Difficult Diagnosis - Long post, sorry!

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My partner was diagnosed with HCC in the liver just over 3 years ago. He is under Kings who have been extremely good up until recently. He had all the chemo (injected direct to site), was then assessed for transplant which went ok but his blood platelet levels were very low so they decided that route was not viable. The 2 tumours were then surgically removed, although there was some reluctance to remove the smaller one due to its location by the bile duct, but it was removed in the end. The prognosis at that time was good although they did say the tumours could regrow as he has cirrhosis and diabetes, both contributing factors to this. Biopsy of the smaller tumour showed traces of bile duct cancer cells, and he was referred to local hospital for chemotherapy as a preventative measure, which would be done for a six month period via tablets. At this point, due to his blood platelets being so low, it was decided that this treatment would not be given, but all the usual consultants appointments with Kings would continue.

Regular check-ups, scans etc showed all ok until July this year when he was called to say that they had found “a shadow” and that we had a face-to-face appt quite quickly after this at Kings. We live in Kent so a trip to Kings takes up at least 4-5 hours of our day there and back, however, needs must and we duly travelled up there on the day of appointment.

The appointment lasted less than 5 minutes with the consultant, who informed us there was one tumour, again near the bile duct (we even saw the scan picture) and I pointed to the shadow he was talking about and asked if it was bile duct cancer. There also appeared to be another “shadow” right next to it but he only said there was one. At that time, we were informed that a meeting would take place on the Thursday of that week (our consultation was on a Monday) and they would “definitely” call on Thursday to give us an update.

Friday came, no telephone call or contact whatsoever. Now, we both understand that sometimes it’s difficult to make any hard and fast plans, we know that one thing can be agreed but plans can change, but to be left in limbo, with a new diagnosis is really not acceptable. So, we both called and emailed his nursing contact at Kings. To be fair, she rang back quite quickly, but told us that they were still considering what to do about BOTH the tumours. BOTH? We told her that we had only been told there is ONE tumour, not TWO! Very frustrating to say the least. She was very surprised but told us that yes, there are TWO tumours and because the belief is that there is HCC and Bile Duct Cancer, it is a complicated case and one which has to be looked at carefully.

So began the usual again, lots of scans and numerous blood tests. Kings made lots of appointments for telephone consultations, many of which were cancelled but we were not informed of it. One we waited for 8 hours for the call, despite ringing the Liver Outpatients who said the call would still take place, no call came through. Again, very frustrating and extremely stressful for us both. Eventually, after much deliberation, a referral was made for my partner to attend Guys Hospital, with a view for chemotherapy.

We attended an appointment last week, where my partner had various blood tests etc, but we were able to see his consultant for the chemo. A very informative meeting, she was very helpful and was able to answer all the questions we had but, yet again, we found out that back in July, Kings had found the aggressive cells in a local to the site lymph node. No-one had mentioned this AT ALL. This was the first time we’d been told about it. Do you know how utterly frustrating and angry it makes you feel, not being told the WHOLE story, just one tiny part of it? 

Anyway, the most recent part of my partner’s treatment will be chemotherapy which he will start at Guys later this month. Our concerns relate to how long it’s taken to get this far as the tumours appear to be aggressive and we were told one is 3 cm and the other 2.5 cm, grown in a three month period, made us ask how much bigger it’s been able to get in the time it’s taken to decide what treatment will be administered and where. My main reason for posting this up is to make people aware that sometimes you don’t get the full picture from the consultant and you must question them. I will be asking questions at the next consultation with the guy at Kings as this is not acceptable. Even thinking about it raises the stress levels and that is something all cancer patients are told to avoid.

sorry about the long post, this is the abridged version though…..

  • 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.

    Thanks very much for taking the time to post about you and your partner's experience with bile duct cancer as I'm sure other members of the group, plus new people coming here, will find it helpful.

    You are right that no matter what type of cancer you have, you need to go armed with questions for the consultant so that you get the full picture. From my experience some consultants tell you everything up front whilst others tell you the bare minimum. With the latter I assume it's because they're trying to judge how much information you want and, if you ask questions, then they'll happily answer them.

    Wishing you all the best

    x

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  • Thank you for this Elsie I saw the consultant two week ago and didn’t realise what I thought was a 1.5 cm lesion or polyp in my gallbladder is actually a 3cm until I saw the letter yesterday which is a complete game changer. I am going to ring his secretary Monday but am feeling very stressed at the moment. 

  • I hope the secretary is able to help you. My advice is to record all conversations that you have with your consultants, you can ask if it’s ok or just do it on your phone in your pocket so you can listen again at another time to make sure you don’t miss anything. Unfortunately, the story I posted above didn’t end well, and I lost my partner in January. Make sure you question everything you’re not sure of, ask to see the scans, double check the information given to you and if they don’t call you when they say they will, call them. Keep doing that until you get a response. Be a pain to them,  it’s your health and your life and that is so important. My life has changed so much in the last few months, a year ago we were on holiday in Devon with what we hoped to be many more years together, but sadly 8 months later he was gone. I wish you all the very best.

  • Thank you for your reply Elsie. I am so so sorry to hear you lost your partner. If it is any consolation me seeing your post will help me deal with what ever I have in front of me. I definitely I’ll do as you have said thank you again. 

  • You’re very welcome. I hope everything goes well for you. If you want to ask anything or need a perspective from what we went through just put up another reply. I’m happy to talk about it. All the best.

  • Thank you Elsie that’s very kind. Take care x