Uterine cancer aftercare

I had a total hysterectomy robotically with everything removed vaginally, 4 weeks ago. The surgeon told me he had removed everything intact and saw nothing elsewhere. He had previously told me and written to my gp that I shouldn’t need any more treatment. I am healing well and was so happy that I have a second chance of life. 
imagine my horror when I had a phone call from the hospital last week saying they were pleased to invite me to an appointment to talk about having radiation to my tubes and ovaries! I said they had been removed and that I had been told my cancer had been contained and removed in my uterus and my tubes and ovaries had been removed at the same time. She seemed confused and cut the call short. I was terrified! Did this mean it had spread in the 6 months I had been waiting for treatment? Was the surgeon wrong? Once I had calmed a bit I phoned to talk to the surgeon, who is always unavailable, got a gynaecological nurse who couldn’t understand why I had the call but suggested I went to the meeting offered just to find out. The radiologist specialist told me the surgeon couldn’t have removed everything vaginally and i must have been sent to her because as it had been cut up to remove through keyhole surgery as they don’t remove vaginally using keyhole and I could have 3 brachytherapy treatments as a back up plan. The side effects of this treatment scare me, vaginal stenosis, having to use a dilator for life to name a couple especially if I don’t really need it in the first place! I can’t seem to get any clear answers from anyone and have no one I can talk. Can anyone here help? 

  • Hello Willow1 and thanks for posting

    I am sorry to hear you have been left confused about this upcoming appointment.

    Unfortunately as no one here is involved in your care it is difficult for us to say if you do or don't need further treatment.

    It must be incredibly frustrating for you in not being able to get any clarity from anyone at the hospital so far. I wonder if you have tried to speak with the consultants secretary to query whether they can call you to ask them some questions about whether more treatment is needed now.

    I do hope you know more soon and that your mind can be put at ease. Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Best wishes

    Naomi