Recurrence

rae_rae
rae_rae Member Posts: 300
I got my CT scan results back today and my cancer has come back. I have a tumor 3 X 4cm in the area where my left kidney was. Has anyone else had this happen and what did you do next? I am considering going to Cleveland Clinic this time around. I saw a urologist last year for my nephrectomy and have been seeing my GP for follow up since. This is the first CT scan I have had since my diagnosis one year ago this week.

Rae
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Comments

  • jona187
    jona187 Member Posts: 71
    Rae,
    What type of RCC did

    Rae,

    What type of RCC did you have?

    What has your GP said?
  • rae_rae
    rae_rae Member Posts: 300
    jona187 said:

    Rae,
    What type of RCC did

    Rae,

    What type of RCC did you have?

    What has your GP said?

    I had clear cell. My GP said
    I had clear cell. My GP said whatever I want to do she would refer me. She has notified my urologist but I want to go where they specialize in kidney cancer this time around.
  • jona187
    jona187 Member Posts: 71
    rae_rae said:

    I had clear cell. My GP said
    I had clear cell. My GP said whatever I want to do she would refer me. She has notified my urologist but I want to go where they specialize in kidney cancer this time around.

    Great. Stay vigilant. All
    Great. Stay vigilant. All will be well, just stay on top of those doctors. What type of tissue is the cancer on? Did they tell you that?
  • rae_rae
    rae_rae Member Posts: 300
    jona187 said:

    Great. Stay vigilant. All
    Great. Stay vigilant. All will be well, just stay on top of those doctors. What type of tissue is the cancer on? Did they tell you that?

    It's all a blur to me right
    It's all a blur to me right now. I walked out without a copy of the report but I can obtain it easily enough. It's basically in the space where my kidney used to be -that's all I can tell you right now. I just discovred my insurance isn't accepted at Cleveland Clinic. I am in Michigan. If anyone knows of a Dr. that specializes in kidney cancer in my area let me know. So far both UofM and Cleveland do not accept my insurance. I may have to appeal. Sigh.

    Rae
  • newenglandguy
    newenglandguy Member Posts: 66
    rae_rae said:

    It's all a blur to me right
    It's all a blur to me right now. I walked out without a copy of the report but I can obtain it easily enough. It's basically in the space where my kidney used to be -that's all I can tell you right now. I just discovred my insurance isn't accepted at Cleveland Clinic. I am in Michigan. If anyone knows of a Dr. that specializes in kidney cancer in my area let me know. So far both UofM and Cleveland do not accept my insurance. I may have to appeal. Sigh.

    Rae

    Rae Rae - sorry to hear the
    Rae Rae - sorry to hear the news, but stay on top of it. May I ask what type of insurance you have - i.e. POS, PPO, HMO, etc. Do they allow to go what they call "out of network"? Also, has Cleveland Clinic actually told you they won't accept you?

    Let us understand a little bit about your insurance requirements. I have relatives in Detroit, and I can see what they might recommend.
  • newenglandguy
    newenglandguy Member Posts: 66
    rae_rae said:

    It's all a blur to me right
    It's all a blur to me right now. I walked out without a copy of the report but I can obtain it easily enough. It's basically in the space where my kidney used to be -that's all I can tell you right now. I just discovred my insurance isn't accepted at Cleveland Clinic. I am in Michigan. If anyone knows of a Dr. that specializes in kidney cancer in my area let me know. So far both UofM and Cleveland do not accept my insurance. I may have to appeal. Sigh.

    Rae

    Rae Rae - sorry to hear the
    Rae Rae - sorry to hear the news, but stay on top of it. May I ask what type of insurance you have - i.e. POS, PPO, HMO, etc. Do they allow to go what they call "out of network"? Also, has Cleveland Clinic actually told you they won't accept you?

    Let us understand a little bit about your insurance requirements. I have relatives in Detroit, and I can see what they might recommend.

    Check this doc out a little more, and he served his Redidency at Cleveland Clinic:

    http://www.shmg.org/body.cfm?id=100&action=detail&ref=4568&limit_specialty=Urology&limit_within=0
  • rae_rae
    rae_rae Member Posts: 300

    Rae Rae - sorry to hear the
    Rae Rae - sorry to hear the news, but stay on top of it. May I ask what type of insurance you have - i.e. POS, PPO, HMO, etc. Do they allow to go what they call "out of network"? Also, has Cleveland Clinic actually told you they won't accept you?

    Let us understand a little bit about your insurance requirements. I have relatives in Detroit, and I can see what they might recommend.

    Check this doc out a little more, and he served his Redidency at Cleveland Clinic:

    http://www.shmg.org/body.cfm?id=100&action=detail&ref=4568&limit_specialty=Urology&limit_within=0

    Thank you
    Thank you, I believe my insurance (Priority Health HMO) works with Spectrum but I will find out for sure. I do have to stay in the network unless I want to pay the entire cost. I can have a Dr appeal that under certain criteria.

