Kidney

Hi I only waited two weeks. It was flagged up as urgent. Have you been allocated a Macmillan nurse? They are very good at chasing up appointments.

Hi ,

If there have been two MDT meetings it sounds like they have had alternative medical options to consider.  I think that at times consultants get engrossed in the medical issue and forget that there is a person at the other end of their discussions.  They are much better than they used to be thanks to things like the "My name is … " campaign but they revert to type at times.

Do not be reluctant to phone up and ask them when you will be seen next, if you can't get an answer immediately don't be afraid to make a nuisance of yourself.  Sometimes it is simply that the admin services in a large organisation take a long time.  Appointment letters can take a week to be typed and dispatched and they like to give you plenty of notice so that you can do things like cancel any other appointments you might have that clash or arrange childcare.  If you talk to them on the phone you can often get an appointment sorted much quicker as you can advise them if you are available.

Wishing you all the best,

Gragon xx

Hi Gragon.  You are absolutely correct in encouraging her to chase things along.  From the moment I presented myself to my GP, it took just under 2 weeks for me to be seen at a 1 stop urology clinic at the Royal Gwent Hospital in Newport, South Wales. At that appointment I had ultrasound scan, CT scan & a camera into my bladder all on the same day.  Following an MDT meeting eight days later, I was called in to the clinic that very afternoon.  I had the surgery, (open radical nephrectomy), 4 weeks later.  I was told that policy for kidney cancer in my health board was not to put you on a list, but to enter you in the surgical diary straight away.  I was given the appointment for my op there & then.  After care has been amazing & still is.  I am on 1 scan a year at the moment, (2 last year), and have bloods every 6 months for life & BP every 3 months for life.  I have had 4 surgeries over the past 4 years, but the nephrectomy was the only one required due to cancer.  I have to say I've always had the best care & service, but yes & have had to chase them for surgical appointments.  More power to you sir, your comments are encouraging as always.

Thank you Gragon

i have rang today and they staying that they can give me a appointment for two weeks time to see the oncologist as she is in holiday next week .It seems that I have had to phone or chase for appointments all the time . Each consultant that I have had to see has been in holiday every time that is three consultants have been in leave .Its the wait that is now getting to me .As I’m thinking is this can we spreading even further as I’m in pain also now .

Hi ,

Well done you for ringing and chasing the hospital up.  I'm afraid that holidays are just one of the perils of medical treatment.  I must confess that as someone who leaves planning for holidays to the last minute myself I have some sympathy but it is frustrating.  The doctors do not manage their own appointment lists so appointments are often made for every week of the year.  They then book holidays and admin have to rearrange appointments.  If you are already on treatment you would often be scheduled to see their registrar but if you have not yet seen the consultant they often try to reschedule.  Hopefully now that you have an appointment you can progress.

Not knowing what is going on with your own body and what treatment might be is bound to make you anxious.  It is a really good idea to write any questions that you have in a note book and take it with you when you go to your appointment.  Take a pen and you can write down the answers as you get them as if you are like me you think you understand and then walk out of your appointment and start wondering if you remember correctly what was said.  One of the things they should tell you is when you can expect your intervention / treatment to commence.  You should be given phone numbers of people who you can contact with questions after this appointment, make sure that you are given these before you leave.  The nurses are particularly useful as they tend to put things in a way that is often less technical.

Your treatment can vary depending upon what type of kidney cancer you have so at this stage it is difficult to suggest what your treatment might be.  Surgery is usually the preferred treatment but once the cancer has moved out of the kidney then it is not possible to remove it all surgically so sometimes the kidney is left in place and they determine what type of cancer it is by other means, often a biopsy.  They can then decide which treatment option is best.  This might be why they had two MDT meetings

I had surgery but it was delayed as I had another medical condition to take into account and the MDT was used to determine how best to manage that, this is another reason why they might have a second MDT meeting.

It is difficult enough when you are seen promptly but when this has been delayed like you have it is bound to make you even more anxious and tearful.  You might want to see your GP whilst you are waiting to see the oncologist and they might be able to offer counselling or prescribe anti anxiety medication depending upon your preferences.  Counselling could take a while to organise so I can't recommend the Macmillan helpline strongly enough if that is the case.  They are very understanding and are a great emotional support and if you need it they can offer great practical advice as well.

It is very scary but do not think that the situation is hopeless.  I have been on my treatment for over four years and expect to be about for many more yet.  If you read the profiles of a few others you will see that many of them have been on treatment for many years.  To read their profiles just click on their username and you will see what others have put about themselves.

Feel free to keep on posting, we have all been where you are now and can appreciate where you are emotionally.

Take care, love and hugs,

Gragon x 

Hi Blondie2

I don't have much to add, but just to let you know that when my mets were diagnosed I was in quite considerable pain. I started treatment middle of November and had radiology booked in for 24th December (nice!). I went for my appointment and after reviewing me the radiologist advised me against having it. My pain had literally gone in the month I was on treatment. The tumour hadn't (unfortunately lol) but the pain really had - and I'd been in quite significant pain since July - but we thought it was something else.

I've not been on treatment as long as Gragon, but I'm at 2 1/2 years and totally stable and feeling great right now. And also planning for a long future.

It's very scary, especially at the start, but once you start treatment and can see it's actually doing it's job, you'll soon have much more confidence in your future.

You'll probably find once your actually in the system fully everything becomes routine and you won't need to chase for appointments. Mine literally run like clockwork now.

Lots of luck to you