Confusing diagnosis for mother in law - not sure what's happening

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Hi - my 85 year old mother in law was called in to the hospital urgently and told she had advanced colon cancer 2 weeks ago. The was the result of a scan. We're not sure why she had the scan. We were not with her when she was told the news - she also thinks she has lung activity but they are not sure? She then spoke to the consultant and agreed she didn't want treatment because she is fit, healthy, active and feels well. She received a letter yesterday which looks like it's for the GP. There is no mention of cancer on the letter! We were hoping there would be a clear diagnosis or staging of the cancer because none of the family really know what is going on. She was however put in touch with Macmillan nurses. Is this normal? For a letter to not mention a diagnosis? Could it be because she refused treatment? The letter gave her a WHO Performance score of 1. Why would this be on the letter? She is confused. We're all confused! Consultant told her it was difficult to say how long she had left - said it could be 3,6,9 moths or a year and that it was 'hard to say'. Mother in law doesn't want us to get involved. I want to help (we live abroad) but I am frustrated by the lack of concrete information. Does this sound normal? Thanks.

Wifey55 over 1 year ago

Hi, the letter she received would be a copy of the letter sent to her GP. The first letter we got had the following headings

Patient - name

Diagnosis - in my husbands case it said Presumed metastatic pancreatic cancer awaiting results from biopsy

Performance status 1 (which means restricted in strenuous physical activity but ambulatory and able to carry out light work) the grades go up from 0 -5 with 0 being fully active and 5 being dead).

Treatment plan - in my husbands case palliative chemo

the letter then goes on to explain what was discussed at the appointment and when they will see him again. (In his case 2 weeks later)

Have you seen the letter yourself and are sure it doesn’t include any of this….If your mother in law is willing to let you speak with people then perhaps first point of call is the gp to see what they make of the letter.

sorry the lack of info doesn’t seem to be our experience of how things have worked. We get a copy of the latest letter every fortnight after each appt. Even if your mother in law isn’t having treatment I’m sure she and her GP would still expect a diagnosis and clarity on the current situation

Hope that gives you some info to work with.

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Confusing diagnosis for mother in law - not sure what's happening