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!

Late night bump

Ok, last bump then I shall get the message and remove the hard hat

What is your prognosis? Have you been given an estimate of how long you have to live?
Are you working due to financial need, longer predicted life expectancy or need for normality?

Are you still on chemo or are you on drug trials. Also is it a particularly aggressive cancer? I am wondering how it got to stage 4 before it was treated.

Sorry to hear about you having cancer. This is not something I have any experience of. What treatment have you had? How much can doctors tell you about the prognosis? Has this illness changed what plans you make for your life and how you live your life now? How has it affected the people close to you?

My DH is still working with stage 4 lung cancer with brain mets - he's been given a prognosis of 6/9 months (3 months ago) he intends to carry on as long as possible he feels 'lost' without it. His work have been fab, he works from home 95% of the time so if he needs a nap he just has one. They wanted him to go off sick, full pay fir 2 years but he's chosen to continue.

Prognosis is impossible to say really as I'm on a treatment which can work really well at keeping the cancer stable - I know some ladies on my treatment who have been going for 15 years plus at stage 4.
I pushed my oncologist to ask how long he thought the treatment would work for before we need to switch to something else and he really couldn't say as the range is so big - he offered "maybe 4 years or so" but that was before I had chemo, to which I responded really well and am now living with a very low "burden of disease" (tiny tumour in my liver) so we hope that can be kept stable for a very long time

Working due to all three! Hoping to be around for many years yet so need some cash to find my bucket list
I also really love my career and was so happy to go back following close to a year off.

Really sorry to read you are dealing with this
I have a friend who has stage 4 breast cancer and has had for 10 years! She is working full time - work are very good at giving her time off when needed - but I would estimate she's in 95% of normal time.

My Qs to you would be how do you deal with other people not knowing how to handle it? Also the "fear" when you have an ache or pain elsewhere, how do you cope? I would imagine that the mental battle is as hard as the physical.

I hope you stay well for a very long time!

I finished chemo in August last year. That was followed by surgery (mastectomy) and radiotherapy. I'm now on two targeted anti body therapies (Herceptin and Perjeta).
Once the cancer becomes immune to these and they eventually stop working, there are a couple of other approved treatment lines to dry before needing to go to drug trials (though I could opt to join a trial earlier if it made sense to do so).

How I got to stage 4 - sadly any cancer can progress to stage 4, however in my case a misdiagnoses by a GP led to it being discovered quite late

Has this illness changed what plans you make for your life and how you live your life now? How has it affected the people close to you?

While my diagnosis has certainly had a huge impact on my life, I've been quite determined to not let it get in the way of me doing the things that I enjoy - particularity travel (it's COVID messing that one up) I think a big change has been that I want to do more NOW, I don't put things off "until next year" anymore.

I'm a single parent, but DS (10) copes incredibly well, we're pretty resilient, and have accepted that while we don't know what the future looks like (who does?) that I'm here today and we're going to make the most of it. I guess this attitude rubs off on other family and friends too - they may of course hide feelings from me, but on the whole, life goes on as normal, and we keep on keeping on!

notapizzaeater I'm really sorry to hear about your DH. It's so very hard. It's great to hear that his employer are so supportive, work is a great distraction but also focuses my mind.
I actually have a cousin in the US whose DH has stage 4 lung cancer with brain mets, he's doing really well on his treatment so far, but it's costing them a fortune!
It's such a horrible disease,
Lots of love to you and your DH

PennyRoyal I love hearing about the inspirational women living well with this illness long-term, I fully intend to join their ranks!
It is hard when other people don't know how to handle it - in fact I would go as far as to say that at times, that has been the hardest part. I've really struggled with how to communicate with family at times, but some CBT with an oncology specializing clinical psychologist did help.
I like to approach the entire situation with a dark sense of humor - so have to be careful with this in certain situations!
Support groups have been invaluable to me - meeting and becoming friends with others in my situation has helped immeasurably!

