Hi Ellemm,

Welcome to Cancer Chat. I'm sorry to hear that you've been waiting a while to get these next steps sorted. It's of course important that you have an idea what to expect, when surgery may be likely, and also an opportunity to have any concerns addressed in the meantime. Therefore it might be worth giving your doctor a call to have some of this answered.

Regarding your upcoming appointment, you could perhaps also call the hospital to see if they have anything sooner, or ask to be notified of any cancellations that could mean you get seen sooner.

I hope you hear more soon.

Wishing you all the best,

Ben
Cancer Chat Moderator

Thank you for your reply.  I managed to talk to a nurse in the hospital where the surgeon is based and she was able to clarify why the scan would be in April.  Also I have an appointment to see the surgeon this month,  this has put my mind at rest somewhat but have found the whole thing very distressing.  I don’t know wether it’s the same for everyone or there has been bad communication in my case.  I don’t seem to have a person who I can turn to for help.

Dear anditic,  unfortunately the surgeon decided not to go ahead as they found 2 new lesions on my liver which hadn’t been picked up,

However he mentioned SIRT to me as a possibility.  As I understand it they are radioactive beads which target the tomours only.  I am waiting again to see if this may go ahead.

I am now back on chemo cis/gem.  I am having molecular profiling to see if there is anything else I may be able to have.

So we are still waiting to see what the next step may be.

I wish you all the best and hope your surgery is possible for you.

kind regards

Dear Ellemm, I’m very sorry to hear about your surgeon’s decision. It’s heartbreaking to be disappointed like that when your hopes have been raised and the prospect of being rid of it has come so close.

I too am on the cisplatin/gemcitabine cocktails. The Cis, for me, can be brutal with its side effects but I tell myself to keep my eyes on the prize and frankly I’ll put up with anything and everything if I know it’s doing it’s job properly (or more to the point that I’m responding well).  So, I sincerely hope you’ve been responding well to them.  Those lesions may well disappear and surgery may yet again be an option for you. The inevitable ’scanxiety’ always creeps in for me at every interim CT scan report for the very same reason.

I’ve not heard of SIRT before but that’s certainly going to be on my agenda for my next meet with the consultant.  Thank you for the heads-up.  Do let me know what happens for you.

The genetic sequencing is a great idea. I believe there are over 300+ different cancer tumour mutations.  Once your oncologist knows the genetic type they’ll able to tell you about clinical trials as well as existing targeted treatments that are already in use.  I had a liquid biopsy (basically a blood test) to find out my own cancer tumour genetic type quite early on.  I was in full pursuit of anything to give me hope.  I was chasing a clinical trial for a new bile duct targeted drug which was having great results at UCL Hospital in London.  I had a 1 in 6 chance of being suitable and I had to pay for the analysis myself, but sadly my tumour gene type was wrong for the trial.  

But as that door closed another opened (as is often the way). It turns out my tumour gene type is HER2 for which (quite surprisingly) there is a drug already used in many thousands of cases of breast cancer called Enhertu. And it’s proven itself to be effective.  It would of course be an unusual use-case for a bile duct cancer patient like me (and it may take some clever persuasion from my oncologist to get it) but I would never have known about this potential new line of attack had I not had the sequencing done.  These highly targeted drugs are I’m told a second line therapy (after chemo).  I would definitely get it done though.  You just never know what new door it might open for you.

Do stay in touch and let me know how your battle plans turn out. In the meantime, NEVER give up hope!  Kindest.  

Dear anti tic,

thank you for your uplifting reply.  Yes I was sorely disappointed about my surgery options.

I haven’t found the side effects of the chemo too bad apart from the tiredness and weakness.  The worst of it for me is the steroids and how I feel afterwards.

my oncologist isn’t the most positive of people and we have had to push and ask for this molecular profiling to be done, which we are having to pay for.  I was tested for a gene at the start which I didn’t have, but was told the he only tested for funded drugs.  

kind regards

Dear Ellemm, What a great pity your oncologist isn't more positive and optimistic.  Let's face it, given that his/her patients are all going to be caught up in a whirlwind of emotions, it's essential that he/she provides a positive and supportive service while placing a steadying hand on the tiller and giving you a clear strategic plan for you and your treatment.  These are the essential pre-requisites of the job!  You are doing the right thing by pushing.  We Brits are too reserved in general.  But our present situations are very different to complaining about an overdone steak in a restaurant.  Self-advocacy is the name of the game!  If you're not getting what you need, I've found that being well-armed with your own research and knowledge and and making your case in a calm, rational but firm manner can break through the ice. 

One thing I've found is that projecting your own air of confidence and positivity when in front of the oncologists and nursing staff, can bring out the best in them. In your mind, you are going to beat this one way or another.  I found that taking back some control over my cancer helped with this - whether real or imagined it doesn't really matter.  I took it upon myself to try and create the very healthiest version of my myself that it was possible to be.  My goal is to make my body a frighteningly dangerously inhospitable place to be a cancer cell.  So, I started doing more exercise, going for lots of walks, eating for good gut-health to boost my immune system and I gave up all alcohol (save for the odd glass on a special occasion).  The fact that I was doing something for myself - taking an active role in curing my cancer - made me feel less dependent on the doctors and their modern medical science and that I still had an important job to do.  I decided to make my new full-time job ME!  And it does genuinely make me feel a bit better too.  I feel less at the whim or mercy of an enemy I cannot see.

So, I told the consultant what I was doing and he sat up and reappraised me.  He took notice and I think he decided to give more thought to possible ways forward.  He said most people he sees are extremely unwell (and for good reason) but that, for the most part, most of them felt helpless and were really hoping that it was something that someone else would do for them that would make the difference. I think he finds that a bit depressing.  It's a tough job and one that I think must make doctors a bit jaded after a while.  So, my plan was to inject some positive fire into him.  If I was going to push the boundaries with a bit of oomph and do everything in MY power to get well, then I expected him to do the same.  I said I needed him on my team - I couldn't do it without him and the drugs - but I could give the drugs their best chance of success by being the best version of me, so the least he could do was work with me (as a partner) and be a bit more creative and imaginative. 

Maybe you could be the ray of sunshine your consultant needs?  Remember, positivity is infectious.  People (all people) gravitate towards confident people who seem to know what they're doing.

One other thing you said struck me.  You say your tumour was genetically profiled at the start because you were told you weren't a suitable candidate.  It occurred to me that they couldn't tell you that unless they had identified your precise genetic type.  So, that would mean the name of your mutated cancer gene is already known.  This in turn means that you should not have to pay to be told the same thing again.  I'd suggest asking your oncologist to make an enquiry or asking him/her to put you in touch with the histology department.  It's your data after all.  You're entitled to know.  Armed with that information you and your oncologist can search for ALL clinical trials and current drugs that may have been developed for your cancer gene type.  

One other thing you could add to your talking points with your Oncologist is the immunotherapy drug Durvalumab (branded as Imfinzi).  It's used in combination with Cis/Gem.  There are others too.  See this article: https://www.aacr.org/blog/2023/02/06/encouraging-treatment-advances-for-aggressive-cancers-of-the-biliary-tract/#:~:text=For%20bile%20duct%20cancers%2C%20also,in%202022%20in%20combination%20with 

Keep smiling, Ellemm!  Kindest as ever.