Feel misled - Metastatic

Hello, 

My mother is 78, she has Breast cancer. She was taken ill in late September with breathing difficulties - and subsequently taken to a hospital in the North.

After a CT scan she was told her breast cancer HAD spread to her lungs, spine, and also her Pleural space causing pleural effusion. They gave no hope.

Despite repeated requests, the medical staff failed to provide copies to her of any tests, and she only received them after making a legal request.

When we received the results much later, a doctor friend checked these for us, and we found out that her diagnosis was not at all certain, and that the radiologist has not found a tumor. They found a few areas of suspicion but had a low level of certainty.

They also ran a Cytology on her Pleural fluid which failed to detect cancer cells! Great news, right?. Well no one told us.

From initially failing to mention they were not certain (obviously unacceptable especially if giving a terminal diagnosis), to now continually giving wrong information. Despite evidence to the contrary, they keep saying the cancer cause is certain, even saying the Cytology showed cancer cells which it did not... 

I am so frustrated, they are so keen to stick to a best guess that they are intentionally or unintentionally twisting the facts to convince her of such.

They are making no attempt to investigate other causes or to confirm a cause, wanting to start Chemotherapy without even knowing for sure, they keep witholding test results which contradict their statements.

It's vital they find a certain cause, even if the spread is cancer, she has no chance of getting the right treatment if they haven't even seen a tumor.

I don't know what to do, I just want them to be honest and factual and investigate to find a cause... But everything is a battle, even getting her results is made difficult.

Thank you.

  • Hello badatusernames345, 

    Your username is probably the most original I have ever come across and as a moderator I have come across so many  - love it :wink:

    What a stressful situation for you and your mum. It seems like there were some serious miscommunications there and that you were also given inaccurate information. How bizarre that you were told the cytology showed cancer cells when it didn't - it must all be so confusing for you. All these contradictions must be rather unsettling to you. I can understand why you would want to make sure they find a cause. You must be feeling exhausting as everything so far has been such a battle and I really hope that you can get some reliable answers soon and find out more about the cause. 

    Perhaps you could consider getting a second opinion on all this? You can find out more about how to do this on this page. 

    There are also organisations that can help if you feel things haven't been right and you could pass your feedback on for example to PALS (Patient Advice and Liaison Service). You can find more details on our website and we also have useful information on how to complain about healthcare services.

    I hope that you get a bit more clarity soon on what is going on. 

    Best wishes, 

    Lucie, Cancer Chat Moderator