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Hi Scrappydo. 

Thought I’d return the favour for your reply to me. 

I have to say it seems a bit long. For me I was diagnosed on 9th June, after a gastroscopy on 26th May. From there I had PET CT, MRI and endoscopic ultrasound through the remainder of June and July, a staging laparoscopy on 1st August, Jej feeding tube on 16th August and started my first round of FLOT chemo on 11th September. I think it needs chasing up. 

Good Luck 

Gareth 

I had an Endoscopy, then within 1 week a consultancy appointment with a surgeon, then CT scan, MRI and PET-CT scan all within a week; then a week later a laparoscopy, and now chemo - time frame 4-5 weeks.

You certainly need to chase up as the hospital should deal with this within their 2 week period.

I was exactly 62 days from GP to first chemo. I think the NHS target is that 95% of patients should start treatment within 62 days of visit to GP so I guess I just about squeezed in there. Between times I had my gastroscopy, CT scan, PET scan and laparoscopy. I would definitely chase things up if I were you!!

Hi Scrappydo.

Sorry to hear you're having to wait, it's a worrying time. From my own experience, I too had quite a wait between some appointments. From other posts it seems to be somewhat of a postcode lottery.

Please click on my profile icon. This should take you to my cancer diary. Please bear in mind that this is my journey and may not be the same as yours.

Best regards

Geo

I think the problem might be that I had an EMR at end of Oct or beginning of Nov, (I need to keep proper dates now) and I had to wait for another 3 months before they could do another biopsy,.which going by my timeings should happen in Feb. I did phone the GI nurse about more questions I had, but to be honest I was made to feel as if I was asking trivial questions and I was a nuisance in phoning.. It could just be my imagination, who knows. If I don't here anything by New Year I will become a real nuisance phoning. 

Thank you everyone for your help.

Hi Scrappydo, 

Have they given you any information on your blood count? I think if you were to get this information you would have a better understanding of how fast or slow the O/C is moving. 

The Xmas close down also would have also contributed to the delays, but I do hope that whatever happens, you will get more info after your CT Scan... When is you next Oncology appointment ?

Lowe

Hi Lowe

I have no information at all apart from I have O.C. I have no information on my blood count, although the last time I was at the clinic the surgeon took blood, but I don't know what it was for or what the results were.. The surgeon has been on holiday all of January, so I cannot speak to her. I go for my CT scan on the 10th of January and I have to go for another biopsy on the 9th February.I have never had an oncology appointment.

Ok, your GP should have had the results to your Bloods, give them a call and ask for those results and feedback on what those results mean, also, possibly would help if you call the Macmillan team, to see if you can get some support and advice from them. These guys are here to help you. Please call them, as I can't think of anything worse than having a bomb drop on you and be left without any understanding of what that means for you personally..  

I am sorry that this is what is happening to you, and if you feel the need contact PALS, they will investigate and may get you the information you need quicker. 

Lowe'

Lowe

Thank you SO much, I will give the GP a call first thing tomorrow and ask them about what you have said.  I am so scared I have this thing growing in me and nothing seems to be happening, but I will call the GP or GI nurse tomorrow and ask.  Is there anything else I should be asking?  I was told on 8th November I had OC and apart from the scan on the 10th Jan and another biopsy on the 9th February. That will make 3 months this has had time to grow.

Hi .
It’s alarming to read that your experiencing all this waiting and very little information ..but it’s not uncommon in some areas of the country .From our experience the anxiety the waiting  caused was far worse than the anxiety from the illness and the treatment itself

 My husband was diagnosed with OC  in 2022 …it quickly became clear that I had to continually push for scans ..tests and chase up results myself ..The lack of communication and continuity of care was a real issue throughout the whole six months of his diagnostic process  . My husband was too poorly at the time  to do anything for himself so I pushed for everything on his behalf . I didn’t feel I was being a nuisance as it was a man’s life we were dealing with ! ..I eventually had him transferred to another hospital where from then on his treatment and care was second to none resulting in him still being here and on a positive pathway .

Last year I requested a meeting to discuss my concerns with the heads of departments at the first hospital we dealt with ..They admitted they could’ve handled his diagnostic process better ..in particular the nutritional assistance .. I was even told all my interventions had ‘saved his life’ ..to which I replied ‘Wasn’t that your job’ ?? 

I don’t know what the solution is but I would say push for everything if you have to ..I know the NHS is on its knees at present but all hospitals have a duty of care to everyone who walks through their doors .I still don’t understand how some hospitals are still providing excellent patient care but some others are failing ? ..Maybe it’s just down to bad management ! 

(Apologies for the rant ..I still get very angry if I allow myself to think about it ) 

Wishing you all the best with everything 

regards J