"suspected kidney cancer"

Following abnormal periods, my GP sent me for an ultrasound which picked up a tumour. I was put on the 2 week wait & told that it was rare for tumours on the kidney not to be cancer. Though a lot of information was given to me, I felt that the information I was asking for wasn't alwys forthcoming, it was more like a drip feed approach, ie you won't be back to normal until Christmas (op in Aug 2011) but at the outset I was told you will be recovered in 6-8 weeks. At each appointment being told now we need to do this, instead of from start to finsih this is what to expect & the amount of time you are looking at to your operation date. Instead I had to wait for my first appointment, maybe get some bloods done, then I had the initial appointment, then I had a scan & then results are back in another week, then I got my results & then I was booked for theatre after going to pre-admission clinic. This takes weeks. It felt to me that it was as though they didn't think I could handle it all in one go? Trying to give my work place an estimated time when I would be back & working out my finances was a nightmare.

All the way through there was a big emphasis on the tumour being cancer, it turned out to be an oncocytoma. I believe they knew this prior to the operation but were not upfront with me. I feel this as I had seen the GP, following my 2nd clinic apt (to get the scan results) but before the operation, regarding another matter - my medication & she had seen the radiology report. At that time she mentioned the word oncocytoma. I asked if that was another type of cancer & she said no, it was benign, the radiologist wasn't sure if I'd had a kidney infection before, there was scar tissue. I told her I was not ever aware that I had. She told me not to think this wasn't cancer. I googled oncocytoma & found that it was a begnin tumour, it looked very much like a kidney cancer & could not be definitely decided until after a biopsy. It also said that these are very rare. And that one theory is that the renal cell carcinoma & oncocytoma can both start out as an oncocytoma & become malignant or continue as an onococytoma containing cancerous cells. I also found out that oncocytomas can re-occur in the other kidney.

I had a partial nephrectomy & I am pleased I have not sacrificed my whole organ for the sake of a benign tumour. However, I do understand that I still would have needed the open surgery to remove the tumour rather than key hole to take the whole kidney. I understand that the biopsy needed to be done post operative due to the risk of bleeding & uncertainty of biospies & the risk of seeding the cancer, so nothing is different there.

However, I feel that they were not honest with me. Though I was told there was a 10% chance this was not malignant, the emphasis was on cancer. I also rang the specialist nurse up prior to the operation & told her about my GP appointment. She said it was rare for it not to be cancer & they were treating me this way.

It all came as a very big shock because I was a relatively healthy 40 year old who was just having funny periods. To find a tumour & be put on the 2 week wait was a bombshell. I am a single parent of an 8 year old & have an older grown up child also. My little boy was understandably confused & my eldest was in denial. I had come to terms with 'cancer' and felt that I was going to be a low risk & the surgery would be the end of it apart from future scanning. I had to wait 6 1/2 weeks for my follow up after surgery, a very long time indeed. I was then told in clinic that I did not have cancer, it was benign & I could get on with my life.

Though this is good news, it did take me some time to come to terms with the again 'unexpected' news. I strongly feel that any patient who is undergoing an operation for a cancer that could not be biopsied before surgery should be seen much earlier in clinic, pariticularly when no further treatment is expected. This was my case, no further treatment unless high risk. I sat around for an additional 2 1/2 weeks thinking I had cancer when I did not. The consultant couldn't understand why my friend & I were not dancing around with joy at the news .

I was shocked. I started asking questions about the oncocytoma & he said it didn't re-occur, he wasn't interested in scanning me any further & wanted to dishcarge me to the GP. I was asking questions about my kidney function & he was saying you have more than one kidney so you are in effect like the rest of the population. I had not realised what a completely different group I would have fallen in for medication & diet cautions had I had the full nephrectomy, which would have been good to know pre-op. So I sat spending time thinking of important questions to ask at my clinic appointment, whilst I was still quite poorly & immobile, that were completely irrelevant.

I had said I felt there was an emphasis on cancer & he said, 'I did tell you that there was a 10% chance it was not malignant.' I replied, 'I agree you did, but the emphasis was on cancer & if you had told me that you weren't sure, I could have taken a wait & see approach." The consultant just could not see where I was coming from because this was good news.

He discharged me back to my GP, that was that. I felt like the consultant was wiping his hands free of me & saying off you go now to your GP. I was shocked that I would not be scanned again in a few years due to the possibility of recurrence. I understand there are limited resources in the NHS & this is probably why I waited 6.5 weeks post opertation for a clinic appointment & am not offered scanning. However, with such a rarity I am suprised they don't want to follow me up.

Luckily, my GP has been very astute. She sent me for the ultrasound in the first place due to my mother's history of ovarian cancer. I was lucky to have had the tumour found incidentally. She also picked up my post operative anemia. I was sent home with an Hb of 10, when I was 13.5 pre-op & am a vegetarian. I am hardly going to front load on steaks. My GP put me on iron & my ferratin level is still on the low normal side of 35. My GP is also offering me 2 yearly ultrasounds, just to keep an eye on me.

Though I did not have cancer, I have still been through everything a cancer patient would go through. I have had a lot of additional worry on top of recovering that could have been avoided. I have had financial worries, health worries, family to think of & a lot of worried friends. If I had been told wait & see then the worry of 'cancer' would not have been as strong. Of course, we all would have been wondering, we would have been sorting out my care & that of my little boy, sorting out work arrangements all of that etc, without the frantic worry of 'this is cancer'.

When I return to work, I will not have been at work for 6 months. Finances have been a huge worry for me. I work for a charity & the work is very manual & low paid (so that the profit is paid back into the work the charity funds). Their standard sick pay is 1 month, luckily they have reviewed this in my particular case & have extended it, reviewing it again in December. I could have been in the position that I had no income coming in & not well enough to go back to work due to recovery, but not having cancer not being given the same finanical opportunities (macmillian loans, incapacity benefit, critical illness policy not covering).

I feel having been given an honest interpretation of what the specialists knew of my case, I could have been better prepared. We all would not have worried as much. I maybe could have worked longer prior to my operation. I could have planned out my finances more etc. Though I was not haphazard with my finances, I did treat myself more because I thought I had cancer: I drove the car more, had dinner out a little more, complimentary therapy, indulged my little boy etc. I fully expected my critical illness policy to pay out & this would have had a dramatic effect on our lives, being debt free. I am not in trouble with my finances but they are a little bit tighter than I would like because I was not as cautious. Health is far more important than money, but we do need money to live. I could have been a lot happier & less worried if I 'd had all the inforamtion given to me up front.

I would like clinic follow ups to be reiviewed for post op cancer patients, particularly those who were not biopsied pre-op. Every bit of time is precious when you are healing up.