Renal cell carcinoma

Thank you for your post, it is very reassuring to hear from someone with such a positive outlook, especially for we who are newly diagnosed. You have made my day! XJules

I totally agree Jules the previous post also made my day,

I have found it hard to deal with the fact that my kidney cancer had spread (for some reason I hate the word metastaticiised) but the post previous to yours Jules really inspired me.

Can I just ask Jules how you are getting on now Jules

gill

Hello, so sorry for the delay., thank you for thinking of me.  I am currently , as I type, in the waiting room to see a consultant privately. I don't want to wait 4 months for the operation. 

I think I may be getting my MRI scan results today too so am feeling quite anxious.

My husband ( who is lovely) doesn't really want to discuss the situation with my cancer.  He just keeps asking if I want a cup of tea ( There is only so much tea a girl can drink!)

I will let you know how I get on. 

We are already 30 mins after our appointment time and the consultant is only just taking the patient before us  in!

Take care everyone and thanks for your support x

Hello Jules how did you get on last week

Hi Carol, well it’s was good in that he was so lovely…whereas the 3 surgeons that I have now spoken to in the NHS have been professional but very matter of fact. 

The private consultant involved my husband much more in the consultation tand this has had the result in him now being able to freely talk about it, which has made a massive difference.

I think that I said I had been rescanned….I still haven’t had a date to go back to the NHS to discuss this result but the new chap had the scan results. He said that the area on the left kidney was a Bosniak Cyst. This will be kept under surveillance. However he said that the cancer needed to be removed with the whole kidney as it was deep in the kidney and now 5.2 cams and not 4.2 as per the previous scan.

The rationale for having a partial on the right was as I understand it   to keep some kidney function on that side in case the left side became an issue. This chap said that there was a bigger risk of not having  the whole kidney removed. He said that it needed to come out. He said he was going to write to the NHS with his findings and he suggested that I asked whether the date would be brought forward given that it would not require the robotic equipment.

I have asked the question,of the NHS today and they are not able to comment until they receive the letter from the consultant. For the first time when I heard that I had a good cry ( whilst on the phone to them).

I am now going to try to get a  set date privately…….

So that’s it really, I feel sad, vulnerable and a bit all over the place today.

With love, Jules xx

How are you feeling? Any news from NHS yet?

could I ask how you found the private consultant?

Hi Gill, no nothing as yet…….I took the decision on Thursday to stop ringing…..I phoned and asked whether the doctor had read the letter and was informed that he hadn’t….I can’t remember what was actually said but think it was ‘ he hasn’t been in, or he hasn’t been up to the office.

The Cancer Support worker rang me back instead of the macmillan nurses but couldn’t answer any questions, she said that she would ask someone to ring me back and it could be the middle of next week ( which is now this week).

I also phoned some other private hospitals as the original surgeon I found couldn’t then do the op until 28th April. The other private hospitals couldn’t seem to speed up the process, I was looking at the middle of May.

I cried a bit on Saturday and didn’t go out of the house. I just felt as though the system was failing me. I now have a continuous ache in my side too, which wasn’t there before. I don’t know whether I am supposed to tell my GP or the hospital…..the cancer support worker made a note of this for me.

I have now booked in for 28th April, but do hope something comes up before that.

I found my the private chap by googling private urology consultant and I then looked up their information and what they specialised in. The chap I found was Head of Urological cancer in the NHS. He has experience of robotic work, laparoscopic ( keyhole) and open surgery.on kidneys….sometimes their main interest is prostate cancer, so make sure that you find someone with experience of kidney cancer.

If you want me to help you then send me a friend request detailing your area and I could help you go through the same process that I went through.

Take care,

Jules xxx

How are you doing? X

Aww thank you for this message.Yes I am doing ok thank you. Sometimes what has happened hits me, but I try to get on with life and not to focus on it.. It was so lovely to receive your message x