CSN Login
Members Online: 12

Post surgery scan 6 months later

jknorth's picture
jknorth
Posts: 44
Joined: May 2013

Hello, just curious as I have a 5 month wait for my first checkup after that DaVinci T1a episode. Does anyone know if something new can even develop in only 6 months time, large enough to be seen on an ultrascan. It would have to be super aggresive and from what I read on the web my almost 3cm mass took around 3 yrs to create. I don't get it. Does the curse get stronger once its taken out, if you are one of the unlucky 2%. Has anybody ever heard of a reoccurance after only 6 months followup scan. Seems it would take a few yrs and radiation from all these scans can't be good either, then again what do I know.

Also regarding the online info as being behind the times and only looking at the 5 yr horizon....if you filter the search for 1 yr or newer....theres tons of stuff, but it still always uses that 5 yr report. Must be a medical standard or something. Confusing to say the least.

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

But, I guess there has to be a threshold for one moment nothing is there and a moment later there is! I'd suspect earlier detection is better!

I don't get scans but once a year. I get X-rays every 90 days.

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

It depends almost entirely, as you have surmised, on the histology you have.

A tumor the size of yours would probably (based on the best academic studies on the topic) have taken around 10 years to develop - but there is a wide variance across individuals, so one can't state for sure in any individual case.

The slowest growing RCC tumors are those with chromophobe pathology (at early growth rate of, typically, a quarter of a centimetre a year, as against the average, across RCC types, of about a third of a centimetre).  Your age when the cancering began to get out of control is also an important factor - those who succumb at a younger age tend to have faster growing tumors.

However, the situation changes very dramatically if your RCC has metastasised (spread).  The likelihood of metastasis is largely governed by the size of the tumor when it was removed.  At the size yours was, the likelihood of metastasis is close to zero.  It's a completely different probability if your tumor was 20 or 30 cm. (we have a fair few patients about, including here on this forum, who have had tumors of sizes between those figures!).

When the cancer has spread, the histological type becomes the major factor.  With what are termed "undifferentiated" or "poorly differentiated" histology there is much greater aggression.  What you'll see referred to as sarcomatoid change, or rhabdoid features, betoken much greater agressivieness.  Then, all bets are off and growth of the kind you thought unlikely is, on the contrary, to be expected.   At the worst end of the spectrum, we're talking about going from no visible mets to dead in less than a year.  I can speak with some knowledge on this.  According to the most sophisticated expert judgment, the median life expectancy of someone with my histology was around ten weeks from the date of my nephrectomy, even though I had no visible mets at all at diagnosis, and still none at nephrectomy!

I had a 9 cm tumor removed in December 2011 when the surgeon 'got it all' (all that could be seen!) but not with clear margins.  By February 2012 a new tumor was seen and was removed in March by another major surgery (using the same incision as in the open nephrectomy).

At that point, unfortunately as it turned out, I was told I was NvED (no visible evidence of disease).  That didn't last for long.  At my follow-up CT scan, with contrast, a new tumor was visible.  That grew so fast that it went from 2.5 cm to 5 cm in 23 days - that's an increase in volume of 8 times the size, in 23 days!  It's inoperable and is somewhat uncomfortable as I sit here and write.  [Since the surgical route was closed, I've been on Votrient since November, though I've had to come off it a few weeks ago and I'm now waiting to see if I can get back onto treatment - the alternative isn't very nice to think about!!]

I guess that's an answer to your question (and from a horse's mouth too).  The good news, for you, is that this is all of no relevance to your situation - you're as well placed as anyone with RCC could hope to be - you had cancer but you don't have it now.  Keep an eye on it (but not with CT scans every twelve weeks, like me) and make sure you don't have a recurrence - stay well.

 

Eims's picture
Eims
Posts: 423
Joined: Feb 2013

hi jk i have my 6 month scan in a few weeks and trust me i asked exactly the same question.  it is natural to feel like that and i suppose it is something we will  have to deal with and cope with for the rest of our lives.  not easy i know but hey we are still here and learned quite a few lessons in the meantime.....mine was a t1a grade 3 so im hoping for ned in august...we have to stay positive and strong and we will be ok...

eims x

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

OK, so you are one of the lucky ones, very small tumor.. But think about it... that tumor did not just grow.. something made it grow.. and to grow it needs a blood supply.  For some reason most of those with small tumors usually have no further Cancer..

