Robotic partial nephrectomy, I'm new

Texas_wedge said:

Question for surgeon

First question must be why you are being scheduled for surgery at all, contrary to current expert practice.

Are you grossly overweight? Are you a smoker? Is there a history of kidney cancer in your Family?  Do you have other serious medical conditions that indicate the desirability of urgent surgery for what is a tiny lesion? 

You were told you have a "large mass" which is why you are struggling not to "freak out".  Make no mistake, if you've made a typo and your lesion is actually 18 cm (7 inches or so) then it can be described as large but that can't be the case or they would not be talking about a robotic partial nephrectomy (unless they are complete and utter idiots). 

So, it seems safe to conclude that the lesion is 1.8 cm, which is minute (around 3/4 inch). To call that "large" is absolutely ridiculous.  To put it in context, there is a much younger man here who is doing fine after surgery a while ago for a tumour approximately 2,000 times the volume of yours!

Unless you have been given a very strong argument, backed by evidence, for undergoing a nephrectomy now, then your adviser is either trying to dupe you for some reason, or doesn't have a clue about RCC.  Have you been given such a convincing reason, plus evidence?  If not, you should get a second opinion at once from a genuine kidney cancer specialist.  Unless there is a highly convincing justification for surgery, the consensus these days is that a wait and watch policy should be followed, not surgery.  On what you've told us so far, there isn't even any reason to conclude that your lesion is cancerous.

As an addendum to my message above, you might like to look at this 1 minute video

http://www.onclive.com/conference-coverage/gu-2013/Dr-Huang-Compares-Surveillance-and-Treatment-in-Kidney-Cancer

You aren't elderly of course, but the message is pretty clear anyway - a great deal of surgery for kidney cancer is not only unnecessary but may well actually shorten the patient's life.

Kimmiep40 said:

question for surgeon

Thank you for commenting, The ARNP who gave me the report on my mass obviously gave me wrong info when she said it was a large mass.

I didn't find out how large until I requested the report myself. I have a wonderful urologist who is sending me to a well renowned robotic surgeon

who specializes in kidney nephrectomys. He told me I didnt need to have the surgery right away and I could watch to see what happens with

it, but on the other hand he said if it was in his body he would want it out. I understand it is small, but feel it is better to have it taken in 3-4 months 

then to wait and watch it grow. Could it be benign, yes...but I do not really want to take that chance. The scan was good showing a high

probability that it is cancerous. I have diabetes and am over weight as well as dealing with diverticulitis and neuropathy. I have never smoked or drank.

I am well educated and continue to research my condition so that I can make good choices for myself. I am a mother of five with a wonderfully 

supportive husband. I thought I would try and take in all of the knowledge available to those who have been in similar circumstance. I do feel that

you are alittle judgemental and I am hoping you are just passionate. I was not asking for a pity party, just wanted some support. Sorry if I offended

anyone.

I think we are all passionate here about how we view/deal/confront this disease.  I am sure Tex did not mean to come across as judgemental.  He has given countless people here (and on other websites) tremendous support and the benefit of his well researched knowlege.  He just called this one as he saw it. I know he meant well.

And you certainly need not apologize.  I don't believe you said anything that could be taken as offensive.

We are all here to help each other as best we can or know how.  No one person has a lock on the truth. IceMan helped illustrate that quite convincely. To me, the more voices of opinion there are to consider the better for each of us to make our own decision in the end.  And your decision, BTW, is a fine one.

Please don't take offense at Tex either. I surmise he just may be missing his golf game. It's hard to play in the snow.

Kimmie,

Your original question about the surgery and recovery got lost in the discussion which followed.

As a member of our exclusive club each of us has to go thru the surgery as part of our initiation. Mine was 10 amd 1/2 years ago. Not fun, but it beats the alternative. This is major abdominal surgery so you are going to be on the couch for a few weeks. If you have some extra pounds throw them away before the surgery. Gradually you are going to feel like going back to work within a month, but ease into your work as you are not going to feel like doing it 8 hours a day every day at first. Things do get better a little everyday following surgery.

You have already got past the hard part and that is someone telling you you have Cancer and that you are having major surgery right out of the gate.

At 1.8 cm.  your prognosis for a full and complete recovery from the initiation alone is excellent.

Icemantoo

NanoSecond said:

Dealing with pain

I know you are apprehensive about your upcoming surgery.  No doubt others will chime in with great advice on how to get through it (Spoiler Alert: You are going to do just fine).

I wanted to comment on your fear of pain.  There are some wonderful pain medications available and no doubt you will get the benefit of one or more of them.

However, a very important thing to keep in mind while you are taking major pain killers such as Oxycodone, Percocet (Oxycodone plus Acetaminophen), Vicodin, or Tramadol, etc., etc...

