Letters to your GP

[rosebine]

Havent actually seen a consultant face to face for a year. After every phone consult I get a copy of a letter sent to my GP with results etc, and of course its always couched in medical terms and scares me because I dont know what it means and try to look the terms up on the net. Ive come to realise that I actually dont know that much about exactly where the tumours are, apart from the huge ovarian ones, and people on here seem to have much more in depth knowledge of their diagnoses.

I have found in the past that docs will answer you if you ask the right questions but otherwise seem to keep the info to themselves, you have to know what questions to ask though in the first place dont you. Wondering whether to ask them to stop sending me the copy letters as it does stress me out

[fishtrombone]

I have the same problem. Haven't seen my oncologist since Feb but get these random letters which are copies sent to GP.

It is not written in a language a patient would understand nor is it explained. And to make things worse its addressed to a Dr who I've never heard of. Pleas to get the name corrected have so far gone unheeded. My particular gripe is that information seems to be missed out and is sometimes completely wrong. I sometimes read these letters and think they are talking about someone else as conversations that were supposed to have happened on the phone, didn't.

I too have tried researching the terms but some of them don't seem to be easy to find.

Those questions that really need answering cannot be done by phone consultation. I find my oncologist is willing to talk treatment to me but is really vague when I ask how the cancer is progressing and what stage am I at? (I now have palliative care).

I recently was an inpatient to hospital where I was asked if I wanted to be resuscitated. It took me by surprise as I hadn't even had that conversation with my oncologist which made me think, like you, that information was not willingly passed on unless you asked.

It is deeply unsatisfactory to be kept at arms length from your consultant but to have these letters just makes the lack of contact so much worse.

[Manchesterlady]

I totally agree . Why should it all be kept a secret . If you ask questions it’s like you only get waffled answers . The favourite seems to be ... we don’t know . So I know they don’t have a crystal ball , and they can only go off numbers and scans

[Gemimablackvelvet]

Hi Rose! I always ask in advance for a print out of my CT scan when I see the oncologist. I have to google every word almost but I keep it on hand when asking any questions. I've never asked for a diagram of the scan. I think they're very tiny and impossible to decipher apparently. I've also sent for(and received) the hospital notes about every procedure I've had over the last 20 or more years. I think you have to ask for them in writing of course. Very interesting but extensive details. Massive bundle arrives but easy to understand. I'll post shortly about my latest experience having chemo yesterday. It was a good experience (eventually)

How are you?

Angela xx

[Mumsie13 in reply to Gemimablackvelvet]

Yes. I always ask for a print out if my scans. It gives me a fair idea if what is going on. Also when considering surgery for my recurrence, the surgeon asked if I'd seen the scans, which if course I hadn't. He then talked me through them - most interesting once I knew what I was looking at. Thing is I ask a lot if questions and maybe they give in just to get rid of me😉

[Gemimablackvelvet in reply to Mumsie13]

That’s funny Mumsie, I often think the oncologist must dead me coming in although I always try to keep a smile on my face and he seems to endure my constant need for information. I never ask how long I’ve got but he did hint once by saying “how long is a piece of string?” I haven’t asked since. He did also say he has a patient who’d had OC for 25 years so it’s not impossible for some.

Love from Angela x

[Lyndy]

You can speak to Anna at the Ovacome helpline and ask her to explain those terms you are not sure about or your CNS but you are within your rights to refuse them xx

[fendweller]

Perhaps phone your CSN and ask her to explain the letters, might put your mind at rest and give you a chance to ask questions ,I'm pretty certain you can say you don't want a copy if that's what you'd prefer ,good luck. X

[EAR1957]

For me it’s better to put my questions in writing and send them to my oncologist. If I don’t understand the medical terminology in the test results I look up the words. This helps me ask clear questions. It’s easier for me to stop worrying if I take the time to write down detailed questions. My doctors answer my questions!