Final diagnosis uncertain - either cured or stage 4

[Surfinsafari]

Hello all,

I hope you are as well as you can be.

I am wondering if anyone has ever been in my situation. This is quite long - sorry.

I have metastatic breast cancer in my bones (9 years) which have been stable for quite a few years.

Routine CT picked up lung nodule - PET confirmed most likely lung cancer.

Vats surgery three weeks ago aiming for cure - histology confirmed lung adenocarcinoma - clear margins

Went for breast oncology appointment three days ago and mentioned more increase in back pain. Breast onc said we think it's metastasis from your lung cancer as the PET scan showed new metastasis in my spine which came at more or less the same time as the lung nodule. Had PET 6th April and no one told me there were new mets in my spine.

I went from thinking I was cured to stage 4 in the space of 5 minutes! He then back tracked a bit and said that they can't be certain and it is possibly progression of breast cancer mets.

Yesterday had first follow up appointment with lung team and mentioned this and he said as far as we are concerned you are cured and we would not have operated on you if we thought that you had metastatic lung cancer.

The lung team are going to have another look at scans and go back to MDT to discuss this as would need further treatment.

Meanwhile I am left not knowing if I have no lung cancer or stage 4 lung cancer.

Thanks for reading - I'm all over the place at the moment.

[Cockailschemocancer]

oh gosh that’s a lot to take in … I hope it’s the former for you - sending positive vibes your way xx

[Cosmic54]

bless your heart no wonder your all over the place my heart goes out to you my lovely sending hugs. No advice just hope that it all goes well for you 🤞

[JanetteR57]

certainly a roller coaster experience - and medics who deal with this every day seldom appreciate the devastating effect their words have on us as we try and come to terms with what that might mean.

It's unsurprising that such a state of uncertainty will be effecting you but whether you worry yourself sick or try and put it to the back of your mind by distraction and immersing yourself in something else until you hear, the results will be exactly the same. Anxiety can itself cause physical symptoms that do not help us at all never mind when we have cancer whatever its origin.

hopefully the lung team will liaise with the breast cancer team and look at the PET images again.

Usually the PET results are what guide the decision whether to operate or not - from reading your post, it's the mention of back pain that has prompted him to suggest it's likely mets and comment that they've found new spinal mets yet surgery itself can trigger back pain as it disturbs the nerves/muscles. As the lung team has said, surgery is usually undertaken with curative intent but if mets, they may offer additional treatment. If it is lung cancer that has spread to the spine, some receive SABR (ablation - a type of radiotherapy) to zap them. I'm unsure whether they offer the same for breast cancer mets in the spine. They are also offering chemotherapy (usually adjuvant - i.e. preventative) and immunotherapy before and after surgery in some cases.

I had adenocarcinoma removed from upper left lung (7cm) with open surgery (VATS didn't exist) in Dec 2010 with clear margins. I remember experiencing the same merry go round when the registrar showed me the CT scan and pointed at a large white blob on the right hand side and said 'that shouldn't be there' then her response to my question 'what is it?' was 'cancer'/. Me - cancer? what of? what am I looking at? She responded 'lung' so when I asked how on earth I had that when I'd never smoked, she backtracked and said it might not be as she couldn't interpret the scan. I told her she had ended my world but she wasn't concerned in how devastated her words had left me - she hadn't checked how I'd got to the hospital, nor whether I was alone - until that point I'd been constantly reassured, this was unlikely to be serious and misdiagnosed as 'uncontrolled asthma' despite me knowing it was nothing like asthma and didn't respond to the asthma meds I was given for the week I spent in hospital. The chest x-ray at A&E the day before admission clearly showed the 'lesion' in my left lung yet was ignored. I was sent for PET scan within a few days then an appointment with surgeon made but pulled forward by over a week when PET results came in and operated on 2 weeks later. I didn't find out mine was cancer until almost a month after surgery as the surgeon didn't want to waste more time on a biopsy and said it would be sent away to the lab after surgery. Even getting a scan and follow up had taken 2 months at that point. I was left all over Xmas (surgery 16/12 - follow up with diagnosis 13/1) and new year not knowing what I'd had but focused on recovering from surgery - gentle walks, reading, watching films, keeping busy, etc.

Hang on in there - do something nice, immerse yourself in an activity or seek company and do something unrelated to your illness if you can to distract yourself mind into different places. Good luck. thinking of you.

[Surfinsafari in reply to JanetteR57]

Thank you so much for sharing your rollercoaster journey. That must have been a nightmare.

Yes. Worry changed nothing.

The PET scan highlighted both the lung lesion and new metastasis so I’m surprised that no one mentioned/questioned it.

At least someone is having another look.

You’re right. Professionals sometimes don’t realise the impact of their statements.

Hope all is well for you.

[JanetteR57]

Thanks so much. Your case also shows the need for teams to work together when a patient has more than one condition... hope you get some clear answers soon. in the meantime, hope you can do something nice for yourself. take care.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Welcome to the forum and so sorry to hear of your cancer journey so far, you have been through so much already.

Your confusion and anxiety is understandable, Janette R57 is correct in what she has explained and there is not much more to add. Lung surgery is often only offered if the tumour is small and no evidence of spread and it is encouraging what the lung team had said. Hopefully you will hear from them soon and have further clarity.

We have a range of support services, from one to one support to online support groups through zoom , if you are interested in any of these you can register through this link: roycastle.org/help-and-supp...

You are welcome to contact ask the nurse if you would like to discuss further, our free phone number is 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600, alternatively you can email us at [e-mail]

Kind regards

The Roy Castle Support Team

[Kazzacrazy]

How awful for you. I hope you get some answers soon x