Carol's story so far

Discussion Forum Discussion Forum Introductions Carol's story so far

This topic contains 4 replies, has 3 voices, and was last updated by  Carol 5 months, 2 weeks ago.

Viewing 5 posts - 1 through 5 (of 5 total)
  • Author
  • #11231


    I was diagnosed with primary Cholangiocarcinoma on 31st July but it has been a long journey to get here since March this year.

    I had a secondary cancer successfully removed on 12th May but did not know then that I had this ‘silent’ cancer. I did not have any of the classic symptoms for Bile Duct Cancer besides a dull aching pain under my right shoulder blade which I put down to sitting at a PC all day and just a bit of itching. I first visited my GP in March and was referred to a Gynaecologist and Urologist to investigate bleeding. I ignored a consultants advise that I could delay or not even bother to have a polyp on my Uterus and a 9cm ‘benign slow growing’ Ovarian cyst removed. I had both Ovaries removed on 12th May.

    On 1st June the biopsy shocked everyone and muscinous adenocarcinoma in Krukenberg deposits on both Ovaries that had metastasised from a primary in the Upper GI area. I was referred to my Oncologist and then began the journey of tests and scans to locate and then successfully remove a 4cm tumour from my Liver that was eventually identified to be the primary tumour. ( A long story….. including ruling out a suspected recurrence of a perhaps undiagnosed Gallbladder cancer 4 years ago when an inflamed Gallbladder and Gallstones were removed and entertaining the notion of a primary cancer of unknown origin, hidden cancer which I had never heard of before. It perplexed me and also the consultants and MDT or so I believe.)

    After the tumour on the Liver was removed on 14th July it was discovered to be attached to the Intrahepatic Bilary Tract – so I have Bile Duct Cancer, stage 4. The disease had spread to 2 local lymph nodes which were removed but no other Peritoneum disease was found. Part of the Liver and the Appendix was removed as a precaution. A 17mm Ommntal nodule of ‘indeterminate’ origin has increased in size over the last few months and systemic chemotherapy of Cisplatin and Gemcitabine is due to start next week. So mine is not your standard progression of an unusual type of cancer so I am not sure this experience would help those asking about successful operations on secondary cancers? I was so very fortunate that the primary cancer was found asymptomatically while it was still operable.

    I spent August recovering from open surgery and visited Penny Brohn in Bristol mentioned on AMMF and took part in a 2 day ‘ Living Well with Cancer’ course as an introduction to the Holistic approach and gained excellent advice on nutrition and how to cope with stress and relax and help my immune system. I would really recommend this to anyone considering it. Everyone there is so kind and supportive and extremely professional. The setting is peaceful and restorative. It gave me the tools to help me try to cope.

    Also, I have greatly appreciated reading about everyone on the forums’s experience with chemotherapy and being allowed to read about some of their journeys.

    I understand that Cisplatin and Gemcitabine is the chemotherapy that is standard treatment for this type of cancer that has spread. While I am fortunate that the primary and one secondary have been removed, this does mean I will be having chemotherapy with no way of measuring any success of the treatment until it reappears? Which is perplexing. Will stay positive and not entertain that prospect. However, I have read about some others on the site having genetic testing to try to find treatments and suitable clinical trials. Molecular screening is mentioned on AMMF for immunotherapy which I am particularly interested to learn more about and wonder if it would be suitable for my type of cancer at this stage of treatment in addition to chemotherapy or in the future?

    Any advice and experiences would be appreciated.



    Dear Carol

    What a convoluted and stressful pathway you have been through to arrive at your diagnosis of cholangiocarcinoma. Many thanks for sharing this with all of us on the forum – although your experiences are unusual, I’m sure many will certainly relate to quite a few of them.

    Thank you for letting us know that you followed up AMMF’s link and spent some time on Penny Brohn’s ‘Living Well with Cancer’ course*. They are very helpful, compassionate and empathetic, as you have found out.

