Big decision

sharnan
sharnan Member Posts: 10
Hello Everyone,
I hope someone can advise me please. I have had a 2.5cm tumor under surveillance for the past 18 months.I had my last CT scan last week which shows that it has not grown.
As I see my specialist on Monday, should I tell him to remove my kidney or just keep up with the watching and waiting.
It worries me that they cant tell if it is malignant or benign until it is removed and I don't particularly like having a tumor in my body.
At my last visit to the doctor he said he would remove it if I wanted him too, so that still left me up in the air.
I would be grateful for any advice.
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Comments

  • icemantoo
    icemantoo Member Posts: 3,360 Member
    My opinion
    Shaman,

    A lot depends on the type of tumor which you will have to discus with your doctor. Mine was clear cell and 2.6cm on the CT and when they took it out 2 months later it was 4.2cm. Did it grow? Maybe. Maybe, not. The CT is 3 dimensional and not alwasy accurate. At 2.5 cm the doctors may have other options than a full nepherectomy that he may not have when it gets larger. Why not seek a second opinion. At 2.5 cm it is either malignant or wil become malignant. My opinion, go for it.

    Best wishes,

    Icemantoo
  • MikeK703
    MikeK703 Member Posts: 235
    Options?
    Hi Sharnan,
    Has your doctor discussed the biopsy option with you? It's something you should ask about although many doctors don't like to do it because of the risk that during the procedure they could spread a cancer or get a false negative. But it is something to consider rather than just sitting and waiting. Search the internet for "kidney cancer biopsy" to learn about it. Here is something to start you off:

    http://www.kidneycancerinstitute.com/biopsy.html

    Mike
  • Michael6701
    Michael6701 Member Posts: 26
    Tumor Decision
    I would definitely get a 2nd opinion. I live in a small town and over several years I had several CT scans and ultrasounds, most of them for other purposes, and each time they described a mass on the upper lobe of my right kidney as a "simple cyst", that they said was incapable of becoming a cancer. It kept growing from 2.8 to 4.3 but the diagnosis was always the same. But it was not until I, on my own initiative, sought out a 2nd opinion from a big city surgical oncologist that I found out it was a IV on the Bozniak scale, and most probably a cancer. I had it removed and the pathology confirmed that it was a 5 cm stage 1, grade III papillary cancer, the same as what killed 3 of my siblings.

    That's not intended as a scare. The fact that your tumor has not grown is a good sign, but it doesn't hurt to get another opinion from an expert.
  • sharnan
    sharnan Member Posts: 10

    Tumor Decision
    I would definitely get a 2nd opinion. I live in a small town and over several years I had several CT scans and ultrasounds, most of them for other purposes, and each time they described a mass on the upper lobe of my right kidney as a "simple cyst", that they said was incapable of becoming a cancer. It kept growing from 2.8 to 4.3 but the diagnosis was always the same. But it was not until I, on my own initiative, sought out a 2nd opinion from a big city surgical oncologist that I found out it was a IV on the Bozniak scale, and most probably a cancer. I had it removed and the pathology confirmed that it was a 5 cm stage 1, grade III papillary cancer, the same as what killed 3 of my siblings.

    That's not intended as a scare. The fact that your tumor has not grown is a good sign, but it doesn't hurt to get another opinion from an expert.

    Thank you all for your
    Thank you all for your advice. I had read about biopsies of the tumor not being very trustworthy and my specialist hasn't even mentioned this to me.
    I will see him on Monday, find out what the report of my scan is and then maybe we will make a decision as to what to do. I do know that I really don't want to be kept under surveillance for "however long".
    I will let you know how I go.
    Thank you all again
  • lawmanmike
    lawmanmike Member Posts: 29
    sharnan said:

    Thank you all for your
    Thank you all for your advice. I had read about biopsies of the tumor not being very trustworthy and my specialist hasn't even mentioned this to me.
    I will see him on Monday, find out what the report of my scan is and then maybe we will make a decision as to what to do. I do know that I really don't want to be kept under surveillance for "however long".
    I will let you know how I go.
    Thank you all again

