Stage 2a - Clear cell - Grade 3 - advice appreciated

Thank you both for taking the time to reply. It's probably more a combination of my doctor not being clear enough in his communication (follow up is via public health system rather than private so it is quite busy) and me wanting certainty that they cannot provide.

Hopefully cure rates for early Stage 2 with no local invasion are still good. Fingers crossed!

DSFrey said:

Here's something I came across one day...

http://nomograms.mskcc.org/Renal/PostSurgery.aspx

 

Of course take it for what it is, and remember that your case of cancer is unique to you. So use the results as something to think about but not take with absolute faith.

 

 

Thanks for the link mate! I have mainly used this link: e/index.phphttp://www.lifemath.net/cancer/renalcell/outcom but have not seen the one you posted.

Just wondering if you know the difference between local and systematic symptoms? My only real noticable symptom was blood in my urine. Not sure if this would be classed as a local or systematic symptom. Thanks again. 

DSFrey said:

FYI

Hematuria, i.e. blood in the urine is classed as a local symptom since it is the tumor itself that is causing the bleeding. Note I've also seen articles that say that the presence of systemic symptoms, e.g. fever, weight loss, etc., has not shown significant change in recurrence probability regardless of what this calculator suggests.

Thanks for the explanation DSFrey. While I of course take the results of nomograms and survival calculators with a grain of salt the info you provided does set my mind at ease somewhat.

I found the below study pretty interesting as it seems to relate specifically to grade 3 tumours, even though much of the statistical jargon is beyond my understanding. I had not come across any articles referencing elevated CRP levels previously.

http://jjco.oxfordjournals.org/content/39/9/588.full

Srashedb said:

Articles

I have made it a practice to NOT read anything about renal cancer that is several years old; the link you attached was 2009.

Sarah

Valid point Sarah.

I guess that study is obviously out of date and may have been proven incorrect later/improved by more research as well as much better treatments being available which impact on stats. Still I found it quite an interesting read personally

Djinnie said:

Keep well!

Hi There, 

No one can say with any certainty that you are cured! There is always a chance it will return irrespective of size and grade. I had a very small tumour on my kidney in 2003 which was ablated, I was fine for ten years and then the cancer returned. All you can do is to keep up with your scans, and take care of your self. Keep fit and eat a sensible diet with little to no sugar. You sound like you are doing well, keep a positive frame of mind and keep stress levels low. Here's to a cancer free future:)

 

All the best,

 

Djinnie x

Thanks Djinnie  Sad to hear after all that time your cancer has returned. I'm sure you will battle away and beat it once and for all. It staggers me that stray rcc cells can hang around the body for such a length of time.

Next scan is due in a couple of weeks (super nervous). I've been trying to stay fit running and playing basketball etc. I've also cut right back on sugar and have tried to avoid eating foods with preservatives and additives for all it's worth. I also read a bit about anti-angiogenisis foods. As with all things I'm not sure if it will really help but given the foods are natural and are good for you anyway there's no harm in trying!

Thank you so much for the well wishes.

John

donna_lee said:

Been There, Done That

In 2006, initial Dx at T2N2M1.  Similar to what your pathology reported, only tumors were larger in the kidney, one in liver and a set of nodes.  The surgeons felt certain that they got "it all."  That statement must be read as "we examined everything and that is the only sites that we saw that remotely looked like there was cancer present."

This is why there are follow-up exams-CT or Xray/US.  I was put on a 3 month schedule for CT of Chest/abd/pelvis.  Between the 9 month and 12 month CT's, a single node was observed to be enlarging. A fine needle aspiration biopsy was positive, so I had surgery to remove the node.  A 4" incision and a 4 hour surgery, because the node was attached to the duodenum and the inferior vena cava.

My oncologist then put me on every 6 month CT's.  The difference between the 6 and 12 month scans showed another node enlarging, located in back of the bifurcation of the aorta in the low pelvis.  More surgery, and it was positive for Clear Cell RCC, too.

What I'm saying is that the doctors cannot always "see" everything.  There may be cancer cells present in the body...they may die naturally, or develop into something that becomes obvious on a test.

I cannot stress enough the need for regular follow-up exams.  That and having your primary care doc monitor what else is happening with all your systems.  Your blood pressure should be kept under control. maintain a "proper" diet, exercise, etc.

I haven't received any of the kidney cancer drugs, as most of them were still in trials at the time I was first diagnosed.  And with trial drugs, they have to have a patient with an active site(s) to monitor the effectiveness of the drug and any side effects.  And since all mine were able to be surgically removed, that was the choice I was given.

In 2006, I was told I might have 5-7 months to live based upon the extent of the mets and the organs where I was experiencing secondary symptoms (liver & gall bladder).  That was 8 years ago.

Kick A$$, John.  The actual CT is a piece of cake.  It's the effects of swallowing the Barium Sulfate that will cause a problem.  I suggest having a package of baby diaper wipes in your pocket.

Good Luck and let us know the results.

Donna

 

Hi Donna,

Late reply but just thought I'd share that I had my follow up scans in May and they were all clear  So at the 1.5 year mark signs were good. Next appointment is in December so fingers crossed the results are also good.

Managed to finally go on a Europe trip in June after all these years which was great. You have to make the most of life.

Take care,

John