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Received diagnosis on 25 September had stent fitted a week later which led to me getting pancreatitis. Since then it’s been a rollercoaster ride. Was due to have whipple procedure in October but pre op scan showed growth to close to major blood vessel so was supposed to start chemotherapy to reduce growth away from blood vessel and then have the Whipple. Couldn’t start chemotherapy until they had a biopsy to confirm diagnosis but biopsy by EUS has been very challenging to get due to the stent being in the way. Had a third attempt EUS a few days ago 8 December and they managed to get some samples but they aren’t sure if they managed to get an actual sample from the growth itself or just tissue from close to the growth so having to wait for the biopsy to be looked at to confirm if they got the sample required. If they didn’t get a decent sample then I’ve got to go back and have the stent removed so they can get to the area they need to get the biopsy from. I understand the need for the biopsy but it’s so frustrating not being able to start any actual treatment for the cancer almost 3 months from diagnosis.

  • Hi  and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

    I totally understand the frustration you're feeling because your treatment hasn't started yet.

    I'm not a member of this group but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list where hopefully it'll be seen by other group members, who will pop on and share their own experiences of waiting for treatment to start.

    Wishing you all the best


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  • Hi  really sorry you've had this diagnosis. It definitely sounds as though you've been on a rollercoaster.

    My partner was diagnosed in October 2021 and we've both learned a lot since then - including that everyone's journey with this is different. My partner has had a different rollercoaster. He took a long time to shake off the jaundice, and then was due to have a Whipple but after 7 months (!) it turned out to be impossible so now he's having chemotherapy plus radiotherapy. 

    It's good they're trying to get a biopsy, because that could be important for genetic profiling further down the line. But it does sound really tough trying to get it.  If you can, ask your oncologist whether there are any trials that would be relevant for you to join.

    Have you checked out the AMMF website? It's full of useful information. And if you're on Facebook there's a Facebook Group which you might find helpful.

    Anyway, all good wishes, this is tough but it sounds as though you're facing it all brilliantly.

  • Sorry to hear about your partner. I’ve just recently had 6 chemos and had CT & MRI scans to review results. Spoke with my consultant oncologist yesterday to discuss results and whether the surgeons were happy to go ahead with the whipple as had been the plan. Unfortunately the surgeons still feel the tumour is too close to the blood vessel for them to operate. So the next plan is to have radiotherapy but I have to have a PET Scan first before they consider wether the radiation therapy is the best course of action or to stick with the chemo. So it’s back to the frustrating wait for a date for the scan and the decision as to what to do.

    sending you and your partner best wishes for the future.

  • there always seem to be complications, twists and turns with this cancer. Sending you best wishes too.

  • Hello. My name is Becky, and I am 70 years old. I was initially diagnosed with HCC on February 9th of 2022.  I was told by a pathologist, that this type of cancer is bad, and aggressive. He told me that I possibly have 3 - 12 months of life left. I WAS DEVASTATED! And for 3 weeks, I felt the stress all around my neck and shoulders from this news. BUT .. fast forward to my tumor board appointment, I was told that I had Cholongiocarcinoma. Another aggressive form, that is in the bile ducts. Huh? 

    I get a call a few days later, after my appointment with the tumor board. A doctor by the name of Dr. House (not the TV doc) called me, and told me there is hope! He said "I believe I can cure you."  (music to my hopeless ears)  I was a candidate for resection, since I was at an early stage 1, 2. The cancer was limited to the bile duct. I had 60% of my liver (and gallbladder) removed. That was at IU Hospital in Indianapolis, Indiana. April 26th, 2022. I was told that tumor markers were clear, and so far .. good!  My scans have been clear throughout .. and without having to do any chemo! However, I am due for scans on the 3rd of July, and I am worried. This Is Why ..

    I am feeling discomfort and mild pain around the right side, under my rib cage. I fear this is NOT good, Dr. House told me that I am in remission, but not cured.  Could this discomfort and mild pain be another warning of a tumor growing again? My first tumor removed was at 8.5 Cm. and I could actually FEEL IT on my right side. That is why I am so worried!  Please help me with some answer. Thank you for reading my post. 

  • Hi  Becky, so sorry you're having to deal with all this. I'm glad you were able to have the resection, which does give hope, even if there's never a full 'cure'.   I don't have CCA - I learned about it thanks to my partner's diagnosis - so I can't comment on what might be causing this discomfort and pain. 

    From what I've learned, I think it's impossible for anyone to know without a scan, so it's good to know they're due. It could be all sorts of things. I guess the best thing you could do for your health until you get the results is to keep breathing and staying positive - I know that sounds impossible.

    If you want to share experiences with people who are also dealing with this there is a very good charity based in the UK called AMMF - and it has a Facebook group which I have found very helpful. I'm sending you hugs x

  • Thank you so much for that info! Have a nice weekend!