So here I am just over 2 weeks later waiting on my latest MRI scan result, 19 months since my original OM diagnosis. It’s very stressful waiting. I am consumed by the statistics ie 40% or so get metastasis (mainly in the liver) and that the outlook is poor, even with treatment. I am tempted to discontinue the scans to avoid the stress and due to the fact that treatment options don’t offer much. Has anyone else done this or thought about doing so?
TIA
Paul
Hi Surfer boy, interesting post. I have secondary metastasis in the bones, so i am one more step ahead of you thats if it ever happens to you which i hope it never does.I lost a friend to secondary liver cancer only last year in fact. We both got diagnosed with secondary cancers within a couple of months of each other in 2020. I dread all my MRI, CT scans ect like everybody does its so stressfull and my anxiety levels are out of control. I actually had my CT scan and a bone biopsy yesterday so its a double whammy for me. But this is all besides the point, although my friend was unlucky enough to have had the secondar in her liver and yes she passed in just over 3 years had she not of had the scans she would not have had that extra time with her family and friends who loved her. You say the treatment for liver cancer does not offer much, i know of other who have a much better prognosis and are still around today. I really do think how early its caught helps a lot and that can only happen if you attend all the scans. Secondary cancer in the liver is not all gloom and doom i have known other who have had it elsewhere and passed a lot quicker, there is a lot to be taken into concideration when one is diagnosed with secondary cancer of any part of the body. If i had advice to give it would be attend all scans and if you were ever in this situation remember there is a lot of new drugs out there now to keep us all going that extra mile. Wishing you Well
Thank you for your thoughtful response. That’s certainly given me food for thought. I think I’m currently biased as I’m in that state of heightened anxiety while waiting. Struggling to do my job while it’s my eldest daughter’s 18th in 2 days and just putting one foot forward is so hard while the uncertainty re MRI continues to loom.
I wish you all the best with your health and happiness
How are you doing now? I too wondered whether going for the scans are really worth it, when metastatic uveal melanoma doesn't respond to chemo, and when the 'big' liver treatments (like they do in Southampton Hospital) are cripplingly expensive (£14,000 per treatment and you'd need 3 I believe), and when immunotherapy is so destructive and painful for every other part of you (and doesn't give much extra life either, I am told.) I am currently waiting for an urgent MRI for small liver lesions found on a CT 10 weeks ago now, but the worrying is horrible. I don't know if it is worth all the hassle either, when, if they find something, what can they honestly do? Sending a hug, take care.
Hi
well I’m still here! I have decided to have liver scans every 9 months rather than every 6 months. It’s coming up to 3 years since my original diagnosis. I still consider not having the scans but am presently persisting. I hope the MRI doesn’t show anything sinister for you. It’s a worry nevertheless. I presume you are aware of Ocumel and I have found MacMillan nurses great for a chat if ever I was in crisis mode. Personally, I considered the worst case scenario ie death from metastatis and found some peace by realising it ain’t too bad. Okay, I’m being slightly facetious but the reality is that we all are going to die at some point and working through that thought has helped me, even though my death might occur sooner than I would have liked (I’m pushing 60). I cope very well with it all these days although it remains in my thoughts regularly. Take care my friend
I read this post and the phrase "my death might occur sooner than I would have liked" and it resonated.
As a military veteran, it was a very real and imminent circumstance that I had to face as a 19 year old some years ago.
How does that relate to now? Well actually in it's own way it meant that I could rationalise my diagnosis in two ways. One was that from that earlier perspective, I have already lived far longer than I expected at that point, but the new situation brings that point again and exactly how I faced it, that it may change the timing of what remains in mine, and everyone's, life an inevitable end point.
Until the point that any outcome of monitoring/scans may change the perspective as to how imminent that may be, I can only enjoy those days where additional treatments and such don't yet come in to consideration, as best I can. I hope to have that same outlook if that moment arrives.
I hope anyone reading this can be as healthy as this allows you to be, and that you can live as happy a time as circumstances allow and change.
Hello, thanks so much for your reply. I feel pretty much the same, that we all die at some point, and there is no point in stressing about it, just enjoy the time we do have. I am 57, similar in age probably to you then, and feel I have had a good innings! So many people are terrified of death, but I believe in heaven so am not too worried!!
Also, I have good kids, all adults now, well, the youngest has just turned 17. And I really believe that the more positively we talk about things like cancer and death, the more easily they will hopefully deal with perhaps losing their Mum earlier than planned themselves. Bad things happen all the time, we can't control it, and the more positive we are the better for those we leave behind! I have a good laugh and always smile and chat when I go for appointments, and nurses and doctors often say "Well you are very happy about your cancer!" And I just say "I am just happy to be alive today!" Take care you too...
Hi, those are really good points. My youngest (17 yr old) wants to join the army in a few months, and it scares me, but I let all my kids live their own lives and make their own choices, we can't wrap ourselves up in cotton wool for ever, how boring would that be!
Me too; my faith helps me. My wife and surfing are my other crutches. My wife’s been a rock
Yes, I don't know where I would be without my faith too. I am very glad to hear you have a great and supportive wife (and surfing!) too. Hope all goes well for you and your family.
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