    Assuming the metastatic disease you now have is not operable (and worth asking about if you haven’t already) then yes, the Gemcitabine and Cisplatin combination is the usual treatment for inoperable cholangiocarcinoma. In answer to how you will know how things are, you should be scanned at the half way point through the Gem/Cis course to see what effect the treatment is having – providing your cancer is stable or getting smaller, then treatment will continue. Then you should be scanned again at the end of the course, and then at set intervals to check how things are.

    In the meantime there are a couple of things you could consider, one of which is to ask for a second opinion from a named cholangiocarcinoma ‘expert’ to double check that the treatment pathway you are on is correct for you, and also you could consider molecular screening. This would show which gene mutations are ‘driving’ your cancer, important information if you wanted to pursue any of the trials looking at inhibiting those specific mutations at some future point. The Sarah Cannon Institute has some clear information on molecular profiling:

    I hope some of this is helpful for you, and that others will come in and share their experiences with you. And please post again if there’s anything else you think we can help with, and to let us know how you get on.

    With best wishes


    *The link for others who might be interested:

    Please note it is not appropriate for AMMF to give specific medical advice or recommendations, but we do have a wealth of experience and information which we are always willing to share, whenever possible.



    Dear Helen,

    Your advice has been very helpful for me. Many thanks. The site has been such a source of reliable information.

    I have been reassured by the second opinion checking my current treatment pathway which I followed up on at your suggestion.

    With regards Molecular screening, I am being treated at the LOC who as it turns out have a partnership with Sarah Cannon Institute and I was eventually signed up for this on the day that you replied to my original post….the day that I started Chemotherapy. I am 2 cycles into Gemcitabine and Cisplatin chemotherapy and seem to be tolerating it OK with few noticeable side effects at the moment. Despite having the primary cancer operated on, I have this type of Chemotherapy as I had a metastasised cancer on my Ovaries – also removed. I have been told to forget about the Omental nodule of ‘indeterminate’ origin for the time being – Easier said than done? There is only one nodule and if it were metastatic disease there would be more? Besides, I have been told that it would be difficult to locate and to operate. But if it doesn’t ‘disappear’, it will be possible to look at operating after chemotherapy which is a priority given the mucinous nature of my cancer. Mucin producing types of cancer are also not usual and normally aggressive. Perhaps someone else might have experience of this type of cancer?

    As you say, I will have a scan after 3 months. This will be open to interpretation……if the nodule reduces in size does that mean the Chemo is working as it is ‘indeterminate in origin? Only if there is a reoccurrence then we know it is NOT working. Without a primary or a determinate secondary, I have no way of measuring effectiveness and this was why it was difficult to sell the idea of Chemotherapy to me. My reward for tolerating the first course will be another 4 cycles of 3 weeks……

    All this may not resonate with others but it might help others considering Chemotherapy to know that I personally seem to be coping with it. I am a not especially fit 61 year old and thankfully do not have any other symptoms of the disease to contend with, apart from the surgery. I follow the Rainbow diet as best I can and eat lots of small meals as I have a steroid induced appetite. I had 2 days feeling unwell after dining out at a Chinese restaurant and so will not be doing that again and this reinforces for me the benefits of a healthy diet?

    I use Fishermen’s friends lozenges to mask the constant metallic taste in my mouth or foods with strong flavours. I eat and drink lots of ginger to help with any feelings of sickness and indigestion that I had also prior to treatment. I do try to motivate myself to do at least 30 minutes of exercise a day and wish I could do more. I find mindful meditation helps a lot especially during chemotherapy. I do have plenty of examples of what I have come to identify as ‘Chemo Brain’ but have to learn to laugh about these and try to appreciate life.

    Kind regards




    Your Journey sounds very interesting Carol…and it’s interesting to see different Tx option across the country.

    i have been diagnosed with Cholangiocarcinoma, intra hepatic primary disease mass in liver.

    took ages to get to actual diagnosis, started with Biliary colic Bh in August, that cleared, follow up bloods found raised CA125, so went for urgent ultra sound and CT and found mass on liver and mets in Peritoneum, remained thinking that mass was a metastasis, and referee to Gynae, finally Liver Biopsy of mass showed Adenocarcinoma of Biliary origin.

