This process makes no sense to me. Any info?

cakelady
cakelady Member Posts: 63

July, hubby had what we thought was a UTI.  He took antibiotics and it 'cleared up'.  I'm air-quoting, because it obviously could not have just cleared up, but it seemed to.

Four months later, another one that would not stop after three rounds of antibiotics, so his GP sent him for a CT.  CT scan showed 10cm mass on right kidney, report states 'consistent with RCC', nodes inflamed.  Sent to LSU/UMC in NOLA, bone scan came back clean.  It's not in his bones, brain (so they say) or the vena cava.  At this point, everyone is looking at a radical nephrectomy, barring any issues with the chest scan.

Dr. called Monday, said the scan came back with it in his chest and aorta, so they want to do oral chemo to shrink it before doing the RN.

My problem with all of this is that we haven't even had a biopsy, all it is is a bunch of scans.  He was told that if he does nothing, he's got no more than two years, but if the tumor (I think in the aorta) shrinks, they will consider a RN.  I don't understand how we are getting all this information without even having a biopsy.  He has no symptoms of anything; he put up a fence this weekend!  He feels fine, good appetite, no signs of another 'UTI', just a vague pain, which he's told is from the size of the mass, in his side.

All he keeps hearing is TWO YEARS, TWO YEARS.  Does any of this sound like anything anyone else here has experienced?  None of it makes sense to me.  I don't see how they even know what it is without pathology.  It makes no sense to me to not remove the kidney because that's less for his body to have to fight off.  We haven't even seen the scans yet.  Biopsy set for Monday, finally.

Frustrated.   SO frustrated.

«13

Comments

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    Sorry you have to be here.

    Cakelady,

     

    Occasionally a tumor will turn out benign, like 5 to 10%. However at 10 cm  the odds that it is benign are less than that. Given the fact that it is in his chest I'm not sure there is any purpose to the biopsy. At 10 cm it is pretty standard to do a full neph. Whether or not to do chemo to shrink the chest mets first is above my paygrade. At 10 cm this is something that has to be addreessed one way or the other ASAP. We are here to help you as all of us on the board have had a neph (partial or full). Mine was 13 years ago with a tumor a little over 4 cm. Do not take them up on doing nothing to see whether the 2 years is accurate. I wish I could give a more favorable spin to my response.

     

     

     

    Icemantoo

     

     

     

  • cakelady
    cakelady Member Posts: 63
    icemantoo said:

    Sorry you have to be here.

    Cakelady,

     

    Occasionally a tumor will turn out benign, like 5 to 10%. However at 10 cm  the odds that it is benign are less than that. Given the fact that it is in his chest I'm not sure there is any purpose to the biopsy. At 10 cm it is pretty standard to do a full neph. Whether or not to do chemo to shrink the chest mets first is above my paygrade. At 10 cm this is something that has to be addreessed one way or the other ASAP. We are here to help you as all of us on the board have had a neph (partial or full). Mine was 13 years ago with a tumor a little over 4 cm. Do not take them up on doing nothing to see whether the 2 years is accurate. I wish I could give a more favorable spin to my response.

     

     

     

    Icemantoo

     

     

     

    Thanks for the fast response

    We have no intention on finding out what doing nothing will do.

    I have emailed the urologist to try to get some time to talk to him about the scans and test results Friday when he has to go in for whatever consult they have him set up for.  Barring something major they are not telling us, I just don't understand not removing the kidney to remove the tumor so his body does not have to fight that much harder.  Maybe it's so far in his aorta they are afraid of him dying on the table.  I just don't know.  UMC is a veritable beehive and trying to get to anyone is an effort in itself.

    We got him on Medicaid for emergency purposes only.  We are not sick people (funny, not funny) so paying the exorbitant costs of insurance seemed so wasteful.  We are going to transition him to 'real' insurance via the ACA for 2016 during open enrollment, but in the mean time, we are kind of stuck with whatever Medicaid says.  I've called a highly-recommended oncologist in my area and I can pay cash for a consult for him to read the scans and give us a second opinion.  We keep hearing the doctors at UMC are world-class, as is the place itself, so while it may be just spinning wheels, I feel it's only fair to get that second opinion.  I feel like having Medicaid is a bit of a detriment right now; I don't know if we are being dismissed, or perhaps not receiving what we would otherwise by having 'real' insurance.  I also would prefer to work harder to pay premiums so everything else we've worked for doesn't get taken away from our son in the end.

