Anybody else had spread to eye orbit

[Appletree25]

Hi, just wondering if anybody has had lung cancer spread to their eye orbit. I had already got mets to spine, hip and femur. Everything responded really well to targeted therapy at first scan last July, by Oct scan, bone mets and lymph nodes still good, but although classed as stable lung showed ground glass so stayed on targeted therapy. By Nov headaches and slightly puffy eye and day before Xmas Eve woke up and couldn’t open eye fully. Ct scan results in Jan that showed spread to lacrimal gland and muscle and lung progression. Radiotherapy in Feb to eye and lung which has helped open my eye, waiting on results of latest scan to see what is going on inside.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Appletree25

I hope you hear from others in the forum to provide support and encouragement.

As I have spoken with you earlier, I have sent you a private message.

Kind regards

The Roy Castle Support Team

[Seaspray298]

Never realized lung cancer could spread to the lacrimal gland, but it makes sense. On immunotherapy I have a constant discharge but no pain or swelling. Thanks for educating us and best of luck moving forward! I only have CT scans from the neck to the thigh. Will your scan include your eye or is it a different type of scan?

[Appletree25 in reply to Seaspray298]

Thanks Seaspray, l think it is pretty rare, on a few Facebook groups, two uk and two American and can’t find anyone else, hence now asking here. The scan l had last week, results l am waiting on, included head to pelvis, l am waiting to hear back from Oncologist as the scan in December, added in by ophthalmologist, included a fine slices ct of the eye orbit, which picked it up, oncologist hadn’t asked for like for like this time which seems off to me but waiting on him coming back with the reasoning. I would definitely ask for head to be included once in a while. Mine wasn’t included in October and even with a pain in my head it took a couple of asks to get it added to January scan, but l didn’t get to January before my eye was very obviously not right. Hope the immunotherapy does the trick, but don’t be afraid to ask why they have never scanned your head or what might be causing your eye symptoms x

[sassassas in reply to Appletree25]

Hi Appletree25 Really hoping the results of your next scan show the radiotherapy is helping. As Seaspray says, thanks for sharing this with us all and educating us.

I'd be really interested to hear why your oncologist didn't get any head scans ordered - if you would be happy to share after your meeting, please let us know. Other people's experience is so helpful! A year ago during diagnosis, my husband had a scan of his head (and it was clear) but the onc said at the time, we'll consider doing this scan again at some point in the future. Maybe time to ask...

Sarah x

[Appletree25 in reply to sassassas]

Hi Sarah It seems they don’t routinely scan head unless symptoms, once l had symptoms they just added it to the future scan rather than bring the scan forward. I personally would ask your husbands oncologist if now is the time to add in a head scan, asking doesn’t hurt. x

[KT22]

My husband became very unsteady & our GP asked the oncologist to add a head CT to his scheduled neck to pelvis CT. Sadly the oncologist refused to do this & 3 months later he was admitted to A&E where head CT showed brain mets. Definitely be assertive if you think a head CT is needed.

[Appletree25 in reply to KT22]

I agree, it seems we do have to be our own advocate. I hope your husband doing ok x

[KT22 in reply to Appletree25]

Sadly my husband passed away after a too strong chemo treatment. I’m currently in the process of a complaint into negligence. So that’s why I’m advising people to go with their instinct & be assertive. It’s too late for him but I’m trying to make sure it doesn’t happen to others. I truly wish you all the best xx

[Appletree25 in reply to KT22]

I am so very sorry that your husband passed away and in such difficult circumstances. Please find time for yourself while looking for the truth in to what went so wrong with your husbands care. xx

[KT22 in reply to Appletree25]

Thank you so much. I’m really struggling. X

[Appletree25 in reply to KT22]

I am sorry, please make sure you find someone to talk things through with x x

[chinpolo]

Hello I was wondering if you have had blood biopsy to see if you have a mutation which has led to spread of the eye. I have a very close friend who was diagnosed with stage 4 Jan 2020. A liquid biopsy discover she had her2 exon20 mutation which is not very common but eye was the first symptom she had even though it was stage 4

[Appletree25 in reply to chinpolo]

HiI had wondered and although my oncologist wasn’t going to l organised a Guardant 360 blood biopsy but it didn’t show a new mutation just the original egfr exon 19. I might try another blood biopsy again in the future. I hope your friend is doing ok x

[chinpolo]

Friend days are very different. Some better than others. Thank you for asking