    Consultants in Histology and radiologist decided that Liver mass was the actual primary.

    ive been told surgery is not an option, as metastatic spread, so chemo, I’m 59, still well and no real symptoms, I follow a low fat diet …. the have said they would not operate on nodules in Peritoneum, which i found odd

    im interested in your experience with Chemo….I’m due the Gemcitabine and Cisplantin to commence soon……what did you experience and when after the doses etc……any tips for help..saw CT scan rest of my liver is in good nick.

    im a NH Trained nurse of 40 yrs and feel really hard done by !!

    thank you in advance for your help

    Jane xx





    Hi Janey,
    I am sorry that I have not replied sooner but I had a bit of a set back at the end of November and just getting myself back together again now.

    I expect that your CIS/GEM treatment has now begun and I hope it is treating you well. I wanted to give you some reassurance at this difficult time. As I mentioned, systemic chemo was a hard sell on me originally but I have now had a total of 14 cycles with few side effects. Everyone is different and some not so lucky but one thing is for sure we are not statistics? All this medical malarkey was and still is alien to me. You have the advantage of your 40 years to call on and build on? But do not rule out every and any complementary support that might help you outside orthodox thinking? Every little helps? Maximise your aggregate chances? Obviously check with your Oncologist and that is not always easy. The services offered at Penny Brohn which I found through AMMF have been invaluable to me and a good start point even if you are not into ‘tree hugging’ ! They will help you address emotional issues which I still find a challenge. I recommend attending their ‘Living Well with Cancer’ residential course. Also the links on AMMF about specialist centres dealing with Cholangiocarcinoma around UK and not being afraid to consider second opinions might be reassuring and help you?

    It sounds to me that you have experienced the same trauma around diagnosis that I did. It is difficult to digest especially when asymptomatic. Things have not got much better for me over last 18 months with a cancer not behaving to type ( what rare cancer does?)and much scratching of heads and different opinions at MDT meetings I believe. I am managing the associated stress with fluctuating success.

    I was fortunate enough to have my primary tumour removed and then diagnosed but have the same CIS/GEM chemo as like you my cancer is stage 4. I have 3 week cycles, day one and 8 and then one week off. My experiences have been different during each of my 3 revisits to chemo and it might be of help to you if I place each in context?

    I had my first 8 cycles between September 2017 and February 2018. At the time this was post open surgery and systemic to clear up what turned out to be more than one ‘indeterminate’ Omental nodule and various inflammations. I coped well throughout. A little hair thinning and little neuropathy at the end. I managed sickness by chewing ginger and followed the Rainbow diet which helped tremendously with bowels amongst other things . ( I did request minimal anti sickness steroids Dexamethasone post chemo and have never needed the back up Domperidone but am aware I am given a high dose of Dexamathasone intravenously during chemo which means I do not sleep that night and the housework gets done the following day when I am still on a steroid high). I try to drink at least 2 litres of water a day. I began to increase my exercise regime to manage my fatigue mainly by walks that a 62 year old recovering from surgery could tolerate in winter months and followed exercise routine given to me by physio a best I could. I started Tai Chi and Qi gong lessons and practice mindful meditation usually unsuccessfully but never mind! I did need to take home injections to boost my Neutrophils and WBC after cycle 4. My only worrying problem was managing a chipped tooth during chemo and flu after chemo finished which involved a trip to A&E just for the day for intravenous antibiotics and then lots of rest.

    After 6 months of treatment I had a scan in March which showed up completely clear and a ‘ metabolic remission’. Good news? But I was not feeling good and was confused. I was recovering from flu , experienced night seats and was feeling fatigued still and had aches and my bloods were not returning to normal and I postponed plans for holidays.

    The scan in June revealed perhaps why- as it showed a reoccurrence of the ‘indeterminate’ Omental nodule and other multiple progressions in my Omentum and Peritoneum. Alternate chemo of Folfox was considered but CIS/GEM was deemed to have worked as cancer had been kept at bay while it was being used and only returned when I was not having it. ‘Omental surgery’ was considered but kept as back up option. An Ultrasound biopsy on the recurred cancer was unfortunately unsuccessful in producing a viable sample for genetic One Foundation Molecular testing before 4 more cycles of CIS/GEM began. July to September.