    My advice
    Hi Sharnan. I had a similar decision to make not too long ago. My tumor was discovered in the fall after a follow up MRI to my back (I was in a car accident in 2010). This recent MRI picked up the tumor and when they went back to look at the first MRI I had after the accident in 2010 they were able to visualize it there and determined that it hadn't grown in the 16 months that lapsed between the two MRI's. I discussed all options with my Urologic Oncologist (who I love and trust!) and he said we could monitor it to see what happens if I was afraid of surgery or unable to have surgery for some other reason, but said it was his opinion it should come out now before it has a chance to metastize. Mine was identified as a solid mass and while there was a small chance it could be a benign oncocytoma - that was very unlikely and even that could be "precancerous". I opted to remove it now when I am young and healthy and there are no signs of it spreading. I did some research on my own and found one study where an older woman had the same diagnosis and opted not to have it removed (because she was 85 and had other health concerns) but it was the kidney cancer that ultimately ended her life about 8 years later when it mets to her lungs, spleen and pelvis. In the words of Shrek - better out than in! That's just my personal opinion. Best of luck!
  • sharnan
    sharnan Member Posts: 10

    My advice
    Hi Sharnan. I had a similar decision to make not too long ago. My tumor was discovered in the fall after a follow up MRI to my back (I was in a car accident in 2010). This recent MRI picked up the tumor and when they went back to look at the first MRI I had after the accident in 2010 they were able to visualize it there and determined that it hadn't grown in the 16 months that lapsed between the two MRI's. I discussed all options with my Urologic Oncologist (who I love and trust!) and he said we could monitor it to see what happens if I was afraid of surgery or unable to have surgery for some other reason, but said it was his opinion it should come out now before it has a chance to metastize. Mine was identified as a solid mass and while there was a small chance it could be a benign oncocytoma - that was very unlikely and even that could be "precancerous". I opted to remove it now when I am young and healthy and there are no signs of it spreading. I did some research on my own and found one study where an older woman had the same diagnosis and opted not to have it removed (because she was 85 and had other health concerns) but it was the kidney cancer that ultimately ended her life about 8 years later when it mets to her lungs, spleen and pelvis. In the words of Shrek - better out than in! That's just my personal opinion. Best of luck!

    No change
    Hello all,
    Well I saw the Urologist on Monday, scans came back that the tumor hasn't grown so now he wants me to follow up with US in August. (another 6 months of waiting).
    Silly question I know, but do Kidney Tumors grow slowly or has everyone seen the difference in the size change over time.
    Thank you
  • lawmanmike
    lawmanmike Member Posts: 29
    sharnan said:

    No change
    Hello all,
    Well I saw the Urologist on Monday, scans came back that the tumor hasn't grown so now he wants me to follow up with US in August. (another 6 months of waiting).
    Silly question I know, but do Kidney Tumors grow slowly or has everyone seen the difference in the size change over time.
    Thank you

    I'm not a doctor...
    But as it was explained to me they can grow at very different rates. There are different forms of kidney cancer and they can act differently in different people. My doctor told me some grow as slowly as 1-2 millimeters per year...but that's not the only concern because the cells can grown more aggressive even within a small tumor so, in the words of my doctor, they can blow up into a bigger problem even if the physical size of the tumor doesn't change much. A tumor doesn't need to be huge to metastisize.

    Personally, unless you are avoiding surgery because you have other health concerns and can't have surgery or something else is going on - I would want it out and would be looking for a second opinion on whether it should be removed or monitored.

    Good luck to you!
  • garym
    garym Member Posts: 1,647

    I'm not a doctor...
    But as it was explained to me they can grow at very different rates. There are different forms of kidney cancer and they can act differently in different people. My doctor told me some grow as slowly as 1-2 millimeters per year...but that's not the only concern because the cells can grown more aggressive even within a small tumor so, in the words of my doctor, they can blow up into a bigger problem even if the physical size of the tumor doesn't change much. A tumor doesn't need to be huge to metastisize.

