Advice please! Kidney cancer followed by spot on lung scan

Hi, I currently have 4 nodules around my windpipe which were spotted originally on a chest x rays they were using to monitor w me  post nephrectonlmy. I had my kidney out in 2005 and still have the  nodules. which are still only  a few millimetres each.

I now have CT and MRI scans every 3 to 4 months to check how I'm doing, having developed various metastases over the years ( see my profile) I would have thought a PET scan woul pick up any other areas, tho I've never had one myself.

Things to ask include -  is the spot on the lungs cancer?

If so, can it be treated and how/ when?

Tho they may not know the answers till he's had the PET scan results. Us there any way he can get an earlier PET scan appointment? So he's less time to worry  

Can you or someone else in the family go with your uncle to write down the answers to any questions? My partner has always done this for me. It's incredibly useful as well as a moral support.

Does he have a cancer nurse specialist he can ask anything of? They are very helpful n supportive. Sadly, mine left about 18 months ago n has not been replaced.Tho the consultant's secretary's s been very helpful, she's not medically trained.

The Macmillan Helpline too is worth a call 0808 808 0000 n no doubt a Community champions will be in touch soon to welcome u n give u some pointers. There a no of us in the group too who'' re are still around  despite being a good number of years since having our kidneys out - I'm 14 years post op, some others are 17 and 24 years respectively. . 

Hope that helps.

PS sorry for typos!

Thank you for your advice

Hi ,

Far and away the most important thing is that your uncle has been, by the sound of it, making a good recovery from what was major surgery. From my own experience, one can feel well enough to, say, go back to work, after 3 or 4 months, but it may take a year or more to feel properly strong again. 

At the time of my kidney op, in May ‘18, I already knew that there was “a something” on my lung and that it was very likely to be a secondary from the kidney cancer. From the surgeon and specialists’ point of view, I think, it’s a matter of priorities. Get the main tumour out and, unless there’s clearly a pressing need, lesser matters will have to wait their turn. 

From what you say about your uncle’s case, I think that the specialists will be paying attention to how this small lung spot behaves over time. That’s one way they can determine, non-invasively, whether it is a secondary from the kidney. Or in fact not.

In my case, my “something” became “multiple lesions” and, in due course, two distinct nodules of about 12mm and 7mm respectively. I *could* have requested drug treatment very soon after surgery but my specialists suggested that as I was otherwise symptom-free from the secondaries the longer I could go before that became a necessity the better. For me that was absolutely the right decision. 

Major surgery has a massive impact on the body. But further surgery and/or drug treatment would make huge demands on the body’s resources too. If at all possible, it’s a good thing to have time to be able to recover from the one before hitting it with the other. I myself haven’t had to start on any drug treatment yet. I got all geared up for it, researched the different drugs and their side effects to get a clear idea of what I might be in for - but a year on from my surgery my immune system now seems to be doing a pretty good job on it’s own. (To my surprise. And for the time being at least.) Over successive CT scans, one lung met has reduced from 12 to 10 to 7mm and the other has gone from 7 to 6mm to ... disappeared. (I didn’t even know that was possible!) 

But, at the moment, your uncle doesn’t even know if the lung spot is a secondary or not. My advice would be to take everything step by step and at each stage, however it goes, try to deal with what you know to be real. Easier said than done, I know, but try not to get too swamped with all those frightening what-ifs. The specialists have great expertise to draw on. 

Wishing your uncle and you all the very best for his approaching appointment.  

-Mark