Kidney Tumors & Diagnosis? Size Matters–Big Surprise

Kidney cancer is generally a very silent disease. It is sneaky, hides out for years, and is often assumed to be something else.  In my case, my doctor essentially decided I was just a menopausal women with the ever-popular “stress” as a an extra.  The stress of carrying about a 10 cm tumor and wasting away  was probably part of it.

That slow diagnosis, often delayed for years is far too typical.  Only the greater use of CT scans has been significant in finding kidney cancer at an early stage. And just what is early or small? Looking for a cracked rib, or the dislocated shoulder has often revealed kidney cancer, and in the case of the shoulder, lung mets.  And then the hunt is on!  By the time this diagnosis is made, nearly 30-40% of kidney cancer is already metastatic.

The ‘classic triad’ of symptoms, are 1) blood in the urine, 2) flank pain, and 3) palpable mass in the abdomen. There are doctors who will consider kidney cancer only when the patient has these three symptoms, but that happens in fewer than 10% of patients.  The cancer has to be pretty far along to be found this way.  Meeting a pair of new doctors who were aware of my kidney cancer, they were obviously bewildered to hear that I had had none of the these symptoms.  “But those are the usual symptoms,” one said.  Maybe ‘classical’, but not ‘usual’.  Unfortunately that expectation is a barrier to good diagnosis.

Beyond the diagnosis and the staging of the disease is the pretty obvious question of what to do next. (Staging: another of those words used one way in English, and quite another in medicine No wonder we are confused.)  Getting treatment is derived from that ‘staging’.  To be told your cancer is at Stage I seems the only  bright spot of a cancer diagnosis,  but not so reassuring with kidney cancer.  The  “SMALL” Stage I kidney tumor is one which is confined to the kidney (good news) and is 7 centimeters or less.  Maybe Europeans react with the required, “Yipes!”, but few Americans would until they know that this is almost 3 inches in size!

Ain’t so small in my world, or in my kidney!, or anywhere else. In my previously-naive patient world, I thought a ‘small’ tumor was the size of a pea, or maybe a peanut.  In any case, these so-called small tumor are Stage I, of four Stages.  Don’t even ask about Stage V.  Calling a near-three inch tumor small reflects the history of many very large tumors being found in the early days.  Even in 1997 there was discussion about whether a 5cm (2 inch) tumor should be the ‘small’, and in the 1987 system, it had to be 2.5cm to be small, ie, about one inch a T1 stage.  I do not understand why this basic staging was so dramatically changed, but it may well be that there were so few truly small tumors found in this early CT era.

In any case, we now have a system which lumps all tumors 7 cm or smaller into TI category, re-divided into T1a if under 4cm, and T1b, up to 7cms.  This minimizes the sense of risk that comes with these larger Stage I tumors, despite clear evidence of much greater risk at about as they grow.  That shift to a more aggressive tumor, capable of having metastatic potential, seems to start just over 1 inch, about 2.8cm.  There is a measurable increase in risk of about 62% at this size, so waiting around for a mass to be palpable (ie, it can be felt) puts us all at risk.  And of course, that metastatic potential has likely started even earlier, prepping the body to accept new cancer in new locations.

Thus, the absolute need to monitor patients who have had large ‘small’ tumors far more carefully and for a longer time.  The reality is that even truly small tumors have the ability to start the metastatic process.  Tiny and invisible even to a CT, they can grow unnoticed for several years.  There is no magic ‘five years/safe at home’ for kidney cancer patients, sad to say.

So, if your doctor tells you not to worry, that he got it all, that it was small, that there is no need for further monitoring, you might just find another doctor who keeps up with the kidney cancer literature.  If you got this far with this post, you may be ahead of your doctor.

Re the above risk stats, seehttp://www.cancertherapyadvisor.com/renal-cell-carcinoma/renal-cell-carcinoma-larger-tumors-high-grade-pathology/article/415189/

4 Comments

Filed under Guidelines, Newly Diagnosed, Patient Engagement, Patient Resources, RCC Basics, Uncategorized, Your Role

4 Responses to Kidney Tumors & Diagnosis? Size Matters–Big Surprise

  1. Toni Ladd

    Hi Peggy, It was just found incidentally from CT scan of my abdomen for diverticulitis that I have a 1.1 cm by 1.2 cm mass consistent with RCC in my right kidney. My family doctor was shocked because he thought it would be a cyst. I do have 2 cysts in my left kidney which look entirely different from the mass in right kidney. He sent a referral immediately to a urologic cancer surgeon who I will see on June 2. I get my care at OHSU in Portland Oregon. The mass was 1/2 the size a year ago when I had a CT for a perforated small intestine requiring emergency surgery. It was presumed last year to be a cyst so wasn’t followed up. I’m grateful that my abdomen CT was followed up a year after surgery due to some pain to find this mass at such a small size.