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    icemantoo said:

    Sorry you have to be here.

    Cakelady,

     

    Occasionally a tumor will turn out benign, like 5 to 10%. However at 10 cm  the odds that it is benign are less than that. Given the fact that it is in his chest I'm not sure there is any purpose to the biopsy. At 10 cm it is pretty standard to do a full neph. Whether or not to do chemo to shrink the chest mets first is above my paygrade. At 10 cm this is something that has to be addreessed one way or the other ASAP. We are here to help you as all of us on the board have had a neph (partial or full). Mine was 13 years ago with a tumor a little over 4 cm. Do not take them up on doing nothing to see whether the 2 years is accurate. I wish I could give a more favorable spin to my response.

     

     

     

    Icemantoo

     

     

     

    Welcome to the forum, but

    Welcome to the forum, but sorry about how you got here. Your news must have devestated you both.

    I had a 13 cm tumor and full nephrectomy, so far so good! Lots of people here have proven that there is MUCH life after diagnosis. Don't be discouraged, or lose hope!

    So here is my input....is a biopsy really necessary? Thing is, the risk of the cancer spreading more becomes greater when doing a biopsy (spillage). They know he has cancer, so why risk it? (something to investigate). Go on another site - Smart Patients - a lot of knowledge there as well. It might be a good idea to get a second opinion as far as treatment possibilities. Depending where you live, you could get a good reference from people here or on Smart Patients.

    Don't be afraid to come on here and read, post, vent, cry, scream, support. We are here for you and will help you out as much as possible.

    Hugs

    Jojo

  • cakelady
    cakelady Member Posts: 63
    Jojo61 said:

    Welcome to the forum, but

    Welcome to the forum, but sorry about how you got here. Your news must have devestated you both.

    I had a 13 cm tumor and full nephrectomy, so far so good! Lots of people here have proven that there is MUCH life after diagnosis. Don't be discouraged, or lose hope!

    So here is my input....is a biopsy really necessary? Thing is, the risk of the cancer spreading more becomes greater when doing a biopsy (spillage). They know he has cancer, so why risk it? (something to investigate). Go on another site - Smart Patients - a lot of knowledge there as well. It might be a good idea to get a second opinion as far as treatment possibilities. Depending where you live, you could get a good reference from people here or on Smart Patients.

    Don't be afraid to come on here and read, post, vent, cry, scream, support. We are here for you and will help you out as much as possible.

    Hugs

    Jojo

    Thanks, again. I guess I'll be saying that a lot for a while.

    Here's what I don't understand.  I guess I need facts.  How do they KNOW it's cancer without a biopsy?  He painted cars for a long time, including two around the time the 'UTI' showed up.  Who's to say what's in his lungs is not some nasty overspray he sucked in past his respirator?  I mean, does cancer look like a certain thing?  The first CT of his kidney just showed a blur.  Up until Friday, they were still saying they don't even know if the nodes are being reactive or are actually affected, that they wouldn't know until they opened him up and felt them, hard or squishy. How did it not show anything in the aorta until the chest scan when from what I've read, it gets right in there by the kidney, like by the vena cava.  And it's not there, either.

    I want to find out whether embolism is an option to starve the tumor.

    I guess there's different types of denial.  I'm okay with it being cancer, if they KNOW it's cancer. Maybe I'm just in denial about the fact that they are just wanting to give him pills when everything I read says a RN is a good first step.

     

  • Bellweather
    Bellweather Member Posts: 102
    My 2 cents

    Cake Lady,

    I am from the MS Gulf Coast and had a 9cm rcc with invasion into my vena cava.  I was bleeding internally and my urologist told me if I did not go directly to Dr. Sean Collins (Oncology Surgeon at E or W Jeff) that he would no longer be my doctor.   I must tell you that he was absolutely correct as Dr. Collins is the leading expert in your area.  Please go get an opinion from him if you can.  Please do not be discouraged that he looks like Doogie Howser, there is plenty of literature about him you can look up.  I hope this helps you,

    Sincerely, 

    Bellweather

  • sblairc
    sblairc Member Posts: 585 Member
    It makes perfect sense to me

    Kidney cancer is pretty cut and dry on a CT scan. It will be a 10 cm mass and it will be vascular. Has it's own blood supply very clearly making it easy to confirm without a biopsy on a CT. 