ALL of them can (will) cause major constipation.  So it is very important that you be on a laxative (such as Mirolax) to counteract this side effect.  Discuss this aspect with your doctor(s) or a good gastrointerologist to decide what the best strategy will be to deal with this issue.

But don't be shy about taking advantage of these miraculous drugs.  You can greatly accelerate your recovery to full health by minimizing any pain right from the start and for however long the pain takes to subside. 

Best wishes,

 

 

-NanoSecond

As Nano says, just take the drugs. They work good. Better than the stuff you took in college. Fear of the pain is a waste of your precious time and energy.

Texas_wedge said:

Surveillance

OK, Kimmie, so now we know just a tiny bit more (but still not much, and so far I've not learnt anything to make me change my appraisal of your situation, in fact quite the contrary).

We already knew your gender and your age, roughly, plus the fact that your 5 children are all grown up and your Husband is very supportive of you; that he has a urologist himself and that you have diverticulitis.  You've added the important information that you are overweight, diabetic and suffer from neuropathy (all of which doubtless tie in together).

About your lesion we still don't know much and you seem not to have been given any sound argument in support of immediate surgery.

You were understandably upset by being told your lesion was "large" but it turns out that an ARNP had misled you (which, in itself, is worrying) since the lesion is actually very small indeed.

It isn't known that it's cancerous but there is an unexplained surmise that it is.  Is that just someone's gut feeling?  Has it been given a Bosniak rating? Better still, has it been assessed by using the mGPS, or any similar measure?

You have a good doctor (which is a blessing) who says if it were him he'd have the surgery, but who nonetheless acknowledges that it's unnecessary at the moment and that the lesion could be watched for the time being with action taken later, if it turned out to be required (with no meaningful amount of ground having been lost).

Most patients don't understand the rationale underlying 'watch and wait'.  Expert consensus now holds that surveillance is the proper course for any newly discovered lesion less than 3 cm in size (and, in volume terms, yours is approximately only a quarter of that size).  RCC specialists will tell you that they have never seen a lesion that small, spread to any other location in the body.  What's more, innumerable small lesions just disappear spontaneously, without treatment, or remain unchanged and without giving any trouble.  So, it's a false assumtion that if you wait and watch it will grow.

A major misundersstanding, which you've expressed yourself  ("I understand it is small, but feel it is better to have it taken in 3-4 months  then to wait and watch it grow. Could it be benign, yes...but I do not really want to take that chance.")  is to suppose that the idea is to allow a lesion to grow until it's 3 cm or some arbitrary size and then take action.  That's not it at all.  Most very small lesions are found by chance and so they are of various sizes when watch and wait is recommended.  The intention is to see whether they do grow to any significant extent before rushing in with irresponsible surgery.  Many, it's found, won't. If the lesion disappears, fine.  If it shrinks or stays the same, or even if it grows at a negligible rate, the best course is to continue to keep an eye on it, with NO intervention (other than to commit to a healthy lifestyle of good diet and exercise). 

Your logic is upside down when you say  "Could it be benign, yes...but I do not really want to take that chance."  You are running no risk with a surveillance approach whereas you are running a real risk with pointless surgery.  So the chance which you shouldn't take is that of unnecessary surgery.

To reinforce the argument now accepted by the majority of RCC experts, let me illustrate with a case.  On another site, at the moment, is a lady who was much younger than yourself (34 at dx) who was found to have bilateral RCC - two primaries - and had a radical right nephrectomy and a partial left nephrectomy at that age.  That was almost 12 years ago!! Now, they are watching a cyst which may slowly be becoming more complex.  It is 2.3 cm x 1.7 cm and they have been watching it for seven and a half years during which time she has had no further surgery!  That lesion has grown by only a tiny amount in the past couple of years.

Now, I feel I ought to address iceman's observations in support of the 'you should panic and make sure you get this 'beast' right out of your body tomorrow' school of thought. As iceman has said, he and I most often are in agreement with each other and we have reciprocal respect for the other's motives (the more so since we're both lawyers, so we have to cast about a bit to get any respect  ).  However, I do feel he's giving you, albeit with the best of intentions, unfortunately misleading information. 

The 8,300 cases that Huang's team examined did NOT have lesions smaller than 1.5 cm, as iceman says, but smaller than 1.5 inches - very different (almost 4 cm).  Thus they included masses much larger than yours (a 1.5 inch lesion has a volume approx ten times that of yours). The two assumptions that iceman identifies as not applying to you do, in fact, apply. They looked at lesions under nearly 4cm  and yours is 1.8 cm and they were concerned with patients at higher risk - they chose patients over 66 but the argument holds for patients with co-morbidities that cause a higher risk (e.g. your diabetes, being overweight, having peripheral neuropathy).

