margins after tumor removal

VeryAnxious
VeryAnxious Member Posts: 67
edited March 2014 in Kidney Cancer #1
After visiting my surgeon he told me the cancer was a stage 2, and not to worry. He did not get clean margins since it was actually lying of the renal artery and there was no way to get them. But he did get it all.
Has anyone heard of this. Gosh I was hoping for better news and I know this sounds selfish, but since June this has been a nightmarish ride. I have other health concerns.
I need to get a chest xry for shortness of breath and in 3 months blood tests for the kidney function (he hopes it is at about 40 45%) and a renal nuclear test. I am so confused. I don't if I should do anything or just worry. I have little family support.

Comments

  • Von55
    Von55 Member Posts: 57
    #2
    Hi! No wonder you're feeling
    Hi! No wonder you're feeling anxious- it sounds like you have not received any clear info from your surgeon. Did you have a radical nephrectomy? Are you able to get an exact report from him/her with all the info you need? If there are no clear margins & the cancer remains in the renal artery, why did he say that he "got it all"? I think you really need to ask more questions, and keep persisting if you don't understand- so often a doctor will speak in terms that don't make much sense to a layman. Can your referring doctor explain the report to you? Often a GP is the best one to talk to as they experience patients as people rather than clinically & surgically. It's your right to know what's going on in your body, so don't despair- ask questions!
    This surgery is a major operation and it's really important to let yourself heal- anxiety will delay the process and make you miserable. You'll be having tests soon and if anything is wrong it will be picked up and dealt with, just as your RCC was. There comes a point where we just have to trust that we'll be ok- with this surgery, usually the cancer is gone totally. This can be hard to accept, but if your cancer really is gone, believe it, and rejoice!
    In the meantime, find out as much as you can- the unknown is much more frightening than the reality. All the best to you, and I hope you find the peace you're needing!
    Von xx
  • VeryAnxious
    VeryAnxious Member Posts: 67
    #3
    Von55 said:

    Hi! No wonder you're feeling
    Hi! No wonder you're feeling anxious- it sounds like you have not received any clear info from your surgeon. Did you have a radical nephrectomy? Are you able to get an exact report from him/her with all the info you need? If there are no clear margins & the cancer remains in the renal artery, why did he say that he "got it all"? I think you really need to ask more questions, and keep persisting if you don't understand- so often a doctor will speak in terms that don't make much sense to a layman. Can your referring doctor explain the report to you? Often a GP is the best one to talk to as they experience patients as people rather than clinically & surgically. It's your right to know what's going on in your body, so don't despair- ask questions!
    This surgery is a major operation and it's really important to let yourself heal- anxiety will delay the process and make you miserable. You'll be having tests soon and if anything is wrong it will be picked up and dealt with, just as your RCC was. There comes a point where we just have to trust that we'll be ok- with this surgery, usually the cancer is gone totally. This can be hard to accept, but if your cancer really is gone, believe it, and rejoice!
    In the meantime, find out as much as you can- the unknown is much more frightening than the reality. All the best to you, and I hope you find the peace you're needing!
    Von xx

    thanks so much for the
    thanks so much for the reply. I am awaiting the pathology report. I had a robotic partial nephrectomy. He told me the tumor was lying on the renal artery. I am going for a chest x ray tomorrow since I am experiencing shortness of breath.
    I am so wrung out. When u say report, are you talking the pathology report? So I am guessing this is unusual for this kind of surgery?
    I feel he gets upset with me asking questions, but it is probably me. No one really understands in my family. I will get the report and ask more questions. thanks
  • Von55
    Von55 Member Posts: 57
    #4
    VeryAnxious said:

    thanks so much for the
    thanks so much for the reply. I am awaiting the pathology report. I had a robotic partial nephrectomy. He told me the tumor was lying on the renal artery. I am going for a chest x ray tomorrow since I am experiencing shortness of breath.
    I am so wrung out. When u say report, are you talking the pathology report? So I am guessing this is unusual for this kind of surgery?
    I feel he gets upset with me asking questions, but it is probably me. No one really understands in my family. I will get the report and ask more questions. thanks

