Kidney cancer

A place for people affected by kidney cancer to support one another, ask questions, and share their experiences.

3 Weeks post op, I get my Post surgery letter and Leibovich score.

Scubacrazy
Posted by

Hi Gang.

OK, so my Right kidney is gone, and I am recovering extremely well physically, insofar as the wound, and mobility etc is concerned. I am 3 weeks post nephrectomy now, and still feel a bit weary and weak, but definitely on the mend, which is great.

I spoke to the oncologist at the Royal Free who had originally wanted me to go onto RAMPART? (I think that was the name ) but I am unable to do that now due to the lung mets being bigger than 1cm , so now I have been referred for another scan on my lungs to measure the mets in 4 weeks time Depending on whether they shrink, (would be great), remain unchanged. (OK ) , or grown,  (Don't want that one thanks !), then he will decide on my course of treatment.

Today I had my follow up letter from the Royal Free after I met with my surgeon last week.Below is an excerpt from his letter.

Diagnoses:-  85mm G3 pT3a R0 clear cell renal cell carcinoma on Right kidney treated with radical nephrectomy and venous thrombectomy.

Leibovich score 8 = high risk.

2 Lung nodules greater than 1cm in size

Not a candidate for adjutant studies due to lung nodules.

So I am a bit concerned by the Leibovich score, as that seems to indicate a worse prognosis than I had thought, but maybe I am overthinking it.

I also still have my gallbladder, which needs to be removed ASAP, but not sure when yet,

So, thanks for reading this, and I now have to play the waiting game again, waiting for my next scan to find out what's next.

All the best to you all,

Gary.

I’m doing this the only way I can. One day at a time. 
buttercup01
Posted by

Hi Gary , glad to read your nephrectomy went well but not so chuffed re the next step. As u say, it's the waiting game again...

Do let us know how the scan goes in 4 weeks' time. I never knew my Leibovitch score but hopefully others can pitch in with their experiences.

Btw, I had my gallbladder out before my cancer was discovered. Hope you don't have to wait too long to have it removed, but be prepared for it leaving u weak again - so maybe not too close to your nephrectomy if possible?

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Scubacrazy
Posted by

Thank you for your reply. I was originally due to have my gallbladder out at the same time as my kidney, but because the kidney tumour was so big and they used the robot for the op it stayed where it was. I’ve had polyps in there for ages, so it’s mainly because they have grown so much that they want to take it out. The polyps may or may not be malignant, but the idea is to take it out anyway. 

I will of course post on here whenever anything happens. It’s helping me share it and in doing so makes me feel a bit of comfort for some strange reason. Thanks again. 

I’m doing this the only way I can. One day at a time. 
Plumbago
Posted by

I had the same problem with my gallbladder but mine had stones in it and i was getting jaundice. They removed a 14cm tumor with one of my kidneys and left my gallbladder there as they said i had too many complications already about 5 was later they did a ercp on my liver and it seems to be okay now no stones can be seen Goodluck 

Scubacrazy
Posted by

Thanks , there’s hope for me yet to keep my gallbladder.

‘Hopefully mine will be stone free too !

I’m doing this the only way I can. One day at a time. 
buttercup01
Posted by

Where's my 'like' button gone?!

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Gragon
Posted by

Hi / Gary,

The Leibovich score is a figure which tries to estimate the likelihood of your kidney cancer spreading, I've put a link to the Kidney Cancer UK website page which explains it.  click here.  It appears to be a bit of a strange thing to put on your report when it has already spread to your lungs but I suppose the reports follow a standard format and this is just one of the results they automatically put in.  I am not sure if it has any other relevance.

Whilst I love the Macmillan site for the support that I can get here, the Kidney cancer UK site does contain more specific information about kidney cancer and it has useful information about things like the grading and specific types of kidney cancer that is not available on this site.

As Macmillan covers all types of cancer they a larger organisation and more able to assist with advice about rights and benefits etc. as well as the support available through their centres at a lot of hospitals.  I hope that this was helpful.

Wishing you all the best with your gallbladder operation.

Gragon 

Scubacrazy
Posted by

Thank you
I will follow that link with interest. 
‘Very helpful. 
‘Thanks again. 
‘Gary. 

I’m doing this the only way I can. One day at a time. 
Jo300
Posted by

Hi Gary

As Gragon said the Leibovich score is to try to determine the likelihood of recurrence specifically in RCC.

More important is the grading of the cancer - so grade 3 is OK. 

I was Leibovich 5 - but it came back - but I'm grade 3 too (also pT3a at hte time) - and my oncologist keeps tell me that it's slow growing (or not growing at all as is the case at the moment)

I think you have good reason to stay as positive as you already were.

Jo
x
buttercup01
Posted by

I like your post 

Now my like button comes back lol

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Scubacrazy
Posted by

Thanks for your kind words which I found very encouraging
I am a Leibovich 8 but it has already spread to my lungs so in my mind it is a redundant 8. Therefore I throw it away.  

I agree with you about the grade3, just like you. That’s more important now. 

Another thing I need to do is to stop using Google and ask on here. Google is not always my friend it seems !!

I will post when I get my next scan  

Thanks again, and take care,

Gary. 

I’m doing this the only way I can. One day at a time.