    Personally, unless you are avoiding surgery because you have other health concerns and can't have surgery or something else is going on - I would want it out and would be looking for a second opinion on whether it should be removed or monitored.

    Good luck to you!

    Just my opinion...
    Sharnan,

    To me, the benefits of removing it now while it is small and the surgery slightly easier outweigh waiting and wondering even if it turns out not to be cancer. It is constantly haunting you and ruling your life. It is likely you could have a partial, laprascopic nephrectomy and in a few short weeks never have to think about it again. If it did turn out to be RCC so much the better to get it out early, you come out ahead either way. The surgery and recovery aren't fun, but short term pain equals long term gain.

    Just my opinion,

    Gary
  • sharnan
    sharnan Member Posts: 10
    garym said:

    Just my opinion...
    Sharnan,

    To me, the benefits of removing it now while it is small and the surgery slightly easier outweigh waiting and wondering even if it turns out not to be cancer. It is constantly haunting you and ruling your life. It is likely you could have a partial, laprascopic nephrectomy and in a few short weeks never have to think about it again. If it did turn out to be RCC so much the better to get it out early, you come out ahead either way. The surgery and recovery aren't fun, but short term pain equals long term gain.

    Just my opinion,

    Gary

    Thank you Gary and Mike,

    Thank you Gary and Mike,
    I will wait until this 6 months monitoring is up (in August)and then have a really good talk to the Dr. If I am not satisfied then I will definitely seek a second opinion. I do know that my Uro is highly regarded and I am comfortable with him.

    Thank you again
    Rose
  • newenglandguy
    newenglandguy Member Posts: 66
    sharnan said:

    Thank you Gary and Mike,

    Thank you Gary and Mike,
    I will wait until this 6 months monitoring is up (in August)and then have a really good talk to the Dr. If I am not satisfied then I will definitely seek a second opinion. I do know that my Uro is highly regarded and I am comfortable with him.

    Thank you again
    Rose

    To you comment - " my Uro is
    To you comment - " my Uro is highly regarded" - keep in mind he's a Urologist and not a Nephrologist nor a Oncologist with expertise in RCC. What's wrong with a second opinion now?
  • foxhd
    foxhd Member Posts: 3,181

    To you comment - " my Uro is
    To you comment - " my Uro is highly regarded" - keep in mind he's a Urologist and not a Nephrologist nor a Oncologist with expertise in RCC. What's wrong with a second opinion now?

    opion numero 2
    ..what newenglandguy says. I'll bet you can afford a couple hours and a co-pay.
  • One Lucky Girl
    One Lucky Girl Member Posts: 68
    Second, third & fourth opinion
    Dear Sharnan,

    I had a 1.9 cm mass removed from my upper left kidney two weeks ago. On the day that I got my MRI results, I saw a nephrologist and 2 urologists. The following day I sought yet another opinion from the (3rd) urologist, whom I selected to do my surgery. The first nephrologist and urologist told me I needed open surgery. Why? Because they worked as a team and the urologist wasn't trained in laparoscopic surgery. They told me I would have to travel to the USA to get laparoscopic surgery (I live in Switzerland). Turns out they had highly-skilled surgeons and the latest Da Vinci technology right in their own hospital!

    I then consulted with two urologists (both heads of department at their respective hospitals) who did laparoscopic Da Vinci assisted surgery. This surgery spared my kidney -- my left is still as big as the right. The growth they thought was a benign oncocytoma turned out to be malignant RCC. The fact that I had it removed when it was still so small (Stage 1) means that I have an excellent chance that I am already totally cured.

