I just feel blind sided

[JellyNellyKat]

I don’t know if I’m being unreasonable or not but here goes. I had a teams appointment with genetics and because it was teams based I decided not to have anyone with me at the appointment, because I stupidly thought it can’t possibly be bad if it’s by teams?

Wrong. I was told the cancer currently have is caused by a genetic mutation that increases my chance of further cancer by 80%, in particular pancreatic and breast cancer the pancreatic cancer can’t be screened for at the moment and I’ve been asked to be part of a trial to try and figure out a screening process for pancreatic cancer. I also have a gene that is related to breast cancer. I just wasn’t expecting to be told that today.

aibu to be shocked it was done by teams ? I’m a cancer dr myself and I just don’t think I’d ever do this via teams

How far are you from your local Clinical Genetics? Genetic counselling is still performed remotely quite often - 'attend anywhere'. You can thank COVID for that one. Telephone/email the department and request a face to face stating you are not getting the full counselling benefit remotely. What gene/cancer is this?

I'm so sorry that you've had such shocking news and that it was delivered in such a manner. I hope you have people around you now for support?

FWIW, I would have assumed the same as you, that a teams call wouldn't be the medium for bad news. If you feel up to it, you could feedbaco to them, but focus on yourself first and foremost.

Sending strength and good wishes... 🌻

I’m sorry about your risk, OP.
I don’t think it’s unreasonable to have done this online, because they weren’t saying you actually gave those cancers right now. I do understand why you might have thought online appointment were informal and therefore the appt would be easy outcomes.

You’ll know telemedicine is gaining ground. I do thinking the perceived informality of an online consultation with shift.

I’m 20 mins away and my last appointment was f2f. I’ll get over it I just felt today was like a punch in the gut 🤦‍♀️

Honestly I think I would prefer teams. At least you were able to log off and process vs. making your way home.

But that’s me and not you.

It doesn’t sound like great news but at the same time it also doesn’t sound like a done deal that you will get the other cancers.

Hang in there, it does sound like you’ve got a lot going on.

I understand OP. Like a previous poster said, this information informs you of increased risk of developing these cancers. It's not to say that you will develop them, and sometimes it is better to be aware of the risk so that you can prepare should it happen. Please reach out to your genetics dept and tell them that you need further support. I promise you they will be receptive and helpful.

Hi, I hope the risk never materialises, I’m sorry you’ve had these terrible news delivered to you while alone!
you mentioned there is no screening but there are tests they can perform, for instance Blood tumor marker for pancreatic cancer is CA 1-19 and also CT scans of the pancreas cancer detect neoplasms hopefully while still small enough to operate. Also Pancreatic function blood tests, primarily lipase and amylase tests, and another couple of blood tests are used to assess the health and function of the pancreas.
I hope you enrolled in the trial, there is so little screening sadly for pancreatic cancer , it’s really sad…
best of luck!

Im sorry op you had such bad news. You could ask in future for face to face appointments.

Everyone's different. I would prefer teams rather than have to travel back home.

Hey OP
I am sorry to reactivate this old thread, but I’ve just been told to join maybe the same trial as you (EUROpac?). Can I ask how you’ve been getting on and whether you did join the trial?