Hello

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Newly diagnosed, new to the website, new to online forums...

Last Thursday I had a meeting with a consultant who told me, following MRI and CT scans that they have found a lump on my right kidney graded Bosniac 4. 

When I went in for the meeting, I had no idea I was going to here that there was 80-85% chance this would be cancer. I didn't even know I had a lump. The investigations were part of efforts to understandy high blood pressure.

It has been recommended that I have a partial nephrectomy at Arrowe Park on The Wirral. At the time of being told this, I think my brain went into sort of fogged state (shock) and my questions were pretty rubbish. 

I'm not sure what I am typing here really but it feels like the right thing to do.

I was asked at the end of the consultation whether I wanted to 'sign up' for the partial nephrectomy or have the full kidney removed. I said I wasn't in a position to make that call a that moment in time and needed to process this news. The few people I have told have asked me lots of questions that I cannot answer. 

On Friday, I called the nurse whose details I had been given to say 'yes' to the partial procedure and ask questions but she is on leave until Wednesday. I know this might not even be a migrant presence but the whole thing is pretty terrifying.

I feel the greatest urge to be optimistic around others so they don't worry but in reality I am scared.

Ahead of calling the nurse of Wednesday, what should I making sure I have clarity about? 

Having read some of the blogs and posts on here, I already feel supported.

Thanks in anticipation of people's time.

MW

  • Hi MW

    My "story" as follows.  

    Diagnosed through a routine set of tests so really shocked - once I came to terms with the diagnosis I simply thought that I had to "trust the process" and put myself in the hands of the specialists. After all, they are doing these operations every week, day in day out.

    I opted for the partial route for the reasons of the extent of the growth (c8cm) and the fact that I would still have both kidneys! Although slightly reduced "performance".  The radical/full route is a "cleaner"  operation in terms of surgery and the complexity I gather.

    The operation took place last October; c4-5 hours, team of 9 at Charing Cross. You will feel very groggy straight after the operation - part general anaesthetic effect and what you've had done to you.

    I was continually monitored for the immediate days after the op including being woken several times during the night for bloods etc.

    You will probably be looking at c6 weeks before you feel relatively normal - just follow their advice really, eat well, as little salt as possible, plenty of water, rest etc.

    Fast forward to now and I feel very good - I'm halfway through a year long course of Pembrolizumab; it stimulates the body's immune system.to fight cancer cells. Very distinct from radio or chemo. I have that every 6 weeks and it takes 30 minutes each time; minor side effects to that. Still get muscular type twinges in the area but that's to be expected.

    If you need anything else - however specific - just ask!

  • Thanks for the reply. It is all very helpful. I'm glad to hear that you feel good SunnyProjectorPoop

    'trust the process' is a particularly usefu reminder. 

    I have read that a catheter will need to be installed. If this was the case for you, how long was it needed?

    Did you have to wait long 

  • Thanks, Michael1793.

    This is very useful and I am glad to read you are feeling good now. Bring reminded to 'trust the process' is really helpful.

    I have read that a catheter is used after the surgery, if this was the case with you, how long was this in place for? How long before normal bodily functions were resumed?

    Also, was 6 weeks the length of time you were off work - this probably shouldn't be a consideration but it is on my mind. I'm thinking about my colleagues who don't know any of this yet.

    I'm guessing that post-surgery tests revealed that the tumour was malignant hence the on-going drugs. Do you also get screened to check nothing sinister is anywhere else? (If any of this is too personal, just ignore). 

    From your diagnosis, how long did you have to wait until the surgery? Was your surgery completed by the NHS or privately? Having asked how long, I imagine waiting times are varied across the country but an idea would be helpful.

    Prior to the procedure, did you make any lifestyle? Due to high blood pressure, I have already cut down salt, no caffeine and I'm only allowed to fast-walk not run (which I used to do and miss). 

    Again, thanks and I hope you continue to be well. 

    MW

  • MW

     

    Catheter – yes, sorry, forgot to say that I had one of those. A weird sensation but you do get used to it. I had that for the 4 days I was in from directly after the op to when I left. You then go back to “normal”.

     

    Work – I left work in July and have been between jobs – just taking an extended break really. I could have worked remotely I guess after 3 – 4 weeks I guess.

     

    Ongoing checks – yes, regular blood tests, and an MRI after 3 months then every 6 months. That would pick up an local problems.

     

    Diagnosis until surgery – I had to wait2 – 3 weeks. But every area is different although this sort of surgery does seem to get prioritised.

     

    Prior to surgery – yes, I did exercise more to get as fit as possible. I think it worked. No real changes to diet; I have had a good diet for several years and drink very little. I was “out out” walking again within 3 weeks or so. Kept moving around the house clearly.

     

    Travel/insurance - if you have anything booked/planned, do remember to tell your insurers! i come from an insurance background and know the importance of pre-existing conditions.

    Anything else – do let me know!

  • Thanks, again.

    I am hoping to go to Spain in the summer so will bear in mind the insurance factor.

    You are helping to complete some of the jigsaw and I should get to speak to a nurse on Wednesday (she is on leave) and pose some of the technical questions about my lump. 

    My head is definitely not at its clearest so any more questions, I will ask.

    Thanks for the honesty and replies. Knowing you aren't the only one to have gone through/go through this, is reassurance in itself.

    MW

  • Hello. My usual reaction is to ask the doctor what they recommend and why. I wasn’t given the choice and had a full nephrectomy, laparoscopic. I was out of hospital in two days and then recovering at home. Even though I now have only one kidney, it doesn’t seem to make much difference! Of course, they keep a careful check on how that kidney is functioning (annual blood tests) and I know that my doctor considers it when prescribing medicines. 

    I think your private worries and fears are perfectly natural. I write down my questions, by the way, otherwise I tend to forget in the flow of conversation! 

    Best wishes. 

  • Hi there. I am having a partial nephrectomy in mid to late May. My pre op is next Wednesday 8th May.I have been given a urology nurse who I can contact when I need to. My op will be done laparoscopically and robotically. I have chosen to have surgery as my kidney mass is quite small. I have a mass on the other kidney which they will ignore for now, I also have bone foci which are being investigated.
    I feel very anxious about the forthcoming operation. I have found it very helpful to read other people’s operations on here. It seems that everybody’s recovery is different. I have been told two to three days in hospital. I hope all goes well for you.

  • Thank you, Study to Be Quiet.

    I am hoping to learn more about time scales on Wednesday and am collating my questions in readiness.

    I appreciate you getting back to me.

    MW

  • Thanks, EJ7861

    I wish you all the best for your surgery. 

    Best wishes

    MW

  • Thank you. We can have some sort of virtual hand holding x