Even still.. a scan at 6 months is a good thing... it gives the doctor(s) a base line post surgery.  Once your go to a longer time between scans, they will use that first scan over and over again as  your base line.   This makes it easier for them to spot anything unusual.

Lastly, I hope a nice clear scan gives you good piece of mind... to move on to enjoying life..!

Ron

jknorth's picture
jknorth
Posts: 44
Joined: May 2013

Thanks very much for the 'straight from the horses mouth' info and the others good comments too. Had to read it like 4 times to get it as some of the buzz words still need some deciphering on my part. You opened up my eyes quite a bit. I wish you the best of luck as well and same goes for everyone. Its mindbending to try and guess and figure out just what in hell causes the initial reaction to activate this gene that can attack what looks like anyone. Really hope they come up with something good soon, odds are they will, followed by a cure for thinning hair, thats a big one too, both are just not fair. Thats life it looks like. Now everytime I witness a roadkill I think to myself....I could have been that squirrel. Lucky.

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

jk, you mentioned "the unlucky 2%" . Could you clarify who you were referring to?

jknorth's picture
jknorth
Posts: 44
Joined: May 2013

When I woke up from my surgery the surgeon said to me that there was a 98% chance the cancer would not come back, thats where I get my unlucky 2%, then after the pathology came back they said I had an F2 type of mass and he maintained the 98%. I think the 2% comes from the worldwide statistics, and I hope its improving. Getting this in the first place is just bad luck.

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

Thanks, jk, that's just what I thought and is why I wanted to follow up on it.

That figure only applies to those with very small tumors like yours, when caught nice and early.  (We must all hope that the new detection methods lead to more and more cases being picked up when the lesion is small and early in its development.)

For the vast majority of cases, however, it's very likely that the cancer will come back, which is why people are still monitored even 20 years and more after they appear to be all clear.  With regular monitoring, which is becoming ever easier, it will be possible to pick up recurrences soon enough to deal succesfully with them so that cancer is fast becoming a chronic condition to learn how to live with, rather than a death sentence.

I just wanted to ensure that you and other newcomers to this scene realise that your 'unlucky 2%' of patients is, in reality, more like 70% when it comes to all RCC patients (not just those with very small tumors) and that a sizeable proportion of that 70% will die of RCC mets. - we're just trying to push that day as far into the future as possible.

Galrim's picture
Galrim
Posts: 278
Joined: Apr 2013

Arent you mixing up the numbers regarding mets here Texas? Common stats are 1/3 have mets at presentation, 1/3 develops them post neph, 1/3 never have re-currence/Mets. So yes, approx. 70% deals with mets at some point. But when discussing mets post neph the risk is around 30%.

/G

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

No, I don't think so.  However, if you'd like to spell out what you mean, I'm happy to see whether we can get a good argument going Laughing

It's pleasing to see you back and obviously in good form!

Galrim's picture
Galrim
Posts: 278
Joined: Apr 2013

What I mean is, that you write that there is a post curatively intended nephrectomy recurrence risk of 70 %. I have never encountered that number. Ever.

Usually its stated as around 30 In just about all surveys. A couple of examples:

http://radiology.rsna.org/content/234/1/189.full

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1471767/

Just to show two out of many.

/G

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

Galrim, en garde! 

But  not right now - since it's more for fun than anything else, I'll try to get back to this a little later (too many crises and commitments and interruptions at present).

todd121
Posts: 641
Joined: Dec 2012

But I read and re-read both of your posts, and it looks like you agree with each other. In any case, both of your points are valid even if your numbers are off by 30% here and there. :)

Todd

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

Todd, don't you barge in here spoiling a good argument - Galrim and I need our fun Smile We can certainly drum up a good disagreement here and I really do mean to get back to it but am too hard-pressed on other fronts at the moment to get stuck in.

jknorth's picture
jknorth
Posts: 44
Joined: May 2013

Hi Eims, its those first 2 years that are a little tense I'm thinking its a lot better when you pass that hurdle. Hope too your first one shows up negative, Im sure it will. I should have asked if one of the 2% have to go under the knife again, if the new mass is usually in the same kidney same spot or if it can suddenly be anywhere else and what the odds are on that. Keep having occasional flashbacks late at night, thats when my questions pop up.

