I have just joined this group as desperately in need of some advice & support.
My beautiful mum has endometrial cancer which was at stage 4 by the time of diagnosis. We have now very recently been told it’s spread to lymph nodes, lung and various other places. She is currently at home, having just had a chest drain fitted because she is severely breathless and having half a litre of fluid drained off of her lung every 3 days by the district nurses. (Could probably drain double that but they aren’t allowed) She is housebound though, as so breathless and therefore exhausted too. She isn’t eating much and her tastebuds are pretty non existent. I feel she is becoming detached and distant.
Mum has had chemo and immunotherapy and her oncologist started her on hormone therapy 10 days ago, despite the palliative care nurse telling me (because I asked) that things aren’t looking positive and the cancer has spread faster than they hoped or expected. I feel I’m getting very different vibes from the two ‘camps’ and my mum is insistent that she can’t wait for ‘things to improve’ once the HT kicks in.
Has anyone had any experience of the cancer being this bad and things improving due to HT? I know nothing about it. But I’m scared to get my own hopes up due to what the palliative care nurses are telling me. I think the Macmillan nurses are also attempting to hand over care to our local hospice now which also speaks volumes.
Hello Lucia249
I am so sorry to hear of your Mum's diagnosis and journey so far with womb cancer. I was treated for womb cancer in 2022 and had surgery, chemotherapy and radiotherapy. I did not have immunotherapy or hormone therapy.
It must be very hard for you and Mum to find out that her cancer has spread to other parts of her body and causing the symptoms such as breathlessness. I hope that the nurses coming to drain the fluid are being supportive and that you feel able to talk to them. They maybe able to advise some things to help Mum with her eating etc.
Although you feel you are getting some mixed messages from the doctors/nurses it is perhaps good that Mum is feeling hopeful that the hormonal treatments may help her. It can be really hard sometimes for them to be able to predict what will happen and when and how indeed Mum may respond to the treatments. Although the cancer has spread more quickly than they expected it does not necessarily mean that they can't offer help to control the cancer for a while longer and offer help to control Mum's symptoms. This is where the palliative care nurses and hospice team can help.
If the Macmillan nurses are suggesting that Mum has some care and advice from the local hospice- maybe this is something to consider as they really can be the experts in making people feel comfortable, controlling any symptoms and also supporting you as a family. It does not mean that Mum definitely has to go into the hospice- they may be able to give support at home but it is something that is worth finding out about.
Do you feel it would help you to chat all of this through with someone? If so then perhaps consider giving the Support Line a call, they are lovely on there and they can talk you through anything that is worrying you. The number is at the end of this and they are there from 8am-8pm daily.
I am not sure if it will help, but I will pop a link below with some info that may help. It is about coping with advanced cancer and what may happen. Do not feel obliged to read it, but I think it might help with some of your general questions.
MAC11626 Coping with advanced cancer E12 (macmillan.org.uk)
I hope this helps a bit. I am sorry that you are going through this and I hope that Mum's new treatment helps.
If there is anything else you or Mum needs then please do ask.
Jane
