Bowel cancer not being treated. How long?

[ILovePierceBrosnan]

My mum has severe dementia. On a recent admission they thought she had a partial bowel obstruction with dilated loops of bowel on X-ray. They decided not to investigate any further because they would not be able to treat.

The GP has since told me that they are fairly sure she has cancer but no point in formally diagnosing because we’d only have to live with that knowledge. (??? What does she think I’m doing now?!?)

She has abdominal pain on the right side, recent swelling abdomen (noticeable but not massively so) and diarrhoea interspersed with explosive wind and pencil thin poo)

So we are faced with an unknown future....my very elderly father is providing 24 hr care with only me to support. This includes dealing with lack of sleep and incontinence and now this curveball.

I want a diagnosis so I can adjust to whichever future we face (neither is good) but it would help us to prepare and ask for appropriate palliative treatment and support if we knew whether it was short term, long term etc.

Can anyone give me any advice on timescale??

You need a diagnosis as if she is definitely terminal she will qualify for funding for either care and equipment at home or a nursing home/hospice place.

So sorry you are dealing with this, I'm afraid I can't give a time scale as each case is different. Maybe contact Macmillan for further advice.

Best of luck OP 💐

Thank you Fizbo

Yes I want a diagnosis. I feel really disappointed in the healthcare teams response. I totally understand that the cancer won’t be treated but the symptoms could be. The GP said she can’t treat the diarrhoea in case it is cancer. I asked if she would, if it wasn’t and she said yes. (If she was mid 80s up all night mopping shit off the carpet she might be more minded to diagnose.)

Sorry to hear about your mum, OP.

I too would push for diagnosis even if, as may be the case, the outcome is not good. The access to funding aside (which is v important), how can her symptoms be dealt with effectively otherwise? It sounds like she is in real discomfort.

The GP's attitude is bizarre to say the least.

Good idea to contact Macmillan.

My heartfelt best wishes at this awful time. 💐

What does the diagnosis involve? If it is invasive then does someone have health and welfare power of attorney? Presumably she doesn’t have capacity to consent. If no power of attorney then a best interests decision has to be made (no reason why it can’t be - it’s just more complicated).

Ringing Macmillan for advice is a good idea. They have nursing and financial advice available.

Also contact continence nurse. My mum had bowel cancer and she lived about 6 months from diagnosis. She was 87.

My heart goes out to you . We are in a similar situation with my poor MiL. It was discovered she had a lump in her breast and they can't tell if it's benign without invasive tests. We talked about it in depth with the consultant and amongst ourselves, involving MiL but her dementia is advanced and she can't comprehend what's going on. We decided she shouldn't have the tests as we thought it would be too upsetting for her and the consultant agreed, especially as she wouldn't be able to tolerate treatment.

Your GP should really reconsider the treatment options to provide some sort of relief for your mum. My MiL has episodes of incontinence like you describe but they seem to go through phases, she occasionally complains of pain but not often. My only thoughts are the tests you mum needs are quite invasive and might be hard on her. It's heartbreaking.

From my professional knowledge (I work in elder care) then 3 - 6 months, but it's a bit how long is piece of string.

However, please push for a diagnosis. If it is closer to the 3 months end then the GP or consultant can 'fast track' your mums care through CHC which means that district nurses will step in to support your father in his caring role.

If she is more on the 6 months or longer end, and until a diagnosis is reached please contact your local adult services for an assessment - they put carers in to support to take some of the work off your father.

Who decided not to investigate further? Ward doctors, oncologist? If a decision was made in her best interests, then someone needs to have carried out a formal test of capacity for complex decisions around this, and this needs to have been recorded, unless there is someone who has power of attorney for health and welfare. Even if no-one has poa, then family should be consulted and involved in the decision. Capacity is time and decision specific, and should always be presumed until found to be otherwise. Do ask the go about the specifics of the decision, when It was made, who by, was there a Best interests meeting, why weren't family consulted, and who carried out the capacity test and where it is recorded.

As pp have said, a diagnosis can mean access to other services, funding and support, so a decision not to fully investigate may affect this, and there will only be so long that your dad will be able to manage with her at home.

Ward Dr decided no further investigation but it was not discussed with family. On one day they discussed TEP (no resuscitation) but said they would still give healthcare. At this point we thought they were dealing with medical issues.

Then the abdo X-ray suggested a blockage so she was nil by mouth...then in the morning the ward round decision was to discharge her. The ward staff told me it was because she wasn’t symptomatic.

The discharge notes said something else regarding not treating and then a fortnight later the GP said the hospital think she has cancer but have decided to do nothing.

So the communication has been difficult.

No one has medical POA

She definitely does not have capacity and could not tolerate colonoscopy and surgery. They have now agreed to a CT abdo pelvis in a few weeks so maybe we will have more info then.

Thank you for those responses. It’s more information than I had and whilst it is ‘how long is a piece of string’ and we don’t even know what we are dealing with so it’s something to think about

My mum was diagnosed with untreatable bowel cancer in June. She has a tumour blocking her rectum which results in similar bowel movements to what you have described.
Her cancer has also spread to her lung & liver.
We were told approx 3 weeks ago that she has weeks left and is under palliative care.
She is very weak buy otherwise not in pain. She is still eating (very lightly) so I think she will probably last at least 3 more weeks....hard to say.

I would definitely push for diagnosis in order to receive palliative care support.

I would ask them to ct the neck to pelvis in order too see any secondary cancer

Sorry to hear that bacon. It’s so hard

CT is in 3 weeks time but tbh the incontinence in the meantime might drive the situation forward.