DonMiller's picture
DonMiller
Posts: 102
Joined: Feb 2013

I have a few things I can't seem to get an answer on  and would appreacite your opinion.  I had a 11CM  T3A  grade 3 ( sinus fat and muscular renal vein invasion) clear cell tumor removed last October.  No one seems to know how long it was there, but even at grade 3 it had to take many years to get that large.  Why is it you are at such higher risk of a reoccurence in the first couple of years? 

 

Don

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

Don, you caught me at a frenetic time when I couldn't think clearly and by singling me out for an opinion you put me on the spot so I wanted time to consider your question which is a bit deeper in some ways than it seems at first glance.

Your large tumor, with significant infiltration, will, for sure, have been growing for decades, even allowing for its being grade 3.

I guess that understanding recurrence probabilities requires appreciating the mechanisms involved. For most maladies, passage of time increases, rather than decreases likelihoods - the longer we're around the more chances there are of exposure to infectious agents, for instance; the older we get, the weaker our immune resistance becomes; the longer that disease processes continue, the higher the risk (e.g. build up of atherosclerotic plaque, elevation of BP etc).

With RCC it's totally different because we're talking about whether or not there has been a cure.  There are 3 ways that RCC spreads (I'll avoid getting into philosophical debates about CTCs, new primaries, molecular labelling and so on).  They are in one of the circulatory systems - blood or lymphatic - or by direct contact, as in your renal vein.   The hope is to catch everything with the scalpel - cutting back to completely clear margins should ensure that there is no local physical spread.  If the tumor has been caught early enough, while still fully encapsulated, there should be no circulatory dissemination either.  The proof of the pudding is in the eating.  If the op has not been wholly successful then the possibility for recurrence is there and there's no great reason why it won't start happening more or less straight away, which is why the first couple of years tell us a lot.  The longer one remains clear, the more likely it is that the op did the job.

There are, of course other factors. We don't know enough yet about the micro-environment that disposes us to succumbing to recurrence - maybe someone with a very strong immune system will find it copes on its own with any residual cancer cells, whereas someone else isn't so lucky.   Generally, though, if there are nasties left there's no great reason why they won't try to go it alone sooner rather than later.  If the pathology is highly aggressive that can happen at electrifying speed and unfortunately for me I'm about the worst example you're likely ever to come across.  We thought we had clear margins in December but there must have been several invisible 'satellites' that weren't caught by my nephrectomy and so by March I had to have another major open op to remove the first of a now unending series of recurrences (all of which, alas, are inoperable).   The abdominal wall tumor I have grew from 2.5 cm to 5 cm in 23 days which accounts for it being fairly uncomfortable to live with, particularly in the past six weeks of obligatory break in treatment.

If you have further questions you feel I  might be able to address, please ask.  I don't know whether what I've said makes sense but I hope it's of some use to you.

 

 

TillieSOK's picture
TillieSOK
Posts: 246
Joined: Jul 2013

Hey, Don.  After reading my path report, I have the same stage T3a with a 6cm mass and a G2...we could be almost identical twins!!  (Except that I'm a girl and mine is CHRCC instead of CCRCC, but except for those little differences, we're 'zackly the same, right?). Mine had the renal vein invasion and the sinus fat thing also...which I thought it was rude to talk about my INSIDE fat, too.  How long do you figure mine had been there, fat and all?

ps:  the spot on my liver, according to the last CT has almost doubled in size from the one in April, and appears to be a "complex cyst", which my surgeon also failed to mention, along with a very teensy spot on my left kidney midline.  Isn't this ride fun? NOT!

todd121
Posts: 641
Joined: Dec 2012

We've had some discussion of this before. You might be able to find those threads. There were statistical numbers in the discussion...

I'm not going to quote numbers, because I'll get it wrong.

It's usually not in the same kidney (many/most of us don't even have the same kidney!), same spot. Mets are most commonly in the lungs next. Bones is next (but the order could be reversed) and it's usually spine, pelvis, large leg bones, ribs. This covers most of it. But it could appear in lymph nodes, other organs like the liver, other kidney (not so likely), and brain is in there somewhere in the mix, but not very likely a site of first metastasis. It can be in the surgical site and I think this is somewhat common for those with very large tumors. As I remember, that was the case with Gerald White's first sign of metastasis after his large tumor was removed.

