New diagnosis?

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After another trip into the hospice, I've been given another new diagnosis on top of that I already have and it's SVCO,  it's a long winded name and I looked it up under macmillan and it describes everything I have and makes so much sense , I just don't know how I feel about it or what it means of the progress of this new , well not new as the tumours been there a long time .

Basically as anyone else heard about it before or as it and can shed some light? 

  • Hi Nala66, sorry to hear of your new diagnosis, I have come across SVCO  twice, once in the family and once at work, the vena cava are large veins that help remove de-oxygenated blood from the body, the superior  VC is responsible for the top half of your body, the inferior VC the bottom half, both people were successfully treated, one with meds, sorry I can't remember which, but my brother had a SVC stent, and was doing well until something else got him. My brother was on intermittent oxygen before the stent. I hope this is of some benefit. PS had a few new diagnoses recently too. Like we don't have enough already 

    Eddie

  • Thank you Blush

    I'm already on oxygen,  they tried upping my steroids and water tablets but they haven't done much to help so they reduced the steriods, they did mention radiotherapy but said it wouldn't shrink the tumour and there was only a small chance of it reducing the Inflammation around the tumour and that it wouldn't do anything to help with the other things that are going on in my body, so declined the radiotherapy and seeing as I'm on end of life and declining rapidly no other treatment as been offered. 

    I don't mind , I just wanted to no more about it and what it meant , so thank you for answering it was very much appreciated .

    Yes, cancer just keeps giving and throwing curved balls at us Unamused

    . Hope you're well? X

  • Your welcome Nala, sorry I couldn't help, was a SVC stent never mentioned, my brother had his with a local anaesthetic, I have been diagnosed with 7 new conditions since July, as you say the disease that keeps on giving. Nala, I think the last time we talked was 8 months ago about ReSPECT forms, DNR and POA, all mine are sorted, my hospice helped, as did my GP, am I ok to ask, did you do yours too, so sorry to hear how you are, for what it's worth I hope they find a treatment for you. My best wishes to you and your family.

    Eddie xx

  • You helped with a reply so thank you :) 

    No, a stent wasn't offered because proper tests are needed to confirm what they already suspect but like I've said I'm too poorly for CT scans etc so there isn't much they can do or willing to do.

    I've had a respect form since last year , they no I prefere to die in a hospice but that depends if there is a bed available and whether I'm fit enough to travel to the hospice, they no I don't want to step foot in a hospital not even for an infection, if I'm not fit enough to travel to the hospice as its an hour away then ill stay at home .

    I have  no property to leave anyone no savings,  pay monthly for a pure cream funeral so everything is sorted there .

    We now just take thw days by days I don't want them to start throwing all sorts of different treatments at me we all now I'm declining and they have already said they can see I've mentally given up   they can see I'm tired and had enough of just existing we are all just waiting for my body to finally say OK enough is enough xx

  • Hi Nala, I hope you get your wish and your place at the hospice at the end, and your final days  are peaceful, free from pain, and your with the people you love and who love you, but not today. Best wishes.

    Eddie xx

  • Hi Nala,I've never heard of SVCO but I just wanted to say nice to see your post. Sending a hug your way.   

  • Hi Nala, I must apologise for not reacting to your post earlier but I have had stomach problems over the weekend, so wasn’t on the site much.

    Like Mmum, I have never heard of this but just wanted to send you best wishes and hugs. I hope there is something they can do to help you!

    Love Annette x

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