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Three memorable dates!
The impact of kidney cancer on your life is very overwhelming not only physically but also emotionally. After diagnosis, you may deal with a number of issues that could be very challenging. You must remember that you are not alone and our kidney cancer care services are available to help you. Following our Patient Day Survey results we know that many of you find it very helpful to read about other people who are in a similar position. Therefore, we have introduced a guest blogger feature to our website and we are looking for people who would like to share their kidney cancer experience with others. If you want to send us your story please email Sylwia here.
Here’s the first one from our Guest Blogger series written by a kidney cancer patient.
I have been living with metastatic clear cell renal cancer for the past eight years. In October 2005 whilst showering I noticed a small lump on my right side, just down from the armpit. It didn’t cause me any concern as I thought it was just a cyst as did my GP when I went to see him about it. However, in February 2006 I felt that whilst it hadn’t increased dimensionally it did feel more prominent and so I went back to my GP. Again he thought it was only a cyst but said he would refer me to get it looked at by a specialist.
I received an appointment to attend the day surgery clinic at my local hospital for June 2006. The surgeon said he was going to excise the lump and duly anaesthetised the area locally. After a short while of cutting and pulling and poking he said he “didn’t like the look of this”; it was deeper than he had expected and had anaesthetised for, so the last few moments of the operation were reminiscent of life on board one of Nelson’s warships with the grunts and groans and no rum or a bit of rope to bite on. The wound took a long time to stop bleeding and I had to stay in the hospital for a couple of hours until he was satisfied that it had stopped.
Within the week I had been recalled to the hospital where the consultant said that the histology report showed evidence of clear cell kidney cancer. The lump was a secondary cancer, probably a lymph node and was the first evidence of anything being wrong. He said he had made an appointment for me to see the Consultant Urologist.
During the first week of July 2006 I had a CT scan and a couple of weeks later saw the Consultant Urologist who confirmed that I had a small tumour on my right kidney with what looked like pockets of cells in my liver, abdomen and chest. He said that it appeared to be a slow growing cancer and the fact that I was not displaying any other symptoms, was fit and otherwise healthy were all factors in my favour. He said he would discuss my case with the Consultant Oncologist the following week and I would also get to meet him then too. I then spoke with the specialist nurse and it seemed that I was facing the removal of the right kidney and then immunotherapy treatment afterwards.
Having received this diagnosis there were no paroxysms of despair and despondency or even caterwauling of “why me”? I guess I have always been a pragmatic person and so realised that those were the cards I had been dealt and so the only thing was to play them. I would be lying if I said that our spirits were not a little low at first, especially as we had to tell all the various members of our family both close and extended. So I decided to “KEEP CALM AND CARRY ON”; for as much as it was in my hands I would just continue my life as normal.
At this time I was employed with bmi (British Midland) as a Licensed Aircraft Engineer. I was also one of four Shift Leaders looking after the engineering operation so I had a very responsible job. Although for most of the time it was just mundane work there were times when it got a bit hectic and heavy. Hectic is when the plane is full of passengers and one is trying to diagnose a fault, rectify it safely and get the aircraft away. Heavy is when one is having to change a main landing wheel or brake unit; the wheel weighs around 300kgs and this was done in all weathers. It was a job I thoroughly enjoyed, however, I had to tell my manager that I was anticipating a major operation and so would have to take sick leave. My length of service entitled me to take one year off on sick leave (6 months paid by the company and 6 months State paid) but I was hopeful of returning to work long before that.
As promised, towards the end of July 2006 I was introduced to my Consultant Oncologist. He thought the tumour was too small (3cm) to warrant the removal of an otherwise healthy kidney and he told me of the drug trial he was running. There were only a few days to go before the trial closed and I had to decide whether to go on it or opt for the conventional treatment. The trial drug was Sunitinib, otherwise known as Sutent and was showing promising results. For me it was Hobson’s choice; have a major operation to remove a kidney and still have cancer or carry on as normal on the new drug and manage the cancer. I signed to be included on the trial.