The surgical hazards iceman touched on both do apply to you too - the cardiac risks and also the fact that it's undeniable that the surgery will reduce your kidney capacity (unless it's nephron sparing surgery that involves no margins at all, which would be undesirable). 

In alluding to his own tumour, iceman speculates about the disparity in size between CT scan and path report.  That was clearly a case of unusually inaccurate CT measurement (equipment was far less good 10 years ago than now) and it's unheard of for a small tumour to grow to four times the volume between dx and surgery so that illustration is unjustifiably alarmist.  I think it's a little disingenuous to call your lesion "on the smaller side" when it's actually much smaller than practically all of the RCC tumours that urologists normally operate on.  Many in our 'club' have had tumours larger than 10 cm and an astonishing number of patients have renal tumours larger than 20cm. 

The fact that the recovery rate is very high for surgery on tumours smaller than 4 cm is not much comfort if you are being subjected to major surgery, which carries real risk, if you don't need it anyway!

The key insights in the new research are not just "suggestions" - they are hard findings of fact showing that, of the more than 8,300 patients

"The rates of kidney cancer death were the same for patients who had surgery and those who underwent surveillance.

However, the study found patients in the surveillance group had a much lower risk of death from any cause, as well as a lower risk of having cardiovascular problems such as heart failure, stroke or vascular disease."

(see  http://www.nlm.nih.gov/medlineplus/news/fullstory_133947.html )

So, with smaller tumours, surgery did no good whatsoever for those patients BUT it did actually SHORTEN THEIR LIVES by the collateral damage it did!!! It's therefore hardly surprising that the take-home message has not been lost on the profession:

"The researchers also found that the percentage of patients with small kidney tumors who were managed with surveillance increased between 25 percent to 37 percent from 2000 to 2007. This suggests that doctors are becoming more aware that small kidney tumors may not pose a threat, even if they are cancerous, the study authors said."

What is being proposed for you runs counter to the most recently accepted good practice and your advisers must produce very convincing grounds to justify putting you through major abdominal surgery, particularly in view of your other medical problems.  If they can do so, then by all means go ahead with the operation.  If they don't, I would run rapidly to other doctors. Since you reckon you're in good hands, I hope that they either come up with incontrovertible evidence to support the envisaged procedure or that they rethink its wisdom.

[As for being passionate, I certainly am wanting you to get the best treatment you can, which is why I've spent quite a while on this message, instead of playing the round of golf I was due to play this morning.   To Neil:-  the snow has cleared at lower ground now - I wasn't able to play Winter League at my parkland club on Sunday (due to the snow) but had a great round at Carnoustie on Monday when the temperature soared from 26 F to 43 in bright sunshine.]

Kimmie, one thing for sure, you will definitely get every ones thoughts here.  And please keep in mind that everyone is very sincere in their answers.  TW, as you will learn does extensive research, is very intelligent, i have found almost has a photographic memory and very straightforward. If  you don't know him you might be taken back a bit, but he means well. Iceman is also very knowledgeable as well as nanosecond, fox and a bunch of others on the boards.  What I like about  it all is that you will be given alot of information and each of it will add to youknowledge and research and will prove helpful, as you will see.  

These types of posts also help those of us because I don't recall seeing the article TW posted about the watch and wait thingy.  I can add that recently on the boards I have seen a young girl be advised to have surgery ASAP, while a second opinion the doctor told her she only had an infection. In another case the woman was told immediate surgery and two years later it ahead not grown, the third year it actually shrunk a bit.  These are just examples and of course the other scenario is there too where it can grow bigger.  But as long as it is watched carefully, very carefully, it might prove to be a good thing to wait just a few months before surgery and have it checked again As your doctor suggested.  

I had a question.  They now freeze the tumors if they are small, have they offered you this procedure?  I believe the size would qualify you.  Please anyone correct me if I am wrong.  

I do hope this all turns out well for you.  The fact that it is caught early is good.  We are all here for you anytime.  Since we are not experts we can only give our opinions or point you to some informative articles and such. But we are here to cheer you on and keep you uplifted and focheed on getting better.   Remember to smile and get  and give plenty of hugs   Xxoo

Kimmiep40 said:

Thank you

Thank you TW for taking the time to post. I really appreciate your knowledge and passion and for you taking

the time to comment back. I am trying to take in all of the information I can as I see the specialist March 12 for

a consult. I want to be prepared to ask the important quesions so I get all of the info I need to make an

educated decision. For now I am off to Disneyland next week with my hubby celebrating our 32 year anniversary

and just be in the happy place and relax and not dwell on things. Once again, thank you for taking time out of 

your life to help mine Have a great weekend.

