"Cryoablation versus open surgery"

About: Bassetlaw Hospital / Urology Freeman Hospital / General surgery St James's University Hospital / Urology

(as the patient),

I’m pleased to be able to share with you my experience of, as a patient, the difference and effects on the body and the person between conventional surgery and cryotherapy and how I’ve benefited from cryoablation.

My past medical history is quite complicated and to give you a good understanding of the differences I need to take you back to the beginning – back to 1996 when my particular problems began. So this is my story:

I was 48 years old. Returning from holiday I thought I’d picked up a urine infection, but it turned out to be more serious than that. I was referred to our cottage hospital in Bassetlaw and diagnosed with a left kidney tumour. Treatment was by removal of the kidney, no other choice of treatment was offered.

After a week in hospital I was discharged home to convalesce with the help of my family. I was dependent upon them for my every need; my walk was little more than a shuffle, I had a 180mm left sided scar, and I was very guarded of my absent kidney area.

After 3 months I returned to work, but it was more like 6 months before I felt I was recovering and 2 years before I felt healed. However, you can manage quite well with just one kidney.

I was very well until the Christmas of 2006 when I had difficulty shaking off a cold & chest infection – which was unusual for me. GP blood tests came back grossly deranged. I was referred back to Bassetlaw and diagnosed with a pancreatic tumour in early 2007.

During the course of the year I became gravely ill, I was losing weight, day blurred into night and night into day & I felt like a zombie. It became clear that Bassetlaw could not help me.

Thanks to the intervention of my family and the introduction of Patient’s Choice, I was referred to the Freeman’s Hospital in Newcastle. By this time the tumour had engulfed both the head and the tail of the pancreas, and I underwent a total pancreatectomy, splenectomy and partial gastrectomy. It was a huge operation and took about 9 hours.

I became an insulin dependent diabetic literally overnight. I was in intensive care for a week and spent 5 weeks in hospital. I had tubes up my nose, a catheter down below, cannulas in each arm, and a thick tube from an excision in my abdomen accommodating a leak – which flowed relentlessly for weeks - from a lymph node which had accidentally been cut during the operation. My body was bloated to twice its size with phlebitis caused by the trauma of the surgery, and I had a huge painful scar from one side of my body to the other. I refer to this period as Total Body Shock.

From that day to this I feel kind of “weird”, I have numerous painful adhesions, and I experience unpredictable hypos, as having had a total pancreatectomy means I have no glucagon on board and so my BG’s can drop suddenly without warning. Because of this I need constant surveillance and this puts an enormous responsibility and strain on my partner. My hypos are difficult to manage as my brain “shuts down” and I can’t understand English, it may as well be gobbledygook, and so I am unresponsive and unco-operative.

However, I am not complaining, I am more than grateful – this was a life-saving/life-changing operation.

My follow-up care was shared between Newcastle and Sheffield. During routine scanning in Sheffield in 2011 a tumour was developing on my right kidney. This time the following options of treatment were offered:

1) Partial nephrectomy.

2) Total nephrectomy.

3) Do nothing/leave alone.

The future looked grim and we were devastated. We went home to consider the options.

To do nothing & leave alone was out of the question, life is worth fighting for. I knew partial nephrectomies often end in total nephrectomies and dialysis was a strong possibility. Total nephrectomy meant dialysis was a certainty. Not good options for someone like me without a spleen and a compromised immunity and the risk of infection.

Returning to hospital we asked is there nothing else? Surprisingly, the reply from my Consultant was “well, there are some clever people in Leeds with some new ideas” and we were offered a referral to St James to see if I would be a suitable candidate for treatment. We leapt at the chance.

We came to see Dr Wah at St James’, Leeds, and after studying the scans she confirmed treatment with cryoablation would be possible and this gave us new hope.

In December 2011 I was treated successfully with cryoablation to my Right kidney and miraculously returned home after just a couple of days in hospital. There was no nasty scar to see. I was independent and felt well. After a week of being sensible and taking it steady along with a few pain killers, I was up and about and felt practically back to my normal self. It was unbelievable. Should conventional open surgery had been attempted, the outcome may well have been very different.

