CNS role

Hi B74 

I'm sorry to read that you are trying to chase up results and are not having much luck. Have you got any clinic letters that possibly explain whether you are to have follow ups? On those letters there should be contact details. I would chase up with your Consultants Secretary and ask whether the plan is for an appointment to see him or if he will write with results. 

Hope this helps

A x

I don't have a consultant involved anymore as the surgery was not at my local hospital, so I was referred back to my local hospital for the results. Then there was the oncologist I saw about the radiotherapy and the one who explained that Lynch is a concern, I believe she will be the ones to receive my results when they finally come back, but the CNS who told me the wait had gone from 4-6 weeks to 2-3 months said that they would send the results to the oncologist I believe as, if they are positive, I will be referred on to the genetics clinic. I am just very confused and don't really know who can help or whether the CNS has stopped being a source of support for me. I opted for patient led follow ups moving forward and the oncologist asked that someone gives me a call after three months, which is about now....

Hi B74 

I still think the oncologists secretary will be be your best source of information. In my view you are still under the care of the oncologist until the test is back. She will be able to look into it for you or ask the oncologist directly. The other option is to wait if you think you will be followed up soon but the oncologist secretary should be able to see if there are any appointments pending for you.

Another option is your hospitals PALS service (patient advocate and liaison). They should be able to collate any information for you. Hope you get sorted.

A x

You’ve been very patient! If it was me I’d contact PALS with some “feedback”, making sure to say the impact it’s having on you that you’re (a) having to wait but also (b) that you’ve had no response from your CNS. After my op, I had genetic testing (mine was BRCA) and my CNS was there for me throughout the waiting for results. My op was two years ago and my CNS told me I could contact them with any questions in future. So it’s my understanding that they’re potentially with us for as long as @;£ whenever we need them.

I'm not sure patience comes into it, I have had a look for alternative contacts, like the oncologist's secretary but all.i have is the general number for the hospital, when I needed a number previously I had to ask the CNS ...

I was hoping for the results before I go to visit my son next Thursday, but I'm not so sure I will have them now. I guess I should wait til the 3 months period before contacting PALS. 

I thought I should still be able to get support from the CNS as they are the only point of contact I guess if I were to have symptoms or questions, I am not sure who else to ask .

I wouldn’t wait lol! The main feedback would be about the lack of contact from the CNS, which is not good enough. 

But then they are hardly likely to want to support me if I complain

Of course they will as they will be told to! I contacted PALS twice during my radiotherapy and both times had apologies and action within 24 hours, 

I feel uncomfortable enough asking for support, but I'm not sure I could reach out to someone if I had complained about them

You wouldn’t be directly doing that though  - you’d be explaining how this is all affecting you, and asking for help in facilitating contact/a response. And could ask their help even in finding out an update on the results, especially given the possible consequences for family. Your feelings and mental health will matter to them.