Watch and wait lung mets?

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Good evening, I wonder if anyone could offer some advice/wisdom/experiences? After finding out my mum has multiple lung mets (they’re saying 10 that they can see with mild metabolic activity on PET scan) 2 years after initial surgery she was due to start chemo (FOLFIRI) this coming Tuesday. This was after an initial consultation with the most awful oncologist 2 weeks ago who explained absolutely nothing to us. Today after requesting to speak to a different oncologist (within the same trust) we have been given the option to basically ‘wait and watch’? Something I’m not sure I’m entirely comfortable with but she explained that bowel cancer tends to grow slowly and so delaying treatment while my mum is feeling otherwise completely healthy is a perfectly valid treatment plan at this point? She also told us that she wouldn’t be eligible for ‘standard’ immunotherapy…are there ‘non standard’ forms of immunotherapy? She explained that as bowel cancer tends to be slow growing delaying treatment won’t impact the outcome but it will give my mum more time without having to suffer chemo ‍ and if she starts to have other symptoms or 3 monthly scans/6 weekly bloods indicate action needs to be taken that is when they will start the chemo.

Does anyone have any experience with similar? I can’t quite get my head around doing nothing but at the same time my mum is on the surface of things a healthy 67 year old (going on 47!)

We have delayed for 2 weeks at this point to give us time to process and research

Thank you in advance ️

Faloola over 2 years ago

Hi was just reading your story and can’t believe how similar your mums story is to mine. So here we go.

I had bowel cancer 10 years ago had a bowel op followed by mop up Chemo. Unfortunately it decided it liked me so much it payed me another visit last year after being 10 years without disease.
I met with the oncologist who advised me I had recurrent bowel cancer stage 4 nodes on both lungs approximately 15, tumour in my pelvis/sacrum and enlarged lymph nodes outside my bowel. He said it’s incurable and not operable. I was shocked then he hit me with he wasn’t going to offer me chemo as I was doing great and living my life and we would do scans every 3 months. As the scans have shown only marginal growth since last august I’ve had no treatment but starting chemo beginning of June as I’m starting to have some leg and hip pain. I’m also 67 going on 47 lol. So I’ve been on a watch and wait. I was also told it would make no difference to the outcome as trials on starting sooner or later made no difference. I decided to believe him.

Cath

court over 2 years ago

Hi VGCL

I think that’s the school of thought that lung mets are more inclined to be slow growing . My mum’s first one was watched over two years and went from 2 mm to 8 mm within that timeframe . With this recent recurrence they watched for three months then decided to start treatment .

Not sure what she meant by standard/ non standard immunotherapy. Is she suitable for some of the targeted treatments?

Good idea to take your time and think it through .
Take care ,

Court

Helpline Number 0808 808 0000

VGCL over 2 years ago in reply to court

Thanks again for your reply ️ I’m just so confused I’ve no idea what she meant by ‘standard immunotherapy’ and as far as I’m aware they’re saying she isn’t a candidate for any otherwise I would like to think they would have told us otherwise? They’ve given no options other than leave it for now or start chemo. It feels like they’ve written her off and if they haven’t they’re not giving us any insight into what could be done in the future. She has a ‘normal’ NRAS and BRAF I believe but the KRAS has a mutation which after some research myself seems to be not so good (putting it mildly) but I’m not a specialist, I only know what the internet tells me because I don’t think any of the healthcare team have told us that much. Maybe I have unrealistic expectations, maybe I’m in denial I don’t know

VGCL over 2 years ago in reply to Faloola

What a shock for you to be 10 years disease free to find out it had returned, what a cruel disease this is you sound like you’ve got this and trust your team. I think perhaps I’m maybe somewhat in denial. I just want to be sure we’ve covered all bases. My mum is really struggling at the moment which is understandable it’s hard to see and I just want to look after her she’s my best friend ️

Faloola over 2 years ago in reply to VGCL

Hi VGCL, I understand you wanting to protect your mum my daughter is exactly the same. Well my oncologist is on probation with me basically because he’s not over the detail and I told him so way back at the beginning. I think he understands I’m the kind of person that likes to be over the detail as he’s change his approach with me now.. u motto is I can’t change anything as much as I would love to do I just take it one day at a time, it’s not easy but it is what it is and as long as I can I will be on my travels lol. I’m away to Dundee tomorrow for a few days break.

Cath