General discussion

Floss07

Pathology Report

I have had good support from my local hospital and colorectal nurses and surgery to remove tumour (Stage 1) seen to be curative. However I had to push to find out what cells they were (poorly differentiated). So despite all the good news am still worrying. I asked for a copy of my pathology report as I have been given little detailed information. Answer was I would have to go down a legal route to get it. Can anyone offer any advice please? The wait for monitoring me to next CT scan is long and depending what's in report we may have one done sooner, paying privately. Advice welcome on that too. Many thanks.

Coppertop

Hi @Floss07, don't know if this is of any help to you but I wanted a copy of my second ct scan report, got the run around from Colorectal Team so I contacted the ct department direct, they sent a form which I have to fill in and couple of ID to prove who I was and in just over a week I had the report and a disc with ct images, maybe try going direct to your Pathology Department, good luck :x::x:

charleyb

hey @Floss07 I am confused why you would need to go down the legal route? We get copies of all reports and all letters. Can you ask to be cc`d into the letters. I know some don`t want to read it, and i think that is a personal choice, but i like to know everything, as like you i did not know some stuff until i read it or pushed for it. It is scary reading, and some of it really technical so takes a bit of figuring out, but i`m a like to know kinda person....my husband does not want to or need to. I open the letters and he pops them away and thats that lol. If your team will not give you the letters/scans, can you request them from your GP? Also going straight to the scanning dept is a great idea too!
In terms of scan times i think it can vary with hospitals, how long till the next scan? and are you having any bloods in between or at the time? :x::x::x:

jj

@Floss07 I asked with my husband present if we could have a copy of the histopathology report to our surgeon in the follow up appointment post surgery. They posted it to us within the week. So I can’t understand why they have refused to give it to you.
Regards

DianeS

I would definitely chase this @Floss07 after all it is your body and I cannot understand why you would need to go down the legal route :x::x::x::x::x:

Floss07

CharleyB - bloods I think they said 6 monthly but it might have been 3 - but my CEA levels remained normal despite severe anaemia. Scan is in 18 months. They will offer colonoscopy at 12 months but won't happen until around 15 months. I live in the retirement capital of the UK!! They only retrieved just above the minimum number of nodes so am a tad concerned though realise I am lucky. Asked at GP and need to write in to request - don't know the response yet. Was surprised by colorectal team answer after all they must have it. Thanks

Floss07

Thanks everyone will ask path direct.

Baxter2

Good afternoon @Floss07

Advising you to take a legal route to see your pathology report is quite frankly nonsense in my opinion! You're entitled to have access to all of your medical records. If you wish, you can simply request the whole lot quite easily and you may choose to just read them on hospital premises or have a copy of everything sent to you including all images and reports if you want. I did this and got the lot with no charge either. I needed them for liaising with different consultants at different hospitals so they were enormously helpful for that reason.

Good luck!

Karen 💚💜💙❤️💛

Bear G

Hi @Floss07

Firstly, the most important thing is that you are Stage 1, that’s good need as it means you caught the cancer early and this is associated with over 95% cure rate. I’m really pleased for you with this, it’s very good news.

Secondly, regarding follow up, the NICE guidelines state “You should be offered at least two CT scans of your chest, abdomen and pelvis in the first 3 years and regular blood tests. You should be offered a colonoscopy 1 year after surgery and if your colon looks normal you may be offered another in 5 years.” so their follow up plan seems in order, I hope that’s a little reassuring for you.

Regarding not letting you see the pathology report, their response is really unusual and unnecessarily confrontational, especially when you say you’ve had good support. As the others have said, you do have a right to see your records, these days is unusual for them to say ‘no’. Asking your GP to request it for you is a good idea. If this isn’t successful and you’d like to pursue it, then I’d suggest contacting PALS and maybe asking your MP to get involved.

But please don’t let this detract from the good news that you caught this early.

Big hugs
Bear
:x::x:

dc1

hi @Floss07 , your not in Lincolnshire are you by any chance!! I had to send a solicitors letter to get my pathology report as I was told it " was the property of my surgeon" however if it reassures in any way the whole poorly differentiated is a moot point anyway as at stage one they are unequivocally certain all of the cancer is removed....as for chemo that you mentioned in another thread an analogy............... why pour weedkiller over a perfectly lovely lawn

Floss07

Thank you reassuring about poorly differentiated, worrying about the report. Get your point ... As a gardener!