The night stuff will subside I think. It has for me. For several months I went to sleep thinking about it, woke up during the night thinking about it, and woke up in the morning thinking about it. It's very stressful and annoying. And it's not helpful. Hopefully you can find a way to relax and let it go. For me it took about 4-5 months to stop obsessing about it (and I'm an OCD kind of thinking person).

Hope that helps.

Todd

todd121
Posts: 641
Joined: Dec 2012

By the way, that 5 year stuff is for other cancers and not ours. That's one of the unfortunate thing about RCC. 5 years cancer-free doesn't mean the same thing that it means with other cancers. Several other cancers if you're cancer free for 5 years, they pretty much stop looking. You're "cured". We have to keep looking, unfortunately. It's something unique with kidney cancer.

Like you, I worry about the radiation from all the scans. I've had 4 CT scans in the past 6-7 months and I'll be getting 2 more before the end of the year. I've also had a couple of MRI's, a chest X-ray...I forget. As far as I can tell, nobody is really keeping track of what all I'm getting but me. Do they wait until I glow in the dark and I start complaining about it before it becomes an issue? :)

Todd

cjm11
Posts: 11
Joined: Jun 2013

Hi Jk, you and I have about the same diagnosis.  I had an almost 4 cm clear cell rcc, grade 3.  I had a previous scan in 2009 to compare to and the cancer wasn't there.  It had grown to that size within the past 4 years.  I was told it grows about one centimeter a year; but the more aggressive the grade, the faster the growth.  Yesterday I went to a medical oncologist for a second opinion post davinci partial right nephrectemy on 7/10/13.  His group was in on the clinical research for six of the nine drugs on the market for rcc.  He said the most predictable thing about kidney cancer is that is is unpredictable.  It is called "practicing" medicine because it isn't an exact science.  Right now the conscensus seems to be scans and blood work at six months post-op just to catch anything before it grows larger and spreads.  That is only for a couple of years and then it becomes yearly follow-up.  As you can see, there are many different opinions.  The best you can do is research and talk about it, as you are doing, and then do what feels comfortable for you.  At least that is what I am doing.  :)

jknorth's picture
jknorth
Posts: 44
Joined: May 2013

Its a little tougher sleeping as well as before, have til Dec for my first follow up scan. Right now my right hip bone is sore, my skull has slight flashes of occasional jolting pain, my leg and upper thigh muscles tense up so much its like constant nerve spasms, the lower gut area and groin has occasional pain jolts, left chest under rib cage has the odd pain spot. Way too easy to notice common pain points now that were totally ignored 3 months ago. Likely part of hitting 50 you guess but then you wonder if its maybe that SOB one gene that escaped. One that bugs me is the hip joint, its internal pain and bones are a prime target as you say. 3 cm mass took likely 3 yrs and thats the same as the hip pain. In Canada they are mega cheap on the MRI's and you can wait like 5 months for one. Wish I was back with Kaiser in the southwest, 3 weeks.

Eims's picture
Eims
Posts: 423
Joined: Feb 2013

jk its totally normal to feel like this....well i hope it is because its how i feel sometimes too!!  i think we can over analyse things too which is to be expected but as the lads here would say it keeps us vigilant.  it is easy to freak out and to be honest i think its better to do that than keep it all inside.....

eims x

cjm11
Posts: 11
Joined: Jun 2013

JK, didn't they check for mets as soon as you were diagnosed?  Usually, at least in the states, you get a chest x-ray and bone scan.  At least that  is what I have found from reading about rcc. 

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

In my case, ct, chest x-ray, blood work only! No bone scan.

I'm in the Southeast US. 

My Dx was T1b Grade 3 4.5 cm.  Still not a bad diagnosis all things considered. I'd have been happier with grade 2, but . . . C'est la vie. It is what it is and I'll do what is necessary.

Pax!

Michael

jknorth's picture
jknorth
Posts: 44
Joined: May 2013

They said they did a catscan, blood test and checked lymph nodes, I don't remember any type of bone scan. The surgeon said they found no evidence of spreading, but I thought the T1A designation tells all that, thats why its a T1A classification. Guess I'll ask in Dec on my first checkup.

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Hi Don.. welcome to my (and some others) world.  You and I both had Renal Vein Invasion..  you don't want to hear this, but most likely mets are in your future..  I hope not.. but.. it is, what it is..  Nothing you can do about it overall.  But then a good renal / Cancer diet may be of help.. don't know for sure.  I really do not know why Renal Vein Invasion is not considered stage 4, the Cancer has al;ready spread outside of the one Kidney.  I guess that is because in some cases it does not come back. But to me, spreading is spreading.

