Lonely and scared

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Hi all. After successfully completing treatment for stage 3cervical cancer last year I really felt like I was starting to get my life back on track. However shortly before lock down I started experiencing really bad pains and toilet trouble. After tests and scans they told me that they think that the dreaded disease is back and that I have holes in my bladder as a result of radiotherapy. I am scheduled for nephrostomys on Tuesday to address the bladder issues followed by an investigation to see if cancer is back. I am only 37 and have four children to look after. Does anyone have any experience or advice on how to deal with this. The thought of having pee bags on is scaring me silly.

JaneAustenfan over 4 years ago

Hello Vall

I am so sorry to hear that you are going through this. I don't have experience of this but further down the page there is a post entitled nephrostemys where 3 other ladies have had them. If you reply to the post hopefully someone will get back to you.

The Ask a Nurse service may also be able to help you with any questions as well as the MacMillan helpline open from 8am to 8pm. The Eve Appeal is a charity specialising in women's gynae cancers and you may also know of Jo's Cervical cancer trust. You may be able to find other ladies with experience of nephrostemy on their forums.

I hope this is helpful to you.

A x

Beth2 over 4 years ago

Hi Vall

Just to add to what JaneAustenfan has said, if you do find your disease has come back Jo's Cervical Cancer Trust at jostrust.org.uk has a forum with a section 'living with advanced cervical cancer' where I'm sure you will be able to get more support. I'm not sure, but needing nephrostomys might also mean you could join the advanced group.

I hope all goes as well as possible for you.

I was diagnosed with stage 2A squamous cell cervical cancer (node negative) in 2017 following symptoms: persistent, watery, yellow vaginal discharge then post-menopuasal bleeding. My treatment was a radical hysterectomy followed by chemo-radiotherapy. My long term side effects include lymphoedema and urinary retention which I manage with intermittent self catheterisation.

FormerMember over 4 years ago

Vall, it's hard getting cancer diagnosis at any point in life and it is scary and I am going through chemotherapy at the moment as I have cervical cancer and I have been through hell since November last year and I started treatment in January and it's going well so far. But I am sorry to hear of your condition and I have never heard of that one before. Your not alone and remember everyone on here is sure for supports I've not been on in a while due to my mental health but I am back now. I'm only a message away .

xLx

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