I love your positive attitude. What is your career that you love? Why do you love it?

Hi OP. Thanks for the thread and a very important topic.
Can I asked how the GP misdiagnosed the lump? Did he think you were too young to have cancer so didn’t refer you?

Thank you for sharing your story and I hope you have many more happy healthy years ahead.

Can I ask what were your initial symptoms and what were they misdiagnosed as?

Also, if you have one tumour just now, is surgery to remove that an option? Obviously not or they would do it, but from my ignorant perspective it seems like it would make sense to do that.

Are you in shield group? Are you WFH? Any Netflix recommendations if you have it?

I work for a large financial institution as a training delivery manager. It doesn't sound exciting but I've worked in the Learning & Development field for the past ten years and I love it!
My area of expertise is actually virtual training design and delivery so I've returned to work at an oddly well-placed time, as I'm working to help other adapt to doing the role from home!

I think I would like that job too

And you are a single mum like me I find it very inspiring when a person finds positivity in areas that i sometimes struggle with. If you could bottle it I would take it x

Can I asked how the GP misdiagnosed the lump? Did he think you were too young to have cancer so didn’t refer you?

Pretty much exactly this - I would have been 31 when I first went to the GP as I thought I could feel changes in my breast. I wouldn't even call it a lump, it was more of a thickening of the breast tissue, it wasn't obvious, and it was more noticeable when I was on my period so due to my age the GP put it down to "hormonal changes" (this was despite me sharing that my DM had breast cancer aged 50).
I wish I'd known then that a thickening is a warning sign, and that a "lump" isn't always what you'd imagine.
There's a great info-graphic somewhere that uses lemons to show all the different kinds of breast changes that you should get checked out, I'll try to find it.
I wish I'd been referred at the time, but I also wish I'd gone back sooner, it took me 18 months to go back when I felt that the area of thickening had increased - though I never fully stopped worrying about it ... that's on me.

Also, if you have one tumour just now, is surgery to remove that an option? Obviously not or they would do it, but from my ignorant perspective it seems like it would make sense to do that.

Good question

Surgery isn't often considered for secondary / stage 4 cancers, as once the cancer has metastasized (spread) it becomes incurable - yes they can sometimes remove a tumour by operating, but the cancer will inevitably pop up somewhere else, so it's often preferred to continue treating with drugs rather than multiple surgeries. Each case is different though - and oddly I would have been eligible for a procedure in my liver called microwave ablation, where they use heat to kill the cancer cells via a fine needle ... however following chemo, the tumour is now too small for this procedure ... which isn't a BAD problem to have (better too small than too big!) but still frustrating that they can't get in there and zap it!

Are you in shield group? Are you WFH? Any Netflix recommendations if you have it?

Officially yes - though I'm not technically at a higher risk than anyone else as the drugs I'm on haven't affected my immune system (I have regular blood tests and all good). My Oncologist is of the opinion that if I were to contract COIVD I'm no more likely than anyone else to become seriously unwell, but it's best to play it safe and isolate, as I wouldn't want to get the virus, and that then interfere with my on-going cancer treatment.

Yes I'm WFH
I've just finished Ozark and it was the best thing I've seen in AGES. I'm also a fan of Better Call Saul, and have been enjoying some of the documentaries on Disney+ such as The Imagineering Story about how all the Disney parks were built.

Mesomeplace Thank you that is very kind of you to say. I haven't had any choice in any of this, but I do feel that I have a choice in how I approach it, that's the piece I can control, so I work on doing the best I can with that.
It's not easy all of the time - for example I have a scan coming up next week - so it's time for the "scanxiety". Getting scan results fills me with dread as any time could be the one which bursts my bubble and I hear that treatment has stopped working, it will happen eventually there's just no telling when, which is difficult to get your head around. I'm hoping that's a long way off though.

Thank you for answering about your symptoms and why they can't just remove the remaining tumour. If the tumour does grow again then will they remove it then? Or is it just very much wait and see?