    Thanks again,
    Rae
  • jane99
    jane99 Member Posts: 15
    I also had the same recurrence as you. Six months after my nephrectomy I had a retroperitoneal mass in the lymph node where my kidney used to be. It was abutting the vena cava. I had surgery and the mass was removed. A year has passed and I again have the same thing basically in the same place. I have been on sutent the past year but have been switched to torisel. I am trying to decide between a third surgery or cybernife radiation. I have no spread of the cancer to any other location. I had good recovery from my surgeries but the idea of another one (since 2009) is daunting. But I will probably go for it. Get as much information as you can on your options. As others have said, it's a good idea to have people who are very familiar with rcc evaluating you. Good luck to you.

    Jane
  • Jamie1.3cm
    Jamie1.3cm Member Posts: 188
    jane99 said:

    I also had the same recurrence as you. Six months after my nephrectomy I had a retroperitoneal mass in the lymph node where my kidney used to be. It was abutting the vena cava. I had surgery and the mass was removed. A year has passed and I again have the same thing basically in the same place. I have been on sutent the past year but have been switched to torisel. I am trying to decide between a third surgery or cybernife radiation. I have no spread of the cancer to any other location. I had good recovery from my surgeries but the idea of another one (since 2009) is daunting. But I will probably go for it. Get as much information as you can on your options. As others have said, it's a good idea to have people who are very familiar with rcc evaluating you. Good luck to you.

    Jane

    tumor still small
    And keep in mind that your tumor is still relatively small, though it did grow more in 1 year than I'd expect. (For example, mine grew 1 mm in 6 months.) I'm sorry U of M isn't on your insurance; they've done some good research with kidneys and ct scans lately. Have you checked out the Mayo in MN? I,too, would be interested in what the new tumor is attached to. I wondering if this is a case of metastasis? original tumor cells were left behind?

    Do you remember the size and location of your original tumor? -- the one for which you had the nephrectomy?

    Just so you're not going through the same thing in another 1 or 2 years from now, have you considered having a full body scan? I'd rather get things taken care of now and while they're small.
  • rae_rae
    rae_rae Member Posts: 300

    tumor still small
    And keep in mind that your tumor is still relatively small, though it did grow more in 1 year than I'd expect. (For example, mine grew 1 mm in 6 months.) I'm sorry U of M isn't on your insurance; they've done some good research with kidneys and ct scans lately. Have you checked out the Mayo in MN? I,too, would be interested in what the new tumor is attached to. I wondering if this is a case of metastasis? original tumor cells were left behind?

    Do you remember the size and location of your original tumor? -- the one for which you had the nephrectomy?

    Just so you're not going through the same thing in another 1 or 2 years from now, have you considered having a full body scan? I'd rather get things taken care of now and while they're small.

    Thank you
    Jane, thanks for the information - I can't imagine it coming back TWICE. Do they consider this as mets or just local recurrence, and what is the difference? Jamie, from what I have read (which has been very little on the subject) it's usually caused by negative margins or imcomplete resection. According to my path report, I had positive margins. The only thing on my path report that gave me caution was that a 1mm spot escaped the kidney capsule.

    The tumor is attached to the fascia or connective tissue that surrounds the now empty space where my kidney was. My orginal tumor was on the top pole of my left kidney butting against my spleen and pancreas but still contained within the kidney capsule. It was approximately 8 x 9cm. My path report came back as grade 3, stage 2a.

    My GP and I are both amazed at the rate of growth - my surgery was 9 months ago so 3 x4cm is rapid growth. My insurance case worker told me to contact a local onocologist asap and have them refer me. She said they could refer me to Cleveland clinic as long as they have good clinical reason why I should go. Actually I am happy to see a Dr. within my network as long as they have experience with RCC. It's just trying to find one that seems difficult. I have gone to the Kidney Cancer Association website twice and both emailed and called the nurse hotline as they can provide info on doctors in my area that specialize in RCC. The first time I contacted them was last fall before my nephrectomy and I never got a response. I tried again on Friday so we will see if anything comes of it.

    In the meantime, anyone that has information would be greatly appreciated. I live in a very small town in N. Michigan so my resources up here are limited.

    Thanks again,
    Rae
  • jane99
    jane99 Member Posts: 15
    rae_rae said:

    Thank you
    Jane, thanks for the information - I can't imagine it coming back TWICE. Do they consider this as mets or just local recurrence, and what is the difference? Jamie, from what I have read (which has been very little on the subject) it's usually caused by negative margins or imcomplete resection. According to my path report, I had positive margins. The only thing on my path report that gave me caution was that a 1mm spot escaped the kidney capsule.

    The tumor is attached to the fascia or connective tissue that surrounds the now empty space where my kidney was. My orginal tumor was on the top pole of my left kidney butting against my spleen and pancreas but still contained within the kidney capsule. It was approximately 8 x 9cm. My path report came back as grade 3, stage 2a.

