Just Diagnosed

ruzman

How long from diagnosis to operation for people?

Hi all, sorry to say I've joined your community! Diagnosed on Friday - Stage 3 (well they didnt say that, but it was big and it's gone to "some" lymph nodes, but apparently no organs).

I'm now waiting.

Friday - diagnosed
Tuesday - MDT met to discuss.
Wednesday (now) - I'm supposed to be waiting for a call or maybe not even that just a letter giving me an appointment to learn the MDT results and I guess agree next steps. Which might be surgery in a week or more??

My hospital doesnt have the best record and it all seems slow and inefficent. I've read some operated on the next day. What have been others experience?

thanks
Russ

sj72

Hello Russ,

Welcome to the forum. Here was my experience.
Colonoscopy 18th Feb advised there and then most likely cancer
.
Had CT and MRIs the same week and diagnosis meeting on 27th. They thought that I was somewhere between a stage 1 and 2 and said surgery would be in 4 to 6 weeks with possible chemo/radiotherapy based on histology. Surgery was done on 8th April.

This forum is a fantastic place for support and members will also share their own experiences with you too.

From my understanding your MDT will review all your results and determine the best treatment plan for you based on their findings.
Hopefully that wont be too long before you know your treatment plan.

Best wishes
Sharon

greyhound gal

Hi @ruzman! Sorry Russ that you’ve had to join our forum, but it’s a great place for advice, support, to let off steam and the occasional silliness!
I did have surgery the day after diagnosis, but it was an emergency as my Bowel was totally blocked. From being on this forum, it would appear that a lot of people have a bit of chemo or radiotherapy before surgery so the tumour and any affected lymph nodes can be shrunk.
When people reply, you can click on their name and (if they’ve filled it in) you can read some back ground history.
Here’s hoping you don’t have to wait too long for a decision!
Best wishes, Wendy :x::x:

Karen17

Hi @ruzman. Everyone's experience is slightly different. I had no symptoms but was picked up on routine bowel screening. I was told during colonoscopy that it was probably cancer and 6 weeks later I had surgery followed by mop-up chemo 8 weeks after that.
Have you been assigned a colorectal specialist nurse? She was the one who kept me updated and answered any questions.
Hope you get more information soon :x::x:

ruzman

Thanks Karen, Wendy, Sharon. (Where are all the men :) ? )

I've got a lot of steam to let off at the moment - sorry.

It does just seem lots of small inefficient things. Like when I finally went for what I thought was my colonoscopy which is what my doctor requested - it was to see a nurse who listened and agreed a colonoscopy was requried - that was 2 weeks wasted. Then the nurse (very nice by the way) suggested to speed up the appointment that I walk the paper form requesting a colonoscopy to the department, otherwise it would only be picked up from her out tray the following day. I'm not even sure that's a process for the late 20th century!!!

There are other examples (unfortunately) it all just makes me think that it's the poor admin that is slowing down the speed to treatment.

Bear G

Hi @ruzman
I’m sorry to hear of your diagnosis but pleased you’ve found our forum, I hope it’ll be somewhere you find friendly and supportive.

The answer to your question on timing is ‘it depends’, and that’s often the answer to many questions on cancer care as they genuinely tailor treatment to you.
It may be that they want you to have some chemo to shrink the tumour before surgery, or they could go straight to surgery if there’s a risk of blockage (like there was for @greyhound gal and me).

It’s also likely they’ll offer you 3 months of mop up chemo as you have lymph node involvement.
This booklet from Bowel Cancer U.K. may be helpful as it explains the treatment approaches.
bowelcancerorguk.s3.amazonaws.com/Publications/Your%20pathway.pdf

We’ll be here for you throughout your journey.

Big hugs
Bear
:x::x:

EssexDan

Hi @ruzman the guys are here buddy. Lol.
I waited less than 3 weeks from diagnosis to operation date. I didnt have any Chemo before the operation.
I was Stage 3 . T4 with 11 lymphs. Read my profile.
Any questions just ask mate.

