Hi again

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Morning all

Sorry I've not been on the site for a while especially after the support for my liver op but it has been been a roller coaster of emotions and bad news after bad news.  We lost two members of the family in two months - one totally unexpected and one earlier than she had been told (cancer came back again after 30 years).  She was told in January she had 12-18 months but was gone in less than 3 makes you realise the doctors really don't have all the answers. On the plus side we did have a new arrival so a bit of light.  Sadly wasn't able to go to funerals and only seen photos of the new arrival as yet.  

My liver op at Xmas all went well - feeling good, scar healing nicely and recent scan shows liver all clear and the original tumour ,, the start of this journey has still left the building and after 2 years is statistically unlikely to return so I was starting to be optimistic.  I had my first post op scan and saw my consultant who told me op was good liver clear and without op I would definitely be ill by now BUT unfortunately v tiny - only just visible on scan as yet - tumours have now been found scattered in my lungs.  I should have guessed there was an issue when I saw she had a nurse with her which I haven't had during covid.

Long story short because the tumours are "scattered" targeted treatment/surgery not considered viable by the MDT therefore only option is chemo but because the tumours are so tiny and I am so well in myself she does not want to go down that route yet and wants to defer decision about treatment for 3 months. I am still currently" incurable but treatable" because I asked her although after next chemo no other options for treatment (although if I want a second opinion or want her to consider alternatives she will so back on good old google). Personally I don't get it because to me let's get in there and get rid but apparently there is an "optimum" time for doing chemo and it's too early.. 

So unless I start to feel ill between now and July when I should call the hospital straight away and they will review decision she told me to go away and if I had anything I had always wanted to do to just go do it while I am feeling and looking so well.  She also said she would sign forms to release my pension funds etc if I wanted to do that and introduced me to "my allocated nurse" who will call me every couple of weeks or so to see how I am doing.  So came out really down even though I feel better than I have in ages and happily walking 3-4 miles a day.  One step forward 2 steps back.

Still not sure what to make of it all but determined to prove them all wrong .x

  • It is good to get the size of lung mets. When mine were small and I had 12;less than a centimetre I had RFA a which destroys the met. Others do occur. It has kept the mets down over the years. I was diagnosed with lung mets in 2010.

    I continued with RFA for lung  mets until some got over 3 cm. RFA cannot be done on mets over 3 cm.

    the official line if you have more than 3-5 mets they won’t give you RFA  and just offer chemo.

    my cancer is very slow growing and doesn’t respond to chemo.

    if yours are small I would  wait the 3 months. But ask them for measurements next time. 

    Ruth 

  • Thanks for this.  The mets were 5mm-7mm max x

    Carpe Diem
    Deb1E
  • Yes that is small. Over 1 cm I would ask for some treatment 

    Ruth 

  • Thank you.

    Carpe Diem
    Deb1E
  • Hello Deb1E. I remember your liver op and everyone's posts discussing it very well.

    I have always agreed with whatever the medical mob have put to me but on this occasion I would very hesitantly suggest a second opinion. You don't have to have an uncomfortable chat with your current consultant, just sort out a name from Bupa, Axa or whatever and speculate a few quid. It might put your mind right whatever the diagnosis.

    I do hope you have success in whatever way you progress things. Xxx

  • Hi Deb, I have tried to answer this twice and they have disappeared! Third time lucky!

    It sounds to me like you are really worried about the way things have been left with your consultant. I hope Ruth's reply has helped put your mind at ease a bit. If not why not try Norberry's suggestion and get a second opinion. 
    Try to focus on how good you feel just now and enjoy it!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • FormerMember
    FormerMember in reply to anndanv

    Hi  I can see why this news is difficult to get your head round. Wait & see is tough especially after major surgery. It sounds like you need more time & information to feel comfortable with this plan, perhaps a second opinion would help. If there’s an opportunity to feel well without treatment for a while that sounds very tempting... if you can really enjoy it without feeling it’s all just hanging over you. Thinking of you xx

  • Thank you everybody.  It is obviously playing on my mind I woke up last night in floods of tears - no idea why obviously dreaming about something.  I am going to have a long think over the weekend about what to do next but I have plucked up the courage to email Maggies - who emailed me back really quickly so thank you Spud. 

    Part of me says 3 months to enjoy myself after the past year would be good but the other part thinks I should be doing something but not sure what.

    On the plus side it has been a lovely day today I walked over 3 miles through the forest with my sister and I am actually going to see my parents (socially distanced in their garden) to watch the Duke's funeral - they are staunch royalists - had to tell them all my bad news of the last year over the phone so will be good to catch up.

    I hope everybody has a lovely weekend. xx

    Carpe Diem
    Deb1E
  • Good you can walk that far. I enjoy walking too.

    We are meeting friends in a pub garden for lunch today. It is meant to be dry and sunny.

    making the most of it xxx

    Ruth 

  • Hi Ruth, I hope you enjoyed your pub lunch with friends! We won't be able to do that until the end of April as pubs here still closed! It sounded lovely when I read it, I hope everyone enjoyed it! We can meet outdoors but although the sun is out, there is a cold breeze and frost at night!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!