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/

11 Comments

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

11 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

  3. Sue Steinfeldt

    Peggy, thank you so much for all of the info on this page. After reading the above I found myself going yes, that what I was thinking. I was recently diagnosed with stage II, pT2b to be exact. The tumor was 11cm x10.2cm x 10cm. Dr says yes, I got it all and it was confined to the right kidney (which was removed). So I guess what I’m looking for is information on reoccurrence rates for tumors this size. It just doesn’t make sense to me that I’m only being followed by my urologist surgeon and with a chest x-ray and abd CT ar 6 months. Maybe I’m just crazy but it would sure seem to me that I would be a little higher risk than a person with a 3cm tumor. If you have any info or insight it would really help me.

    Thanks

    Sue Steinfeldt

  4. Tom Woods

    HI, I just found out that I have a 9.2 cm tumor on my right kidney. I am only 45. They want to do surgery and take the kidney out but I am in between jobs and felt healthy enough to go off of good health care coverage, now I am scrambling to get some kind of coverage. What led me to this article was me trying to figure out if 9.2 cm is more likely already metastasized. The CT scan did not show any other problems in other areas, so hopefully it is still contained. If I knew it was already spreading I would probably not bother with the kidney removal because I do not want to go through ongoing treatment for months or years. Are there any opinions or resources that can help determine how bad 9.2cm is?

  5. Edward Loder

    A couple of weeks ago I went to the local ER after having dealt with pain in under my left rib cage shooting toward my back for about 5 days. after first ruling out a heart issue I was sent for an abdominal CT with and without contrast. At this point given my rudimentary knowledge of anatomy I was thinking possibly a spleen or pancreas issue, maybe some sort of infection. They were running a full blood panel as well.

    The doctor returned about an hour later with news. “We couldn’t see anything wrong with your left side, everything looked normal, so we’re not sure what is causing your pain. However as an incidental finding the CT found a small mass on your RIGHT kidney. It’s probably just a cyst, but you should have your primary care doctor refer you for an ultrasound so they can be sure. I asked if I could have a copy of the reports and was told I would have to wait for a couple days.

    Of course in the days of prevalent cancer diagnoses the word “mass” tweaked my radar a little and a quick internet search revealed that yes most incidental small masses without any other symptoms are cysts. It so happened that I had an appointment with my primary care doctor as a routine follow up for something else in a couple days anyway. So I wasn’t yet concerned. Upon reflection though I can say that my primary care doctor, whom I like very much, looked a bit more concerned than usual. My ultrasound was scheduled for the following week.

    As luck would have it, I was walking down the hall to radiology and noticed a sign on a nearby door that said medical records. I put that in the back of my mind. During the procedure the tech was pretty quiet and there were a lot of cool “pew pew” sounds that seemed to take place each time she took a still shot. I was asked to move into a few different positions. A couple of times when I glanced over I could see the tech drawing lines with the mouse which seemed to my untrained eye like she was taking measurements. She finished up, helped me wipe goo off my abdomen and flank and wished me good luck.

    On the way out I stopped at medical records. Having some experience with doctors a few years back I learned the importance of reading your own records. It takes a little research and time to become medically savvy enough to translate some of the more complex terminology but with a little effort you learn to get the gist. However it turns out I didn’t need to be a rocket scientist to glean the meaning from this single page document.

    “Mixed solid and cystic lesion on the right kidney measuring 4.1 x 4.1 cm. Findings are worrisome for renal neoplasm. Consider further characterization with renal ultrasound or elective three phase CT.” Then a bit further down in caps “RENAL MASS APPEARS PARTIALLY SOLID AND PARTIALLY CYSTIC. COULD NOT EXCLUDE RENAL MALIGNANCY.”

    Well that didn’t sound particularly encouraging. Now I knew why I was going for an ultrasound. Further research told me that 80% of such masses turn out to be malignant. (Bad news). However when found early and confined to the kidney usually surgery was curative. (Good news). But (there’s always a but) needle biopsy of the kidneys had a not so great rate of false negatives and there was a possibility of “tumor seeding”- where the biopsy needle accidentally leaves malignant cells in it’s track on the way out and actually spreads the cancer. Thus the safest way to determine the pathology of the mass is to have surgery either way. (BAD NEWS).

    A couple days later my primary care doctor called. His voice held much of the same concern his eyes had held during our previous appointment. “So,” he said “the ultrasound wasn’t really all that helpful and I think we need to hand this off to a urologist.” There was some discussion about where I wanted to go and I insisted on a medical practice affiliated not with the local hospital, but with a regional hospital I knew gave excellent care. My reasoning was that on the off chance I did need surgery I wanted a doctor affiliated with a hospital that I would feel comfortable having surgery in. My doctor readily agreed which, in hindsight, should have been another red flag.

    It so happened that when my doctor called me I was a couple miles from the hospital where I had had both procedures. So back I went to the nice ladies in medical records. “Are you sure you just want the report and not the images?” the woman asked, a note of motherly concern in her voice. It seems I was, at this point, just willfully ignoring the red flags. I left the office and read the report as I walked down the hall. “Complex primarily solid of the upper pole right kidney measuring 4.3 cm with some vascularity at color Doppler worrisome for renal neoplasm. FINDINGS WOULD BE CONSISTENT WITH A BOSNIAK TYPE 3 LESION. Now I knew why I was headed for a urologist.

