Stage III Renal Cell Cancer (RCC - Carcinoma) - Aged 31 My Story.

Hello and thank you for reading

My name is Stewart, I'm aged 31

I will try and keep the details of my story to a minimum but I feel it's important to share it so thank you in advance for listening / reading.
About Nine weeks ago I went to my GP complaining about a back ache, I'm the type of person that can tell when something is not quite right, but know that it isn't the ordinary. My Dr screened my urine and found traces of blood, she indicated that she thought it was a urine infection (the urine never got sent to the hospital), I was sent away with 14 days of antibiotics. Knowing that the diagnosis was incorrect I followed her instructions with gritted teeth and ended up back at the Doctors 14 days later with the same symptoms. At first it started with an extremely high fever, I was bed ridden for three days, it was so bad that I could barely walk or see straight. With this I had a dull aching pain in my lower back, my urine smelt of plastic and my ankles and feet always felt like they were constantly swollen (not sure if this was related but it could be water retention?).
During the previous ten weeks It's important to note that I had lost 2 stone in weight. 
My Urine was then sent to my local hospital for screening and further examination (it came back saying the same - blood in urine) and I was booked in to have a CT scan to further look into a correct diagnosis. ( I didn't see my original Doctor and there was quite a disagreement with the second doctor I saw).
My letter from the hospital never came - three weeks went by so I asked my friend to drive me there so I could speak to someone at the radiology department. This was a Friday afternoon, it was a nice day and the sun was starting to heat up (unlike today's temperature). I spoke to a lady who told me that my appointment was that coming Monday, I started to think how lucky I was to come here and ask questions.
Later that day I went to work ( I work in a local pub in the old town where I live ), it was a great evening I had met some lovely people and was chatting away. I had drunk about 5 pints or water ( i don't drink alcohol) by 11pm my feet were killing my, I could barely stand, which was so unusual for me. By the end of my shift and everything had been cleaned up I desperately needed to go to the toilet, I had to turn the lights back on. Whilst standing there I looked down and blood piled out of my penis, it was the most horrendous sight, I instantly went into shock mode and didn't know what to do. I came out of the toilet and told my friend what had happened, he said "go to the hospital straight away ". At this point I now knew that my diagnosis was incorrect (I'd had a urine infection in the past). I went home and fell asleep at about 2.30am, at 4.30am I woke up in a lot of pain in my back. I called a taxi and went to A & E. Luckily there was no-one there and I went straight through to see a nurse, by this point I was on the hospital bed wriggling around in unbearable pain ( I kept thinking kidney stones, chronic kidney disease, what can it be??). I was given a cannula and some morphin, it didn't work. The pain was too much I kept crying in agony, I was given a diclofenic as a suppository, 10 minutes had gone by with some gas and air and I felt a million times better. The nurses were fantastic, doing a great job to keep me calm.
Later that  day I had my scan, this was about 1pm. I had been sitting in the A&E ward waiting for my turn.
The results came back - 2 hours later.
In that instant when the Dr says "can we have a chat - Follow me". Your stomach sinks, you know that something is about to happen with a consequence, you just have no Idea what. Frightened, shaking,  there I was facing this young Dr telling me that "we have found a large mass" - "We are not sure what it is but it is on your right Kidney".
My world sunk In that moment I could not hold it together, I couldn't even think of a question. Because I didn't know what question to ask. I was told that I needed to be driven to another hospital because there was no urology department at my local. 2 hours later and a very dodgy Ambulance ride I had made my way to Eastbourne District General Hospital.
Could barely stand because of the opium I was glad that I made it to a bed so I could lay, as I got closer, I plummeted into the chair next to the bed and just cried. I was still in shock, the bed  seemed to be a long distant memory already, although I had only just thought about it. The thoughts going through my head were indescribable, they were so quick I couldn't keep up.
My friend had arrived with some personal belongings. I had calmed down and was given some medication to ease the pain.
I phoned my family and some friends to inform them of what had happened.
I stayed for three days in Eastbourne DGH, where I was treated so well. The most fantastic nurses and Dr's delivered a first class service. During this time I was told that it was cancer, I would have to lose my right kidney and the tumor would need to come out, my lymph (nodes) glands were swollen too so they would need to be removed because it looks like it had spread.
All I kept thinking is get it out - get it out - get it out. Will someone GET IT OUT.
The day I was due to leave I saw a specialist nurse, the most inspirational person of all. Tessa Rodgers.
I owe her a lot, she was there for me and explained everything in such a special and unique way.
My initial thoughts were how will they get it out? During that weekend I was told that my tumor was very large 13cms wide by 10cms in depth. This was extremely rare in my age and that I would be treated more urgently because of the size of the tumor and the rareness of it because of my age. Initially I was told six weeks for an operation but Tessa had managed to get it down to two weeks and one day.
I stayed at home for two weeks taking pain killers and trying to manage the pain as best I could.
That time could not have gone quick enough and before I knew I was back at the hospital (with a complication or two in between) ready for my Surgery.
Tuesday 8th July 2013 and 1pm I heard a nurse say "Stewart - get your gown on, we're ready". I felt a weight go from my shoulders, but knew a whole knew one was coming my way.
I was taken down to theater, prepped by the most wonderful people  - the anesthetist ( i cant remember her name) was just amazing. I had spoken to her in the morning and she was just great. Really made me feel at ease. During that morning I saw my consultant, Mr Garnett, a genius, a marvelous human being that has been gifted with unique hands that work magic. He had told me that it was unlikely to be laproscopic (key hole surgery) due to the size of the tumor, I had signed a consent form to say that open surgery could go ahead.
I know this will sound silly but the position I was in I hoped for anything - I really didn't want to be cut open.
In recovery I woke up and saw the clock it said 18.30 - had the operation gone on longer than the expected 4 hours or had something go wrong? I woke up saying "Has the operation happened yet?" I was so out of it I didn't know where I was or where I was going. From then on I don't recall what happened until I woke up again at about 20.30.
My mum was too upset at this point she had left the hospital - I told her that I wanted her to be strong for me and that being too emotional would not help my situation.
I stayed in recovery for 16 hours before put into Intensive care, apparently I was showing signs of ackie cardi (not show of the pronounce for this). My heart kept showing irrational movements and I was kept a close eye on for a day and half before moving to my ward for another 4 days.

