Am I paranoid

leet60

Let me preface with some basic information. I am 52 years old, male, former long time smoker. I have in the past year been placed under initial treatement for tachycardia (unknown origin), mild HBP and have experienced two instances of TIA (mini strokes).  While hospitalized in April a small renal mass was discovered by CT Scan with contrast in the "upper pole left kidney".  The local urologist (we have only one here) saw me briefly in the hospital and indicated he thought it was not of concern and placed me on antibiotics for one month and I received a follow up appointment. At the follow up appointment I had an US done and basically was told to ignore the mass.

Fast forward to November, in the ER for Right lower side pain - the ER doctor did another CT with contrast to rule out appendicitis (which was ruled out) - incidentally reported by the radioligist that the mass had "changed since April scan" and showed to be hypervascular - and to quote "this is considered renal cell carcinoma until proven otherwise".  The ER doctor advised because of the change from the previous scan I should see a Nephrologist.  The local nephrologist indicated I had approximately 70% kidney function and that the mass had to be evaluated by a urologist as she "didn't do that"???

As I refuse to return to the local urologist I am waiting for a referral to one out of town at a reputable university hospital.  The mass was NOT detected on a non contrast CT scan in January. Initially it appeared in a CT scan with contrast in April (that report also indicated by the radioligist "may be malignant - ignored by urologist), the final report indicating it had changed. It measures only 1 - 1.5 CM at the time of the scan.

I find widely diverse information on the internet in regard to small masses - ranging from they can be "observed" to they need to be addressed immediately. As I am beginning to develop health issues in the last year I have a fair amount of concern about this.

I do not want to wait until I am "symptomatic" and take the chance the cancer has spread.  With the mass being this small, would those of you who have experienced this disease think it should be ignored?

 

icemantoo

Follow up

Lee, This is not something to play around with. At 1.5 cm if it is or appears to be Kidney Cancer it should be removed. It is already apparently effecting your kidney function. Given its small size the cure rate from removal alone is close to 100% with other options possibly being available. A Urologist not involved with Kidney Cancer is barely more than a GP. In your small town setting I would seek a referral to a Surgeon pending an appointment with a University Hospital. While the surgery is not fun, all of us on this board have either had it or are awaiting it. Mine was 10 and 1/2 years ago. Do not wait for the tumor to grow. Icemantoo

icemantoo

Follow up

Lee, This is not something to play around with. At 1.5 cm if it is or appears to be Kidney Cancer it should be removed. It is already apparently effecting your kidney function. Given its small size the cure rate from removal alone is close to 100% with other options possibly being available. A Urologist not involved with Kidney Cancer is barely more than a GP. In your small town setting I would seek a referral to a Surgeon pending an appointment with a University Hospital. While the surgery is not fun, all of us on this board have either had it or are awaiting it. Mine was 10 and 1/2 years ago. Do not wait for the tumor to grow. Icemantoo

icemantoo

Follow up

Lee, This is not something to play around with. At 1.5 cm if it is or appears to be Kidney Cancer it should be removed. It is already apparently effecting your kidney function. Given its small size the cure rate from removal alone is close to 100% with other options possibly being available. A Urologist not involved with Kidney Cancer is barely more than a GP. In your small town setting I would seek a referral to a Surgeon pending an appointment with a University Hospital. While the surgery is not fun, all of us on this board have either had it or are awaiting it. Mine was 10 and 1/2 years ago. Do not wait for the tumor to grow. Icemantoo

icemantoo

Follow up

Lee, This is not something to play around with. At 1.5 cm if it is or appears to be Kidney Cancer it should be removed. It is already apparently effecting your kidney function. Given its small size the cure rate from removal alone is close to 100% with other options possibly being available. A Urologist not involved with Kidney Cancer is barely more than a GP. In your small town setting I would seek a referral to a Surgeon pending an appointment with a University Hospital. While the surgery is not fun, all of us on this board have either had it or are awaiting it. Mine was 10 and 1/2 years ago. Do not wait for the tumor to grow. Icemantoo