At the beginning of August 2006 I attended the cancer clinic to start the trial. All the usual checks, bloods, weight, height, ECG, X-ray, etc were carried out and no fault found so we were clear to go. I was given 30 Sutent capsules of 50mg, the recommended dose and I had to return the two spare ones on my next visit to the clinic. The treatment is done in cycles of 28 days on the drug and 14 off it.
Within a week of starting the trial I had not experienced any side effects although there were some occurrences which I wasn’t sure if they were drug related or not. Twelve days into my first cycle and my tongue had become very sore, I was tired and very shivery and lacking in energy. The next day was the same and I retired to bed early awaking in the middle of the night drenched in sweat. The next day was a repeat however, my mouth had become very sore which made for difficult eating and I couldn’t finish my meal. I decided to have a little ice cream to hopefully sooth my mouth and I expected that once I had finished it, I would have a temporary chill. My chill developed into a shivering fit so violent I could not hold a cup of tea and my lips turned blue so I went to bed to heat myself up. With the aid of a heat pack it took a full twenty minutes before I returned to normal. When I contacted the Trials Specialist Nurses they said I should go to the hospital so they could check me out. The urine sample showed I had an infection and the blood test showed that my LFT (liver function test) reading was elevated. I was given some anti-biotics and told to take them and continue with the Sutent.
A week or so later I started getting headaches, my scalp became very tender and at times it felt as if somebody was trying to excavate their way out from inside my head. I contacted the Trials nurse who said to go to my GP to get some tests done. I also had a blood test to once again check my liver function. Later that day the Trials nurse called to say that my LFT was raised and I should stop taking the Sutent. For the next week I had to have daily blood tests to check the LFT reading which was coming down albeit very slowly. I found out from the Trials nurse that the normal LFT reading is 6-49, mine was up at 593 so I was bordering on liver failure. It took another four weeks before my bloods were at an acceptable level for me to resume treatment but at a reduced dose of 37.5mg. There are not many who can tolerate the 50mg dose and most have to have a reduction. It was thought that because I was so fit I was metabolising the drug too efficiently and so the liver was becoming toxic in the process.
As the year went on it became apparent that with the side effects there was no way I could return to work. I worked shifts rising at 03.00 and returning home at 18.00 or a night shift and that was not conducive to my treatment. There was no cosy back office for me to hide in, I would have to be a full participating member of the team. It was time to become a retiree.
For the next three and half years or 31 cycles I plodded along on 37.5mg without any further problems other than the side effects. I think I have had a majority of the listed side effects to some degree or another and some are less desirable than others. However, at 31 cycles I decided that I had had enough and was in need of a break from it all so I terminated the trial. By this time Sutent was no longer a trial drug but one that was fully approved and I was assured that I would be able to resume treatment on the NHS. A CT scan showed that the tumour was now about half the original size, the lesions in my chest and abdomen were no longer visible and the spots in my liver had never changed so were put down to fatty deposits rather than cancer.
When I resumed treatment six months later I had another scan and this showed that the tumour had grown back to its original size and the other lesions had become visible again. At the five month mark I had my left knee replaced and was still recovering from the operation when I restarted on Sutent. I was advised that I should perhaps wait a little longer but I didn’t want to give the cancer the opportunity to get a greater hold than it already had. I should have listened as I ended up with problems with the scar.
Eighteen months later I took another break from treatment for three months so that I could get my right knee replaced. This break also allowed my left scar to heal properly and not give me any more problems. When I resumed treatment the scan showed that the tumour had grown beyond the original size but subsequent scans showed that it responded to treatment as before although half of the larger size was bigger than half of original size. The main thing was it had responded and was being held in check and the other lesions were no longer visible.
That is my past eight years in a nutshell. The side effects have diminished somewhat but they can still occasionally give a slap in the face so that I do not become complacent. Sutent seems to suit me and I am not afraid to come and go with it and use it to my benefit. When I was diagnosed my prognosis was nine months, with Sutent – unknown and I think I have astounded myself and the oncology staff by my longevity. My file at the hospital is now so thick and heavy that it could do with some castors on it to make it easier to move. My goal now is to continue for another two years at least in order that I can chalk up three memorable dates;
(1) 10 year survivor of cancer, (2) 70th birthday, (3) 50th wedding anniversary.