Advice please. I think I should have a CT scan.

FormerMember over 4 years ago

4 replies
48 subscribers
1299 views

Hello all, I’m after a bit of advice.
I had a full right nephrectomy 12 months ago. This was at the Royal Free hospital in London. Fantastic place, and great people too. They also found 4 lung nodules, the largest of which was 11mm. They said I would be monitored to keep their eye on the lung growths. They wanted me to go on the Rampart trial, but the 11mm nodule was too large to qualify. I understood I would need treatment for the lungs.
Because the hospital was the other side of London from where I live, it was recommended that I transferred my care to my local hospital in Romford. Essex.
Since then, I have had 2 ct scans, and 2 oncologist appointments, and I’m due for my 3rd appointment on the 23rd Dec. No treatment yet.
The nodules seem to be growing slowly, at the rate of approximately 1mm per 2 months, from the previous 2 scans.
But this time, Instead of a CT scan, I only had a chest X-ray. When I spoke to the consultant’s secretary she told me that it wasn’t a mistake, but the dr. said I didn’t need one.
Clearly I’m worried that the lung nodules might be growing, but will go un-noticed because it won’t be seen on a normal X-ray.
I thought I would be getting a 3monthly CT scan for at least a year or 2.
I’m worried, and wondering whether to call the Royal Free and ask to go back to them for treatment.
Sorry about the long post.

latchbrook over 4 years ago

I don't know what the protocols are for follow-ups when you have lung nodules with kidney cancer but I noticed that your post was a couple of days old and hadn't had any replies.

You say that the Royal Free Hospital is a long way from where you live so I hope you don't mind me suggesting that you speak to them to find out how they would monitor you. After all, you don't want to transfer your care there only to find out that they would have done the same as Romford Hospital.

Let us know what happens

"Never regret a day in your life, good days give you happiness, bad days give you experience"

FormerMember over 4 years ago

Hi scubacrazy, late reply but just connected back to site after my husband diagnosed with kidney mets November 20. So this is extra anxiety you could do without. I totally agree with you, how can they monitor on X-ray!- After following latchbrook advice if this gets you nowhere, have you though of contacting your GP? (they could help, either by writing to consultant directly or possibly ordering CT direct, if they can do that)- If you are unsuccessful with everything, although contentious, have you thought about getting a private scan done? I dont think they are as expensive as they used to be (hundreds not thousands). I know I would try to get the CT direct with your consultant first? but this is what we would consider as nothing can be taken for granted with Cancer - How did our appoitnment go on the 23rd December, did you manage to resolve the issue for future scans. - Debbie

FormerMember over 4 years ago in reply to FormerMember

Thanks for the reply.
I had my appointment via telephone on the 23rd Dec, but it was a different oncologist. She was very helpful, and was amazed that I hadn’t had a scan. She did say that she couldn’t see the lung nodules properly on the X-ray, but there was a shadow on my right lung. No idea what that could mean.
Anyhow, I now have another oncologist appointment for the 5th February, and was told I would be getting a CT scan before that. No appointment yet though.
Fingers crossed for getting a good outcome.

FormerMember over 4 years ago in reply to FormerMember

Thats good news, someone is listening to you. Where we live in the Northeast, I always have to phone Radiology to prompt them about scan before a consultant appointment! - had to do this every 6 months over last 3.5 years! Good luck, fingers crossed you keep with same oncologist and scan befoer 5th shows improvements. x

More from this forum

Advice please. I think I should have a CT scan.