icemantoo

Follow up

Lee, This is not something to play around with. At 1.5 cm if it is or appears to be Kidney Cancer it should be removed. It is already apparently effecting your kidney function. Given its small size the cure rate from removal alone is close to 100% with other options possibly being available. A Urologist not involved with Kidney Cancer is barely more than a GP. In your small town setting I would seek a referral to a Surgeon pending an appointment with a University Hospital. While the surgery is not fun, all of us on this board have either had it or are awaiting it. Mine was 10 and 1/2 years ago. Do not wait for the tumor to grow. Icemantoo

dhs1963

If I am reading what you said, your mass is small

I am reading your mass is about 1.5 cm.  That is small.  Small enough that monitoring the mass might be the appropriate action.  As you are relatively young for RCC, had anyone else in your family had kidney cancer?  The reason is, according to the national institute for health, treatment differs for spontainous cancer compared with familial.  With familial kidney cancer, the goal is to leave as much of the kidney in place whereas spontaious cancer, the goal is to get rid of the cancer.  (This was explained to me at NIH).  The difference is the expectation that I (as a familial kidney cancer) probably will get additional tumors in the future.

With familial kidney cancer, NIH advises against surgery for tumors less than 3 cm.  THat size is used because they have never seen a Met from a tumor less than 4 cm.  

 

You do not say where you live.  I assume it is in a smallish town, as there is only one urologist.  This may be worth traving to a city for further evaluation.

leet60

Thanks for the comments

I thanks followup and DHS1963 for their input.  As can be seen the opinions of how concerned I should be are diametrically opposed. This is what I have found on the internet as well. Many "expert" sites indicating that one should "wait and observe" and others indicating that small masses should be dealt with immediately as once symptomatic they are much more involved.

My health issues that have presented themselves over the past year are a chief reason for my concern. I would prefer to have the "mass" addressed and treated, rather than wait and find myself seeking treatment when my health is worse. All my research to date indicates this is a "silent" cancer in early stages and once symptomatic has generally spread beyond the kidney. I am anxious for my appointment as I am experiencing more than a bit of anxiety over this condition.

I do not have a familial history of RCC, although my father succumbed to lung cancer in 1969 and my mother is a breast cancer survivor.

 

icemantoo

leet60 said:

Thanks for the comments

I thanks followup and DHS1963 for their input.  As can be seen the opinions of how concerned I should be are diametrically opposed. This is what I have found on the internet as well. Many "expert" sites indicating that one should "wait and observe" and others indicating that small masses should be dealt with immediately as once symptomatic they are much more involved.

My health issues that have presented themselves over the past year are a chief reason for my concern. I would prefer to have the "mass" addressed and treated, rather than wait and find myself seeking treatment when my health is worse. All my research to date indicates this is a "silent" cancer in early stages and once symptomatic has generally spread beyond the kidney. I am anxious for my appointment as I am experiencing more than a bit of anxiety over this condition.

I do not have a familial history of RCC, although my father succumbed to lung cancer in 1969 and my mother is a breast cancer survivor.

 

More than one opinion

Lee,

 

DHS and myself are only giving opinions based upon our experience. Take each one with a

grain of salt until you are examined by a doctor who treats Kidney Cancer.

Icemantoo

dhs1963

icemantoo said:

More than one opinion

Lee,

 

DHS and myself are only giving opinions based upon our experience. Take each one with a

grain of salt until you are examined by a doctor who treats Kidney Cancer.

Icemantoo

Not that different, I am talking about familial

Familial kidney cancer has different treatments.  Most Dr.'s do not know that, as 94-96% are not familial.  

For sporadic cancer, get it out.  But find a Dr that understands kidney cancer.  And my question remains, did either of your parents aunts, uncles (by blood), grandparents or siblings have kidney cancer?  If yes, then find someone that understands the potential genetic aspects.

My question will always start with other family members with the disease, mostly because that is the way my disease is.  My dad and grandfather had RCC.  Mine is most certainly genertic.

 

Lee is getting it at an early age (52), but he smoked - which is a risk factor.  

leet60

dhs1963 said:

Not that different, I am talking about familial

Familial kidney cancer has different treatments.  Most Dr.'s do not know that, as 94-96% are not familial.  

For sporadic cancer, get it out.  But find a Dr that understands kidney cancer.  And my question remains, did either of your parents aunts, uncles (by blood), grandparents or siblings have kidney cancer?  If yes, then find someone that understands the potential genetic aspects.