All that said.. there is so much that can be done now, that could not be done just a couple of years ago..  We just need to have hope and wait it out...

Ron

todd121
Posts: 641
Joined: Dec 2012

I suppose the difference is one or more tumors in other organs. I was Stage 3a. The tumor had invaded the veins, but microscopically. Now I thought the difference between 3a and 3b was whether the tumor had invaded the renal vein. Is that correct?

My docs told me that I have a 40-50% chance of recurrence, whereas Stage 2 was more like 20-25%. Still makes me nervous when I say that.

Does anybody know if that percentage drops if I don't have recurrence in the first 2 years? It must, otherwise why would they back off the observation after 2 years?

In any case, I've stopped thinking about these percentages. They tell me nothing about what will happen to me.

Todd

 

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

I can't believe it's taken so long for the penny to drop for an intelligent man!  However, I'm yet to be convinced that you'll manage to stay away from those sorts of stats!  

You're dead right when you say:

"They tell me nothing about what will happen to me."

I can make an observation, though - that you'll die of numeritis before you ever have the chance to die from cancer!  

I feel I'm a part of the age of the Quantified Self and I'm always fascinated by numerical data.  However, the power of statistics is being constantly subverted and I commend to your attention this comparatively recent item from

DataCrítica: International Journal of Critical Statistics, Vol 1, No 2 (2008)

 

Numerosis and Numeritis: Twin Pathologies of Contemporary Statistics

 

Karim F. Hirji

 

Abstract


Modern society suffers from two key afflictions: (i) the proliferation of quantification in all its facets (numerosis); and (ii) the production of volumes of dubious quality data, and widespread misuse and abuse of statistics (numeritis). Works that reflect on these afflictions generally portray a partial picture, have a built-in pro-corporate and pro-establishment bias, and do not account for the role of consumer culture, corporate power, and imperial nationalism in the entrenching them. By critically dissecting two books addressing these maladies, this essay seeks to promote an integrated, systemic perspective on the role and practice of statistics in society. While some critical analyses tend to foster a cynical view on numbers, this essay argues that humanity does need valid and relevant statistics to promote accountability, democracy, and social and economic justice. More than ever, people need to cultivate numerical literacy in order to combat the twin plagues of numerosis and numeritis.

 

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Oh yes the statistics...   those are just numbers... totally meaningless in the scheme of things... because the reality will be what is important... Even "IF" the odds were 99% against, if you are that 1% then the rest just don't mean crap...   In the end, a total waste of time... move on to something more meaningful in your life.  Yes life as in "living"...  we all have a lot of life left... go out and smell the roses.

Ron

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

A nice, succinct statement Ron.  With that philosophy, going into your current search for a soul-mate (and good lay!) , some lady is going to get very lucky soon, I'm sure.

By the way, some of us don't have a lot of life left but that's all the more reason to go out and smell the roses!!   Yesterday morning I'd not been out of the door for days and when I did, after a drop of rain, the air in the garden was like wine. 

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Wedge Master...  thanks.. but I do think many of us go that route.. wanting to "know"  but in reality we don't know.   The numbers do not give us an exact date, or any date at all. 

This reminds me of a story..  in the early 70's I met this guy.. He was in a wheel chair, yet he was able to drive and even ride a snowmobile.  He really wanted to be able to ride a motorcycle again.. a few of us built him a sidecar rig.. he then was riding with us.  But that is just the back ground..  One day I finally asked him about his legs.. or lack there of.  He smiled and even chuckled a bit as he told me his story.  He was in Nam, scared he was going to die..  and he slept with one eye open.  (I have heard a similar story from other Viet Nam Vets...)  But this guy came home without a scratch.. he chuckled again..  about 6 months later while crossing the street when a car ran the red light and took his legs out... Geeesh...  well then I asked how could he laugh..?   He said easy... when something bad happens you cad do three thingss...  cry woa is me.. laugh about it and move on, or shoot his brains out...  He chose to laugh and move on.   I will always remember him... an inspiration to me and many others..

