New Member

Hi MHaw 

It's natural to be apprehensive about starting treatment but hopefully it'll go well for you.

I'm not a member of this forum but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again. I'm sure forum members who've had immunotherapy will be along soon to share their experiences with you.

While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. 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.

Hi there, I’m new here. I’m having my right kidney removed next month and feeling ok ish about it so far but I’m sure the nerves will creep in nearer the date. 
I hope the rest of your treatment goes well and you’re recovering well after surgery xx

Hello, today's treatment went well and the nursing staff really looked after me. My recovery is also going well. It's been just over 2 months since my operation and I've been back at work nearly a month now. I had my left kidney removed via keyhole and was only in hospital overnight. Each day gets better and you will feel stronger but just take each day as it comes and don't put any pressure on yourself. I got myself one of those V shaped pillows that helped me get comfortable and when you cough or sneeze just hold a pillow or cushion on your tummy for support. This only lasts a few days but I found this helped me. You'll find you will need to sleep on your back for a little while but having pillows to support you really helps. Bit by bit I was able to sleep on both sides but I used a pillow just to the side for comfort. I even do it now as I found it's so comfortable.  For pain relief I was just prescribed paracetamol and codeine. These did help me but after time felt I was taking them less frequent.

You will be in the best place and will be well looked after. 

Good luck but if you do have any questions don't hesitate to contact me.

Take care

• Thank you for your post. How big was your tumour and was it contained within the kidney? You mentioned ‘today’s treatment’, what treatment are you having? Sorry for the questions. 
  Great tips re pillows and sleeping, thank you. I’m going to take up to 2 months off work to recover as don’t want to pull any stitches. 

Sorry, one last question. My consultant said I’d probably feel good after 2 weeks after the op. How tired were you after the op and when did you start to get your energy levels back? Thank you

Hi , hope you're ok.  Im 43, was also diagnosed in April this year. My tumour was 8cm, left kidney. 
Id say definitely try and sleep when you can, the tiredness takes over your body so try to listen to it! I made the mistake of not doing that really, I had my op on the 21st June. I return to work on 21/8.  I'd say I've only slept in the afternoons 5 times, albeit for an hour .. wish I'd slept more as it's good for recovery! Although I'm recovering well, I do feel tired by the afternoon. 
Hold your tummy muscles and tummy with a pillow on coughing, sneezing etc. 

Going to the toilet (everyone thinks is a taboo subject) but I struggled. Opened my bowels 4 days post op, took laxido to help me. Hold tummy when going for your no2!! I did this for the first 3 weeks or so, after that it felt a little more comfortable! 

I struggled sitting on my sofa for weeks as pulled on tummy sutures and the kidney retrieval site and internally (so I'd sit on a dining chair with pillows behind my back) felt as if my insides were being pulled apart! I think we have internal sutures too, so the oncology nurse told me, so you feel very odd!!  I needed help from my husband ALOT for the month! Hated it but needs must! 

I'd say go in with a positive mindset. I worked from my diagnosis in April  to the day before my op! Needed to keep busy!  Take all the help/support you need from family. You'll need it. 

I'm 7 weeks post op and feel 80% better, don't get me wrong, by the end of my day my tummy pulls, swells slightly on my side as still healing daily!  I have a flank bulge  and sunken retrieval site.. this causes some discomfort later in my day.

Remember, we can all tell you how we have felt BUT everyone's journey is different.. some people heal faster, some don't, some have no pain at all after procedure, some develop pain later on! We are all different. 

Take your time.. take care YOU will be ok xx 

x 

Hi there, thank you for the info and yes everyone is different. 
I’ll definitely take the time to snooze/sleep as I know if always makes me feel better, more energised. 
Good advice re number 2’s….. I use senokot when have constipation so I’ll make sure I have packets of that! I’ll buy one of those v shaped pillows too to prop me up and mould around my side/tummy. 
I too will be working until a few days before the op to keep my mind busy. 
My husband will be looking after me too plus my 2 teenagers so that’ll be interesting after the initial time wears off and how attentive they’ll be ;-) 

Wow, you’re young to have been diagnosed. How was it discovered? Mine was after an ultra sound for discomfort in my abdomen. So glad I had that done! When visiting the kidney department I was the youngest there as others were mostly men in their 60’s/70’s. 

Haha yes once the initial time wears off they'll be bored! :-) 

My husband was great support too. They are great use sometimes;-)

How old are you? mine was an incidental finding too, if had a bit of abdominal discomfort for 6 month's however because im peri menopausal I put it down to that, which I think some symptoms you get with peri are same ( bloat, tired, feeling generally off) however my gp says let's do some routine bloods and an abdominal scan and there he was... I named him Harry!!  Good job she requested a scan as otherwise I'll never have known!! X 

Hi there, sorry for the delayed response.  Was working this morning so first time I have had to catch up. 

My tumour was 9cm in size.  Luckily just within the kidney and not spread anywhere else.  The surgery was successful and when I went for my follow up appointment I was told it was at stage 3.  They gave me two options.  I could have some treatment called Immunotherapy, with ct scans every 3 months - or have no treatment and just the scans.  I felt that because of the cancer being stage 3 and was told there was a 50/50 chance of reoccurrence, that the treatment would help.  The treatment is found to decrease the chances of reoccurrence further to 16%.  So for me it felt this was the best way forward.  I started treatment yesterday and this will be every 6 weeks for a year (so 9 treatments in total).  I will also have CT scans every 3 months for a year and then 6 monthly for two years and then it goes to annually.  I had a CT scan a couple of weeks ago and that showed that all is good, so was able to crack  on with the treatment.  

I'm 55 and it all started with blood in my urine.  This started last year but was given antibiotics by my GP for an infection.  The same thing occurred in Feb this year so went back to my GP and they referred me to a consultant who them referred me for a CT scan and a cytoscopy.  My bladder was clear but CT scan showed the tumour on my left kidney.  I was diagnosed in April and had the operation end of May.  I took 7 weeks off work in the end and felt that was about right for me.  I do get tired but you must listen to your body and rest as this is part of your recovery.  I am back doing some exercises, although still being careful.  Walking is good and does help as well.  

Take care

How are you feeling after your treatment? X