    Two weeks post op I am feeling really well and am very glad the tumour is out. Don't be afraid to seek out other opinions -- it's your body and you have to live in it for the rest of your life.
  • livealive
    livealive Member Posts: 127
    Big decision - Small Suggestion
    Where are you located ? Have you been to a Cancer center ? If not, you should go to one.
    I was diagnosed 11/2011, oh it's a 3cm mass, ct next day, we will remove it and cure you. I remove it, they tell me it had gone into a vein, so now I am stage 3. It came out 2.5 cms. And guess what, my "urologist" had seen it in 2009, he has it in his report, but did not tell me, and it was 2.2 cm then, so it grew about .5 cm in 2.5 years. Different people have different tumors, which behave differently. Biopsies are known for false negatives, 20% of renal masses are statistically benign, 20% indolent, slow growing, 55% malignant. Also, you may not have to remove the kidney if you find a good surgeon, they can spare your kidney. I don't mean to freak you, I am freaked out myself from what has happened in my life the last 3 months, but, it impacts your life, be aggressive, not laid back. You can't afford to be in denial, FIND out, what kind of tumor it is, CT will show it.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    Second, third & fourth opinion
    Dear Sharnan,

    I had a 1.9 cm mass removed from my upper left kidney two weeks ago. On the day that I got my MRI results, I saw a nephrologist and 2 urologists. The following day I sought yet another opinion from the (3rd) urologist, whom I selected to do my surgery. The first nephrologist and urologist told me I needed open surgery. Why? Because they worked as a team and the urologist wasn't trained in laparoscopic surgery. They told me I would have to travel to the USA to get laparoscopic surgery (I live in Switzerland). Turns out they had highly-skilled surgeons and the latest Da Vinci technology right in their own hospital!

    I then consulted with two urologists (both heads of department at their respective hospitals) who did laparoscopic Da Vinci assisted surgery. This surgery spared my kidney -- my left is still as big as the right. The growth they thought was a benign oncocytoma turned out to be malignant RCC. The fact that I had it removed when it was still so small (Stage 1) means that I have an excellent chance that I am already totally cured.

    Two weeks post op I am feeling really well and am very glad the tumour is out. Don't be afraid to seek out other opinions -- it's your body and you have to live in it for the rest of your life.

    Crucial information
    One Lucky Girl, I'm very glad to hear you are doing so well. I'm also glad to see this superb American site proving valuable to people as widely dispersed as Taiwan (hi Jon :) ) Australia (hi pj_gal) Russia (hi Olgs) Brazil (hi Gustavo). I'm further glad to see numbers of Europeans coming here.

    Now, I don't think you're just "lucky", I think you're highly intelligent (like many of the contributors to these threads). You clearly have the right attitude, that many more of us ought to have - "Don't be afraid to seek out other opinions -- it's your body ..." Consequently, I think it's important that we all benefit from your experience. It seems shocking that your initial advisers were so ill-informed. There was the necessary expertise right there in their own hospital! Moreover, far from needing to go to the States, you could have found one of hundreds, if not thousands of da Vinci surgeons anywhere from Turkey to the UK and from Finland to Greece. This can be seen on a site which gives a very good summary of the kidney cancer world, at:

    http://www.davincisurgery.com/urology/conditions/kidney-cancer/

    My reason for writing is to wish you well but also to ask a question. Have you gone back to the uninformed specialists to ask why they gave you such misleading information and acted so grossly irresponsibly? I think it is essential that such questions are asked. Not everyone is as smart as you are and it would be tragic if other patients were to be victims of such unprofessional ignorance.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    livealive said:

    Big decision - Small Suggestion
    Where are you located ? Have you been to a Cancer center ? If not, you should go to one.
    I was diagnosed 11/2011, oh it's a 3cm mass, ct next day, we will remove it and cure you. I remove it, they tell me it had gone into a vein, so now I am stage 3. It came out 2.5 cms. And guess what, my "urologist" had seen it in 2009, he has it in his report, but did not tell me, and it was 2.2 cm then, so it grew about .5 cm in 2.5 years. Different people have different tumors, which behave differently. Biopsies are known for false negatives, 20% of renal masses are statistically benign, 20% indolent, slow growing, 55% malignant. Also, you may not have to remove the kidney if you find a good surgeon, they can spare your kidney. I don't mean to freak you, I am freaked out myself from what has happened in my life the last 3 months, but, it impacts your life, be aggressive, not laid back. You can't afford to be in denial, FIND out, what kind of tumor it is, CT will show it.