    Lots of nephrectomys without biopsys have occured in the majority of us posting here (my husband included). 

    It is my best guess that removing the kidney with the tumor in the aorta would be too dangerous at this poiont. That is just my best guess as a layperson that reads. I would seek out a second opinion. 

    As for the "2 years" well we all know hear that is CRAP. Dont' believe it. Especially with therapies emerging and great ones becoming approved recently. 

  • cakelady
    cakelady Member Posts: 63
    sblairc said:

    It makes perfect sense to me

    Kidney cancer is pretty cut and dry on a CT scan. It will be a 10 cm mass and it will be vascular. Has it's own blood supply very clearly making it easy to confirm without a biopsy on a CT. 

    Lots of nephrectomys without biopsys have occured in the majority of us posting here (my husband included). 

    It is my best guess that removing the kidney with the tumor in the aorta would be too dangerous at this poiont. That is just my best guess as a layperson that reads. I would seek out a second opinion. 

    As for the "2 years" well we all know hear that is CRAP. Dont' believe it. Especially with therapies emerging and great ones becoming approved recently. 

    All this information makes me feel better.

    It doesn't seem so bleak.  Thanks to all of you.

     

    cupcakes all around!

  • medic1971
    medic1971 Member Posts: 225 Member
    cakelady said:

    Thanks, again. I guess I'll be saying that a lot for a while.

    Here's what I don't understand.  I guess I need facts.  How do they KNOW it's cancer without a biopsy?  He painted cars for a long time, including two around the time the 'UTI' showed up.  Who's to say what's in his lungs is not some nasty overspray he sucked in past his respirator?  I mean, does cancer look like a certain thing?  The first CT of his kidney just showed a blur.  Up until Friday, they were still saying they don't even know if the nodes are being reactive or are actually affected, that they wouldn't know until they opened him up and felt them, hard or squishy. How did it not show anything in the aorta until the chest scan when from what I've read, it gets right in there by the kidney, like by the vena cava.  And it's not there, either.

    I want to find out whether embolism is an option to starve the tumor.

    I guess there's different types of denial.  I'm okay with it being cancer, if they KNOW it's cancer. Maybe I'm just in denial about the fact that they are just wanting to give him pills when everything I read says a RN is a good first step.

     

    you need a second opinion...

    I see a lot of red flags with the story you are describing.  They don't know for 100% certainty that it is cancer without some type of pathology.  Also how are they going to try and shrink without even knowing what type of kidney cancer it is??? There's several different types of kidney cancer and some of those subtypes do not respond to treatments the same as the others do.  You need to be with an experienced urologist who is very familiar with renal cell carcinoma. MD Anderson is 6 hours and 40 minutes from UMC. I went there for my second opinion surgery and I had a great urologist here in my home town, but the experience issue is what troubled me. The doctor I saw here had done about 6 partial this HTML class. Value is partial nephrectomy in the past 12 months and the doctor at MD Anderson had done 4 in the week before my appointment.  

     

    Good luck!

     

  • Bellweather
    Bellweather Member Posts: 102
    I also second Medic

    After Dr. Collins and his choice of vascular surgeon performed my emergency mass nefrectomy,  I was diagnosed with mets nearly 2 yrs later and wenr to MD Anderson.  You csn not go wrong with that option either.  Whatever you decide, a 2nd opinion by an experienced specialist allways recommended in my opinion. 

    We are praying for you, there are more options at MD Anderson than the New Orleans area.

    Sincerely,

    Bellweather

     

     

  • nancybuck
    nancybuck Member Posts: 117
    cakelady said:

    All this information makes me feel better.

    It doesn't seem so bleak.  Thanks to all of you.

     

    cupcakes all around!

    Cake Lady

    I am a native of Nola, having just moved to Austin two years ago. I am so sorry we have to meet here due to your husband's cancer diagnosis.  University Medical Center is an outstanding facility, as is West Jefferson. My husband and I were treated at West Jeff for over 20 years and the doctors there are outstanding. 