    I have read everything I could get my hands on. A Bosniak type III lesion is one step better than the last type IV category which are always 100% malignant. The type III is still not definitive for malignancy but such lesions are malignant a majority of the time. And while they call 4.3 cm a “small tumor” it turns out that’s almost exactly the size of a golf ball. It also turns out that 3 cm not great but 4 cm is the cutoff from not so great to bad.

    As you have written here size matters and the chances of a mass being malignant increases dramatically between 3 and 4 cm. Also crossing that line above 4 cm is the cut off between partial nephrectomy and full or even radical nephrectomy as best treatment options. At 4 cm active surveillance or “watchful waiting” is NOT an option. Nor it seems is ablation as long as my other kidney is healthy which it seems to be. Leaving me with a dizzying array of decisions including open nephrectomy, laparoscopic, or robot assisted surgeries. And being that 4.3 cm is at the lower end of the 4-7 cm worry point, do I take a chance and do a partial or be as certain as possible against recurrence and metastasis and do a radical nephrectomy which is the standard of care?

    While the reports have alluded to it, no medical professional has said the word cancer to me yet. Given your wealth of research am I getting ahead of myself or is there a very slim chance of this not being malignant? And nearly NO chance that I am going to be safely able to consider any option other than surgery to even find out the pathology anyway?

    A side note: I read with interest your tale about the first urologist you were referred to having nothing about kidney cancer experience on their website. The first practice my primary care doctor referred me to, not one of their doctors had a special interest in kidney cancer and nowhere on their site did they make mention of kidney surgery as a service they offered. In particular the doctor they offered me an appointment with mostly specialized in vaginal reconstruction. As a male this did not much interest me. I did a little research and got an appointment with the head of a nearby practice who specializes in renal oncology, has a lot of experience with all of the surgical options including robot assisted, and was the chair of urology at the hospital I have chosen. I’m going with him. I see him on Tuesday. Well meaning friends tell me to hope for good news with which to celebrate my 49th birthday which will take place 2 days later. But from all I have read, that doesn’t seem likely.

    Sorry for the length of this but it was a bit cathartic to get it out and I would like to hear your thoughts.

  6. Lisa Thomas

    Hi Peggy , I have sat for hours reading all of your incredible research . My husband has been diagnosed with RCC stage 4 due to it has metastasized to his left lung and one lymph node . He just started his 4th month on Sutent. We live in Oklahoma and our resources are very limited to specialist in this field in Tulsa or Oklahoma City . When you try to find a specialist in RCC by googling all of these clinics and hospitals will pop up but after reading they actually trick you to click on there site as they truly do not specialize . Do you know of the best way to navigate to a specialist such as a website that might direct us . I’m sorry to ask you as I know this question is very broad . Thank You for your time and all the intensive research you have done . Lisa

  7. Wayne Eads

    Peggy, thanks again for posting all this information. I had a partial nephrectomy on the right kidney. The pathology report says there was a 2.5 cm mass, RCC mostly grade 1 but the presence of some more defined nuclei raises it to grade 2 (I think the surgeon was surprized and was expecting grade 1), primary tumor is identified as: pT1a pNX. I have a CT scan ordered in 3 months but didn’t hear it was a full body scan, I have these questions:
    Is a full body scan needed this soon?
    Is a bone scan different from the CT scan?
    How soon I should see an oncologist?

    • Dear Wade,
      I do want to reassure you that the size of your mass is really quite small–except to you, of course–and there is an excellent change that you will not need to worry. BUT–notice that it is a big “BUT”–I have a simple rule re cancer.

      If you have a cancer, go to a doctor who is a cancer doctor. He may be simply reassuring, or amused that you are worried. BUT, anytime a growth that doesn’t belong in or on a person’s organ, and the growth and any part of the organ is cut out, that is a signal to see an oncologist.

      THe urologist’s who usually will do surgery may think that this is unnecessary, BUT he would probably send his brother, wife, self to an oncologist, ‘just in case’. You be that ‘case’, and learn a bit more about the disease, whether or not the oncologist knows anything about kidney cancer, and what he would advise should this thing return in any way.

      If you are younger than 46 or so, then it is even more important to do the above, as kidney cancer is a generally an older person’s disease, maybe in the sixties. With better and more frequent imaging, smaller tumors, like yours are found more often, but still are rare in younger people. That finding can be a clue that something familiar is up, or that you have an out of the blue greater tendency to grow these things. In any case, you want to stay ahead of it, and plan to keep as much of your kidney(S) for many, many years.

      As to the scan, it would likely be unnecessary, and the bone scan is indeed different. A new rule to follow is that when you have some health problem in the coming years, and it doesn’t seem to clear up as expected or acts up unexpectedly, then you start wondering if it is the cancer. If you are slightly crazy or have had a large tumor and lung mets, as I did, then you may overreact at the cold or flu or ache, but let the normal course of events guide you. Better safe than sorry, and be appreciative of the researchers who are working on our behalf!
      Peggy

      • Wayne Eads

        Thank you Peggy!
        I have read your rule on some other posts and think it is a good one. If you lose part of an organ to cancer, you need to see a specialist. My next task will be to locate one who specialized in kidney cancer (Note: I had a malignant melanoma removed in 2000, so this is my second bout with cancer). I will keep reading your posts and blog.
        Sincerely,
        Wayne Eads

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