Follow up care

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Hello, diagnosed with grade 3 uterine sarcoma last November. Had a radical hysterectomy in January, followed by 3 lots of brachytherapy in March. I haven’t had any contact from either the oncology team or any other medical personnel since. Is that usual? I mean I’m hoping that it’s all sorted but was wondering if there’s usually any other checks done post treatment? I’m often very tired & still having bladder issues - getting up 4 or 5 times a night. I was initially treated for an infection with 2 lots of antibs, but again, since finishing the course, no follow up. I don’t want to pester busy medical types if there’s no need to, but feeling a bit adrift. Any advice welcomed. Thank you

Moderator - Macmillan Community over 2 years ago

Hi ScouseMagyar,

Thanks for getting in touch with Macmillan Cancer Support and welcome to the online community. My name is Fiona and I am one of the Cancer Information Nurse Specialists.

I’m sorry to hear that you’ve needed to have treatment for uterine cancer and still having side effects from your treatment.

It is usual to have your first check up 4 to 6 weeks after treatment then every 3 or 4 months after that for the first few years so please do get in touch with your Nurse Specialist or Oncology team to arrange for an appointment. If this is proving difficult then you can contact your hospital Patient Advice and Liaison Service (PALS) for further support.

Brachytherapy does cause side effects which can persist for months. For most, the side effects do improve with time. Fatigue (tiredness) is very common but will hopefully improve.

Bladder irritation is also a common side effect; it much be exhausting having to be up frequently through the night which may be adding to your fatigue. There are some hints and tips on our website which may help. Whilst it is important to try to drink at least 2 litres of fluid over the day, some people find that it helps to take only minimal amounts from 6pm onwards if they have problems at night as this may reduce the number of times you need to get up. Avoiding caffeinated drinks can sometimes help too. If the problem persists, please do go back to your GP or contact your Oncology Team for advice.

If you feel it would be helpful to talk through the concerns you have, please don’t hesitate to contact the Macmillan Support Line to talk with one of the nurses.

I hope this is helpful, please don’t hesitate to contact us again if we can support you further.

Best wishes

Fiona

Cancer Information Nurse Specialist

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email.

(Posted on behalf of Fiona by the Community team)

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Follow up care