Going to surgeon to discuss having 9.0 cm mass and kidney removed

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BobA
BobA Member Posts: 4
edited May 2013 in Kidney Cancer #1

Hi I'm BobA, I am going to the surgeon today for my right kidney to be removed. I reall don't know what to ask I was told about a week ago it has to come out over the phone and still stunned at whats going on right now. My family is more concerned than I am . So any imput would be helpful. Thank you all for your help. My mass is 9.0 cm large.  Bob 

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  • DonMiller
    DonMiller Member Posts: 109
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    Surgery & Oncology

    Good Morning Bob

     

    There are tons of good people here that know a great deal more then I do.......but I went through a similar experience last October.  The surgery really isnt that bad. Everyone is nice to you and by the time that gets annoying you are feeling better. I was in the hopsital for two days and then spent ten days watching TV and taking perocets.  Then it was back to work.

    The mistake I made however was not seeing an oncologist before the surgery.  My urologist never mentioned it.  About a week after the surgery you get your pathology report back which broadly gives you a prognosis. Even then the urologist was very upbeat assuring me she got it all and I would only have to be scanned every four months as a precaution.  By the time I read more about it I lost the opportunity to particiapate in clinical trials which may have reduced my chance of a reoccurrence.  Anyway I thnik you should see an oncologist beforehand ......other then that dont worry about the surgery.

     

    Take care

     

    Don

  • foxhd
    foxhd Member Posts: 3,181 Member
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    DonMiller said:

    Surgery & Oncology

    Good Morning Bob

     

    There are tons of good people here that know a great deal more then I do.......but I went through a similar experience last October.  The surgery really isnt that bad. Everyone is nice to you and by the time that gets annoying you are feeling better. I was in the hopsital for two days and then spent ten days watching TV and taking perocets.  Then it was back to work.

    The mistake I made however was not seeing an oncologist before the surgery.  My urologist never mentioned it.  About a week after the surgery you get your pathology report back which broadly gives you a prognosis. Even then the urologist was very upbeat assuring me she got it all and I would only have to be scanned every four months as a precaution.  By the time I read more about it I lost the opportunity to particiapate in clinical trials which may have reduced my chance of a reoccurrence.  Anyway I thnik you should see an oncologist beforehand ......other then that dont worry about the surgery.

     

    Take care

     

    Don

    Good advice

    And choose your oncologist carefully. My experience was such that only after several consults did I find the life saving treatment that I am on.

  • Galrim
    Galrim Member Posts: 307
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    Just adding...

    ...to the good advice you already received. Bring a close friend or similar for the pathology report and consultation afterwards. Someone that can keep his head cold and help you remember what was said, and ask questions if needed. Often the patient and spouse are so emotional at that stage, that half the information is forgotten afterwards and important questions slip your mind.

    /G

  • icemantoo
    icemantoo Member Posts: 3,361 Member
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    Galrim said:

    Just adding...

    ...to the good advice you already received. Bring a close friend or similar for the pathology report and consultation afterwards. Someone that can keep his head cold and help you remember what was said, and ask questions if needed. Often the patient and spouse are so emotional at that stage, that half the information is forgotten afterwards and important questions slip your mind.

    /G

    Not fun

    BobA,

     

    Getting diagnosed with Kidney Cancer and being told you have to have major surgery right out of the gate is enough to scare anybody. We have all been thru this. Mine was almost 11 years ago. I would like to respond appropriatly to your post, but you have not given the size of your tumor. With that information others and myself can do more than just give you a big welcome.

     

    Icemantoo

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

    Just adding...

    ...to the good advice you already received. Bring a close friend or similar for the pathology report and consultation afterwards. Someone that can keep his head cold and help you remember what was said, and ask questions if needed. Often the patient and spouse are so emotional at that stage, that half the information is forgotten afterwards and important questions slip your mind.

    /G

    Agreeing With Others

    Great advice to take at least 1 person with you that can pay careful attention to what the doctor is telling you. It may not be a family member. In fact, it might be best if it was not. You want someone that can listen and help you remember to ask all your questions and keep track of the answers. I took 3 people in with me, and was glad I did that. Only 2 was necessary. I took a family member, but also my best friend to help me keep track because I didn't want to dump that onto my family. They are dealing with a lot. At least take 1, though. The doctor will have 1-2 people with him, and having your own "team" along helps balance things out.

    I also agree with the advice about talking to a medical oncologist soon. You want someone with experience with RCC. They aren't going to be easy to find. My uncle was a practicing oncologist for 30 years and only saw a handful of these cases in his practice, and he referred patients out in most of those cases to experts in other cities. Your run-of-the-mill oncologist will not be up on RCC. It's a fast changing field with many new medications available, and you need someone who knows about this. I'm lucky in that I live in the LA area, and there are RCC experts in LA and San Diego. However, I live in Orange County, and while there is a cancer center here, only 1 doctor had experience treating RCC, and he was not an "RCC expert", but he was also very busy and backed up and I had trouble getting in to see him. Most oncologists have a 48-hour policy that if you have a new diagnosis, they will get you in within 48 hours for a consult in cases like ours. You have to ask, or maybe even be a bit pushy about how important it is.

    Todd

     

  • BobA
    BobA Member Posts: 4
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    Just back from the surgeon

    The surgeon showed me the 9cm mass in my right kidney. I have surgery on the 10th of June. They also have to take the lymph node, adrenal gland and ureter. I don't know about the aftercare yet ie chemo,pills. They will find out more after surgery. Thank you for suggesting an oncologist. I will ask if the VA has one on call to discuss it.

