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Post surgery scan 6 months later

jknorth
jknorth Member Posts: 44

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.

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Comments

  • MDCinSC
    MDCinSC Member Posts: 574
    I don't know either!

    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
    Texas_wedge Member Posts: 2,798
    Alas, I do know the answer

    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
    Eims Member Posts: 423
    hi jk i have my 6 month scan

    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
    GSRon Member Posts: 1,303
    Eims said:

    hi jk i have my 6 month scan

    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

    OK, so you are one of the

    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
    jknorth Member Posts: 44
    Thanks very much for the

    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
    Texas_wedge Member Posts: 2,798
    Question for jk

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

  • jknorth
    jknorth Member Posts: 44
    When I finished my surgery

    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
    Texas_wedge Member Posts: 2,798
    jknorth said:

    When I finished my surgery

    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.

    2%

    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
    Galrim Member Posts: 307

    2%

    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.

    Hmmmm...

    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
    Texas_wedge Member Posts: 2,798
    Galrim said:

    Hmmmm...

    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

    Hmmm

    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
    Galrim Member Posts: 307

    Hmmm

    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!

    Thanks :-)

    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

  • jknorth
    jknorth Member Posts: 44
    Follow up scan

    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.

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    Galrim said:

    Thanks :-)

    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

    Thanks :-)

    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).

  • DonMiller
    DonMiller Member Posts: 109
    jknorth said:

    Follow up scan

    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.

    Texas-Wedge

    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

  • todd121
    todd121 Member Posts: 1,448
    jknorth said:

    Follow up scan

    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.

    Mets and where/stats

    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
    todd121 Member Posts: 1,448
    5 years horizon

    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

  • todd121
    todd121 Member Posts: 1,448

    Thanks :-)

    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).

    Not to ruin anybody's fun

    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

  • cjm11
    cjm11 Member Posts: 11
    Hi Jk, you and I have about

    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.  :)

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    todd121 said:

    Not to ruin anybody's fun

    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

    Not to ruin anybody's fun

    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
    jknorth Member Posts: 44
    Good sleep is vital

    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.