Another pal of mine in the early 80's.. a biker guy.. he retired from the Movie Industry, bult himself a nice log cabin and rode his bike to a lot of rallies.  I went with him a few times.. fun guy.   Then I heard about his accident.. on the way home from a rally about a mile from home, his bike crossed the cener line right into a big truck.. done..  I heard that the truck driver was pretty shook up,   An autopsy showed he had a heart attack and was likely gone before the truck hit him.. the truck driver was relieved...  Those of us that knew him smiled... he went riding his bike, likely all happy...  Another life lesson for me.

So, it is possible that something other than K.C. will take me out... so me worrying about it won't fix anything..   That said, yes I have my moments..  I think we all do.   But I do try not to dwell on the ending.  Maybe I get too "preachy" and for that I do apologise.. 

I hope we all have a lot of time left and enjoy life as much as possible...

Ron

DonMiller's picture
DonMiller
Posts: 102
Joined: Feb 2013

Thank you Texas.  I didn’t intend to put you on the spot and I know it’s complicated presently unanswerable question.   From reading the Board I have come to respect your opinion.  I know I must have some sort of hole in my immune system.  Although I never took particularly good care of myself, I never get sick.  Never missed even a day of work.  I think this gave me a false sense of security over the years.

 

Ron  Its ok I know what my future likely holds.  About a week after my surgery I met with my Urologist and he was arrogantly, almost smugly telling my wife and I how he “got it all” and I would only need scans as a precaution.  My wife was so excited and happy.  In the meantime I am reading the Pathology Report.  Now I don’t know crap about medicine, but I am a lawyer and I have had more bullshit tossed my way for 32 years than I can ever remember.  Why do these guys repeatedly say this to people?   The next Urologist who tells a patient “I got it all” really needs to get his ass kicked.

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

Don, sometimes we feel confident we're making good sense, but other times not.  I hope my effort to answer your question about the changing probability of recurrence after the first year or two did make some sort of sense but please tell me, lawyer to lawyer (and no BS) did it help you to understand any better? 

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Hi Don.. I tend to think it is a tad more complicated..  Doctors are trained to heal people.. People want to hear they are healed.  Plus no matter what the outward personality of a doctor is..  I think it must wear on them to see patients die and nothing they can do about it...   I may be an odd duck, but I sympathize for the doctors.  They go through it daily and it must affect them in some way.  On the other hand the truth can be more painful..  I really can not say what is right or wrong.  Even though my Doctor gave a reasonable presentation, I was in denial.  That denial lasted almost a year when i found out about my Mets.   For me, it would not of been such a good year had I really known.  However we all are different..

Ron

TillieSOK's picture
TillieSOK
Posts: 246
Joined: Jul 2013

Don,

That sounds exactly like what happened with my urologist/surgeon and how I felt when I finally got a copy of my path report and my last CT scans.  Made me wonder if he read the same reports I was reading!  I'm with you on kicking some butt the next time he tells me " no worries, I got it all, and you are cured!" I call major BS on that!

DonMiller's picture
DonMiller
Posts: 102
Joined: Feb 2013

As I think about this, I think I have developed different opinions of Doctors and Surgeons.  My surgeons were certainly experienced and skilled….but almost like the skill of a  video game player or something.  I have extremely limited experience but the three surgeons I have dealt with had almost comic delusions of grandeur.   On the other hand I respect and appreciate my oncologist and he seems thoughtful knowledgeable and pretty caring. My internist is just a great guy.

TillieSOK's picture
TillieSOK
Posts: 246
Joined: Jul 2013

My surgeon is one of the top surgeons around, specializing in daVinci and hand assisted robotic surgery.  Technically, the surgery he performed was perfect...I have no complaints on the surgery.  What I am complaining about is his almost blasé attitude and the fact that either he didn't read the path report OR the last CT report...or he didn't have enough respect for my intelligence or fortitude to tell me what was on the reports.  I had to get the reports from my family physician's office!  I think we all deserve to be told the truth so that we can make intelligent, informed decisions about our lives and futures.

my surgeon said that all I would need was a chest X-ray after 6 months to make sure my lungs were ok.  I would never have gotten a CT scan post surgery if the oncologist my family dr sent me to hadn't written to the surgeon and told him I needed scans every three months for  the first year....

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

Doesn't it make you feel sorry for so many patients who don't have the articulacy or knowledge to stand up to the medics, challenge statements and fight their own corner?  Even highly intelligent patients can be gulled into false security by cavalier or blasé statements - you really do have to be a bit street-wise to appreciate how the system works - and where, at times, it doesn't do a good job.