    Yes, wait 'til you get a
    Yes, wait 'til you get a look at the path report- my doctor's the same, he gets really curt and impatient & I feel like a bit of an idiot! He almost implies that I'm doubting him, but I guess that attitude comes from his surgical training- he has to be precise & decisive when he's operating, with no room for hesitation or fumbling around. I still don't have any info on my operation yet (it was an open partial, 3 weeks ago) but I'm guessing that if there were positive margins or mets then I would be scheduled for an earlier appointment with him than one for 6wks after the Op. That's what I'm hoping, anyway!
    I'm sorry that your family are not more understanding- that's where forums like this one, and your friends, can really help. There are a lot of us in the same boat- this is quite a rare form of cancer (less than 3 per cent of all cancers) but people are always willing to help another going through the same thing. In the US you have some great kidney cancer websites- worth checking out for some in depth explanations of this beast.
    Take care
  • VeryAnxious
    VeryAnxious Member Posts: 67
    #5
    Von55 said:

    Yes, wait 'til you get a
    Yes, wait 'til you get a look at the path report- my doctor's the same, he gets really curt and impatient & I feel like a bit of an idiot! He almost implies that I'm doubting him, but I guess that attitude comes from his surgical training- he has to be precise & decisive when he's operating, with no room for hesitation or fumbling around. I still don't have any info on my operation yet (it was an open partial, 3 weeks ago) but I'm guessing that if there were positive margins or mets then I would be scheduled for an earlier appointment with him than one for 6wks after the Op. That's what I'm hoping, anyway!
    I'm sorry that your family are not more understanding- that's where forums like this one, and your friends, can really help. There are a lot of us in the same boat- this is quite a rare form of cancer (less than 3 per cent of all cancers) but people are always willing to help another going through the same thing. In the US you have some great kidney cancer websites- worth checking out for some in depth explanations of this beast.
    Take care

    Hi
    Well I wish you good luck and am sure if after 3 weeks you have not heard anything, that is good. You are doing well for an open partial. Mine was robotic. What you said about the feedback from your surgeon sounds so familiar. I do wonder if he thinks I am doubting him, especailly since he was very emphatic when he said "I know I got it all".
    I guess it would have been so much easier if I were have been able to get clear margins had it not been lying on the vein. I just need to be positive thanks again. and good luck. So I am guessing 9 weeks is when you have a newxt consult after surgery. What country are you in/ I see mine again in 3 months> darlene
  • pbjoseph1
    pbjoseph1 Member Posts: 10
    #6
    VeryAnxious said:

    Hi
    Well I wish you good luck and am sure if after 3 weeks you have not heard anything, that is good. You are doing well for an open partial. Mine was robotic. What you said about the feedback from your surgeon sounds so familiar. I do wonder if he thinks I am doubting him, especailly since he was very emphatic when he said "I know I got it all".
    I guess it would have been so much easier if I were have been able to get clear margins had it not been lying on the vein. I just need to be positive thanks again. and good luck. So I am guessing 9 weeks is when you have a newxt consult after surgery. What country are you in/ I see mine again in 3 months> darlene

    I had my surgery Sept 23rd.
    I had my surgery Sept 23rd. My tumor was also lying on the renal vein. When the surgeon was done with the surgery he told us twice that when the pathology comes back to not expect the margins to be clear because of this. When he called with the results the pathologist determined the margins were "close but clear." I don't really understand the explanation that was given, but the surgeon assured us that he got it all, just like yours did. I had a 2 week followup visit, and then go back in 6 months for scans.
  • VeryAnxious
    VeryAnxious Member Posts: 67
    #7
    pbjoseph1 said:

    I had my surgery Sept 23rd.
    I had my surgery Sept 23rd. My tumor was also lying on the renal vein. When the surgeon was done with the surgery he told us twice that when the pathology comes back to not expect the margins to be clear because of this. When he called with the results the pathologist determined the margins were "close but clear." I don't really understand the explanation that was given, but the surgeon assured us that he got it all, just like yours did. I had a 2 week followup visit, and then go back in 6 months for scans.

    Can't thank you enought for
    Can't thank you enought for your reply. I guess that is what happens in that location. I just hear all of these other cases, but I just need to accept mine is different. What type of scan do you have. I go back in 3 months for my renal scan. Were they able to save most of your kidney. Becuase of 66 minutes clamped, mine will be happy with 40-45%. thanks again and take care
  • pbjoseph1
    pbjoseph1 Member Posts: 10
    #8
    VeryAnxious said:

    Can't thank you enought for
    Can't thank you enought for your reply. I guess that is what happens in that location. I just hear all of these other cases, but I just need to accept mine is different. What type of scan do you have. I go back in 3 months for my renal scan. Were they able to save most of your kidney. Becuase of 66 minutes clamped, mine will be happy with 40-45%. thanks again and take care

    The surgeon said I have 80%
    The surgeon said I have 80% of the kidney left. I will have an MRI of the Abdomen and a chest x ray in 6 months.
  • Von55
    Von55 Member Posts: 57
    #9
    VeryAnxious said:

    Hi
    Well I wish you good luck and am sure if after 3 weeks you have not heard anything, that is good. You are doing well for an open partial. Mine was robotic. What you said about the feedback from your surgeon sounds so familiar. I do wonder if he thinks I am doubting him, especailly since he was very emphatic when he said "I know I got it all".
    I guess it would have been so much easier if I were have been able to get clear margins had it not been lying on the vein. I just need to be positive thanks again. and good luck. So I am guessing 9 weeks is when you have a newxt consult after surgery. What country are you in/ I see mine again in 3 months> darlene

    Hi
    I'm in Australia! I had my surgery in a great regional hospital north of Sydney, and my specialist did the Op- under Medicare the whole thing was free; so fortunate! I really want to ask him all the details- where the tumour was exactly, how big, what kind, what margins, why he took the adrenal gland, did he remove a rib etc. In Australia it's usual to do laproscopic radicals, but open partials because of the difficulty in preserving the remaining part of the kidney etc. An open partial might be the "Gold Standard" but a 16" incision hurts like crazy and takes ages to heal.
    3 months is a long time to wait for your appt, esp if you're anxious. Hopefully you'll be able to talk with other people on the forum who've had renal vein involvement, and they'll be able to put your mind at ease. Knowledge is power!
    All the best, Von
  • VeryAnxious
    VeryAnxious Member Posts: 67
    #10
    Von55 said:

    Hi
    I'm in Australia! I had my surgery in a great regional hospital north of Sydney, and my specialist did the Op- under Medicare the whole thing was free; so fortunate! I really want to ask him all the details- where the tumour was exactly, how big, what kind, what margins, why he took the adrenal gland, did he remove a rib etc. In Australia it's usual to do laproscopic radicals, but open partials because of the difficulty in preserving the remaining part of the kidney etc. An open partial might be the "Gold Standard" but a 16" incision hurts like crazy and takes ages to heal.
    3 months is a long time to wait for your appt, esp if you're anxious. Hopefully you'll be able to talk with other people on the forum who've had renal vein involvement, and they'll be able to put your mind at ease. Knowledge is power!
    All the best, Von

    Thanks and sounds like you
    Thanks and sounds like you are doing well. Mine did have positive margins and of course the surgeon explained. He also removed some benign cysts and fatty angio. I just am wondering am I panicing unncessarily (as my family thinks, I can not even talk about it with them) or should I be pro active and if so what do I do. Go somewhere else or just wait for the 3 months. I want to be positive, but after all i have been trhu and reading others posts, it is hard. thanks for all your help
  • cyndeea
    cyndeea Member Posts: 1
    edited October 2016 #11
    Positive surgical margins after heminephrectomy

    Hi!  I had a partial nephrectomy (a little more than half my kidney removed)  August 22 for clear cell renal cell carcinoma.  My surgical margins were not clear.  I am a nurse so I had chosen to get my report and review it before I went back for my surgical follow-up.  The surgeon acted like everything was going great, and when I told him I was aware my margins were not clear and it concerned me, he became very flippant and said it didn't concern him.  HE wasn't worried about that! (this is a VERY good surgeon at a teaching hospital!)  He then set me up for a follow-up in 5 months!  The survivorship nurse took me into a room and talked to me, suggesting I get a second opinion- if only for my peace of mind.  I have a second opinion scheduled at a major medical facility next week.  I do not understand why doctors have to be so arrogant, and act insulted if we ask questions about our cancer.  I firmly believe you must be your own advocate when it comes to healthcare.  I've seen too many fall through the cracks.  Please, if in doubt, get a second opinion.  Even if it is just for your own peace of mind, it is worth it.  No one understands the fears unless they have had the cancer diagnosis.  

  • lobbyist0724
    lobbyist0724 Member Posts: 515 Member
    #12
    cyndeea said:

    Positive surgical margins after heminephrectomy

    Hi!  I had a partial nephrectomy (a little more than half my kidney removed)  August 22 for clear cell renal cell carcinoma.  My surgical margins were not clear.  I am a nurse so I had chosen to get my report and review it before I went back for my surgical follow-up.  The surgeon acted like everything was going great, and when I told him I was aware my margins were not clear and it concerned me, he became very flippant and said it didn't concern him.  HE wasn't worried about that! (this is a VERY good surgeon at a teaching hospital!)  He then set me up for a follow-up in 5 months!  The survivorship nurse took me into a room and talked to me, suggesting I get a second opinion- if only for my peace of mind.  I have a second opinion scheduled at a major medical facility next week.  I do not understand why doctors have to be so arrogant, and act insulted if we ask questions about our cancer.  I firmly believe you must be your own advocate when it comes to healthcare.  I've seen too many fall through the cracks.  Please, if in doubt, get a second opinion.  Even if it is just for your own peace of mind, it is worth it.  No one understands the fears unless they have had the cancer diagnosis.  

