Palliative care

[Indujoshi]

Hi

Dear ladies especially those who are on palliative care I shifted mom out of active cancer treatment in November she has been doing well and is very comfortable since then eating well and generally enjoying life except some vague pain here and there I got her last scan in September I don't want to go to hospital and visit the onco team again but my parents are insisting on a scan especially since she has been complaining of slight back ache since past 3 _ 4 days .please advise I am scared to get a scan she is presently on alternative medicine

[Lily-Anne]

It depends what they want to do with the information. If it’s to monitor treatment then why not. If it’s curiosity it’s not necessarily a good idea. If there is growth and they want the chemo route then a scan is a must

It sounds to me that although she’s currently quite happy, in the back of her mind she’s worried and potentially isn’t as comfortable with her regime as she has led you to believe. I’d definitely find out why before making a decision

I stopped treatment October 2017 and it was the right thing for me.

LA xx

[Indujoshi in reply to Lily-Anne]

Hi Dear

Yes surely it seemed a right decision to stop chemo as she has clear cell carcinoma which was not responding to any chemo tumours kept growing and she was as good as half dead with all that chemo so weak and had even had lost of bladder control no appetite and asleep for 22 hours a day now she is hundred times better thanks for your advice it always helps the ladies in this forum had advised then too to take quality of life over quantity and chemo was anyways not working I will discuss with them regarding options as I feel my father wants chemo route as he feels she is stronger now so why not second opinion but I know clear cell has no chemo options especially if there is such a poor response to first line I will take the call after my kids exams get over by 25 feb as I am their main caretaker and decision maker thanks a lot again

[Seasun36-uk]

I think the positives are that your mum is comfortable, eating better, enjoying life. A hard decision, but maybe it will be a choice of quality.

Have you asked her?

When my mum was very ill in 2004, I asked her if she wanted medical intervention (that’s how I phrased it) or to be looked after well & kept comfortable. She chose the latter. It was definitely the right choice.

Linda xx

[kristinaapril]

I think LA did a great job of expressing my own opinion.

My mom getting diagnosed with OVCA, kinda turned us into hypochondriacs in some sense. After every twinge and every pain, the centralized thought becomes, it must be the cancer. My mom, perhaps with my own suggested, does agree to document her own symptoms and if significant pain or unmanageable symptoms last more than a couple days - we generally opt for some type of scan. This is something we have just talked about today, and my mom is planning on getting a scan soon. However, during the past year, my mom has thought her cancer was growing based on symptoms - however the scan did not reflect that and it gave us some room to relax.

I personally can relate to your parents wanting a scan - because I feel more comfortable knowing the results rather the fear of the unknown.

Kris x

[Indujoshi in reply to kristinaapril]

Thanks a lot Kristina this is really helpful

[Indujoshi]

Thanks a lot Kristina this is really helpful

[GINI-54]

I think it’s good to have a regular scan when on Pallative care, as I like to know what’s going on in my body, my last scan showed signs of some tumours shrinking and no change to others. Which I was pleased about. As your Mum is feeling odd bits of pain she will be wanting to know what is going on in her body, it helps us prepare ourself for the inevitable. You never know her alternative medicine may well be having a positive effect on her body and her tumours may be stable. Keep strong for your Mum, it’s a scary journey, but as you said she is doing well, eating and enjoying life, which is all any of us want. Good luck. Gini x

[Di16]

If your mum is anxious to know what is going on in her body, having a scan may be helpful for her, even if it doesn't make a difference to her therapy. Di