Gynae follow-up

It sounds unusual to me to have no follow up even in Covid times. I would definitely contact your CNS

Hi dreamweaver 

nice to hear from u I know we are at simalar stages and had our hysterectomy in the same hospital 

I also have not seen surgeon or heard from him the oncologist I seen at start of brachytherapy also examined me but I didn't really have a chance to discuss anything with him .I had a phone call appointment with him last week I have had ongoing cystitis symptoms since first bracky but urine tests don't always come back as infection he just seemed to think give it a bit of time to settle down so we shall see 

He to was shocked I hadn't spoke to anyone in gyne but said he would get me an appointment to see someone in June so now I am discharged from him .like u I have still bloating and tingling at top of legs and still get fatigue.He couldn't answer any of theses queries.I say I have appointment in June but not heard anything yet he said give till may and then get in touch with cns.I haven't spoke to her since I had sepsis in Dec 2020 but feel now I should as like u worrying about recurrence .The build up to op all the tests and actual op it was all full on ,now if feels u are left to get on with it so I understand where u coming from .U should get in touch with cns I am in the next couple of weeks as I want to know I am where I should be in recovery plus it just puts u in there mind again .sorry this a bit long but I feel u are the same as me We have come a long way we all have so keep positive 

• stay safe x.

Hi Dreamweaver,

I can only go by what I have experienced. My husband, who had throat cancer, had check ups very frequently, monthly. He was very gradually 'let off the hook', until 5 years after his last operation, when they signed him off. That was 14 years ago now. He had 2 operations, and radiotherapy and various 'procedures', hence the need for check ups.

I, on the other hand, only had 2 check ups the first year, then was put on the patient led programme, where I just ring up if anything crops up. I thought I was supposed to be rung up once a year, but have heard nothing! (Now nearly 4 years since the operation.) I only had the hysterectomy and no other treatment.

I would have thought if you have had treatment as well as an operation that they might have kept more of an eye on you. I think I'd ring your CNS. I'm sure Covid has thrown everything out. XXX

Thanks Galathophile, I will do today. Dx

Thanks NannyAnny, I'll call the CNS today (will try both hospitals just to be sure!). Dx

Hi Lara, good to hear from you, and reassuring to know that I'm not the only one having this experience. I'll contact both hospitals' CNS today and see what's happening / what to expect and will post back here soon. I've had an x-ray of my spine recently because tingling had spread to feet and lower legs but seems all clear (probably from tweaking my back one day, rather than cancer spreading - but every twinge makes me think it's big C returning!). Hope you hear soon about your next appointment too. Take care, Dx

Hi All

I'd been seen by my Oncologist just before my very first Brachy treatment to make sure I had healed sufficiently . I'd expected a letter for a January follow up but had had to nudge the hospital for a post treatment op and spoke to my CNS who was shocked I hadn't been contacted and got me an appointment the very next day (it was a cancellation but who cares). I said I wasn't sure who should see me Oncologist or Gynaecologist - she replied she wished she knew too as it's always a bit muddled. I've got an appointment on Tuesday 31/3 with my Oncologist who after will discharge me to the care on my Gynaecologist who will look after me for 3 years. Already got my appointment with him for 1st June so Lincoln seem to have got it right. ( BTW I don't mind being fought over by 2 nice young men!)

Definitely give your CNS a call, no way should you wait nearly a year before examination. When we think about it most of us had no idea we had cancer in the first place - I certainly didn't!

Big hugs to all, Barb xx