Nil residual ...

[candyapplegrey]

Ok, I received a letter as a courtesy from my oncologist, dated 20 August, received 11 September saying this:

From surgeon: 'TAH-BSO OMENTECTOMY BPLND PALND NIL RESIDUAL'

Does this mean that I have no cancer?

‘She has no children and no partner.’

How is this relevant?

‘I have arranged to see her again next week for discussion around consent for chemotherapy and BRCA testing and to book her baseline CT scan.’

And at this point, two weeks after my first chemo treatment, I realised that I hadn’t had a baseline CT and no one noticed this until I brought it up at my next consultation when they hastily slotted me in. I spoke to Macmillan and they said it should have been done to establish the baseline. I also hadn’t had a CA125 test as far as I’m aware.

Is this common [edited by moderators]?

Candy xx

[Seasun36-uk]

Dear Candy,

I don’t know where you are being treated....it doesn’t sound satisfactory...

(Can you go to a bigger/better centre?).

I think you should have had a face-to-face consultation or at LEAST a telephone consultation. It’s too important for a letter!!

[Edited by moderators]

Please try to get hold of a Clinical Nurse Specialist - to be your advocate.

If not - PALS or Ovacome (Anna) or ring your Consultant’s secretary & ask for a video consultation. My GP has been very helpful too & I’ve had a couple of video consultations with her.

All the best, keep fighting on!

Best wishes,

Linda

[Newbie_2020]

Did you have any blood tests 1-2 days before your chemo?

[candyapplegrey in reply to Newbie_2020]

Yes. I did. Will check.

[Realistic]

Not satisfactory at all, you need proper information, l know l keep going on about Covid19 but its just not right whats going on at the moment. You need help and proper advice ring your helpline and explain your situation, and good luck, all stay positive and try and get the right treatments and answers. Xx

SheilaF

[candyapplegrey]

Thanks, everyone. I did see the consultant originally but it looks like no one booked the tests or scans.

My relationship with CNS has broken down so I can't get help there which means I have no point of contact.

They're now trying to tell me that if there is anything wrong with my heart, it must have been an underlying condition but think they need to investigate it and have passed me back to my GP surgery which isn't exactly fast track.

Candy x