LIVING and working with stage 4 cancer - Ask me anything!

[DoreensEatingHerSoreen]

I don't intend this to be a TAAT, but I have been quite taken aback this evening by comments elsewhere that seem to assume that everyone with stage 4 cancer must be at death's door, with posters finding it hard to believe that we could / should be working.

I was diagnosed with stage 4 breast cancer one year ago, aged 33.

I'm doing really well, back to work, and hoping to stick around a long while yet.

I know that each and every cancer diagnosis is unique, but I'd love to dispel some of the myths, and if I can go as far as making it marginally less frightening for someone facing this themselves or through a loved one, then I'm only too happy to oblige!

So ... ask me anything!

I'm sorry this is happening to you

Did/do you have life insurance? What will happen to your DS? Is his father around?

Is a cure possible?

Bless you OP

If the tumour does grow again then will they remove it then? Or is it just very much wait and see?

If it's just the one tumour growing and nothing has appeared elsewhere, then yes surgery or ablation may be considered, but when it starts to grow that's an indication that I'm no longer responding to treatment, so I would probably need to change treatment at this that point

*Did/do you have life insurance? What will happen to your DS? Is his father around?

Is a cure possible?*

Yes - I had life/critical illness cover which has paid out, and paid off the mortgage so that's one less thing to worry about. I have another policy with work which would pay out if I were to die while still employed.
DS would probably go to my parents, with regular contact / support from his other Grandparents too. He sees his Dad from time-to-time but it's been pretty infrequent recently. Sadly DS's Dad has his own serious health issues which is so unfair on poor DS.
Everyone gets along fine, and I trust that everyone would come together for the good of DS.
I'm very hopeful that I'll be around to see DS into adulthood, but need to get some bits sorted in my will anyhow, I keep putting it off which I know is ridiculous in my situation!

Sadly once cancer has metastasized (spread), it becomes incurable, but it is TREATABLE. The best I can hope for is No Evidence of Active Disease (NEAD) which means that no cancer is visible on a scan / test, but once treatment becomes ineffective, it will return.

The info-graphic I mentioned:

Thank you for this, I’m so glad to read you’re doing so well. I was also surprised at the misinformation on some posts lately. My mum has stage 4 breast cancer that metastasised. Her treatment has removed it from the breast, lymph and lungs It’s stable in her bones and in her liver, but she is on the last line of treatment. She was diagnosed in 2015, also fobbed off by the doctor which I am very bitter about. She first had cancer at 37 and had had a successful mastectomy. This cancer came back 20 years later in the scar tissue. So ladies you must stay vigilant! It can happen. I’m so angry the gp missed the diagnosis. Like you she carried on working as long as possible, but she is much older and in a stressful job so we were happy when she retired.

I think a positive attitude and managing stress and negative emotion has been really important in helping manage her illness. She seemed to get worse when there was a lot of work stress and vice versa, so please take care of yourself and prioritise your health above any drama.she hates it when people say she’s brave or treat her pityingly so I won’t say something sugary to you now but I really respect you and how you come across in your posts and I’m wishing you all the best.

I think your outlook on life and your illness is fantastic. They say positive thinking makes a difference. I hope so.

Thank you littlejalepeno
I saw your posts on another thread and send lots of love and best wishes to your DM, I hope her treatment keeps on working for a long while yet.

It's frustrating to be told that we:
"can only have months left"
"can't possibly be well enough to work"

And in the case of those with brain metastassies:
"Will have a horrible end"

I know these things weren't said deliberately unkindly, and sadly can be true in many cases, but it's not the case for me, like it's not the case for your DM, like it's not the case for literally hundreds of women I know through in-person and online support groups, including some high-profile individuals: Olivia Newton John, Kris Hallenga and in the case of other stage 4 cancers, Deborah James, George Alagiah. Plenty of people living good lives and working with stage 4 ... I can only assume that people's understanding is massively out-of-date!

It touched a nerve, but trying to turn it around and educate a little if I can 😊

Your attitude is admirable OP and I wish you many many years yet, like the people you've mentioned.

Can I ask if you ever 'challenged' the GP later on, and if they apologised?
Not quite the same scenario but DH was given some pretty misleading information that delayed his diagnosis, though thankfully he's currently doing well. We want to challenge in a constructive way to hopefully stop the misleading information being repeated but when I start to write I get so frustrated. I need to channel you a bit.

Do you really like Soreen? A friend used to slice it and toast it but it seemed awfully sticky to me.

@HitthefloorforTaintedLove my DH was totally missed, in fact told it was clear. We got PALS to investigate and got an apology and an explanation of how they where changing the system so it shouldn't Happen again.

Good to see your AMA! I was diagnosed with stage 3 BC nearly 7 years ago at 36 and was fobbed off by my GP at the time.
I'm glad you and others are able to challenge the preconceptions about stage 4, I have some friends who are in your position and a doing fine.
Thank you for posting.

@notapizzaeater that is truly awful, and pretty frightening. I'm so sorry that happened.
With DH it was not as bad as that, he was told it could not be cancer, but it was and we strongly suspected it.