CSN Login
Members Online: 19

Big decision

sharnan
Posts: 10
Joined: Feb 2012

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.

icemantoo's picture
icemantoo
Posts: 1567
Joined: Jan 2010

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's picture
MikeK703
Posts: 235
Joined: Sep 2010

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
Posts: 26
Joined: Sep 2011

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
Posts: 10
Joined: Feb 2012

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's picture
lawmanmike
Posts: 29
Joined: Jan 2012

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
Posts: 10
Joined: Feb 2012

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's picture
lawmanmike
Posts: 29
Joined: Jan 2012

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's picture
garym
Posts: 1651
Joined: Nov 2009

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
Posts: 10
Joined: Feb 2012

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
Posts: 66
Joined: Jun 2011

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's picture
foxhd
Posts: 1928
Joined: Oct 2011

..what newenglandguy says. I'll bet you can afford a couple hours and a co-pay.

One Lucky Girl's picture
One Lucky Girl
Posts: 68
Joined: Feb 2012

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.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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.

One Lucky Girl's picture
One Lucky Girl
Posts: 68
Joined: Feb 2012

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.

sharnan
Posts: 10
Joined: Feb 2012

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's picture
One Lucky Girl
Posts: 68
Joined: Feb 2012

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.

sharnan
Posts: 10
Joined: Feb 2012

Hi One Lucky Girl and everyone
Well, I have made an appointment for a second opinion for the 16th April. I know deep down that it is something that I had to do to satisfy myself. So have been madly making copies of all my reports to take.
One Lucky Girl, it is a solid mass I have not a cyst,and that is what scares me the most.
I will let you know how I go in a few weeks. So nice to say a few weeks instead of waiting for my next scan in August from my other Dr.
Take care .....

One Lucky Girl's picture
One Lucky Girl
Posts: 68
Joined: Feb 2012

Hi Sharnan,

I think it's great that you are getting a second opinion in a few weeks. You may want to ask if you are a candidate for a partial instead of a full nephrectomy (that way you get rid of the tumour but keep your kidney) and whether a laparoscopic procedure would be suitable (much less invasive and shorter recovery period). I hope this consultation goes really well for you but do make sure you are comfortable with the urologist and trust his/her advice. Please let us know how it goes.

livealive's picture
livealive
Posts: 127
Joined: Feb 2012

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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.

livealive's picture
livealive
Posts: 127
Joined: Feb 2012

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.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

One Lucky Girl, thanks for the narrative. My first thought when I read your previous message was that it sounded like someone protecting their turf but I dismissed the idea, thinking that no-one could be so venal, irresponsible and, most of all, so stupid. I still think that being so mercenary and behaving so criminally in deceiving a patient whose best interests should have been their primary consideration is really shocking, but I've re-considered the stupidity aspect, for the reason I'm giving below.

If English is not your first language, I must say I'm mightily impressed with your command of it. However, your mindset is a very familiar one to us in the UK - not wanting to complain, particularly with our prized NHS for which we have so much to be thankful. However, there are times when one ought to complain. The medics who so blatantly deceived you were amazingly complacent in not supposing that they would be found out but they don't seem to be so stupid if they can trade successfully on decent peoples' reluctance to complain. We can't know how many past patients' trust they have sold out and how many more they may get away with duping if they aren't stopped.

I don't want to lay an undue moral burden on you but don't you think you owe it to others less intelligent than yourself, who aren't smart enough to handle it the way you have, to help to put an end to such gross professional misconduct?

I'm delighted you're doing so well and probably cured once and for all. You're now in excellent hands (including your Husband in this) and not subject to any recriminations. The good guys would like you to register a formal complaint to help maintain the integrity of their profession and to protect future patients form the bad guys who will quite possibly keep getting away with it if someone well placed to do so doesn't blow the whistle.

newenglandguy
Posts: 66
Joined: Jun 2011

Sharman - growth rates very and so does the Furhman grade, assuming it's a malignant tumor. Did the Uro actually saw tumor or cyst. If a cyst (I'd myself ask for the Radiologist's write-up, ask the Uro for it's Bosniak scale. That is very important if thought to be a cyst. I would also get a second opinion, and by a Nephrologist and not another Urologist. Just my $0.02.

One Lucky Girl's picture
One Lucky Girl
Posts: 68
Joined: Feb 2012

Hi Texas_wedge,

I grew up in the medical community (my father, uncles, brothers were/are all surgeons, mother, sister, aunts were/are health professionals). It's a very close-knit one and an influential one.

Having to go literally knocking on doors (instead of being referred) with a possible cancer diagnosis was one of the most stressful experiences I have ever been through. I arrived at the final Urology centre in a flood of tears, pictures in hand and no appointment. The staff was wonderfully compassionate and looked right after me. When I told my doctor of my experiences, his expression was thunderous. Standards at this hospital are extremely high. You can rest assured that this will be dealt with in no uncertain terms.

Having just had surgery and received a cancer diagnosis two weeks ago, I prefer that they proceed without me at the centre of it. I just need a hug :-).

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Thank you for taking the trouble to give that reply which is very cheering and reassuring. After what you've been through, you certainly deserve, and I'm sure need, some peace for recuperation. I wish I could be there to give another hug but please consider yourself hugged remotely!

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Please add another hug from across the pond. You may not think so, but in my book you are one strong lady!

One Lucky Girl's picture
One Lucky Girl
Posts: 68
Joined: Feb 2012

My dog is doing her happy dance now because we're headed out for a nice long walk in the sunshine :-).

foxhd's picture
foxhd
Posts: 1928
Joined: Oct 2011

Here's my hug and a kiss on the forehead. xxx
FLY..Fox loves you.

livealive's picture
livealive
Posts: 127
Joined: Feb 2012

TW - can you give out his name ?
Also, is there a way to communicate only with certain members v/s posting as an open blog ?
Thx.

icemantoo's picture
icemantoo
Posts: 1567
Joined: Jan 2010

rhjaisingh,

Any member may send a private message to another member using CSN email on the upper left.