    I am nervous about this diagnosis and hope the surgeon will remove the mass and not choose to just watch it. From your knowledge do you know if this mass is too small to remove? I would be a nervous wreck if asked to watch this until it grows bigger.

    Any advice will be appreciated.

    Thank you,

    Toni Ladd
    Portland Oregon

    • Dear Toni,
      The very small mass in your kidney which is apparently different in appearance than what appear to be cysts on the other kidney is rightly a concern. First, your doctors are wise to send you on to the urologic cancer surgeon, as too many patients don’t get the proper follow up that you did. There is some evidence that some cysts do become more complex, moving up a scale which seems to show a shift into cancer. And despite how small this current mass seems, it can be removed. Once it is removed, there will be a pathology report, which will tell you what kind of kidney cancer it is. The most common is “clear cell renal cell carcinoma”, or ccRCC. That size tumor will put it in the lowest range of Stage I kidney cancer, and has an excellent chance of never causing any more trouble.

      There is a big, “however” in your particular situation, and one that should likely be addressed with an RCC oncologist. That is the fact of the existence of the other two cysts, and the fact that those are found essentially at the same time. These are likely simple cysts, but the troublesome one may have also been a simple cyst. The question to pursue is what changed with the single one, why are you getting any cysts at all, how does your age play into this, and how will you be monitored in regard to this whole situation? Current guidelines recommend getting a genetic workup when kidney cancer is found in people under 46 years of age. THat is extremely young for RCC, though the more frequent use of CTs may be finding tumors earlier, which sets up a another discussion as to why we consider a 7cm tumor to be ‘small’. In younger patients, it is possible that there is a hereditary tendency to develop cysts which can become cancerous. Von Hippel Lindau syndrome patients have this likelihood, and an understanding of those inherited tendencies led to undestanding of the gene mutations and the role they can play in creating kidney cancer. Similar, non-inherited mutations can lead to kidney cancer just by sheer accident, out of the blue, due to aging, environmental insults and so on.

      If there is any history of kidney cancer in your family, or cysts, and especially bi-lateral ones in the kidneys,or if you are quite young, INSIST on getting a thorough genetic workup. This is the way you can prepare, should there be a special need for extra monitoring and from there make a decision whether you have a greater risk of recurrence.

      Hoping you get a thorough and careful review of your case, and you can be helpful if you can elicit any family history of cysts and /or cancer.

      SEnding you my best,
      Peggy

      • Toni Ladd

        Peggy, Thank you for all this information. It gives me much to talk over with my doctors. I am so thankful that I live in Portland and already get all my health care at OHSU. I am also not too far from Seattle with their top notch cancer specialists if need be.
        I am 61. My parents both had cancer. Mom, bladder cancer when she was 87. But she passed with COPD. My Dad died of colon cancer at age 68. His mother, my grandmother died of colon cancer at age 41. I have a cousin left on my Dad’s side I can ask about kidney cancer or cysts. No one left on my Mom’s side but I know that history and no kidney trouble at all

        Have you heard of Bence-Jones proteins? They are made in plasma cells usually by people with multiple myeloma or can be made by those with inflammatory arthritis conditions. I have psoriatic arthritis. What they do is really damage your kidneys. The ratio between the two kinds kappa and lamba is a tumor marker for myeloma. I have high kappa with my ratio elevated in about 1/2 the times it is checked. I was followed by a hematologist for 3 years to check for myeloma but proteins stayed to small amount. I told her I had RCC and now she wants to follow me again. Have you ever heard of pts. with RCC ever having these? Another item to talk over with the doctors.

        Thanks again for the info. Thankfully my wait is almost over and I see the surgeon next Thursday, June 2.

        Toni Ladd

  2. Toni Ladd

    I was just diagnosed with a small RCC mass measuring 1.2 cm by 1.1 cm. I’m nervous that my urologic cancer surgeon may say to not remove it but watch and see. Is this possible? I would be so nervous with that option.

    I thought I left another comment but don’t see it. Please forgive me if you get 2.

    Your insight would be appreciated.

    Sincerely,

    Toni Ladd
    Portland Oregon

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