Following first reccurence after 11 months remission mum started carbo caelyx 2 weeks ago.
She has just received a letter saying she is now aware treatment is palliative.
She is beside herself and now I fear it's going to be a self fulfilled prophecy.
Why must they send these letters.
Hello there, Please do not worry about the word palliative,as your mum will continue to be treated,which could be several years. I was told I was palliative in 2020 when I had my first recurrence, and last year had chemo for second recurrence I am 78 and very fit and try to live my life normally.I wish your mum luck with her treatment.
It’s one of those words isn’t it? We all panic and assume the worst. Does she have a CNS she can talk to? (Clinical nurse specialist).
She should ask for an explanation. But Caleda4 is right, everyone who has had a recurrence is classed as palliative because the aim of chemo is to alleviate rather than cure. But you can still be NED (no evidence of disease). You can still be symptom free for months and months, enjoy your life and forget about cancer. It’s all possible. No one should be writing her off and definitely not her or you xx
Maybe it will help to know at some point during treatment I had a pump (to administer anti sickness drug ) and this was monitored and maintained by palliative care . About 4 years ago now . I freaked out as well when I was first told. They send you In formation because they have to be transparent, otherwise they get into trouble for not giving enough information. It’s a difficult path for our carers as well unfortunately.
Hope your Mum gets good results from treatment
Jennifer
When I was first diagnosed with stage 4 (Jan 2000) they told me treatment would be palliative and I assumed I wouldn't live to see my birthday a few months later. I think they just mean that (in my case) treatment was to lengthen life not cure the disease.But it would have been kinder to discuss in a face to face meeting, not just receive a letter!
Best wishes to you and your Mum,
Martine xx
Hiya!
As a fellow worried daughter, I can definitely relate to how you're feeling! I'm 26 and my Mum is 53 — so I feel a lot of kinship with your story.
My Mum has always been told she's on 'active' treatment — but she's been in hospital for the last few days with a bowel obstruction, and was similarly beside herself when palliative care were brought in. BUT they actually made it very clear that 'palliative' really doesn't mean 'end of life' — it's more to do with pain management, as palliative care are specialists in the good pain meds. Again, I don't know your exact situation, but just thought it might make you feel better to hear about that. Think sometimes consultants/admin people chuck around these words, and don't realise the association we all have with 'palliative'.
In fact, here is an actual message from my Mum from today: "CT shows the blockage is clear!!! It’s all about diet and pain management. The alarmingly named palliative people are gonna talk to me about the latter — but it's been made very clear that this is just cos they have access to the good stuff that doesn’t cause constipation!!!"
Basically — just like what Rankij11 said — palliative care also manage just like general pain management too.
Hope that helps ease your mind in some way. Feel free to drop a message if you ever want to chat x
Georgia x
Hi Georgia, ive actually seen your posts before and see a lot of similarities. I am 28 next week and my mum was 56 when diagnosed (now 58) she’s my whole world and knowing we’re never going to be able to forget and move on from ovarian cancer is sickening. I am sooo pleased your mums blockage is sorted as I know they evoke terror. There have been a few times where my mum has had what I believe to be a partial blockage with severe pain, throwing up, bloating and unable to pass gas and stool. This disease is an insidious beast. I will message you X
I’ve got nothing to add to the wise words from others, except to say that, as a volunteer with a Gynae cancer support group, we see many, many ladies who are on palliative care regimes, and it definitely doesn’t mean ‘end of life’. So many of our members live full and happy lives for many years after being given this diagnosis. I hope you can show your Mum these answers! I hope she doesn’t get too upset by her situation. You’re doing a great job of helping her. xx
How awful for your mum to see the letter. My mum had a recurrence and she had just Caelyx which kept the cancer stable. Then it became active again and she was able to have Carbo/Taxol again. There were small tumours here and there and that second dose of Carbo/Taxol seemed to zap them. Is your mum in good health overall? x
Pleased to hear your mum found a combination that worked effectively ☺️ she’s always been in great health and remains in great health too. The cancer has caused a pulmonary embolism but she has bounced back bless her. She is very fit and active
You've had some wonderful advice here. Just confirms to me how important this forum is. I'm very surprised that your mum received a letter and not a phone call or request for a consultation, where you would have an opportunity to discuss and ask questions. Any treatments that I've had, have always been discussed with my oncologist. I can only assume that the letter follows some legal protocol. I hope that the comments you've received here will lessen your & your mum's worry. Take care & enjoy being together. Worry is such a waste of precious time. xxxxx
Hi Worrieddaughter95,
I'm sorry to hear that your mum is feeling so worried and upset after her recent letter. Our members have posted some very helpful responses that I hope have provided some reassurance.
Our support team are here for both yourself and your mum. If either of you would like to talk anything through, do feel free to give us a call on 0800 708 0054, or send us an email at support@ovacome.org.uk. We're here from Monday to Friday, 10am to 5pm.
Best wishes,
Alice - Ovacome Support
Stage 4 Ovarian Cancer @ 33yr old Palliative Care.
update no More chemo now palliative care ☹ 
Mixed response to chemotherapy
Palliative care
Coughing and throat pain post chemotherapy
