Mum was diagnosed with advanced bowel cancer in 2018

Okay so, this will be a bit of an essay so please be patient...

In 2018 my mum ( 75 then ) was diagnosed, after many months of futile tests, with advanced bowel cancer.

She was initially told it was incurable, then within a few hours had surgery.

She then had chemo and has been clear for years, last 7 years bloods etc all clear.

Then last November she started getting slight discomfort in the original surgery area so went to her GP.

She had bloods done ( all clear ) and CT scan.

This took a long time!!! In around May ( !!!) they told her the discomfort was scarring from her surgery but they had seen fluid in her womb, so she was then sent for bloods and an ultrasound.

Bloods showed slightly elevated CA125 levels.

She then had a sample taken from in her uterus.

In early June they diagnosed her with stage 3 endometrial cancer but said it was contained in the pelvis and she was very fit for surgery.

They did an MRI and discovered a lump on her liver... biopsy a couple of weeks later confirmed the endometrial cancer was stage 4 and had spread to the liver.

More meetings and waiting while they decided on a course of action...

4 weeks ago she suddenly started being sick every time she ate and had abdominal swelling.

GP sent her to hospital.

She's still there now. Hasn't eaten for 4 weeks as she has a blockage in her bowel which they've been trying for 3 weeks to clear with a drain etc. They said it was scarring from the previous op 7 years ago.

Now they've said the cancer is in the peritoneum and this is pushing on the bowel and stopping her being able to eat.

They've ruled out surgery, and after telling her she'll never eat solid food again have now more or less given up on soft foods, soups etc as well.

They said last week they want to get her fit enough for chemo and immunotherapy but all they can give her now are protein shakes and water. The oncologist has said she isn't well enough for chemo but has said if she gets fitter he isn't ruling it out but presently she's wasting away in a hospital bed.

6 months between going to her GP and getting a diagnosis, no action taken on diagnosis!

She's 82 but looks 60, only retired 2 years ago, walks everywhere and dotes on her 10 year old grandson.

Every bit of news they give her is crushing but she's trying to remain optimistic.

They've never given any kind of prognosis or anything.

She isn't in any pain at all 

  • Hello Mikeyb77

    I'm so very sorry to hear about your Mum's current situation. After having been through a rollercoaster of news and treatment back in 2018, to now find yourselves in this situation will undoubtedly be incredibly difficult for you all. 

    While it's positive to hear that your Mum is in no pain, I can imagine the level of frustration and disappointment that you're both feeling while more tests and attempts to improve her health are being made. 

    You mentioned in your post that there have been numerous occasions where you've had to wait for the next steps and it sounds like there isn't still a clear plan on how to support your Mum. It may be worth getting in touch with the hospital PALS team. It's part of their role to help resolve concerns or problems when you're using the NHS. 

    If it would help to talk with one of our nurses for some advice and support, you're welcome to call them on 0808 800 4040, Monday to Friday 9am to 5pm (excluding bank holidays). I know they will be happy to listen and offer any information and guidance they can. 

    I hope that the specialists are able to keep your Mum pain-free and as comfortable as possible, and that whatever happens, you both have the support of family and friends around you to help. 

    Sending you both my best wishes, 
    Jenn
    Cancer Chat moderator