Previous Radical left nephrectomy for Leibowitz score 8 clear cell renal carcinoma (PT3a)

Hi ,

Sorry to hear about your situation.  No one likes uncertainty and medicine appears to leave lots of room for this.  I'm afraid that I have a little experience of lung nodules but mine are definitely cancer.  I have two measurable nodules but as I understand it they can see them but not accurately measure them once they get below about 1mm.  How they determine if they are cancer or not I have no idea but mine respond to my cancer treatment.

Has your urologist clarified what they think these nodules are and why they think this?  All the reports from the hospital should be copied to your GP so it might be worth while arranging to talk to your GP to see if they understand what your Urologist is saying and clarify it for you.  If they cannot then you might want to discuss with them the process for requesting a second opinion.

I always request copies of reports and tests be sent to me as well.  I get them after I have seen my consultant as they are better at understanding the medical terminology and raw data but when I get home I can check the internet for the medical terminology and take my time ensuring that I understand what has been said.  (I never try to use it as a diagnostic tool as in my opinion it is rubbish for that).  It is likely that the Urologist is simply passing on the interpretation of your scan as given by the radiologist.  You can get a copy of the CT scan as well on a disc but you might have to pay for this.  I did it once but although I could look at it on my computer, as you might expect I could not interpret it.  In fact it took me about half an hour to work out which side was my chest and which was my back!  I had no chance of spotting a tumour mixed in with all the rest of the things that make up my body.  I suppose that makes sense of anyone would become a radiologist.

I do not suffer from breathlessness or any of the other symptoms that you mention.  You are probably best to discuss these with your GP as they sound like they could also be asthma or a response to something like dust mites.  I know that we tend to worry about cancer first and ignore the more mundane possibilities and I sometimes struggle to remember that although I have cancer it does not mean that I cannot catch other illnesses.

I hope that you can get your concerns resolved soon.

I would be interested in knowing what you do find out?

Wishing you all the best,

Gragon xx

Thanks you, Gragon for your quick reply and recommendations.

I will go to my GP on Monday, now that i have the letter with the consultant's report.

This year i didn't have any dimensions written in the report neither he said when i went for his consultation. But if they were 3 and 4 mm last year and he said there are stable, i woulnt want to see them now 4 and 5mm because that is GROWTH....

He said that these nodules are not kidney cancer because if they were they would have doubled in 6 months and mine are the same after two years (last year i was told for the first time but they looked back into previous CT and detected them too). He said that this third one they are mentioning this year seems to have been there previously too.

I know enough to know cancers don't always go with the rules.

I thought the scan machine has a software implemented that detects itself the positive cancer activity, thats why they give you the contrast, so i am shocked that its a person's eye the one making the reporting.....

I am determined now and i will ask the GP to refer me to the lung consultant.

Could you please tell me 1) what sizes were your lung nodules before they put you on treatment and 2) did you have activity somewhere else in your body?....I take it that you did have kidney cancer?

many thanks again,

maria

Hi Maria / ,

If I answer your questions in reverse order it might be easier.  If you click on my username you can read about my cancer to date although I do need to review it having just had another scan.  It is kidney cancer and I have tumours in my abdominal cavity and at the moment there are three of them large enough to measure, I initially had three, then four, then five and then three grew into each other and merged together and I was back to three.

I am on Pazopanib and also a trial of how to take it.  It cannot get rid of the cancer but can shrink it.  I take it for 12 weeks and have a scan, another 12 weeks and have another scan.  If my tumours have shrunk or remained stable I have a 12 week break from treatment which allows my body to recover from the side effects and hopefully prevents the cancer from learning to tolerate the medication.  As a result smaller tumours can appear or shrink depending upon where I am in my treatment.  After my treatment break I have another scan and if they are growing again I go back onto the treatment

At the moment I have one 2mm nodule in my lung which was 8mm three months ago.  Six months ago I had two measurable tumours in my lungs and several which were too small to measure.

I am no expert regarding the scans but as I understand it the contrast into your veins highlights your blood vessels and the drink highlights the digestive system making it easier to see them.  I think that writing programmes to differentiate between normal and abnormal can be extremely difficult as the differences can be subtle. I can see that if computers highlighted an area of concern then those concerns would be checked by a person but I understand that at the moment a trained person can do this with greater accuracy.  However, people can have off days whereas computers rarely do (although the programmes are written by humans and having worked with a government bought computer programme I know how bad these can be).

