceptance particularly because the specialists told us what was going on, but with the negative biopsies we were hoping for an alternate diagnosis. This resulted in wasting a month or so running around pursuing dead ends while treatment should have been administered. So, I sympathize with your situation. It is a very very difficult one.
Just to tell you a little bit of my dad’s case, which may be helpful to you in the future, shortly after diagnosis he received 2 stents in the bile ducts. This made passage of the bile possible again and releived his congestion and resulting jaundice. Then he received radiation (no chemotherapy, we decided against it at the time). He did very well for 4-5 months, but then started having infections (liver abscess, that spread to his lung and ended up killing him 12 months after diagnosis). He was offered surgery in the very beginning, that was clearly the only chance at curing the disease, but the odds were 15% cure vs 85% major complications and/or rapid return of the disease – he did not want to play those odds…
I hope your husband does better. Wish you the best of luck.
Tibor
PS: this email is based on my personal experience and my own readings and research. It does not represent expert opinion or medical advice. It may not be applicable to your husband’s case at all depending on his diagnosis, stage of disease, etc.
annshal,
glad for you to have recieved some clarification from the physicians. and yes, I have also been told that in particular circumstances a biopsy is not needed for approval with the insurance company.
Best of luck to you
MarionsSaw the Oncologist today. He said that even without the biopsy he would let the insurance people know that the diagnosis is bile duct cancer and give an explanation along with the tumor market CA 19 9, which 2 weeks ago was 656. He is reluctant to start chemo Gemzar (sp) until he gets another tumor marker from the blood test today. Reason being the weakness of my husband Bob If the marker is somewhat unchanged he would prefer to wait to give him time to get stronger. The blockage in Bob’s stomach which the Gastro Dr. said is a tumor which spread from the bile duct was referred to today by the Oncologist as a “thickening” of the lining of the stomach. He also said that bile duct cancer is almost the same as pancreatic cancer. Both respond to the same treatment. If the marker has sufficiently increased to be alarming he would start the chemo right away. So, now we will wait to see what the CA 19 9 shows. He said a normal CA 19 9 is about 30. So, some good news today that he doesn’t think we will have trouble with the insurance.
dzkh,
welcome and so sorry for you having to find this site.
I believe strongly in gathering second, third, and possibly fourth opinions when being confronted with any disease. Copies of all medical records, Ct scans, reports, etc, are easily obtained and can be forwarded to other physicians for evaluation.
Also, when entering “stent” in the search function on top of the page, you may find some answers for some of the questions you have until others have a chance to answer you.
Best of luck to you,
MarionsI just joined this site and am looking for some feedback.
My dad was diagnosed about 6 weeks ago with a klatskin tumor that is on the liver and the lymph nodes. No surgery option. We were told chemo would prolong lofe 6-12 months.
He had plastic stents put in in November and Metal stents in December. After 6 weeks, the jaundice is still not any better and the itching has begun.
They have not started chemo b/c of the jaundice.Anyone ever been in this situation?
annshal,
My husband had one needle biopsy confirming the CC diagnoses therefore; I am not able to answer any of the other questions. Possibly, someone else on the board will be able to share more information with you in this regard.
As far as I know, at this time, repeated surgery will be highly unlikely in your husbandMarions thank you for your prompt reply. Did you have only one needle biopsy and that was successful. I am wondering why they went back to the bile duct to try again for a biopsy. They had tried that with brushings twice. I wonder why they wouldn’t try the new tumor located in the stomach.
annshal,
I can only speak from my own experience and yes, a biopsy has to confirm the CC diagnoses in order to establish a treatment protocol. It is not uncommon for brushings to be either inconclusive, or negative in its findings. As it happened in our case, CC tissue was retrieved and confirmed to be positive at a later stage, but certainly before treatment for CC was implemented. This did not involve surgery but rather; it was done through needle biopsy.I am hoping for your husband to recuperate real soon.
MarionsWhen my husband was first diagnosed the Dr. could only take a brushing of the tumor cells, since they could not reach the tumor. Came back inconclusive. However, the Dr. said he was positive it was bile duct cancer. He received no chemo or radiation. Then the tumor spread and blocked the food drainage from his stomach and a new opening had to be provided to drain his stomach. The surgeon did not take a biopsy – said he didn’t know he was supposed to. The oncologist said he needed a biopsy to be able to start chemo treatment. So, a needle biopsy was taken. Three tissue sample were sent to pathology. Came back non diagnostic. Not capable of providing necessary cell info. The oncologist is out of town for Christmas and not back until 28th Dec. His nurse said she would save an appointment for us but its the Dr’s call on this one. Whatever that means. He did mention that the insurance would need to have biopsy clarification in order to pay. Anyone else have this kind of trouble with biopsies, or how a biopsy was eventually done and proved satisfactory. This last surgery on his stomach has left him very weak. I hope the Dr’s are not thinking of doing stomach surgery again. Since all Dr’s agree that it is bile duct cancer I wonder if this should be suffiicient for the insurance people.
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