Icemantoo

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Mr. Jai, I have endeavoured to send you information by private email message using the CSN Email but I got the message:

rhjaisingh does not accept private messages.

I guess you will need to set up the access to enable me to do so. Go to http://csn.cancer.org/help#email for details.

If you're keen to get the info asap I can post it here - there's nothing sensitive and other members here will have no objection if I do so - readers can ignore anything of no interest to them. Please confirm if you would like me to do so and you can then set up private email at your leisure.

kkayball
Posts: 3
Joined: Apr 2012

Hello,,,easiest way to say this is its your decision,,,I just had my kidney removed last week on march 28th,,,,I so felt the same way you do now,,,never looked on here because ddi not know it was cancer till removed,,,Mine was found incidenetly on an MRi scan,,,at the time was 1.9cm that was last august 2011,,,they also said the same we will just watch it,,,I also did not want the tumor inside me made more worry than not,,,,however follow up cat scan in november showed stable,,,so I thought great,,,specialist said lets wait til June and see how it is doing,,,,In Febuary however kept telling primary doc...I don't feel well...only symptem I really ever had was being tired and I dont' kn ow if from all the worry that is ws there or the tumo, i felt even more tired....so my local doc ordered another cat scan...it had grown to 4cm....my doc didi not hesitate at that time....we removed the kidney....mine was deep inthe renal cortex so was the only option...there are to many complications to just remove the tumor,,,,Once removed its no different thatn a kidney doar giving one up for a transplant....Thye doen mine laproscopically in Indinapolis at IU Med cENTER...dR, SUMADRU was awesome....mine turned out to be clear cell carcinoma....so I was grateful we removed it...Thye typically wont remove kidney until its over 3cm....keeping watchful eye is very important ...every 3 months cat scan is safer thatn every 6 months for sure...the only way to know what it is growing in there is to have it removed unfortunately....good luck and if you have any questions feel free to ask......your welcome to anytime,,,tracey ball

sharnan
Posts: 10
Joined: Feb 2012

Hi Tracey,
I was going to put all my faith in the specialist I had and just do what he said "watch and wait" but last time I was there I asked him what happens if it hasn't grown at the August scan. He said he would start spacing the visits out more, meaning they would not be done at 6 months but with longer times in between.
As I know this is a solid lesion I was not happy with that answer, hence my going for a 2nd opinion on the 18th April (not 16th as I previously wrote) so just 2 weeks to wait instead of waiting until August for another US.
It certainly is not a nice feeling knowing something is inside you that should not be there.
Thank you for telling me your story and I will certainly let you know how I get on with the 2nd opinion.
Talk soon and thank you again,
Rose

sharnan
Posts: 10
Joined: Feb 2012

Hi Tracey,
I was going to put all my faith in the specialist I had and just do what he said "watch and wait" but last time I was there I asked him what happens if it hasn't grown at the August scan. He said he would start spacing the visits out more, meaning they would not be done at 6 months but with longer times in between.
As I know this is a solid lesion I was not happy with that answer, hence my going for a 2nd opinion on the 18th April (not 16th as I previously wrote) so just 2 weeks to wait instead of waiting until August for another US.
It certainly is not a nice feeling knowing something is inside you that should not be there.
Thank you for telling me your story and I will certainly let you know how I get on with the 2nd opinion.
Talk soon and thank you again,
Rose

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Rose, the second opinion will be very interesting to hear about.
Presumably the radiologist has advised your urologist that the lesion is a solid one, which is why you are concerned. If it weren't solid then continuing surveillance would doubtless be the best course. However, if it is solid then the following remarks from the abstract of a recent study support your thoughts on the subject:

PURPOSE: We characterized the clinicopathological features and the prognosis of small solid renal tumors defined as tumors 4 cm or smaller.
MATERIALS AND METHODS: We identified 1,208 patients who were treated with nephrectomy at 5 international academic centers for small solid renal tumors. Clinicopathological parameters and outcome data were collected for each patient and analyzed.

The informative conclusion from this study is given in these terms:

CONCLUSIONS: More than 85% of small solid renal tumors are renal cell carcinoma. The majority of localized small renal tumors can be cured with existing surgical approaches. However, there is a small but not insignificant risk of synchronous and metachronous metastatic disease and cancer associated death. Patients considering experimental therapies such as ablation and surveillance should be aware of this.

This is from a study published in the Journal of Urology in 2008 entitled "Tumor size does not predict risk of metastatic disease or prognosis of small renal cell carcinomas."

Please be sure to go along armed with all the reports on your case and all the information you can muster and ask all the questions you need to, to get a full understanding of what you are advised to do and why.

nyc_girl
Posts: 26
Joined: Apr 2012

I discovered (by luck) in late November that I had a 2.2cm kidney tumor. I had no symptoms. I am in my early 40s. I got 2 medical opinions in NY from doctors specializing in kidney tumors. Both doctors recommended partial nephrectomy based on the MRI results. One doctor recommended robotic surgery, the other recommended open surgery. I decided to have the tumor removed in January by open surgery. The surgeon I chose has many many years of experience operating on kidney tumors. He was able to remove the tumor and save most of my kidney. The tumor turned out to be clear cell RCC, fuhrman grade 3. I recovered from the surgery and no further treatment is being recommended, but I will need to have regular post-op imaging to make sure there is no recurrence.

Good luck with your decision. Wishing you well.

foxhd's picture
foxhd
Posts: 1928
Joined: Oct 2011

More great results. Love it!

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network