    Location
    Mr. Jai, may I enquire as to your location? What beautiful names you have in your family!

    I'm guessing you're another non-US citizen. I have the impression that you have more medical knowledge than most of us here or are you a scientist working in a different discipline? I am sorry you have occasion to be here but I think yours will be another welcome voice on this forum.
  • One Lucky Girl
    One Lucky Girl Member Posts: 68

    Crucial information
    One Lucky Girl, I'm very glad to hear you are doing so well. I'm also glad to see this superb American site proving valuable to people as widely dispersed as Taiwan (hi Jon :) ) Australia (hi pj_gal) Russia (hi Olgs) Brazil (hi Gustavo). I'm further glad to see numbers of Europeans coming here.

    Now, I don't think you're just "lucky", I think you're highly intelligent (like many of the contributors to these threads). You clearly have the right attitude, that many more of us ought to have - "Don't be afraid to seek out other opinions -- it's your body ..." Consequently, I think it's important that we all benefit from your experience. It seems shocking that your initial advisers were so ill-informed. There was the necessary expertise right there in their own hospital! Moreover, far from needing to go to the States, you could have found one of hundreds, if not thousands of da Vinci surgeons anywhere from Turkey to the UK and from Finland to Greece. This can be seen on a site which gives a very good summary of the kidney cancer world, at:

    http://www.davincisurgery.com/urology/conditions/kidney-cancer/

    My reason for writing is to wish you well but also to ask a question. Have you gone back to the uninformed specialists to ask why they gave you such misleading information and acted so grossly irresponsibly? I think it is essential that such questions are asked. Not everyone is as smart as you are and it would be tragic if other patients were to be victims of such unprofessional ignorance.

    All about money
    Hi Texas-wedge,

    Thank you for the compliment :-).

    Sadly, the nephrologist and 1st urologist were clearly not uninformed. I can only guess it had to do with money and my generous private health insurance. I saw the nephrologist immediately following my MRI armed with research on various treatment options (e.g. cryoablation, laproscopic surgery, open surgery etc.) that I had done as soon as I learned the results of the CT scan. When I asked to discuss the options, he said I should not have been on the internet and that I am not qualified to question my doctor. He refused to discuss any options and referred me to his friend.

    The 1st urologist only does open surgery. I asked about my other options and he said laparoscopic was not widely practiced in Switzerland, the doctors were inexperienced and that I would have to travel to the US to get it. I didn't believe him -- Switzerland is world-renowned in cutting-edge medicine. I replied that I had already visited the website of another hospital where they offered all treatment options. I then politely told him I wanted another opinion, took my CT scan & MRI pictures and left.

    I drove to the next hospital. Urologist #2 was terrific -- saw me immediately without an appointment and answered all my questions. Specialized in cryoablation and Da Vinci, and explained why Da Vinci was the right option for me. But his schedule wouldn't allow surgery until March and he was working in a public hospital (a very good one but not so comfortable). He recommended I consider urologist #4, in a prestigious private hospital.

    Yes, this private hospital was the same as the first (different building). The team there was amazing (highly-qualified and experienced) and I had total confidence in them. I had the smoothest experience possible for abdominal surgery. I certainly did tell them about my first encounter there, and what their colleagues were telling patients. They wanted me to register an official complaint, but I don't like to create trouble. I will try to educate others though, through forums such as these.

    Whew! Sorry for being so long-winded. I am writing this now to convey the facts, but in reality it was incredibly stressful. Thank God my husband came with me to each of these meetings -- couldn't have survived it without his support.
  • livealive
    livealive Member Posts: 127

    Location
    Mr. Jai, may I enquire as to your location? What beautiful names you have in your family!