    I was just diagnosed with Kidney Cancer in September and, fortunately, found an outstanding urology oncologist here in Austin who went to LSU Medical School! (Small World)

    My first question to my oncologist was concerning whether or not the cancer would be biopsied. Apparently, and I don't know how, but both the urologist and oncology urologist said that they did not need to do biopsies, or at least, in my case they would not have to.

    I hope you are able to find the answers you need for your and your husband's peace of mind.

    As I do everyday, I will keep you husband, you and all of our fellow followers on this site in my prayers.

     

    Hugs to all.

     

    Nancy

  • cakelady
    cakelady Member Posts: 63
    medic1971 said:

    you need a second opinion...

    I see a lot of red flags with the story you are describing.  They don't know for 100% certainty that it is cancer without some type of pathology.  Also how are they going to try and shrink without even knowing what type of kidney cancer it is??? There's several different types of kidney cancer and some of those subtypes do not respond to treatments the same as the others do.  You need to be with an experienced urologist who is very familiar with renal cell carcinoma. MD Anderson is 6 hours and 40 minutes from UMC. I went there for my second opinion surgery and I had a great urologist here in my home town, but the experience issue is what troubled me. The doctor I saw here had done about 6 partial this HTML class. Value is partial nephrectomy in the past 12 months and the doctor at MD Anderson had done 4 in the week before my appointment.  

     

    Good luck!

     

    I do, too.

    I'm no doctor, but I do know there's a certain order to things. The doctor originally scheduled to do the RN is tops in the area.  I read up on him.  He's through MD Anderson, specializes in this sort of thing, so I'm at least confident about him.

    I feel like this is moving sooooooo slow.  It's been three weeks already. I think the original scan from when his GP was concerned about the 'UTI' that would not go away was 10/28.  I don't like this waiting because I know nothing good can come of it.  I suppose some things take time; the oncologist's office I called about a separate consult told me that path takes at least a week to come back, so I know there's some amount of hurry up and wait we have to deal with.

  • cakelady
    cakelady Member Posts: 63

    I also second Medic

    After Dr. Collins and his choice of vascular surgeon performed my emergency mass nefrectomy,  I was diagnosed with mets nearly 2 yrs later and wenr to MD Anderson.  You csn not go wrong with that option either.  Whatever you decide, a 2nd opinion by an experienced specialist allways recommended in my opinion. 

    We are praying for you, there are more options at MD Anderson than the New Orleans area.

    Sincerely,

    Bellweather

     

     

    working on paperwork

    I have orders that were already on the books this week and it was too late to call the people and cancel on them, so this week is kind of a wash.  Not that we can do everything anyway because we have to wait to collect all the scans and find out about the biopsy, but I am doing my research and writing down everything I can so I at least know what to ask.

    The plan is to transition him to real insurance for 2016 and then go after everything we can as far as opinions and options.  We've already been told that the path report for the biopsy won't be back until 12/08, so that's another three weeks.

    It seems like so much foot dragging.  It's already been three weeks since the initial report came back showing the mass.  Do things typically move this slowly?

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    I know this is SO

    I know this is SO frustrating. Currently I am waiting (3weeks so far) for a biopsy appointment for my thyroid. When they found my 13 cm kidney mass 2 years ago it was 2 MONTHS before my nephrectomy was scheduled. My problem was that local urologists didn't want to touch it. They referred me to an excellent, but in-demand uro-oncologist. Kidney cancer is somewhat slow growing. However, that doesn't make the waiting any easier!! It is the hardest part. Hang in there. I know right now it is all consuming for you. But there is excellent care and new procedures and medications that are making great headway!

    Thinking about you!