During that time I realised that the only thing that was going to get me better was me. Eat right foods, try to exercise where I could - get up of the bed, walk, smile, feel good.

The first time I saw my scar was the most upsetting for me, 13 Inches across my stomach, I'm still in recovery and trying hard to get back on my feet as quickly as I can.
  • Today (06th Aug 2014)

    I got my results from the tumor, much earlier than expected.

    SUPER NEWS. although it was Cancer and had spread to 1 of the 8 lymph Nodes removed - I don't have to have Chemotherapy.

    Because the tumor was so large it grew in a different shape and form and although it has been given it's name as Carcinoma there was a further development.

    There were some cancer cells that were not recongnisible and the tumor has been sent to Dundee (Scotland) for further examination to a Kidney Clinic.

    It's great that I've been able to share my story, if you have any questions especially if your unsure about the surgery or what to expect. Please feel free to leave me a note. I still have a long way to go as the consultant wants me to have regular check ups.

    He was baffled about the cells that were not identified and intrigued to find out more (same as me really)

    Thanks

    Stew - getting there SU2C

  • Hello Stew,

    We loved reading every sentence of your story - I found it really absorbing! Thank you for sharing it and for standing up to cancer. You went through so much so young and we are glad to hear your great news that you don't need to have chemotherapy.

    I am sure others who are dealing with a similar diagnosis at the moment will be happy to read your message  and discuss the operation with you. It is very nice of you to offer to help with any questions others may have about the surgery or what to expect after diagnosis. We love your Stand Up to Cancer profile picture!

    Best wishes for a full and speedy recovery from the Cancer Chat team,

    Lucie, Cancer Chat Moderator

  • Hello again Stew,

    We just wanted to say that we have been talking to our Patient  Liaison team about your story and they were interested to know  if you would be able to fill out their Share Your Story form  ¿ they  can get opportunities to help raise awareness in different ways and,  although it can be difficult to predict what might come up and what  might be suitable, it would be great to know if  you were happy to be involved in this way. No worries at all if not,  but the form is here.

