How long wait to see Oncology?

[Pabba]

Hello everyone.

We live in the midlands, U.K. My wife has had her cancerous right kidney removed 12 weeks ago, she is stage 3b renal cell carcinoma, also thrombus in the vena cava and lung nodules. She is in constant and relentless abdominal and low back pain but GP just prescribes codydramol. We are still waiting for an appointment to see Oncology and my question is, how long is normal to wait? It’s killing me to watch her suffer. Should we have to wait so long?

[MAS_Nurse]

Hello Pabba,

We are very sorry to hear about your wife's situation and the constant pain she is in.

If I read your post correctly it seems that your wife was operated on around May this year but that you have had no follow up with the hospital since that time. This would seem unusually long considering her condition and I would suggest that you involve your GP in helping you follow up this by contacting the hospital directly on your behalf to determine what is happening.

In terms of pain management your wife should also be able to discuss with her GP how this could be improved.

If our members have any similar experiences they will be able to share these with you.

Best wishes and please let us know how your wife is getting on.

MAS Nurse & Moderator

[RickHow]

I too had a kidney removed due to cancer. In 2017. I can relate to your anxiety. I too experienced lower abdominal pain for quite a while. 12 weeks seems a little too long. Mine was about 6. The back pain? Well it kind of depends on the operation. There are two ways to remove the kidney. With a large incision. Or laparoscopic ( two small incisions on the front of body. Mine was laparoscopic. Much quicker recovery time and limited pain in back. Large incision I would assume would cause back pain longer. BUT all that said, why wait for the kidney doctor??? Go to your GP. Or even a urologist. I did not see a kidney doctor until about 8 months after my surgery. And I have found the visits useless in many ways. They just look at my blood. Tell me i'm 3b. Send me home. Whereas your gp can do scans of the back and abdomen. The kidney doctor will not be the answer. Please go to your GP. Now, also, about being 3b. My egfr level was normal. Then the morning after I had kidney removed, I was labelled 3b. It is common sense. At this point your wife has one kidney doing the work of two. Here egfr will almost always and forever be "not normal". However these numbers do NOT take into consideration that you have just one kidney. so do NOT be too alarmed at being called 3b. I have been 3b (sometimes 3a) ever since. But all tests, scans, urine samples, show no problems. Go see your GP.

[Pabba in reply to RickHow]

Thanks Rick for your advise. We have been to our GP, we get promises but no follow up, we have lost confidence in him. My wife is back in the hospital Urology dept right now as we just couldn't control her pain any longer. First A&E Doctor called up an Ultrasound scan based on sky high liver enzymes in a blood test. Once in the Urology Dept a Urology Reg rubbished the Ultrasound decision and called up a contrast CT scan instead. At last, a brave soul unafraid of the 'Budget Police'. So we wait now for the CT scan to see what that reveals. Oh the A&E Doc tried to chase up Oncology but as they are completely overloaded they hold team meetings to prioritise and I guess my wife is low in the pecking order, so we wait. . . .

Thanks again for your reply.

[RickHow in reply to Pabba]

It is of course sad she is in hospital but in a way there must be a sense of relief. Finally some action with scans, etc. I again tell you, don't get your heart set on needing a kidney doctor. The urology department is best for what you describe. And as I say, and have read on here in many posts, most kidney doctors will not get too involved. The CT scan hopefully something "fixable". With medication. PLEASE PLEASE keep us informed. I'll be thinking of you.

[MAS_Nurse]

Hello again Pabba,

I have been following your post and replies. I echo what Rich has been saying. She is now in the best place for her treatment of pain management with the Pain team and the Urologists are highly trained specialists. If you don't get answers please keep on asking your questions and request a multi team meeting so that all the specialists can get together to work out the best plan of care for your wife.

Our thoughts are with you both at this very difficult time, please do keep us informed.

MAS Nurses & Moderator.