Nephrostomy

FormerMember over 3 years ago

3 replies
57 subscribers
629 views

Hi everyone, very long story short I was diagnosed with 2b cervical cancer in March 2019. The tumour from the cervix has gone but I still have diseased lymph nodes which my oncologist has decided not treat as they appear to be resistant to treatment. The little darling lymph nodes have meant I have had to have a nephrostomy.

Can anyone on here whose had a nephrostomy tell me how you coped after first having the procedure and does the ache around the tube ever go away?

Mine was done a week ago and I am really struggling to deal with whats happened. Its seems every time I think I am getting on with my life something knocks me back. I have an 18 month old son and have managed to stay positive from diagnoses to now for him but this last procedure seems to have been one too many.

latchbrook over 3 years ago

Hi and a very warm welcome to the online community

I'm sorry to read that you were diagnosed with cervical cancer 18 months ago and have recently had a nephrostomy.

The community is divided up into groups so I'm going to recommend that you join the cervical cancer group where you can ask questions, share experiences and get support from others who will understand what you're going through.

To join just click on the link I've created and then choose 'click to join' on the page that opens. You can then introduce yourself and post questions after selecting '+New' or '+' (depending on the device you're using) and join in with existing conversations by clicking on 'reply'.

When you have a minute, it would be really useful if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

"Never regret a day in your life, good days give you happiness, bad days give you experience"

Vall over 3 years ago

Hi. My name is Vikki. Last year I had treatment for stage 2b cervical cancer. I had few surgery's, chemotherapy, radiotherapy and brachytherapy. I had clear scans in Feb 2020 and felt like I was winning with this horrid disease. In March I started having new symptoms that were consistent with radiation damage and developed a fistula which led to problems with incontinence. Due to covid a lot of my appointment and tests took a while and on the 1st September 2020 I had 2 bilateral nephrostomys fitted followed by the news that the cancer was back and had spread restaging me at a 4! I like you find it very difficult to deal with as I have 4x children the youngest only just gone 2. All through my treatment I coped fine as I am a very positive person but these nephrostomys have me a little defeated. I find it difficult to carry ut the most basic things such as cooking tea and sitting on the floor to play with my son. I am also unable to lift him and bedtimes are a struggle. The pain from the nephrostomys is only just starting to become manageable and is sore when the tubes are touched or move suddenly. I am having trouble with very dry skin around the site and where the leg bags are and I am having a few emotional wobbles at the moment. I will say though after just over four weeks of having them in I am starting to get used to them and understanding more what I can and can't manage to do during the day. I do have good support from the nurses that visit often and can discuss things with them. Do you have any support like that? I hope things settle down for you soon and sending you the very best wishes your way. Stay strong. Vikki xxx

FormerMember over 3 years ago in reply to Vall

Hi Vikki, thanks so much for replying. Its just so good to know am not alone in struggling with the nephrostomy. I like you class myself as a postive person with a just get on with things attitude so feeling so down is unlike me. I spoke to my GP yesterday and feel so much better for it. I was refusing to speak to anyone medical as I am just so angry about things but realise no one can help me if I dont help myself first. My journey sounds pretty similar to yours. I got told in January 2020 that the was no signs of the disease remaining and after much messing about and sending me for more scans they told me that only the tumour had gone and the rest remained. I just couldn't believe it. I have stress fractures on my hips and pelvis caused by the radiotherapy and I am in constant pain from that and then now the nephrostomy on top. I have very supportive friends, family and partner and my GP has actually been amazing throughout the last 18 months. I think I just needed to know that I wasn't just being a wimp feeling a bit knocked off balance with this latest issue. I will get there just a bit slower than usual this time.

Thanks so much for sharing with me it has really helped me feel not to be alone in this.

Sending all my best wishes and luck your way!

Hails x x x