TillieSOK's picture
TillieSOK
Posts: 246
Joined: Jul 2013

I think it helps a bit that I worked in a hospital environment for almost 8 years and heard the way some doctors talked and acted about their patients.  I will be much happier when I am seeing the oncologist on a regular basis.  When I have my next scan I am going to make sure they send ME a copy of the radiology report and I will have it in hand for my last visit with the close- mouthed surgeon!

DonMiller's picture
DonMiller
Posts: 102
Joined: Feb 2013

Are you still under the care of your Urogist? I am being monitored now by my oncologist and feel alot better.  We are close to kidney cancer twins......I mean what are the odds?  I always thought I would have a heart attack or a stroke.  I admit I didn't even know what a kidney did on the day I got the thrilling news. No one in my family and it's a big family has ever had cancer of any kind.  

My oncologist cjanged my scan schedules.......going 6 months( but with a more extensive scan) instead of 4 but increased blood tests to every month.  His reasoning is that a scan is equiveant to 1600  X rays, two months dont matter that much and the contrast is hard on the kidney......even though it is presently doing fine. I know  physicians differ on these issues but I feel my oncologist is well.......A Doctor. 

 

Don

TillieSOK's picture
TillieSOK
Posts: 246
Joined: Jul 2013

Yo, your own self, Don.  My surgeon want to see me one more time and he said he will schedule me for another CT scan before the appt., which will be in October.  The last scan, because of my blood work, they only gave me 1/2 contrast.  I am seeing my family doctor (whose office found the cancer) on the 15th of this month and I'm going to request that I be put under the care of Dr. Hart, the oncologist that I've seen once about a month after surgery. When he asked what kind of protocol had been set up for me, I said "nothing, except a chest X-ray at 6 months out".  I thought he was going to choke,( because he had a copy of the path report and the pre-surgery CT and MRI, and I had never seen those) and he said "I am going to write to your surgeon and to your family doctor and tell them what I, as an Oncologist, recommend.  CT/PET scans every three months for the first year, every 4 months for the second year, twice a year for the third year and once a year thereafter."  I couldn't figure out why, if the surgeon had "got it all" and I wasn't supposed to worry about anything, I needed all those tests.  Well, I read the path report and found out!  There is a HUGE difference between S1 G1 and S3a G2.  And yeah...we sure are kidney cancer twins!

i also have a Urologist that I trust who said he would be taking over my care in that aspect.  He also warned me that my surgeon was excellent and that while we needed his expertise, he was not the best 'conversationalist' in the world. I guess not! 

Trying to keep happy thoughts in my head today...it is my sister's birthday and the first one since she passed away from small cell lung cancer.  I wish she was here so I could talk to her about this.....

todd121
Posts: 641
Joined: Dec 2012

During my 20+ years in engineeing, I've seen accounts of management make some interesting cases for changing things and both were made using numbers in just this way.

I'll discuss the first situation. When I started, each group of 4-5 engineers had an administrative assistant who made copies for us, typed documents, and did a number of other miscellaneous tasks. This was very helpful and let us concentrate on doing engineering. Sometime in the mid-90's management started making a case for getting rid of these people to save money. Today we have 2 administrive assistants for about 150 employees in our locaion. So today, I spend a good part of my time making my own copies, typing up and correcting my own documents, and doing other things I used to get help with. The company appears to have saved money by getting rid of those people, but, in fact, now they are paying someone about 3 times what they were paying before to get the same things done. (Similarly, we've had reductions in technicians, which means I as a software engineer am doing my own soldering- this is a really bad idea. I can do it, but I'm just not very good at it and when I'm doing it, I'm not doing software, which is what I'm good at.)

The seond big trend I've witnessed was the outsourcing of engineering to India and China. A similar case was made using numbers to analyze salaries and accounting to explain how massive amounts of money would be saved. The things that couldn't be represented in numbers was pushed to the side (time zone differences, language and culture differences, etc.) and the decision was made to do this. Perhaps the jury is still out on whether this has been successful, but I never thought it was going to be successful. At least not the situation where managers and systems architects/engineers are in one country, while the "workers" implementing the code and building the circuit boards are in another. This is actually a complicated subject and probably needs to be broken down further into what has worked and what hasn't worked...

Predicting the future in complicated systems is really a difficult thing to do.

Todd

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