 

Kimmie,

I was diagnosed with a similar sized mass on my left kidney (top of left kidney just underneath my spleen), It was too small and too awkwardly located to major organs to perform a biopsy and my Dr told me how slow these things can grow and gave me two options, 1) wait six months and see if it has grown. 2) Perform DaVinci robotic surgery.

I had a number of stress related issues that were happening at the time and I knew I had good insurance so I did not want this to be a cause of stress or worry for me also and I opted to have the mass removed.

I had surgery April 20th last year and was back at work by May 25th. (I could have gone back sooner but I am glad I did not).

The biopsy came back as being Renal Clear Cell Carcinoma. I am glad I had it removed. If you are healthy enough to have the surgery (I was 30 when I had mine) and you have insurance then I would not hesitate to have it removed at this stage. I have a follow up CT scan next week.

The worst part of the recovery which is something to be advised on were the severe cramps from constipation with taking Vicodin (I cannot begin to express how many gallons of prune juice I drank...) I had some pain at the incision sites for a while (a few months as every thing settled down again) but nothing overly unbearable.

I wish you all the best for your consult.

John

icemantoo said:

Dr. Huang

Kimmie,

Usually I agree with Tex because he reads a lot more of the medical stuff than me, but in Kimmie's case I am going to disagree.

I read dr. Huang's analysis of some 8000 small tumors (1.5 cm or smaller) for people 66 years of age or older suggesting that surviellance is preferable to surgery because of cardiac considerations both from the syurgery and loss of Kidney function.  Whether one agrees with this premise or not neither of these assumptions apply to Kimmie who is only a 50 year old kid with a 1.8 cm tumor. As part of the CT the docctor should be able to determine if there is a high probability of Cancer. If so at age 50 get it out before it grows larger. Mine was 2.6 cm on the CT and 4.2 cm when they took it out. It eather grew or the CT scan is an inaccurate measurement of 3 dimensional objects or both.

As far as being a large mass 1.8 cm is large in comparrison to where nothing is supposed to be there, but on the smaller side of tumors shared by our club. For 4 cm or smaller recovery from the surgery alone is close to 100%.

The last time I saw my Nephrologist he told me he consulted with severial surgeons who wanted to remove a 6cm tumot fron a 90 year old. He suggested  that  she would die of or suffer a heart condition if the surgery was done, but would live possibly 5 years before dying of Kidney Cancer if the surgery were not done, The surgery was not done.

Kimmie, if your Dr, thinks that it is Kidney Cancer get it out.

 

 

Icemantoo

Both of mine were small also and of course with only one kidney I really had to make the choice of which way to go...But Dr. Hwang had done numerous procedures like this and I agree with his thinking that removing them when they are small causes the least trauma to the kidney and the best hope for it to return to normal function and the other thing is small tumors that are encapsulated can still rupture and release the cancer into the kidney itself. I think surgery is the right call. Kimmie should wind up to fully functioning kidneys and that is the goal..clear of cancer and kidneys that work...JMHO of course, LOL

roaddr23 said:

Hi Kimmie

I just had my second round of kidney ...10 years ago I had my left kidney removed because of a large tumor. Then in Dec  I was found to have to tumors 2.8 cm and 2.1 on my right kidney during a scan for my back problem. On Feb 8 I had my tumors removed robotically, one which was in the lower lobe like yours...I went into the OR Friday at noon and was released from the hospital Sat at 3. Yes, it hurts, they have to go through lots of muscle and move things around but the alternative to having it progress further is not good. Yes, it is slow growing but my surgeon made two important points...when it is this small it creates very little trauma to your kidney allowing it to heal and function normally...also even small encapsulated tumors can rupture...I say get it as soon as you can and then rest, rest, rest like I didn't at first and am now paying for...You are so lucky to have found it early...get it out and get on with you life after you have rested up so your body can heal...you will do fine...try not to stress out, eat well and keep yourself well hydrated and I promise you the pain is not that bad and it is worth it to be cancer free...best of luck to you and I usually agree with Tex too but this is so close to my own recent experience I have to say surgery is the best option by far..hope that helps you out.

Agreeing or disagreeing with me is neither here nor there.  I just want to point out that you're disagreeing with the judgment of the world's top experts on RCC, based on the scientific evidence they have adduced.  When you're dealing with something requiring great expertise, you're maybe better off relying on the judgment of the top experts than on emotional or anecdotal comments made by the likes of us here.

The key message from that very large study I quoted is that those who didn't have surgery for small tumors lived LONGER than those who did!