Hello, new here with just dx secondary liver cancer.

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Hello,

Hope I can join in with the group. I’m 52 with 3 older children 20, 18 and 14 and have just been dx with secondary liver cancer. Histology shows this is a spread from a tumor I had in my tonsil during 2020, which I had (at the time) successful chemoradiation over a couple of months.

Been reading some of your posts about chemotherapy. Am due to see the oncologist next week to discuss what chemo/ treatment  I can have. I have been moved from the hepato pancreatic billary team back to head and neck MDT. Surgery is not an option as the tumor is 15cm plus. I had no idea I had a problem at all until an evening in mid April when I had very sudden onset, severe crippling pain under my right rib, when, I now understand  from the consultants I've seen, along the diagnostic pathway  the tumor had haemorrhaged. I thought I had maybe had a gallbladder attack but sadly not and here we are.

I’ve really been struggling just over the last 2 weeks with swollen lower legs and fit so in TEDs and trying to keep legs elevated whilst still getting mobile, a hard balancing act! Any one else had this? Also the fatigue is like nothing I’ve ever experienced even when looking after a new born, I seem to drop off whenever I sit. That could be anaemia

still in shock as the recurrence has appeared from nowhere ( well that’s how it feels. Had last post tonsil treatments tumor pet scan in 2021 which was completely clear.

well, good to find here.  Hope to get to know a bit more about anyone also part of this not so wanted experience, if you are able to share.

thanks

  • Diagnosis of a spread is always a shock. But when.it.is in the liver, a much worse shock because of the implications of which I am sure you are aware.. I am 77 so have had my life, but I really feel for you younger people with children still at home and dependent on you. Chemotherapy is tough but you will have to be brave and grasp this chance to have more time with your kids. You have a large tumour, is there no chance of ablation, either crio or microwave? My metastasis are multiple in my liver and so I was told neither of these nor surgery was an option. I have just completed five months of chemo (two drugs) and scans have said they have stabilised so I am having a month’s break. Now I can enjoy some quality of life for a while before diving in again. Life is sweet and I don’t want to leave my husband, my daughters and five grandkids yet!  I was a very fit and active woman before this hit me. But I don’t get the severe fatigue you describe.Perhaps it is caused by something else? Vitamin B12 deficiency? I am sure your oncologist will look into it for you. I wish you all the best for your journey ahead.

  • I am so sorry to hear of your recent diagnosis. I’m not sure if I can be of any help to you, but I’d like to at least, let you know that you’re not alone. I had bowel cancer in 2019, with a secondary spread to my liver last year. It was only 5-6cms, so I didn’t know it was there. I had a liver resection in September and they found there were 3 tumours. After my first 6monthly scan in March this year I found that it had spread again. Two small tumours this time, so have recently started chemotherapy. I’m due to have 4 cycles followed by a scan. If there’s no further spread I’ll have another surgery. Who knows what happens after that. Unfortunately my bloods are below normal range and dropping before chemo started, so who knows if they’ll let me have the next cycle. The waiting for all of us is torture, and none of us have a crystal ball to provide us with any comfort. I wii be thinking of you, and hope that you get some positive news for your treatment plan.

  • Hi Jools63,

    thanks for your reply and I’m sorry to hear about all the treatment you’ve had. But you sound like you are pushing on.

    im hoping things will be clearer after seeing the oncologist later this week. Pretty sure some sort of targeted chemo is coming which I have had once before when I was initially diagnosed in 2020. Hopefully I can manage the side effects but famous, last, words!

    I have 3 older children, 2 at university but back for the summer break so thinking of ways to manage it all. And keeping them updated whilst not giving them to many worries.

    thanks again, as you say it feels a bit lonely being diagnosed at this point, 

    have a good week,