Secondary any other options

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This topic contains 3 replies, has 3 voices, and was last updated by  Murdo 8 months, 1 week ago.

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  • #10442

    Murdo
    Participant

    A brief overview to date I have had wipel surgery to remove the tumour in 2014 unfortunately a PET scan in July 2016 found a secondary which was FDG avid, located in the in the lymph node portcaval area measuring 20mm, I am presently on chemotherapy which has shrunk the tumour from 20mm to 4mm, my c19 markers prior to chemo were 1200 now 13, the tumour is no longer FDG avid, the last two PET Scan shows no other tumours.

    I am looking at any other treatment options i.e Surgical, Targeted, etc.

    As well as the chemotherapy treatment, I am also taking part in a clinical research trail ‘The Cancer Molecular Screening and Therapeutics (MoST) Programme’ running out of the Garven Institute St Vincent’s Hospital Sydney results pending (6-8weeks).

    I look forward to any information or assistance anyone could offer in my treatment.

    Kindest Regards Murdo

    #10448

    Debbie_ammf
    Moderator

    Hello Murdo,

    Thank you for posting to AMMF’s Forum, we are pleased that you have found us, although truly sorry to learn you have a secondary tumour.

    I understand that AMMF is helping you with information but also hope that others will respond to your post with their own experiences.

    You have our very warmest wishes.

    #10449

    HelenT
    Participant

    Hi Murdo

    I was interested to read your story and whilst not quite the same, I have had a similar experience.  I was diagnosed with hilar CC and had a resection in November 2010.  I did not have any adjuvant chemo and went on to have just annual scans, which were all ok until June 2015, when they found a new mass in what they described as the retro-peritoneum.  After various scans and biopsies, this turned out to be recurrent CC in one or more lymph nodes. This was pretty big too, at about 8cm X 5cm.

    After an MDT meeting, it was deemed likely that surgery was too complicated due to the size and location of the mass, very close to the pancreas, portal vein, duodenum etc.  I went on to have 3 cycles of gem/cis chemo.  A CT after the chemo did not show shrinkage but did evidence some necrosis of the tumour.  I had thought that no shrinkage would mean no surgery and that I would be left with chemo-radiation as my next step.  However, I did not reckon with my excellent surgeons who said that they would be willing to try and remove the mass if I accepted that it just might be impossible.  Of course I agreed, and went on to have a long but successful surgery in December 2015.  

    I am pleased to say that they were able to remove the mass with clean but close margins and I did not have further treatment after that.  I had 6 monthly scans for the first year and am now back to annual scans.  It’s likely that it’ll come back of course, but I recognise that I just have to put that to the back of my mind until it happens and get on with my life.

    You were so lucky to get such good shrinkage from your chemo – so many people don’t and I know that overall only abou 30% of CC will have any response at all. I’m not sure that surgeons would or could actually go after 4mm tumour here but yours might be different.  Would radiotherapy be an option?  My oncologist was talking about something called IMRT which is quite precise apparently.  Might be worth looking into…

    In any case, I wish you well on your journey – let us know what you decide next.

    Best wishes

    Helen

    #10458

    Murdo
    Participant

    Hi Helen

    I really appreciate your reply, thanks for the post.

    I am so glad to hear that your surgery was successful, my surgeon will attempt to remove but wants to wait to see if any others turn up, I agree 4mm is pretty small, but i guess he knows exactly where its located due to the PET Scans which I am having every three months.

    When they did your surgery, what else did they do to reduce the chances of the CC returning i.e did they give you chemo after, as my oncologist is talking about six months cycle after surgery to mop up any residue cells.

    The surgeon has told me that after the surgery it is more than likely to return at some stage, but as I said to him it may turn up in a place that you can easily remove.

    Also I have just entered the MoST program which genetically tests you, hopefully they can pick something up on the results – In Australia they are talking about the HER3 gene and a medicine called Herceptin which is used in breast cancer, also discussed with my oncologist the drug Sorafenib which is also having good results in keeping tumours asleep.

    I have asked about IMRT but due to the area not viable for me, I have however asked Scrips in the US about proton therapy, not sure if this is the same as IMPT (just waiting on reply)

    QUESTION Do you know of any other people having surgery to remove secondary CC.
    QUESTION Do you know if your surgeon has removed any other secondary’s

    Thanks again Murdo in Brisbane

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