    Hugs

    Jojo

     

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    Cancer

    There is always a wait for this test and that test before anything is done.  My youngest son at 42 was diagnosed with kidney cancer.  No biopsy because they said there was a large mass contained in the kidney and after removal we were told it was RCC.  He wanted to finished getting his teacher's degree before having it removed -- something like 2-3 months and the specialist agreed.  He did find and there was no spread.  Now almost 7 years later they have found a suspicious spot on his other kidney.  So far he has had a CT and sometime of ultrasound and they still can't determine what it is.  His wife asked about a biopsy and was told not at this time.  So on 12/1 they are going to do a CT with contrast even though it can be dangerous to the kidney and a scope to look into his bladder because he was passing blood.  Now he does has a history of kidney stones for years. He was feeling fine and having no problems until he passed the blood.  The only thing he was dealing with was his father's death.   When they went to see the specialist his wife had a list of questions and kept asking them.  She told me she was very pleased with the time the doctor spent with them and answering their questions.  Their first specialist had left UT (Univ of Tenn hospital).  Due to his age the first time, I feel, his insurance would never approve an MRI or some other tests.  Hopefully this time, if the specialist feels it necessary, an MRI and bone scan will be done.

    This waiting is horrible but we have been thru it before.  His father just passed away after a 5 year battle with cancer and no it wasn't kidney cancer.  His was head and neck that kept returning and spreading.  And I remember the waiting to have a biopsy and then to start treatment and then to have surgery and then for all the testing done afterwards.  It was never quick and even waiting to get a doctor appointment with the specialist was a wait.

    Wishing you and your family peace and comfort  --  Sharon

  • MattInVa
    MattInVa Member Posts: 50
    cakelady said:

    working on paperwork

    I have orders that were already on the books this week and it was too late to call the people and cancel on them, so this week is kind of a wash.  Not that we can do everything anyway because we have to wait to collect all the scans and find out about the biopsy, but I am doing my research and writing down everything I can so I at least know what to ask.

    The plan is to transition him to real insurance for 2016 and then go after everything we can as far as opinions and options.  We've already been told that the path report for the biopsy won't be back until 12/08, so that's another three weeks.

    It seems like so much foot dragging.  It's already been three weeks since the initial report came back showing the mass.  Do things typically move this slowly?

    Hi

    To relate more experience. I went to the ER with pain and blood in urine on Sept 26. I had an 11cm mass on my RT Kidney extending to my vena cava but before my heart. They operated within 3 days to remove it. The doctor postponed all other scheduling to do mine. I have to say they where johnny on the spot even contacting me same day as my diagnosis. To be honest when dealing with the the major veins and arteries it becomes a much more involved surgery.  They never did a biopsy on mine beforehand but by that point my kidney was a mess anyway and a contrast CT tells the story. The ureter was becoming blocked with blood clots and backing up, hence the flank pain. In the case of it being in the chest you will usually have your urologist and a chest cracker also. They had one on standby for me just in case they needed to go above the diaphram. I believe that is why they would like to shrink it, keep out of the chest. I would call BS on the biopsy end though.

    I was not on medicaid but just by chance for the first time in years taken a short term policy on insurance a few weeks before my symtoms showed up. I too will have to look at the ACA plans but to be honest in my area they are aweful for cancer. Almost all are HMO and the only 1 or 2 PPO/POS do not include any of the cancer centers that do advanced studies or treatment such as HDIL-2. At most they pay  50/50 for out of network. Unfortunately there are few options for coverage due to the pre-existing nature of our disease. 

    Depending on income though the drug companies have free or reduced drugs available, I have utilized the Novartis patient foundation and they supply me with my Votrient. 

    Disability through SS is another option, it allows medicare to kick in after two years (Perhaps earlier, still researching) Stage IV kidney cancer is a compasionate allowance for disability.

    I feel for you. I have been healthy and fit all my life, never smoked and still struck by this at a realitvely young age (Im 45)

     

    Matt

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    Ladylacy said:

    Cancer

    There is always a wait for this test and that test before anything is done.  My youngest son at 42 was diagnosed with kidney cancer.  No biopsy because they said there was a large mass contained in the kidney and after removal we were told it was RCC.  He wanted to finished getting his teacher's degree before having it removed -- something like 2-3 months and the specialist agreed.  He did find and there was no spread.  Now almost 7 years later they have found a suspicious spot on his other kidney.  So far he has had a CT and sometime of ultrasound and they still can't determine what it is.  His wife asked about a biopsy and was told not at this time.  So on 12/1 they are going to do a CT with contrast even though it can be dangerous to the kidney and a scope to look into his bladder because he was passing blood.  Now he does has a history of kidney stones for years. He was feeling fine and having no problems until he passed the blood.  The only thing he was dealing with was his father's death.   When they went to see the specialist his wife had a list of questions and kept asking them.  She told me she was very pleased with the time the doctor spent with them and answering their questions.  Their first specialist had left UT (Univ of Tenn hospital).  Due to his age the first time, I feel, his insurance would never approve an MRI or some other tests.  Hopefully this time, if the specialist feels it necessary, an MRI and bone scan will be done.