  • NanoSecond
    NanoSecond Member Posts: 653
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    BobA said:

    Just back from the surgeon

    The surgeon showed me the 9cm mass in my right kidney. I have surgery on the 10th of June. They also have to take the lymph node, adrenal gland and ureter. I don't know about the aftercare yet ie chemo,pills. They will find out more after surgery. Thank you for suggesting an oncologist. I will ask if the VA has one on call to discuss it.

    Question

    I am very sorry you got that no doubt shocking news.  Mine was 11cm in my left kidney.

    You have just mentioned the VA.  Were you by any chance ever exposed to Agent Orange?

  • MDCinSC
    MDCinSC Member Posts: 574
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    BobA said:

    Just back from the surgeon

    The surgeon showed me the 9cm mass in my right kidney. I have surgery on the 10th of June. They also have to take the lymph node, adrenal gland and ureter. I don't know about the aftercare yet ie chemo,pills. They will find out more after surgery. Thank you for suggesting an oncologist. I will ask if the VA has one on call to discuss it.

    Keep heart BobA

    I just had my radical nephrectomy on Tuesday at the VA hospital in Augusta GA. While room conditions were crowded and quiet was at a premium (4 patients to a room) the quality of care was good.  Fact is I had three procedures at thesame time.  They cystoscoped a 1 cm stone from my bladder, did the nephrectomy, and repaired a hernia at at the same time! Trust your Doctors, but also question tem thoroughly.  Talk with the people on this board. I frankly would have been a wreck without the people on this board.  They helped me ask all the right questions.

    There are very talented people withthe VA. Keep heart and roll with it.  The dread has been the worst part.

  • metal_rabbit
    metal_rabbit Member Posts: 13
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    Don't over-worry!

    Bob:

    I am 61 and had my left kidney entirely removed 2 months ago, together with a 9cm x 8cm x 6cm tumour (and the surgeon excised my rib cartilage and I lost a litre of blood) in a 4.5 hour open surgery operation. I was well enough after 3 days to leave hospital (and walked half a mile to where my wife had parked her car!). I then slept for about 30 hours.

    You will get discomfort for a couple of months, but provided you are sensible with pain medication (only use it when the discomfort becomes pain), each day or 3 will show an improvement. You WILL get bad days, with more pain, but they will pass.

    Getting the bowels restarted is a nuisance; take medical advice on laxatives and things like prune juice until it's all working properly again. If you are on codeine for the pain (or co-codamol which is the same thing), bear in mind that it is a class B (UK) drug and has withdrawal symptoms, such as insomnia, so look it up and consult the medics.

    Don't push yourself too hard - you are not malingering, it is major surgery.

    Mine was totally asymptomatic and found by accident. The tumour was aggressive and stage 2, but there was no sign of cancer in the lymph glands or around the kidney, so prognosis is good. They won't be able to give you definite information on yours until they jump on in.

    Carpe diem

    Peter

  • GSRon
    GSRon Member Posts: 1,303 Member
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    Don't over-worry!

    Bob:

    I am 61 and had my left kidney entirely removed 2 months ago, together with a 9cm x 8cm x 6cm tumour (and the surgeon excised my rib cartilage and I lost a litre of blood) in a 4.5 hour open surgery operation. I was well enough after 3 days to leave hospital (and walked half a mile to where my wife had parked her car!). I then slept for about 30 hours.

    You will get discomfort for a couple of months, but provided you are sensible with pain medication (only use it when the discomfort becomes pain), each day or 3 will show an improvement. You WILL get bad days, with more pain, but they will pass.

    Getting the bowels restarted is a nuisance; take medical advice on laxatives and things like prune juice until it's all working properly again. If you are on codeine for the pain (or co-codamol which is the same thing), bear in mind that it is a class B (UK) drug and has withdrawal symptoms, such as insomnia, so look it up and consult the medics.

    Don't push yourself too hard - you are not malingering, it is major surgery.

    Mine was totally asymptomatic and found by accident. The tumour was aggressive and stage 2, but there was no sign of cancer in the lymph glands or around the kidney, so prognosis is good. They won't be able to give you definite information on yours until they jump on in.

    Carpe diem

    Peter

    Good Luck Bob

    Hi Bob..!  Sounds like you have the right attitude.!!  Hope your surgeon is familiar with Kidney Cancer, if not, then you may wish to find a surgeon that is..  This can be very important, more so with a somewhat large tumor, as Kidney Cancer is not that common in some parts of the country..  And you also may try to see an Oncologist before surgery and start asking questions.  I am on my third Oncologist, the first one was not within my insurance, the second was terrible, I fired her after the first visit..!  Now I have likely one of the best in the West..! 

    I bet you sleep all through the surgery..! 

    Good Luck..

    Ron

  • BobA
    BobA Member Posts: 4
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    Thank you all for responding

    I had an MRI and found out the cancer is in the prostrate too. Also the kidney cancer has attached to my inner wall. So, The surgeon ,Cheif of Urology at NJ Med School, is going to do both procedures at the same time. Thank you all for your support, Bob  

  • Keepinthefaith
    Keepinthefaith Member Posts: 8
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    BobA said:

    Thank you all for responding

    I had an MRI and found out the cancer is in the prostrate too. Also the kidney cancer has attached to my inner wall. So, The surgeon ,Cheif of Urology at NJ Med School, is going to do both procedures at the same time. Thank you all for your support, Bob  

    VA?

    we also went thru the VA and learned quickly to get out they are paying for oncologist on  the outside, so if they don't seem to give you good care you can get them  to pay for oncologist on the outside, and all your tests and meds.