BOB JK My diary of kidney cancer (to be continued)
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Hi, My name is Bob and I live in Cambridgeshire. I am married with an 8 yr old daughter and three older step sons. Up untill the end of last year everything was tickety boo having recently moved to a new house which we love. Work was busy but enjoyable. I am Manager of an electrical companys maintenance department and my Wife, Linda was enjoying her job as a Nurse. The three boys are buying there own house nearby and all work locally. In November I went to my Doctors with a small "cyst" on my chest. After a couple of referals and many Xrays, pet scans, bone scans and CT scans I was told the news everybody dreads. My lump on the chest was a secondary cancer of which the primary was in my left Kidney. I was fast tracked to the Royal Brompton, under the expert care of Mr Laddas who informed a long and complicated operation would need to be carried out to remove the bone tumor and surrounding bone which involved two ribs,my collar bone and chest bone. I did not have time to panic, the operation was carried out the next day over 10 hrs. After nearly two weeks in the Brompton I am recovering well from this op but I have since been told that the Cancer is in both kidneys as well as small mets in both lungs. It seems at the moment further ops are out the question and i have been put on the drug Sutent. I am one week into this and so far so good. I do not know what the future holds but I have to remain positive.
Just wanted to add - that 'out of the blue' DX is not uncommon. It seems extraordinary that someone can develop terminal cancer without anyone noticing at all, but so it is. The same thing happened to my husband. The very first symptom he ever got (a year before his final DX) turned out to be a visual migraine that was a symptom of his brain met!
So, although the shock is profound (to say the least.....), you and not alone, I promise you.
All the very best - Julie
PS - at least with the new spate of drugs for RCC there's never been a better time to have metastatic kidney cancer, and the outlook has definitely significantly improved. Is your husband scheduled to have his nephrectomy, or are they plannign to reduce the primary tumour first with Sutent? (or he could be bilateral like Bob?)
Thank you very much for your post which is extremely helpful. Sadly my husband isnt well enough to undergo surgery for nephrectomy and the kidney tumour is a particlarly nasty aggressive one. Embolisation has been discussed but he just isnt well enough. He has had 2 blood transfusions and has lost 4 stones in weight. We are currenbtly trying to manage pain control - just started morphine when required. Hopefully the Sutent will soon be of benefit.
I'm sorry that a nephrectomy is not on the cards at the moment. However, although, obviously, it depends on each individual patient, I can tell you that I know of at least two people elsewhere who, like your husband, were too poorly to have the kidney out, and so were put on the new drugs, and the drugs firstly shrunk the tumours and secondly improved their overall health, so they were then able to have the neprhectomy. It would be great if your husband had this experience as well.
Well we got to the Marsden in record time today. No hold ups, not too much traffic . I am about to drink my pint of water ready for my ct scan. We were here by 8 and had two cups of coffee so my bladder will be working overtime later. After scan we then hang around to see prof Gore to get the latest. Although my wound is doing good it's not quite healed so I think the Sutent is still a week away.no doubt I will tell you more later .
Just wanted to wish you all the best today and I hope you dont have to wait to long on the results (not like poor Lorraine 32) Sounds like you might get back on the Sutent soon finger crossed. So glad Kate enjoyed the trip and I am sure although you missed her it was nice having time on your own with linda.
good news and bad news as far as my scan results go. The good news is the site of the latest operation looks good and so it looks as if the partial nephrectomy was succesfull and also the lung mets have not altered which is good. On the minus side the remaining kidney tumour has got biigger by 6mm which gives it a diameter of 1.1cm. This was really to be expected and to me not a supprise although still a bit frightening to be told it is growing. My wound is STILL not healed so rather scaringly the sutent is still a week or so away but hey, life goes on. hopefully after a break the Sutent will kick in well like it did when I first started on it.
Sorry to hear the tumour is growing - fingers crossed for you.
I see you are looking forward to going back on the sutent - my husband starts his first cycle next week - it has a lot of work to do as his primary tumour is 14 x 11cm. He has had 3 months of interferon but I dont think this worked as a visible lump recently appeared in the lymph nodes near to the clavicle.
I find reading your diary very informative and at times comforting to know that we are not alone at any time.
Last night our friends came round armed with a chinese takaway which was very nice. We spent an enjoyable evening wining and dining and then just chatted the night away.
I took sleeping pill last night and slept untill 4 30 which is really good for me. Aparrently although I slept, or so I thought, I kept Linda awake for a good part of the night. Apparently I kept having choking fits but I do not remember any of this. This morning we took Kate to her Auntie Julie for a days activities with her cousin Jenny then Linda and myself popped to cambridge as her mobile had stopped working and If Linda cannot text its like she has lost a hand and so we had to get it sorted. Then we went to see Justin and Matt at their house and I managed to do a bit of work in the garden which I really enjoyed. Now we are home and I need to walk Mollie before taking another sleeping pill and hoping for the best.
What a busy morning. Just done a Tesco shop ( well Linda did and I just added my favourite bits to the order) and I'm in my pajamas and  Im so relaxed. dont you just love this internet shopping.
I had a really good nights sleep thanks to the sleeping tablet and I think Linda did too. We have lazed about this morning doing an on line shop and I have fed Mollie but not much else. My wound looks to be healing really well and im sure one more week will do it. Today I hope to do small bits in the garden and am also meeting up with Tom as he is panicking about his speech. I also plan to sort out some sort of stag do with him. I will not be doing a pub crawl or night clubs (unlike Linda on Katie's hen night). We will probable all meet at a local restaurant and have a meal and a couple of drinks before Tom and his brothers and friends hit the town and paint it a murky red. At that point I will be feeling murky and need to hit my bed. The weather seems to have turned and it is cloudy but at least still dry. I am really enjoying my time off the Sutent and am eating and drinking all the things I cannot usully touch. I had a great time round Matt and Justin's house yesterday and yes I probably did do a bit more than I was suppose to but boy was it good to get out in the garden and actually do a bit  of work.