My question will always start with other family members with the disease, mostly because that is the way my disease is.  My dad and grandfather had RCC.  Mine is most certainly genertic.

 

Lee is getting it at an early age (52), but he smoked - which is a risk factor.  

Thanks DHS1963

Thanks for the reply. I suppose the big "C" word has me plagued with anxiety. I have no family history of kidney cancer.  I suppose my frustration is from having a nephrologist that summarily put me off and told me to see the urologist.  On my visit with our small town urologist initially I felt as if I was not examined in any way, found him very offputting and felt like I was subjected to "assembly line collect the insurance" medicine.  I will keep everyone updated. Thanks again.

MedScanMan

leet60 said:

Thanks DHS1963

Thanks for the reply. I suppose the big "C" word has me plagued with anxiety. I have no family history of kidney cancer.  I suppose my frustration is from having a nephrologist that summarily put me off and told me to see the urologist.  On my visit with our small town urologist initially I felt as if I was not examined in any way, found him very offputting and felt like I was subjected to "assembly line collect the insurance" medicine.  I will keep everyone updated. Thanks again.

Your Report

As I refuse to return to the local urologist I am waiting for a referral to one out of town at a reputable university hospital.  The mass was NOT detected on a non contrast CT scan in January. Initially it appeared in a CT scan with contrast in April (that report also indicated by the radioligist "may be malignant - ignored by urologist), the final report indicating it had changed. It measures only 1 - 1.5 CM at the time of the scan.

 

Hi........................I copied and pasted the only part of your original post that medically means anything.  In January when you had a CT scan with no contrast the mass was certainly there.  It was probably just under 1cm and because the Radiologist had no way of knowing if it was RCC,  he or she probably just passed over it with no mention thinking it was a simple cyst.  With no contrast and at that size that's all it would appear to be.  In April when you had your CT done properly......with contrast the Radiologist said it "might be malignant".  (A totally non ballsy call).....if you'll excuse me.  I'm not sure where you live, or how the healthcare facilities are in your neck of the woods, but with an enhanced CT scan there should be no maybes in the report.  Once the technologist did his ROI measurement showing how many hounsfield units it measured on the delayed images.....if it stayed enhanced then the call from the Radiologist should have been a definite call....either yes or no.  I hate when they do this, leaving the patient up in the air and not knowing what to think.  Is there any way you can type here the full impression at the bottom of your CT report?  The one with contrast.  If the just under 2cm mass measures like I think it has, you need to have it taken out.  Great thing for you is that it seems to be in the upper pole of the kidney making you a great candidate for a laparoscopic partial nephrectomy.  As all the pros on this board can tell you your recoup time will be much easier.  Why you went to a Nephrologist at this time, I don't get.  I think most would agree that you need to find yourself a good Urology Oncologist and get this behind you.

 

Jeff

dhs1963

MedScanMan said:

Your Report

As I refuse to return to the local urologist I am waiting for a referral to one out of town at a reputable university hospital.  The mass was NOT detected on a non contrast CT scan in January. Initially it appeared in a CT scan with contrast in April (that report also indicated by the radioligist "may be malignant - ignored by urologist), the final report indicating it had changed. It measures only 1 - 1.5 CM at the time of the scan.

 

Hi........................I copied and pasted the only part of your original post that medically means anything.  In January when you had a CT scan with no contrast the mass was certainly there.  It was probably just under 1cm and because the Radiologist had no way of knowing if it was RCC,  he or she probably just passed over it with no mention thinking it was a simple cyst.  With no contrast and at that size that's all it would appear to be.  In April when you had your CT done properly......with contrast the Radiologist said it "might be malignant".  (A totally non ballsy call).....if you'll excuse me.  I'm not sure where you live, or how the healthcare facilities are in your neck of the woods, but with an enhanced CT scan there should be no maybes in the report.  Once the technologist did his ROI measurement showing how many hounsfield units it measured on the delayed images.....if it stayed enhanced then the call from the Radiologist should have been a definite call....either yes or no.  I hate when they do this, leaving the patient up in the air and not knowing what to think.  Is there any way you can type here the full impression at the bottom of your CT report?  The one with contrast.  If the just under 2cm mass measures like I think it has, you need to have it taken out.  Great thing for you is that it seems to be in the upper pole of the kidney making you a great candidate for a laparoscopic partial nephrectomy.  As all the pros on this board can tell you your recoup time will be much easier.  Why you went to a Nephrologist at this time, I don't get.  I think most would agree that you need to find yourself a good Urology Oncologist and get this behind you.