    I'm guessing you're another non-US citizen. I have the impression that you have more medical knowledge than most of us here or are you a scientist working in a different discipline? I am sorry you have occasion to be here but I think yours will be another welcome voice on this forum.

    Location
    Sir, I am in NY, and I am naturalized American, so a citizen of India and America. I have no medical knowledge apart from what I learned about in the last 3 months, I was a computer programmer, so that's the background, which is why I think black or white, yes or no, on or off, and this situation has me in knots, ambiguity, unpredictability, which brings me to this forum. I am hoping something works.
    Thanks.
  • sharnan
    sharnan Member Posts: 10

    Second, third & fourth opinion
    Dear Sharnan,

    I had a 1.9 cm mass removed from my upper left kidney two weeks ago. On the day that I got my MRI results, I saw a nephrologist and 2 urologists. The following day I sought yet another opinion from the (3rd) urologist, whom I selected to do my surgery. The first nephrologist and urologist told me I needed open surgery. Why? Because they worked as a team and the urologist wasn't trained in laparoscopic surgery. They told me I would have to travel to the USA to get laparoscopic surgery (I live in Switzerland). Turns out they had highly-skilled surgeons and the latest Da Vinci technology right in their own hospital!

    I then consulted with two urologists (both heads of department at their respective hospitals) who did laparoscopic Da Vinci assisted surgery. This surgery spared my kidney -- my left is still as big as the right. The growth they thought was a benign oncocytoma turned out to be malignant RCC. The fact that I had it removed when it was still so small (Stage 1) means that I have an excellent chance that I am already totally cured.

    Two weeks post op I am feeling really well and am very glad the tumour is out. Don't be afraid to seek out other opinions -- it's your body and you have to live in it for the rest of your life.

    Hi One Lucky Girl,
    So

    Hi One Lucky Girl,
    So glad you doing well. I am still up in the air about mine but today I did make an appointment with my GP to ask him to send me to another Urologist for a 2nd opinion.
    Did you have any other symptoms? e.g. blood in urine or back ache or was it found by fluke like mine.
    I will see the GP tomorrow......
  • One Lucky Girl
    One Lucky Girl Member Posts: 68
    sharnan said:

    Hi One Lucky Girl,
    So

    Hi One Lucky Girl,
    So glad you doing well. I am still up in the air about mine but today I did make an appointment with my GP to ask him to send me to another Urologist for a 2nd opinion.
    Did you have any other symptoms? e.g. blood in urine or back ache or was it found by fluke like mine.
    I will see the GP tomorrow......

    Just fatigue
    Hi Sharnan,

    So glad you are getting another opinion. If possible, try to get a referral to a urologist who does laparoscopic procedures for an evaluation (maybe you can research who does that in your region). With such a small mass, it's entirely possible he/she could remove the cyst with a margin and save your kidney (of course, that can also be done with open surgery but it's a much bigger surgery). My only symptom was fatigue and a strange idea in my head that I needed a CT scan. Never would have thought in a million years that something was wrong with my kidney.

    I wish you all the best with your consultations. Please keep us posted.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    livealive said:

    Location
    Sir, I am in NY, and I am naturalized American, so a citizen of India and America. I have no medical knowledge apart from what I learned about in the last 3 months, I was a computer programmer, so that's the background, which is why I think black or white, yes or no, on or off, and this situation has me in knots, ambiguity, unpredictability, which brings me to this forum. I am hoping something works.
    Thanks.

    Location NY
    Another plus for you - you couldn't be in many better places than NY for access to expert advice and care (although one of the world's top laparoscopic surgeons, trained in Dundee, Scotland, now works in a specialist facility in India!).

    The domain of RCC, as I'm sure you've already researched, is very complex, analogue and multi-factorial but the fact that you were a programmer doesn't mean you're condemned to think in binary! What will you be working at in future? I'm sure you'll do well, whatever it is.