Palliative?

Hi everyone, I know this has been explained before, but I obviously didn't take it on board. When I was having my treatment yesterday, I looked at my notes which were headed "palliative." Can someone define this for me?

My more sensible self says this does not mean that I am a no hoper but my worried and anxious self says this means I am on a downward path. It didn't help that my CA125 had gone up albeit only by one point. That's nothing. Right?

Jenny

19 Replies

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  • Hi lovely,

    Palliative doesn't mean a thing, to a degree everyone is on palliative care BUT as long as you are responding well to treatment there's every hope. My special person was given 6 months with chemo like everyone else we were broken... She's now nearly 2 years on (her 2nd birthday I call it) but palliative has a wide meaning rather than just the slippery slope down xx

  • Thanks for the swift reply. I think I am coping well, then something small like reading the word palliative knocks me down. Glad your special person is responding to treatment.

    Jenny

  • 'Palliative' is a term to describe relieving the symptoms so that the patient isn't in pain or discomfort. Chemo is 'palliative' in that it should shrink the cancer and relieve the associated symptoms you might be feeling. It doesn't necessarily mean what we think it means. If you are worried about it, why not try talking to your CNS or oncologist to understand what the plan is for you?

    I saw a palliative care doctor during my first round of chemo because I was absolutely huge with ascites and she helped me with painkillers to take away the discomfort.

  • Thank you. I was just feeling g a bit wobbly and reassuring words do help.

    Jenny

  • Hi Jenny,

    I too am undergoing palliative treatment.

    As I understand it the aim of 'palliative' treatment is to delay the progression of the disease and to relieve and manage symptoms. It does not represent a cure. However there are many weapons in the arsenal and new trials and treatments are coming on line all the time so, undoubtedly a hard word to read, it does not mean the end is nigh.

    That's how I try and look at it anyway.

    Hope that helps, stay strong and positive.

    Janine xx

  • Hi Janine. I know my cancer can't be cured but seeing the P word written down made it official I suppose. I shall put that thought in a box and move on. Thank you for replying.

    Jenny

  • Hi Jenny. I was also shocked when I was referred to as palliative not long aftet diagnosis. When I questioned it, it was explained that "palliative is the terminology used when a cure is not possible. It is very different to being deemed terminal". Perhaps they should explain this to patients at the outset - I think it could spare us a lot of anxiety and extra worry. Take care. Ali x

  • thanks Ali. You know what it's like with this rotten disease. You think you are coping and then you realise that you are but only just!!

    jenny

  • Hi Jenny, I know exactly how you feel having seen this for myself on my records. It was explained to me that as there is no definite cure for ovarian cancer the hospital uses the term 'palliative' to encompass those cases. I actually asked my oncologist if he /they had given up on me but it was explained that my understanding of palliative was different to theirs. The word 'terminal' is used by the medics when every treatment has been tried and there was nothing further that could be offered. I hope this explanation relieves your worries. My ca125 had gone down from 37 to 32 which I was pleased about but the oncologist told me that the two numbers would be regarded as the same. So apparently a 5 point difference didn't warrant mentioning. Take care and warm regards Carole H 😊 x

  • Thanks Carole. My sensible self knew this really, but I got myself in a tizz and got panicked. I am no worse off now than I was before I saw the dreaded P word, and am feeling a lot better after everyone's reassuring words. Thank heavens for this site!

    Jenny

  • Like that I got my note at one stage and saw the P word and was struck dumb, I didnt think I would live much longer. Four years on and I am here, off treatment for the moment. I have got a good break to be honest this time around. My full bloods done last week including 125 so dreading going back just in case it has come back. Any how any of us of any type of meds ie blood pressure is palliative.

  • Hi Suzuki. Thanks for the reassurance and I am happy that you have been doing so well. I hope the latest checks continue in the same vein.

    Jenny

  • Hubby and I went to my first Onc meeting on 14th Feb since my recurrence and I asked what the aim of my next treatment was, 'palliative' was the response. I was ok with that and had warned hubby what he may hear as it sounds gloomy but basically it means this:

    ----------------------

    . palliative

    noun [ C ] UK ​ /ˈpæl.i.ə.tɪv

    specialized medical a drug or medical treatment that reduces pain without curing the cause of the pain

    --------------------------

    It's all ok 👍🏻❤️💐

    Take care

    Clare xx

  • I'd been told any care would be palliative 6+ years ago. I've had some long and happy remissions since then and I hope you do too.

  • As I understand iit, first line chemo is classed as curative, subsequent lines are termed palliative. It doesn't mean there is nothing else can be done, it is just a medical term that's used. Don't get yourself worked up over a word. Its just that, a word! Big hugs. Ann xx

  • Many thanks to all have responded to the "palliative" word and given me reassurance that it doesn't mean the end is just around the corner! I am outing it out of my mind and getting on with my life. X

    Jenny

  • Hi Jenny, we too were shocked when our dr told my husband he needed palliative care.. even though same Drs told him he was "terminal"

    1st 3 month scan showed no growth of tumour ( no shrinksge either) but we were very pleased that the chemo had worked so far. So, palliative care has helped in as much as he gets the pain under control, a bit of TLC from the district nurse and any other help he needs.

    Good luck and love ❤️ from Australia

    Sandy🌹

  • Thanks Sandy.x

  • Hi Jenny,I too am on Palliative care.I was told there were 2 types of treatment,curative and palliative ,as mine isn't curable I'm on palliative treatment,I am on treatment since 2014.

    Palliative hits the symptoms,delays more aggressive treatment and gives you a better quality of life,xx

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