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Diagnosis without biopsy

Megs20
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Hi everyone,

Apologies for the long post!

Last week i was told the devastating and shocking news that i had stage 3 bile duct cancer. I'll just explain how i got to this point. At the beginning of lockdown, i noticed a small lump/swelling under my right rib cage. This was not painful and at the time, did not give me any gip(jip?) At the same time i had terrible and constant back pain that at times went down my legs. I had contacted my gp and had several telephone appointments because of the covid situation. Then by July, the lump had become a lot bigger and was starting to cause me anough pain that at times i was doubled over. The gp then asked me to come in and have some blood tests that showed elevated liver function results and low vitamin D levels. A couple of weeks later and i was struggling managing the pain with paracetamol and ibuprofen so gp called me in, examined me and said the lump was concerning so referred me to hospital for a scan.

Before the appointment came (also a telephone consultation) my partner insisted i went to a&e which i did and they arranged an ultrasound scan which showed a shadow on my liver. I was immediately sent for a CT scan which confirmed this but offered no other information. Had an MRI scan and it was a few days after this that myself and my partner were given the devasting diagnosis.

My care was passed on to another hospital who specialise in cancer and i was told that there would be a DMT meeting and i would then meet with a specailist to discuss treatment.

Because the tumour is so large (10.5cm x 7.6cm) surgery is not an option and so i would have chemo in a hope to shrink the tumour and then we were hopeful i may then be in a position to be operated on.

However, yesterday when i met with a liver specialist, he told me that he did not know what it was and needed a biopsy to determine what in fact he is dealing with. 

I am now left with a million questions and actually can't belive i was given this diagnosis. We had to tell our children the news which obviously has left them extremely upset as well as us, family and friends.

 

Where we currently stand is that it may well confirm the original diagnosis or could possibly be something else. 

It's hard to narrow it down as i don't have any jaundice or similar symptoms. My CA 19-9 level was 1297 which i was origionally told confirmed it was a malignant tumour but then contradicted by the liver specailist yesterday that it wasn't concerning. I have been prescribed some Butec patches (i've not used these yet) and cocodamol (these have really helped) for the pain which has been quite bad.

 

I have had so much conflicting information and unsure if any DMT meeting even occured as the specialist just told us the HE couldn't tell what it was.

 

Has this or something similar happened to anyone else? I just don't know what to think.  When i questioned why i was given this diagnosis if not confirmed, the specialist said "well, if the biopsy confirms it is cancer, at least you have already been told"

  • Offline

    Hi megs20, my husband has lung cancer and the sequence was the same as yours.  Scan, tumour diagnosis, advised cancer but need a biopsy.  We chose not to tell family until we had biopsy results, which confirmed what type of cancer it was.  The problem is that until the biopsy confirms the diagnosis they don't know what they are dealing with and the treatment is decided in a MDT with everyone agreeing the way forward and how best to treat your particular cancer.  Treatment nowadays is geared up for you personally, so not like it used to be.  Obviously you will be scared and worried, as were we but if you receive the care that we have then you will be in good hands.  Not being in control is the worst but I hope you get some relief from my reply.  All the best, Carol x 

  • Offline in reply to Dor06

    Hi Carol,

     

    Thank you for your reply. How is your husband doing?

    In that initial call to get the results of the scans, we were told in no uncertain terms that the diagnosis was stage 3 bile duct cancer and the focus would be on quality of life. We were given some time in another room to let us process the news and although i barely remember a thing, i asked about how on earth you break this news to the children/family. Advised not to hold it back as they pick up on things easily (ours are all teens or young adults) and so eventually we told them. 

    The tumour marker CA 19-9 came back as 1297 which "confirmed" it was malignant. We were also told that they may ask for a biopsy to help determine the correct treatment (not confirm diagnosis)

    An MDT meeting was meant to be held Tuesday just gone and so we were looking forward to getting more information and what their treatment plan was but instead, we heard nothing about the meeting (if one happened) and were only told that he couldn't tell what it was. 

    It's all happened really fast and now we are left wondering if it is cancer or not. The liver specialist wants to rule out several other disorders or conditions or confirm cancer.

    Megan x

  • Offline in reply to Megs20

    Hi Megan, it's all confusion and worry at the beginning, unfortunately diagnosis takes time and we are left in limbo and scared, worried and left to answer questions that we don't have the answer to.. Our daughters wanted to know everything even when we didn't know!  Norman was 71 when diagnosed with stage 4 cancer, you don't go higher than 4 so it wasn't looking good but we are three years into continuing treatment and take it a day at a time.  I started writing a daily blog, hence the amount of replies on my Stay Strong page.  Keep us updated if you wish as there is a lot of help and understanding from those going through what you are experiencing now. 

     

    Carol x

  • Offline in reply to Megs20

    Hi Megs. 

    In someway I'm similar to you. I was diagnosed Feb 2016, prostate Cancer gone to lymph nodes, spine, ribs, pelvis and a lung, classed as stage 4 and uncurable had chemo and on permanent hormone therapy, managed, I'm also a registered carer for my darling wife has Alzheimers and parkinsons plus other problems. 

    Early this year my cancer decided to bite me rather hard, so oncologist put me on new meds, after a month she told me there wrong ones and going to try some others all this time cancer count is rising and now classed as palliative care, still feeling OK and looking after my wife. 

    Just waiting for oncologist to get meds sorted and hope they work. 

    Main thing I've found is keeping positive attitude nomatter what and keep fighting. 

    Hope you find out what's going on with your results soon. 

    Best wishes 

    Billy

    P.s i was diagnosed from a blood test before any scans or biopsy. Scans were mainly to check where it had gone. 

  • Offline in reply to Dor06

    Hi Carol,

     

    It really is a confusing time right now. It sounds as though you really have had a tough few years but sending best wishes to you all. I will have a look on your blog. Thank you for your advice and support.

     

    Megan x

  • Offline in reply to Billygoatt

    Hi Billy,

     

    Thank you for your message. I can't imagine how tough the last few years have been for you but clearly you are a fighter and have a really positive attitude towards everything. I am remaining extremely positive too as if i didn't i would crumble, especially at this initial stage.

     

    Best wishes to you and your wife,

     

    Megan

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