My experience of lung tumours is very limited but certainly mine grew from nothing to 8mm very quickly but I do not know if this is usual, slow or fast.  I do know that all sorts of things can cause scarring on the lungs as a friend of mine always used to get called back for a second chest x ray (he had them every few years as part of his job) as he had scarring left from a childhood illness.

Hopefully your GP can offer some clarification when you see them.

Wishing you all the best,

Gragon x

Hi Gragon again,

Thanks for writing back. I was born on the same month and year than you!!!

It seems you are in good hands; they say we have to look at cancer these days as a chronic disease, and carry on with our lives as normal, as much as it is possible. 

I will wait now for appointments made. Hopefully these nodules are not cancer but if they are, they can stay stable as long as possible.

thanks again,

Dear Felis,

i am sorry to hear about your situation. 

I also had a kidney removed (  6 weeks ago )

I have just joined here and I noticed that I have just been  diagnosticed with the same as yours Pt3a score 8 but mine is grade 4. The tumour was 8cm 

Hope all goes well with you 

Monica  xx

Hi Monica,

I am sorry you are affected by cancer too. My tumour was 6.6 cm and it was "trying to get into the main blood pipe" as far as the consultant told me. It is not clear to me when i had the nodules in the lungs or if they were there since the begining (Dec 2014 when i had the first CT). I hope you dont have any. My consultant said that nodules so small dont give any symtoms and that both him and the radiologyst thought these nodules are not cancer, because if they were after 4 years since my operation, they would have grown much more....so i went to my GP who sent me first to the ENT specialist, as my voice got husky in the evenings and i had a little cough in the morning tryning to get out some flame i noticed. The ENT doctor inspected inside my nose and down to the throat and she said i had everything beautiful; the nurse also look at my ears and she said they were perfect. The ENT doctor has put me on gaviscon as she thinks what I have is acid reflux. I must say three weeks later i am much better of these symtomps. I had acid reflux in the past, in fact, this is why the tumour was discovered, inspecting my digestive system!!!

The GP also sent me to the nurse to measure my lung capacity, which is normal to my age. The GP said that if after all this i still want to see the lung specialist she will send me, as she understands i might need reasurrence from him rather than the kidney surgeon.

Obviouly i dont want to waste clinician time, as they are so overload. In november i will have my 5 year old post operation CT and if things are good i will put in the two year survelliance.

The problem with cancer is that you always have it in your head, it is very difficult not to think about it. I retired at 55 two years and a half ago and I try to live a helthy life. Plenty of red fruit and anti cancer foodies, walks and pilates etc...

I hope you take care of yourself and i am having my fingers crossed that you will be fine.

Maria xx

Hi there Felisa/Maria,

Thank you so much in taking your time to reply. 

It is very reassuring to be able to talk with those affected by cancer with the same diagnostics/ prognostics as ourselves even though we all have different biology.

It is all very new to me but  I think I am coping rather well so far however it was shocking to hear the Tp3a, scoring 8 and have the worse grading. 

It does make one wonder what on Earth have I done to get that even though cancer might have preferences it overall can afffect just anyone. 

I will do everythibg that will be necessary to combat/treat it but I am also putting my affairs in order. 

I am not angry nor disappointed in a way not even too terribly worried but I do have my moments from time to time. 

Sunday I will have my first scan after the surgery and that will be good to know how is inside my body so I know more where I stand. If everything is clear I will bypass NHS and have my own routine exams on top of it to make it more frequent just to be extra sure.  

I am glad to hear you are keeping up with all your health checks and they are all positive. I am sure you have been through a lot as we all do when facing cancer  

I will keep you posted with the results and  thanks once  again for the reply

Wishing you all the best 

Keep healthly, keep well  

Kind regards,

Monica 

This is me again. In August 2020

after so many scans after  the operation I am pleased to confirm there is and there was no sign of any cancer !

 X  X 

Hi ,

Pleased to hear your news,

All the best,

Gragon xx