Post-op scan waiting time

AlbaH 3 months ago

3 replies
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Hi, a quick summary… I was diagnosed with upper rectal cancer Nov 23, temporary ileostomy Nov 23, 5 day radiotherapy Jan 24, Folfox chemo Jan - March 24, op to remove the tumour and bowel resection June 24. I still have the stoma and I’m hoping for a reversal but have been told by the surgeon that as I no longer have the tumour then I’m at the bottom of her priority list for theatre slots, which whilst true, also feels harsh.

When I was discharged after the op in June 24, the surgeon said I would have a post-op check at 6 weeks, followed by a scan to check the join 6 weeks after that, which would inform her decision about the stoma reversal. Her check-up was delayed to 11 weeks, mid Aug 24. I phoned the hospital yesterday to see if there was any news on the date for the scan and was told March 25, which is much later than I’d be led to believe and will delay the stoma reversal too. I’ve always been told the reversal is the final part of my treatment plan and I really want it to happen & feel ‘me’ again.

The surgeon’s secretary and the cancer specialist nurse don’t return phone calls which is really frustrating …I feel in limbo and don’t have a point of contact. So I’m hoping that somebody here will know if that is a typical wait time from op to scan, June - March??? Or from seeing the surgeon post-op to scan, Aug - March???

Thanks, AlbaH

Kareno62 3 months ago

Hi AlbaH I totally get where you’re coming from. I finished my post op chemo in the August, had a scan to check the re-join in the September and then the reversal the following March. My surgeon described the reversal as a ‘nice little op’ to slot in between the bigger ones.
Im wondering if the hospitals are gearing up for the winter pressure and putting non priority patients on the back burner until things calm down a bit? If you wanted you could raise it as a complaint with the hospitals PALS department.

Aside from that you could also be organised and start practicing your sphincter muscle exercises as described on page 25 of this booklet

https://bowelcancerorguk.s3.amazonaws.com/Publications/RegainingBowelControl_BowelCancerUK.pdf

Take care

Karen x

Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

AlbaH 3 months ago in reply to Kareno62

Thanks Karen, I just feel a bit frustrated to have got this far and then suddenly nothing seems to be happening!! I’ll look at the booklet again, think you kindly shared it with someone else before… don't want any reasons for the reversal not to go ahead!!!

AlbaH

Ellie1 3 months ago

Hi, I feel your frustration and am sorry you are having to wait. We are in a similar position…my husband had a one year chest scan a month ago, prior to final approval for his ileostomy reversal go-ahead. We are still waiting for the scan result! I have phoned consultant sec and it seems the consultant has been on holiday and has a backlog of results to look through, is in-call etc. It is very stressful both waiting for the result, and for my husband getting the go ahead for the reversal. He is desperate for the reversal and I really hope there won’t be a long delay. I do feel sad that on top of all the stress already involved with this horrible disease, patients (and their families) have the added stress of delays in tests, results, and progress with treatment plans. I know the consultants and staff save lives so I am not criticising them, but it doesn’t help patients to have this added stress and delays. I really wish you well with your ongoing treatment. All the best.