 

Jeff

There is not really any disagreement in treatment

If there is no family history of kidney cancer, you want the tumor out when it is small.  Much less of the kidney is involved, and you probably will be cured with just surgery.  As for the imagery, medscanman knows what he is talking about.  Icemantoo has a lot of experience.  I was only mentioning that, if there is a family history, there are somewhat different protocols.  That does not matter in your case.

 

Find a Urological Oncologist.  THe surgery is a big deal.  Anyone that tells you differently has not had the surgery, or was really lucky.

 

It is really frustrating when the "experts" aka Dr.'s give you strange advice.  I also question going to a nephrologist.  After surgery, maybe.  I am going to one, only because my kidney output is now sub-optimal (for example, I can not have contrast on the CT scans).

 

The takeaway is that you may have kidney cancer.  Only an expert can say for sure, and only after the tumor is removed (path report).  However, if the cancer has not spread, you are most likely cured with just surgery, given the size of your tumor.

Texas_wedge

leet60 said:

Thanks DHS1963

Thanks for the reply. I suppose the big "C" word has me plagued with anxiety. I have no family history of kidney cancer.  I suppose my frustration is from having a nephrologist that summarily put me off and told me to see the urologist.  On my visit with our small town urologist initially I felt as if I was not examined in any way, found him very offputting and felt like I was subjected to "assembly line collect the insurance" medicine.  I will keep everyone updated. Thanks again.

Choice of procedure

The whole weight of current expert opinion is that someone in your situation should not have surgery at this juncture, the correct  procedure being watch and wait, for many reasons, including the one that David (dhs1963) mentioned.  This does, however, require careful monitoring by people who know what they're doing and what they're looking for, almost certainly using CT with contrast (subject to your heart problems not contra-indicating the contrast dye).

You aren't being paranoid but your cardiac problems may well be more of a cause for concern than a tiny kidney mass, even if it is cancer, which it might not be.  However, although surgery at present would be considered irresponsible and unnecessary, it would not be sensible to simply ignore the mass - watch and wait for the time being. 

 

leet60

MedScanMan said:

Your Report

As I refuse to return to the local urologist I am waiting for a referral to one out of town at a reputable university hospital.  The mass was NOT detected on a non contrast CT scan in January. Initially it appeared in a CT scan with contrast in April (that report also indicated by the radioligist "may be malignant - ignored by urologist), the final report indicating it had changed. It measures only 1 - 1.5 CM at the time of the scan.

 

Hi........................I copied and pasted the only part of your original post that medically means anything.  In January when you had a CT scan with no contrast the mass was certainly there.  It was probably just under 1cm and because the Radiologist had no way of knowing if it was RCC,  he or she probably just passed over it with no mention thinking it was a simple cyst.  With no contrast and at that size that's all it would appear to be.  In April when you had your CT done properly......with contrast the Radiologist said it "might be malignant".  (A totally non ballsy call).....if you'll excuse me.  I'm not sure where you live, or how the healthcare facilities are in your neck of the woods, but with an enhanced CT scan there should be no maybes in the report.  Once the technologist did his ROI measurement showing how many hounsfield units it measured on the delayed images.....if it stayed enhanced then the call from the Radiologist should have been a definite call....either yes or no.  I hate when they do this, leaving the patient up in the air and not knowing what to think.  Is there any way you can type here the full impression at the bottom of your CT report?  The one with contrast.  If the just under 2cm mass measures like I think it has, you need to have it taken out.  Great thing for you is that it seems to be in the upper pole of the kidney making you a great candidate for a laparoscopic partial nephrectomy.  As all the pros on this board can tell you your recoup time will be much easier.  Why you went to a Nephrologist at this time, I don't get.  I think most would agree that you need to find yourself a good Urology Oncologist and get this behind you.

 

Jeff

Thank you

Your reply was very informative and I will try to find the report and update here as to what the information on the bottom of the report says. I appreciate your response.

leet60

Texas_wedge said:

Choice of procedure

The whole weight of current expert opinion is that someone in your situation should not have surgery at this juncture, the correct  procedure being watch and wait, for many reasons, including the one that David (dhs1963) mentioned.  This does, however, require careful monitoring by people who know what they're doing and what they're looking for, almost certainly using CT with contrast (subject to your heart problems not contra-indicating the contrast dye).