    Best wishes,

    Lucie, Cancer Chat Moderator

  • Hi Lucie,

    Thank you very much for your kind words, yes my consultant dealt with renal cancers in the young and said that my situation was extremely rare. I'm going to work hard over the next year to raise awareness in young men and women about renal cancer. Even now I'm still learning about different stages of Renal Cancer? what to expect before and after an operation? How to cope with Cancer? Friends / Family? You name it it's all a learning curve.

    Luckily I'm young and fit but I know this isn't the case for everyone and it would be my pleasure to help you where I can

    Of course I have a further scan in October and I will see my consultnat later that month to discuss the findings from Dundee - but because it won't change the outcome (as of current) he won't be contacting me to discuss the findings any sooner. I could always ring his secetary if I needed too.

    I hope you're well and thank you for kind words once again.

    Regards

    Stew

  • Hi again,

    tried the link - but it took me to an outlook app and asked me for log-on details.

    Happy to help if I can view the form

    Thanks Lucie

    All the best

    Stew

  • Hello Stew,

    I have now fixed the link above - sorry about that I am not sure what happened! It would be great if you could fill the form.

    By the way, someone else posted yesterday who was also diagnosed with kidney cancer. You can find puppydog's post here - I took the liberty to mention your thread but feel free to post on puppydog's thread too if you wish. I thought it might be good for you both to talk and share your experience of kidney cancer.

    Thank you for your help and for sharing your story!

    Lucie

  • Ta Lucie - I'll have a look at that in the morning.

    Good night and thank you

    Stew

  • Here is a summary of a letter I got today from my meeting with the consultant.

    DEPARTMENT OF UROLOGY            
    Clinic Date: 6.8.14
    Kidney Clinic
    Diagnosis: Grade III pT2b N1 likely renal cell carcinoma- awaiting expert second opinion from
    Dundee
    Plan: Early follow up CT at 3 months and review in kidney clinic
    Stewart back in Eastbourne today, 4 weeks after his open radical right nephrectomy for a large renal tumour. He seems to be recovering very well. I understand he had a small possible wound infection, although there was no sign of infection today. There is a small area of slight over-granulation tissue, which is not healing up, and I treated this with silver nitrate today. He is well in himself and getting back towards more activities. He is still feeling a little tired which is to be expected. Overall, I think he is recovering well.
    We discussed his histology which as expected has shown a large renal cancer. Adrenal glands showed no tumour and there were 8 lymph nodes removed. Of these 8 nodes, one has shown some evidence of cancer cells within it. To be honest, this is better than I expected as he did have very large lymphaaenopathy~and the fact that almost these were reactive. He- had a-large, 12cm tumor and has been fully removed with no invasion through the capsule of the kidney. The tumour has been sent off to Dundee for a second opinion as there are some slightly unusual features. I have explained to Stewart today that this is a high grade tumour and with a positive lymph node he does need a close follow up. To this end, I am arranging a follow up CT scan in 3 months time. I will see him back in the clinic after this. I have emphasised that all tumour seen has been removed and that he does not need any adjuvant treatment.
    Yours sincerely
    Consultant Urological Surgeon
  • I am the partner of someone who at 49, yesterday has just been told that whilst they will and recommend removing his large kidney cancer so he can eat again, the 6 lymph node tumours, small lung abnormality and tiny pin head of suspicion in his hip bone, mean this is incurable and they hope that he will live for a further year to two years with good pain management. Very confused at the moment as we thought that the removal of the kidney plus immunotherapy therapy treatment COULD cure this 

  • Wow dude... my experience is so similar. Loved every word you said. Except my postcode was G2pTa TCC basically bladder cancer in my kidney 

    My experience with surgery and recovery was very well. But the vagueness from the doctors is so stressful last year I went to pals just to finally get answers. No one told me anything till my cystoscopy 4 weeks after ct scan. One year later and I go in for a checkup was told to get antibiotics because I have an infection.... that was 6 weeks ago. 4 weeks ago I had a ct scan. Then that day they sent me out a letter asking me to go in for another ct scan? For this Friday.... guessing that’s a mistake. It all   feels like a repeat of last year not a call or letter. And stressing.... but I can take it! If this was my mother or relative and they get just the same treatment... I’d go absolutely crazy!! 

    Sorry my English is soooo bad

    wish you luck buddy