Inoperable and incurable tumour

[ReadingRiot]

Why is this terminology used? It's obviously shocking news to receive, but seems to me that it's not quite as bad as it sounds.

In the last 3 years I have known two people who have received this diagnosis but after chemo and radiotherapy are now both cancer free and well.

DBIL starts treatment tomorrow after the same diagnosis and DSis is convinced the treatment is just about prolonging life as much as possible. i.e he's going to die from the cancer anyway, but that's not necessarily the case, is it?

Cancer free and well isn’t the same as cured though, I imagine the language is accurate but different people and types of cancer respond differently to treatment.

My DStepM was diagnosed with an inoperable and incurable tumour and it killed her within two years - despite treatment.

I realise that MakeLemonade but without making it clear at the time of diagnosis that there are treatment options (which it hasn't been until a week or so later for any of these people) the language seems unnecessarily bleak.

The language is accurately describing what it is.

I think you sound in denial about his illness. You need to realise it probably is bleak and your sister wants to face reality and doesn’t need you trying to pretend it’ll be ok.

Inoperable and incurable do not mean the same thing, though often go hand in hand. In some situations a tumour can be inoperable but still potentially curable if an alternative treatment such as radiotherapy can be given.

Incurable on the other hand means just that, any treatment will be given with the aim of shrinking and controlling the cancer, but ultimately the cancer will return.

The exact prognosis/ life expectancy will depend on the type of tumour and whether there is any spread to other organs in the body.

You know you can't be declared cancer free after cancer. You can be in remission. But that sad fact is it takes a million cancer cells before cancer is detectable. In this type of cancer (inoperable and incurable) the treatments can knock the number of cells back and depending on the stage it can have a significant effect.. but doesn't mean its cured

Reading - we need to be honest with patients about treatments and likely success rates so that they can make the decision whether they go ahead or not. This is called ‘informed consent’. Most cancer treatments have serious side effects and involve lots of hospital visits and sothe pros and cons of having treatment need to be carefully weighed up.

it sounds to me like you are minimising the situation. Being told you have an inoperable and incurable tumour is pretty terrible news.

It means you are almost certainly going to die from it.

Why would you want to trivialise the situation?

Of course, I understand all that but the natural reaction of all three of the people I know on receiving this news has been to think they'll be dead within months and they haven't been given any other information at the time.

For two of them that thankfully hasn't been the case. Presumably in BILs case there is a point to the treatment, so whilst it's not curable (and I understand why that is) surely he should have been told at the same time that there was a possibility it was treatable?

Does it mean you are going to die from it? One of the "well" people I know very well and he certainly doesn't expect to die any younger than he would have otherwise expected.

I'm not minimising anything, I understand it's an awful situation that BIL and DSis are in. I don't think there any benefits in giving up hope though, especially when others I have known with the same diagnosis are now doing very well.

But for the few people who live for many years post diagnosis of inoperable/incurable cancer, there are more who do sadly pass away in a short period of time. Patients have to be informed, it’s like anything - you get told about the risks of general anaesthetic before you have an operation for example. Sorry to hear about your BIL

'Cancer free' often just means there are insufficient (although multiplying) cancer cells to be detected on scans yet. Treatment may buy you time, but incurable means it's just a matter of time. Cancer free is a very misleading phrase, often giving people false hope. Many people do well with modern treatments, but be under no illusion.

I don't think there any benefits in giving up hope though

well, there is if they would rather be realistic and talk opening with each other and other people about what is happening, and accept it.

"positive attitudes" have been shown to associated with worse outcomes and greater misery

Reading - there are so many types of cancers that all behave very differently. In my work I see many patients with an incurable cancer that has an average life expectancy of 15 years from diagnosis. Many are very fit and work
full time despite their underlying condition.

Cancer is unpredictable. It makes one's life turn into one day at a time.

Thanksttwodogs, that's what I was getting at. Whilst it's obviously grave news, it doesn't necessarily mean it's all over.

Reading people deal with trauma in different ways. You and your sister seem to be handling the news differently. You must recognise that you ‘looking on the bright side’ is a type of trauma response and your sisters practical acceptable or even worst case thinking is another. You mustn’t force each other to try and act or think like the other. Instead support each other how you want to be supported. You mustn’t get cross with her for being ‘pessimistic’ and try and tell tales of your friends who have been cured. And she mustn’t try and force you to ‘see facts’ and assume he’ll die soon.

You have to acknowledge to each other you are dealing in different ways and try and support that

Inoperable just means that no operation will remove the tumour with sufficient margins to rid the patient of it, or that any attempt to operate on it will cause unacceptable damage/loss of function to the patient, or that the cancer has spread in such a way that operating in one area is irrelevant because the spread of cancer is already diverse and it is that which will cause the patient the most problems.

Incurable simply means that current surgical and medical treatments will not overcome the disease process and that, at some time, the patient will succumb to the cancer. Some patients undoubtedly will die of other illnesses long before the cancer will kill them. Many men with slow progressing prostate cancer (as opposed to the aggressive subtype) will die of other things long before their prostate cancer kills them. But that doesn't mean they don't have an incurable cancer.

reading - I think it really does depend on the specific cancer and location of any spread. So for example (and am not medically qualified) primary breast cancer which has spread a little is technically incurable - but can be treated successfully for many years.

A bowel cancer patient may have stage 4 cancer and spread but they have managed to contain and reduce spread to the extent there is No Evidence of Disease ( see @bowelcancerbabe) another bowel cancer patient may have stage 4 cancer but the spread is so pernicious that it is not possible to do anything other than palliative care (see - my sister - who lived 8 months after her terminal diagnosis)

I get where you are coming from but I do think you need to re-centre yourself into the viewpoint of the person affected and those closest to them. I had to do this. My sister decided to say no to further palliative care, my rational brain couldn't work this out, I eventually understood by really really really thinking about it from her point of view - I've emphasised the "really" because it did take a lot to stop me being selfish about what I wanted for her rather than understanding what she wanted for herself.
I'm so sorry you're going through this.

To be clear I'm not saying any of this to DSis, I was just wondering about the benefit or otherwise of giving the news in this way.

And sorry - I know I'm picking on you now - but your reference about "giving up hope" really struck a chord. That is what I felt - hope to me was treatment and extension of life. But my sister saw it differently - hope to her - was quality of life and time with her loved ones, treatment was painful and so detrimental to well being that hope really shifted its placement.
I hope this makes some sense