Long waiting times

Hi, sorry to hear your news, I think that nhs guidelines say that treatment should begin 62 days from referral, someone will be along to give you better advice before to long, good luck for the future, .John.

Hi . Certainly at the longer end of the waiting times . 

What treatment are they proposing ? If it’s any help my mum has had significant delays waiting on decisions and her cancer responded well despite the delays but I can understand your concern . Has your cancer spread out with the Bowel ? This can slow the process down as your case may have gone on to a second MDT to see if there was a surgical option at this juncture . Sometimes they prefer chemo first which is also a good plan and what my mum did . You can click on my name to read her full story.

I think that is quite an endurance you have come through so I hope the treatment gets started and very effective for you .

The waiting is incredibly tough for the patient and families.

Take care,

Court 

Thank you for your reply, going to have chemo first to shrink the tumors and then an operation.

Can never get to speak to anybody to discuss the delay, there doesn't seem any urgency ,four months waiting knowing the cancer could be spreading.

You could phone our helpline 0808 808 0000 and they may be able to give you some insight into how to go about that .

Thats a long time . 

Not to justify the delay but to reassure you they do say it can grow for years and I often wonder how long my mum had her secondary spread . Sometimes they can debate if they should operate first and then chemo and that can mean sending your scans off to a different hospital for say a specialist liver units input . It took about three months for them to get a plan for my mum’s liver surgery and around two months for her lung but we got a full explanation of the process . I think it’s quite unfair to leave you second guessing for that length of time .

However I wish you every success with the shrinkage and proposed surgery . 

Feel free to ask any questions . We are more than happy to answer where we can .

take special care ,

Court 

Hi Lynne have you got macmillan nurses at your hospital. I found them always to be so helpful . I too felt at times that the waiting was unbearable and especially not knowing the plan for me, but they would always get back to me within 24 hrs and reassure me. Vanessa x

Thank you Vanessa for your reply, I have an appointment at the hospital tomorrow for something else, so will find them  in the outpatients department and have a chat.

Hi. I’m so sorry to hear about your long wait. My husband has had very similar. He went to the gp at the end of december and saw a locum about a lump he’d found in his abdomen. Never in a million years did I think it would be cancer (he’s only 53). The locum said he needed an urgent ultrasound which would be 3-4 weeks and then an appointment with a gastroenterologist which would be about 4 months. Thankfully we have private health cover and had an appointment with the gastro the following week, next day an ultrasound, next day a CT, following week a camera down the throat then the following week camera up the bum.  Turns out he has stage 4 bowel cancer. He started chemo before he would have even had the ultrasound on the NHS.  It’s so awful - the drugs he’s getting I don’t even think he would get on the NHS. So wrong. If we hadn’t gone private though we would still be living in blissful ignorance, not knowing he had such an awful disease, but perhaps enjoying life much more :-(. 

So sorry to hear about your husband, can I ask what medication is he taking.

Hi Court,

I forgot to add on my post at my meeting  on the 15th my consultant told me he had all my results from my tests , then discovered I have not had a biopsy , he told me they would arrange one before any chemo, only just got appointment for next week another month  has gone by and then I will  wait for the results.

The letter that was sent to my GP   clearly stated a biopsy had been  done, I even thought it was done when I had a bowel ct.

My family solicitor has requested my medical records to find out why there has been a delay in my treatment, by the time my results are back and I get to speak to the oncologist  it will be five months.I am so depressed and angry just want to go away and forget l am ill

No problems - he's started on 5FU which he had for the first 3 rounds of chemo.  He was supposed to start targeted therapy from the 2nd round, if not the 3rd round but the 3rd round came and he didn't have the extra.  Basically we saw his consultant just after who informed us that when he had his bowel biopsy they didn't take enough of the sample to analyse!  Very disappointing I have to say but we just had to get on with it.  Anyhow from round 4 they added Avastin which sounds like it has good results so we are keeping our fingers (and everything else!) crossed that it's working well.