An advantage with cryoablation is that if necessary it can be repeated. This has proved fortunate for me as another tumour was developing on my existing kidney, this time it was very close to the ureter and in a position which could prove both difficult and challenging to treat. This was explained to me and Dr Wah also discussed the complications with her colleague, Dr Breen in Southampton – himself a pioneer of this treatment in the UK. I am very pleased to tell you that Dr Breen offered to assist Dr Wah and in January 2013 after a difficult, long procedure my treatment was successful with cryoablation. For the following 3 months I had a stent in situ in the ureter and this was also successfully removed. Because of the difficulty my recovery took a little longer but despite the challenges my recovery was comparatively very quick and uneventful and thankfully I had been saved from dialysis.

I am convinced that, this time, conventional surgery would not have saved my kidney. I am still fighting to keep my remaining kidney which continues to serve me well – my latest creatinine level 2 weeks ago was within range at 83.

I have had further successful cryoablation earlier this year under the care of Dr Wah. Each time I have been treated by this method I have made a speedy recovery and feel well and strong, unlike open surgery where weakness is overwhelming, recovery is slow and you are both mentally and physically exhausted and anxiety for families is high – after all, they become an extension of the patient.

I think it is remarkable that someone like me, with a compromised immunity and all my other complications can recover so quickly. To sum up some of the benefits of cryoablation:

There is no “body-shock”, cryoablation is kind to the body.

There is no nasty scar or adhesions.

Recovery is speedy and uneventful.

Mobilization and independence is practically immediate.

Infection risk is greatly reduced.

The treatment is cost effective.

The stay in hospital is minimal.

Upon discharge, District Nurses are not required.

Both patient and family anxieties are greatly reduced.

Cryoablation has been the best management of my problems, and this treatment has preserved my kidney, allowing it to function and serve me well, far better than any dialysis machine could and has thus kept dialysis at bay, and costs down.

It’s enabled me to be around for the births of our 4 beautiful grandchildren (the eldest being 4 years old) and to join in their fun and games, and we all enjoy the sleepovers. Just everyday family life which would not be the same on dialysis.

It has given me back my life – but more than that, it has given me quality of life, for which, on behalf of my family and myself, I offer my heartfelt thanks to each and every one who has been involved in my care. Thank you sincerely.

Do you have a similar story to tell? Tell your story & make a difference ››

Responses

Response from The Newcastle upon Tyne Hospitals NHS Foundation Trust

Thank you for taking the time to write about your experience on Patient Opinion. We are glad to hear that you have responded well to treatment and wish you well for the future.

Update posted by Susie Lee (the patient)

I owe my life to The Freeman Hospital, Newcastle, and cannot thank everyone who has been involved my care then and since. I hope others find my story helpful. Thank you for your. Good wishes, I am pleased to receive them.

Response from Gill Pickersgill, Communications & Engagement Officer, Doncaster and Bassetlaw Hospitals NHS Foundation Trust

Hi Susie - Thank you for sharing your story with us and I am sure other patients in similar circumstances will find your story beneficial. Lovely to hear your feeling so much better and obviously enjoying spending time with your four grandchildren!

With best wishes

Gill

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Response from Leeds Teaching Hospitals

Dear Susie Lee,

Thank you for taking the time out to post about your experiences and views.

You have made some very valid and informative points all of which I think will give patients a further understanding of this procedure from a patients point of view.

I would like you to know how uplifting and gratifying it was to read your words of support and encouragement regarding your care at St James Hospital and it would be my pleasure to pass these onto Dr Wah and all other relevant staff members who I am sure will be exceptionally pleased with the feedback you have given regarding your care.

I hope that you continue to live your happy and healthy life and enjoy more of your grandchildren’s company.

With Kind regards

Rosie

Senior Nurse

Patient Experience

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