    Studies show positive margin is not a significant risk factor

    I personally worry about the same thing as well, my doctor told me the tumour is right beside the vein but he was able to get a negative margin (very small in terms of clearance). But he explained to me, for kidney cancer, no matter how small the clearance is, as long as there is a rim of healthy cells in between the tumor and the edge, it is called negative margin. I am still a bit concern about it, but my doctor told me I am cured...

    Hope the info below can ease you mind. :)

    https://www.auanet.org/university/abstract_detail.cfm?id=PD17-11&meetingID=14ORL

    One study also mentioned the possible reasons why PSM does not incurr more recurrence than NSM:

    "Compared to surgery for other solid cancer types, PN has several unique features that might account for our inability to demonstrate that positive margins adversely affect clinical outcome. First, to achieve adequate renal parenchymal hemostasis following tumor excision, surgeons often fulgurate the cortical rim of the PN bed (avoiding thermal injury to the renal medulla or collecting system) using electrocautery or argon beam coagulation. This may potentially eradicate any residual cancer cells by virtue of thermal destruction and attain an “additional margin.” Second, renal ischemia induced by clamping of the renal artery might extirpate cells with high metabolic requirements, specifically cancer cells. Third, the natural history of a residual microscopic focus of renal cancer might be considerably protracted, such that it requires a longer follow-up to manifest clinically. Lastly, false positive margins may result from inadvertent capsulotomy during specimen processing, and false negative margins may result from a sampling error. False positives or false negatives might explain, in part, our favorable oncologic outcomes for patients with PSM."...

     

  • rhominator
    rhominator Member Posts: 233 Member
    edited October 2016 #13
    cyndeea said:

    Positive surgical margins after heminephrectomy

    Hi!  I had a partial nephrectomy (a little more than half my kidney removed)  August 22 for clear cell renal cell carcinoma.  My surgical margins were not clear.  I am a nurse so I had chosen to get my report and review it before I went back for my surgical follow-up.  The surgeon acted like everything was going great, and when I told him I was aware my margins were not clear and it concerned me, he became very flippant and said it didn't concern him.  HE wasn't worried about that! (this is a VERY good surgeon at a teaching hospital!)  He then set me up for a follow-up in 5 months!  The survivorship nurse took me into a room and talked to me, suggesting I get a second opinion- if only for my peace of mind.  I have a second opinion scheduled at a major medical facility next week.  I do not understand why doctors have to be so arrogant, and act insulted if we ask questions about our cancer.  I firmly believe you must be your own advocate when it comes to healthcare.  I've seen too many fall through the cracks.  Please, if in doubt, get a second opinion.  Even if it is just for your own peace of mind, it is worth it.  No one understands the fears unless they have had the cancer diagnosis.  

    I've got 'em

    Hi Cyndeea, I had positive margins into the vena cava after a radical nephrectomy. Been cruzin' along on Votrient for almost three years now without it being an issue.

  • stub1969
    stub1969 Member Posts: 986 Member
    #14
    I did too

    Hi, Cyndeea.  I had a partial nephrectomy on August 26.  My pathology report showed that I had positive margins.  Right away I send a note to the Urology department where I was treated.  I was ready to go back on the table to get whatever cancer was left.  Well, later that day I sent the note, one of the doctors on the surgical team that worked on me called.  He explained that I had microscopic positive margins on part of the cut.  He said he was sure any left over cancer cells were burned as they cut the tumor out.  BUT, he also said that they would be more agressive in monitoring me with scans every 3 months for a couple years then to 6 month scans.  He referred to a number of studies that indicate the rate of reoccurance of positive margins in a partial with a tumor like mine doesn't necessarily mean the cancer will return. 

    Here is one study that I read that supports these comments:  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2704565/

    Here is another one from the National Institute of Health.  In this one recurrance chance does increase IF it was a high risk tumor (pT2-3a): https://www.ncbi.nlm.nih.gov/pubmed/26907508

    Trust me, I know what this does to you.  My first set of scans is in a month from now and I'm concerned about this.  Since my tumor was pT1b and not considered high risk, I'm praying for no return.  I wish you luck and peace as you travel this journey.  Keep us updated, so we can learn from each other.

    Stub

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