    This waiting is horrible but we have been thru it before.  His father just passed away after a 5 year battle with cancer and no it wasn't kidney cancer.  His was head and neck that kept returning and spreading.  And I remember the waiting to have a biopsy and then to start treatment and then to have surgery and then for all the testing done afterwards.  It was never quick and even waiting to get a doctor appointment with the specialist was a wait.

    Wishing you and your family peace and comfort  --  Sharon

    First of all, I am so sorry

    First of all, I am so sorry for ALL you and your hubby are going through right now. Yes, the waiting is difficult. BUT I am glad your hubby has YOU to advocate and fight on his behalf. He's so lucky. The picture of the two of you says it all!

    Just know WE are here to help you through this struggle and walk along side you if you want us to.

    SmartPatients.com is another good source to gain information and support.

    Seems you already are receiving such good information from us.

    I too had to wait for about 2.5 months, but my tumor was small, yet in a precarious place in kidney so had to have a radical nephrectomy. the Urologist I saw showed me the difference between the suspect neoplasm's margins and the cysts I had too.

    I am doing fine nearly two years later. AND there are such good treatments out  there.

    I would just ask that you get 2nd opinions to ease your mind.

    Tell your hubby a whole TROOP of CSN warriors is behind him all the way!!

    Hugs to you both!

    Jan

  • resistance2
    resistance2 Member Posts: 16 Member
    cakelady said:

    All this information makes me feel better.

    It doesn't seem so bleak.  Thanks to all of you.

     

    cupcakes all around!

    My 2 cents:
    First of all

    My 2 cents:

    First of all sorry to hear, my guess about the biopsy is that i was told inserting a needle into the rcc tumour could cause it grow, someone on the board described eloquently as a dandellion spreading out when disturbed, so based on the location aorta they are being caution of doing biopsy, the 2 year rule is all bull, with the medicines around its way longer. All the best.

     

     

  • cakelady
    cakelady Member Posts: 63

    My 2 cents:
    First of all

    My 2 cents:

    First of all sorry to hear, my guess about the biopsy is that i was told inserting a needle into the rcc tumour could cause it grow, someone on the board described eloquently as a dandellion spreading out when disturbed, so based on the location aorta they are being caution of doing biopsy, the 2 year rule is all bull, with the medicines around its way longer. All the best.

     

     

    Biopsy is scheduled for Monday.

    I'm going to ask about all of this before we have it done.  It makes sense both ways- yes, to find out what kind it is to properly treat, no, because it will disturb it.

  • foroughsh
    foroughsh Member Posts: 779 Member
    I'm sorry you had to join, we

    I'm sorry you had to join, we all understand how you feel because we've all been there. Mine was 10cm and seemesd confined to the kidney so I had emergency radical neph, and pathogy showed it was really confined. But I've read some other stories that seemed lime yours, when there are some complexity Docs prefer ambulisation/oral drug,.... And about biopsy,well there is almost no use of biopsy when we talk about kidney carcinoma, they can almost determine if it's malignant or benign by looking at CT scans. Although the exact info will come after the surgery is done and the tumor is sent to the pathology department.

    Forough

     

     

  • JoanneNH
    JoanneNH Member Posts: 115
    cakelady said:

    working on paperwork

    I have orders that were already on the books this week and it was too late to call the people and cancel on them, so this week is kind of a wash.  Not that we can do everything anyway because we have to wait to collect all the scans and find out about the biopsy, but I am doing my research and writing down everything I can so I at least know what to ask.

    The plan is to transition him to real insurance for 2016 and then go after everything we can as far as opinions and options.  We've already been told that the path report for the biopsy won't be back until 12/08, so that's another three weeks.

    It seems like so much foot dragging.  It's already been three weeks since the initial report came back showing the mass.  Do things typically move this slowly?

    What are they going to

    What are they going to biopsy?  The kidney mass or something else?