Topic: my mum- trouble with diagnosis by biopsy

Hello, I'm new to the site.
My mum was "diagnosed" with cc 3 weeks ago. She went to the doctor because she developed severe jaundice and she was immediately reffered to hospital for tests. Her bilirubin levels were 500 but she has recently had 2 metal stents put in by PTC method. That was a horible experience for her, but her bilirubin levels have now dropped to 240 and are still dropping and she is feeling much better for this, so all in all, the stents have so far been a success.

The doctors have said that they cannot operate on her tumour, due to it being located next to some major blood vessels. However, they propose to start chemo in order to shrink it or at leat keep it at bay. They can't start chemo yet due to the amount of weight she's lost and also due to the fact that her bilirubin levels are still too high, but they want to start it in the next few weeks.

The trouble is, when mum was having her stents put in, a biposy was taken by brush in order to obtain a definite diagnosis of cc and also to grade and stage it. However, the results from the diagnosis came back as undefinitive. The doctor has said that she is 99% sure that it is cc but that the only way of getting a proper diagnosis is by biopsy. At first, she said that they could probably just start chemo without having this "official" diagnosis, however mum's oncologist has said that she needs to have another biopsy by PTC in order to get a diagnosis before starting chemo.

We are all obviously worried about too much time passing before starting chemo, and mum is really dreading having another PTC procedure as she found it quite traumatic the first time.

Has anybody else had any trouble with obtaining a definitive diagnosis by biopsy?

Any info would be greatly appreciated.

Many thanks

Re: my mum- trouble with diagnosis by biopsy

Hello-

I guess i am up earlier than anyone else so i will be the first to say i am very sorry for your family's recent news with your mum. You will get tons of good advice, answers and support here, so while none of us  particularely want to be on this site, i can personally say these folks are the most careing thoughtful and informative around. They speak from experience.
And to answer your question, speaking from my moms diagnosis expereince... yes it takes a long time and they use words like inconclusive. For my mom it was from End November til week before Christmas last winter.... going from a UTI, to gall stones to pancreatic cancer to finally CC. Her also is inooporable and she had 2 stents put in as well. They later replaced teh bile duct one with a metal one and took out the 2nd one all together.
It also seems like forever until she started Chemo. She didnt start until Feb. Its really hard to want to start 'doing something' to fight this thing and be told you have to wait. I cant speak to the need of another PTC procedure....hang in there! I found a lot of comfort in watching the Webnar on this site  by Dr Ghassan- i think it was the Reveiw of CC research??? It explained to me how the diagnosis is more an elimination of what it is not.... check out the video..

Well that is what i can offer you... be brave even though its really hard. i am sure everyone else will offer words to you too...

Best,

Re: my mum- trouble with diagnosis by biopsy

Hi
My mum was diagnosed with Intraheptic CC in May of this year and she too had trouble with her first biopsy. Mums first biopsy results can back inconclusive which was very distressing for all concerned, especially mum. Not only were my mums biopsy inconclusive, but she also has a bleed. After a week later and a lot of pain and discomfort mum had another biopsy and the news we did not want to hear came to us. We were told that a biopsy was the only way to clarify what time of tumor we were dealing with.

Mums tumor too is inoperable so a mental stent was inserted into her bile duct and within a week mum was at home resting with hardly any jaundice signs. My mum started her chemo four weeks later (June) with Gemcitabine (Gemzar) and Platinum.

Thinking of you and your family at this difficult and frustrating time.

X

Re: my mum- trouble with diagnosis by biopsy

Hi there,
           Welcome......I think its pretty common for it to be inconclusive with brushings and a proper biopsy needs to be done.I f that other procedure was unpleasant for your mum let them know in the imaging department she may need a bit more sedation for the procedure and perhaps someone can stay with her right up til she goes in....those beds are pretty hard and narrow,it is uncomfortable!   ........good luck                        Janet

Re: my mum- trouble with diagnosis by biopsy

Hi,
Most of the time, ERCP brushing is difficult to get good result especially the tumors grow along side the wall of the bile duct and not prutude outward into the bile duct. MRCP is another method to check the narrowing of the bile duct,combine with CA19-9 to make the call. Yes, I know patients can start chemotherapy without 100  % sure. By experienced oncologist or radiologist can do so base on their examinations and experiences of the patient.
Ian just a patient and not a doctor.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: my mum- trouble with diagnosis by biopsy

Dear HL 24, I want to welcome you to our remarkable family but sorry you had to join us. I am truly sorry to hear about your Mum and I agree with Percy about starting the Chemo. My husband had 2 stents and had exchanges every 2 months or so and never had pain from the exchanges. So, I also agree that perhaps she was not given enough sedation. It is important to know the Stage and proper diagnosis. Let them know that she did not have enough sedation for the stents at that time. Knowledge is extremely important to fight CC so try to read up as much as you can and attitude is everything, try to be very strong for your Mum and for yourself. Please keep us posted as we truly care!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: my mum- trouble with diagnosis by biopsy

hl24... welcome to the forum. Just want to confirm what the others have said. A positive biopsy is not required to establish the diagnosis. It's very common for the brushing biopsy to be inconclusive, because it collects only a very small amount of tissue. My wife's biopsy came back as "suspicious for adenocarcinoma", so it wasn't a definitive result. The doctors recommended surgery anyway, based on all other tests they did (ERCP, CT, MRI, endoscopic ultrasound). They gave us the odds: 90%-95% chance that it was CC, 5%-10% chance that it was something else. The definitive diagnosis was established after the surgery, when they did the full pathology exam of the tumor.

Re: my mum- trouble with diagnosis by biopsy

Hi there,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your mum. But I'm glad that you have joined us all here as you have come to the best place for support and help, and you will get tons of both from us all.

My dads CC was also deemed inoperable for the same reasons as your mum, in that it was too close to the portal artery. But that is good that your mum will be starting chemo and hopefully once the stents start working as they should then this will get her bili down so that they can start the chemo. Sometimes it can take a bit of time for the stents to wrok fully to get the bili down and my dad had a metal stent as well and it took a bit of time for his to get going as well. But once it started working properly he started feeling tons better.

Please keep coming back here and let us know how things go for your mum. I know you'll have questions so please don't hesitate in asking them and we'll help if we can. We are all here for you and we care.

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: my mum- trouble with diagnosis by biopsy

Thank you all for your replies and your kind support.
As you all say, we all wish we hadn't had to find this site but it really is wonderful resource, both for information and for support.