Lizalou

Hi @ruzman

Please don't think that a long wait will affect prognosis (though what it does to your mental health is a different matter). I was diagnosed in mid July 2015 (same staging as you), just got in my scans within the 2 week limit, waited again to see the specialist and finally had my operation on 8th Sept. The surgeon was happy to wait until after a holiday we had booked, but needless to say, we cancelled.

As I said, the waiting was awful, but, to be honest, that tumour had probably been growing for years. I spent the time madly cleaning and tidying, but we are all different so don't feel you have to do the same...just keep busy!

Anyway, here I am nearly 4 years later, fighting fit. Hope you get some news very soon. Take care. :x:

Mrs2017

Hi @ruzman, my husband was the same, waiting for appointment at hospital to meet dr to agree he needed colonoscopy so another wait for another appointment. In my husbands case he was told each step would take max two weeks so after the colonoscopy where they confirmed cancer , he then saw consultant, had scan, discussed in MDT , had a PET scan and then the op which was about 6 weeks on from colonoscopy, he went straight to surgery as he was at risk of blockage so no chemo first. All the best. Chris :x:

ruzman

Thanks again all. Some very constructive replies, helping to put my mind at risk. When your trust in the hospital is let down by little things you start to question the bigger ones. They may be saying "this" but is that normal? So it's great to her others real experiences and not just have to believe what I hear from the hospital.

mops

Hi @ruzman - Sorry that you are going through this, I hope you get as much reassurance from this forum as I have, it's been a godsend! I was 6 weeks from diagnosis to surgery which was nearly 7 months ago, doing well now and hoping for the same for you :x:

FT

I was diagnosed 9/1 and operated on 5/2 by which time I had had full CT scan and had met surgeon. Similar to you - tumour stage 3 and nodes stage 1. No chemo beforehand but because of node involvement now having 4 cycles of it. Began 29/3; due to start cycle 3 on Friday. If no delays due to blood counts, should all be finished by 14/6. My hospital has been fab throughout and I’ve been encouraged to ring them at every stage with anything I’m concerned about. Even if they can’t answer they ring you back within an hour. First class service from the NHS is my experience

1234annie

2 and 1/2 weeks but I was an a&e admission and had to have a stent fitting first because my bowel was completely blocked. I left hospital with my stent fitted and a date for surgery. I had surgery first staging (t4 n1 (1ymph node out of 41) then 6 months of chemo from July to Dec

angela

Hi Ruzman,
Hope you are further on your journey now and it's positive for you. I was told at an endoscopy and colonoscopy in February 2019 then waited until April 9th for my operation to remove T3 sigmoid colon tumour and lymph nodes.the surgery would have been 3 weeks earlier but I was blocked up and had to have a colonic stent fitted first.Here in Notts I think that this sort of timescale is the norm so maybe it it is the same in your area ,stay strong, cheers,Angela :x:

MrsMoors

My husband was diagnosed in August 18 and didnt have surgery till March 19 :) :x:

kitti

Hi, I was diagnosed on the 28th Dec 2017 and got my op on the 30th May 2018. :x:

ElaineR

Hi I’ve just joined the group also and will give you all my story soon. I was diagnosed on 17th April this year following a colonoscopy on 8th April. I had my op last week on 6th May so still recovering slowly.
Elaine :x:

belinda66

@ruzman

In England the waiting target is 31 days to treatment from decision to treat date - please note that isn't from diagnosis date. There isn't a target waiting time from diagnosis. The decision to treat date is the meeting you have with the doctor after all scans and endoscopies completed. As I understand it, targets aren't legally binding anyway.

When you get surgery will depend on how many are on the surgeon's list, if any key staff are on holiday and if there are more urgent cases than yourself. If there haven't been many diagnoses in your area, your wait can be short.

I waited nearly 7 weeks from diagnosis to surgery which was difficult because eating was very painful and so I ate little, lost a lot of weight and was weak.