You aren't being paranoid but your cardiac problems may well be more of a cause for concern than a tiny kidney mass, even if it is cancer, which it might not be.  However, although surgery at present would be considered irresponsible and unnecessary, it would not be sensible to simply ignore the mass - watch and wait for the time being. 

 

Varying opinions

I did fairly wide research on this, and found the opinions varied widely.  While I acknowledge that much of the information online may be dated, I found both recommendations - that it be removed before it became symptomatic and that it should be actively monitored.

My concern is chiefly from the information I was able to glean that those cases actively monitored that did indeed grow over a period of time also had a fair percentage of having spread from the Kidney. I do have some confusion as to why one would want to wait when the averages I found indicated "40% are benign", mathematically this indicates more than half are of issue.

 

I appreciate your reply. I will update all with the report from the Urologist

dhs1963

leet60 said:

Varying opinions

I did fairly wide research on this, and found the opinions varied widely.  While I acknowledge that much of the information online may be dated, I found both recommendations - that it be removed before it became symptomatic and that it should be actively monitored.

My concern is chiefly from the information I was able to glean that those cases actively monitored that did indeed grow over a period of time also had a fair percentage of having spread from the Kidney. I do have some confusion as to why one would want to wait when the averages I found indicated "40% are benign", mathematically this indicates more than half are of issue.

 

I appreciate your reply. I will update all with the report from the Urologist

Find a urological oncologist

Most of us are only talking about our specific medical experience.  Everyone is different.  For example, with my 5.5 cm tumor, I was told that there was a 90% chance that it is malignent. I do not know the rules for the smaller masses. 

 

A urological oncologist should give better advice than we can. 

garym

dhs1963 said:

Find a urological oncologist

Most of us are only talking about our specific medical experience.  Everyone is different.  For example, with my 5.5 cm tumor, I was told that there was a 90% chance that it is malignent. I do not know the rules for the smaller masses. 

 

A urological oncologist should give better advice than we can. 

90%

I think I've read that the 90% factor kicks in at about the 3.0cm mark and a recommendation of watching smaller masses is becoming more accepted.  Mine was relatively small at 4.2cm, they said we could watch it for awhile, I said I want it out ASAP.  I don't regret my decision, but there are times I wish I had slowed things down a bit before making it.  My advice, take your time, at this stage it is very slow growing, consult with as many doctors as it takes, do some research on your own, and make a decision that you are most comfortable with, but deal with it while it is small, do not let symptoms present.

jennsam

40 year old female 3 mo post

40 year old female 4mo post op partial left nephrectomy 3cm ish clear cel RCC Grade 2

   I was having multiple problems for 2 years. We now know it was paraneoplastic syndrome. Basically my body's immune system did not like the cancer and I developed a crazy immune response to the cancer before knowing I had it

  My symptoms were extremly severe and i was hospitalized on a few occasions in that 2 years. I had intermittent episodes of high blood pressure( 210/120's) with tachycardia 130-140 at rest, flushing with fever, sweating, metallic taste in my mouth, GI symptoms...real nutty episodes. I thought perhaps panic attacks but the meds for panic didnt work.

After finding the tumor you can say my health was pretty crappy i even had a massive blood clot last year...they still said getting the cancer out outweighed my current health status. They couldnt promise the tumor coming out would stop these episodes but it has.

My point is no matter how crappy you think your health is please get a second opinion. I went to sloan kettering in NYC because my symptoms were so peculiar and I was very high risk surgical patient. I had a filter placed to block any new blood clots from going to lungs/ heart and I did very well. There is a wait and watch approach to kidney cancer so you need to find out the basis for why one doc would proceed with the surgery and perhaps another wait and observe. gather all your info so you can make the best decision, one you are comfortable with. I really wasnt given any choice it had to come out. I was lucky because it was a stage 2 and perhaps another year i would have a different story to tell.

The internet is ok for info but don't base your decision on anything but the info you get from your docs. Its a scary process to have to come through make sure you have a good support system and always bring someone with you to the doc visits