    As we were not certain how long I was going to tolerate more CIS/GEM and if it would work and with limited alternate options I resolved to do more to help myself and the chemo. I took more supplements to try to help with specific deficiencies identified and side effects ( and did not take those ruled out by doctors). Perhaps it was the good summer and I enjoy gardening but I can report that I breezed through cycle 8-12 despite expecting the worst. The last cycle 12 my Neutrophils were low and I had problems with my veins as I was being cannulated with each treatment. But I took up swimming twice a week ( with OK from Oncologist as risks of infection could be managed but not lack of exercise). I was still walking daily but still have not managed that jog yet! I determined to book a holiday and weekend away during each week off chemo. My hair got thicker and went curly BEFORE the end of the treatment! ( I think that might have been a by product of the Shitake mushroom extract supplement I took to boost my immune system?)

    The CT scan at the beginning of October showed a 30 % reduction in the existing cancer and no new progression. So the CIS/GEM was working!

    Instead of more chemo, a break was proposed while surgery to remove the remaining Omental/Peritoneum nodules to ‘ clear the playing field’. I had keyhole surgery to assess involvement. I was proposed for CRS/HIPEC surgery to remove Omentum and Peritoneum at the end of November. You cannot have cancer your Peritoneum cancer removed at this stage but you should be told why? Hopefully chemo will deal with it. There are 2 centres in UK in Basingstoke and at the Christie that specialise in my proposed surgery. It was a massive decision for me especially as I had no side effects or symptoms to alleviate and was feeling as ‘ fit as a fiddle’ ! I prepared for surgery and then a few days before it was called off. The discomfort I had experienced after I stopped taking paracetamol after key hole exploratory and sudden bloating was shown to have been caused by build up of 9 litres of acytes/fluid in my peritoneum. I was admitted to hospital to be drained and it was established that cancer progression had caused this – not thankfully liver failure. The problems getting authorisation from private health for elements of the procedure due to lack of protocol for metastic Bile Duct Cancer became irrelevant. It will possibly be revisited after I am stabilised?

    So for the first time I have been experiencing the management of symptoms and side effects – mainly pain and constipation caused by pain management and fluid build up in the abdomen and cancer progression. I am having to learn to be a better patient! I was started back on cycle 13 an 14 of CIS/GEm after another failed attempt on a Ultrasound Biopsy was made – enough viable tissue was removed to reveal an unchanged biopsy of Bile duct cancer but not enough to be sent for molecular testing of the metastic cancer ( surgeons had thought my cancer ‘ looked like’ Pseudomyoxma Peritoneum cancer possibly originating from Ovaries/Appendix removed). I am not sure if molecular testing is something that has been investigated for you. It might throw up possibilities of involvement in clinical trials and alternative treatments. But I am aware that you have to have the protocol treatments first.

    My Haemoglobin went down to 77 which meant I had a blood transfusion but felt the benefits immediately and started some exercise after one month and felt the knock on benefits. Fluid retention in legs and ankles had become an issue. I have had a Portocath fitted now to help with problems with veins caused by the 6 hour sessions for our chemo. It was not as daunting as I feared and benefits straight away. Once home I was back on the same supplements to hopefully help with the chemo again and I am hoping that the HBOT therapy I had booked for post surgery will help with oxygen levels ( and was approved by doctors). After about a month I am now feeling a bit more comfortable and managed some seasonal celebrations. I am hoping the chemo will stop the fluid build up again in abdomen but am still using braces to keep baggy trousers in check.

    We will now see what 2019 brings for us both. I do appreciate how daunting things can be and it is good to share some of my good experiences/fortune as well as our stress travelling down this sometimes lonely road less travelled?

    Best wishes to all for 2019,


Viewing 5 posts - 1 through 5 (of 5 total)

You must be logged in to reply to this topic.