    My GP and I are both amazed at the rate of growth - my surgery was 9 months ago so 3 x4cm is rapid growth. My insurance case worker told me to contact a local onocologist asap and have them refer me. She said they could refer me to Cleveland clinic as long as they have good clinical reason why I should go. Actually I am happy to see a Dr. within my network as long as they have experience with RCC. It's just trying to find one that seems difficult. I have gone to the Kidney Cancer Association website twice and both emailed and called the nurse hotline as they can provide info on doctors in my area that specialize in RCC. The first time I contacted them was last fall before my nephrectomy and I never got a response. I tried again on Friday so we will see if anything comes of it.

    In the meantime, anyone that has information would be greatly appreciated. I live in a very small town in N. Michigan so my resources up here are limited.

    Thanks again,
    Rae

    Hi Rae,

    This stuff does get confusing. My recurrence is considered both a local recurrence and mets, since it is in a different spot than where it originally was (in the kidney). When I was initially diagnosed the first time I had a 4 cm tumor and I had to wait about 6 weeks for my nephrectomy and it grew to 10 cm. The path report showed negative margins and I was told I had a 90% chance of never having a problem with rcc again. But my tumor was also as grade 4 (the most aggressive type) so they said I would need to be vigilant with scans.
    And then there is was showing up on my first scan. I also have an insurance issue somewhat similar to yours. I work for a hospital chain and we are self-insured so they want us to use doctors and facilities within our own chain. With both these recurrences I have been told that my tumor was (is) inoperable. But I live near a cancer center and I have gone there for second opinions and have been told it is operable. Last time I was diagnosed with the recurrence in Jan 2010 and after haggling with the insurance company I was finally able to get my surgery in April of 2010. It didn't seem to matter though as there was no spread to other organs, I don't know what will happen this time if I ask the insurance company to pay for another out of network surgery only 15 months later. I really think it would have benefited me if they have approved my going to an oncologist who specialized in rcc. There is no one in my network who has that specialization so I have been seeing someone who is a generalist. I like my oncologist but she does not have a lot of experience with rcc. But on the plus side she has been conferring with other physicians and is proactive and accessible when I have questions. It would be great if you could be seen at the Cleveland Clinic. I would keep pestering everyone you need to paster to get them to move quickly, which I am sure you are doing. If you have any other questions, please let me know.
    Jane
  • Jamie1.3cm
    Jamie1.3cm Member Posts: 188
    jane99 said:

    Hi Rae,

    This stuff does get confusing. My recurrence is considered both a local recurrence and mets, since it is in a different spot than where it originally was (in the kidney). When I was initially diagnosed the first time I had a 4 cm tumor and I had to wait about 6 weeks for my nephrectomy and it grew to 10 cm. The path report showed negative margins and I was told I had a 90% chance of never having a problem with rcc again. But my tumor was also as grade 4 (the most aggressive type) so they said I would need to be vigilant with scans.
    And then there is was showing up on my first scan. I also have an insurance issue somewhat similar to yours. I work for a hospital chain and we are self-insured so they want us to use doctors and facilities within our own chain. With both these recurrences I have been told that my tumor was (is) inoperable. But I live near a cancer center and I have gone there for second opinions and have been told it is operable. Last time I was diagnosed with the recurrence in Jan 2010 and after haggling with the insurance company I was finally able to get my surgery in April of 2010. It didn't seem to matter though as there was no spread to other organs, I don't know what will happen this time if I ask the insurance company to pay for another out of network surgery only 15 months later. I really think it would have benefited me if they have approved my going to an oncologist who specialized in rcc. There is no one in my network who has that specialization so I have been seeing someone who is a generalist. I like my oncologist but she does not have a lot of experience with rcc. But on the plus side she has been conferring with other physicians and is proactive and accessible when I have questions. It would be great if you could be seen at the Cleveland Clinic. I would keep pestering everyone you need to paster to get them to move quickly, which I am sure you are doing. If you have any other questions, please let me know.
    Jane

    CC
    I vote for the Cleveland Clinic as well, and speed does seem to be of the essence if you've got fasting growing tumors.
  • rae_rae
    rae_rae Member Posts: 300

    CC
    I vote for the Cleveland Clinic as well, and speed does seem to be of the essence if you've got fasting growing tumors.

    After many calls today, I
    After many calls today, I got in touch with the doctor in Grand Rapids that newenglandguy posted on his reply. The lady said she could get me in this Thursday afternoon as long as they faxed my records over TODAY. I drove over to my GP's office, signed the release and requested in desperation that they please fax the records today. The lady responded "we will see what we can do". I left and called and then left a message to have my GP call me. I know as soon as she can she will because she is awesome that way. I plan to have her push the office girls to get that faxed ASAP. Otherwise I am looking at a 16 day wait or more to get in elsewhere. I went down a list making appointments or asking how long the wait would be. Hoping and praying they fax the information over today.

    Rae
  • newenglandguy
    newenglandguy Member Posts: 66
    rae_rae said:

    After many calls today, I
    After many calls today, I got in touch with the doctor in Grand Rapids that newenglandguy posted on his reply. The lady said she could get me in this Thursday afternoon as long as they faxed my records over TODAY. I drove over to my GP's office, signed the release and requested in desperation that they please fax the records today. The lady responded "we will see what we can do". I left and called and then left a message to have my GP call me. I know as soon as she can she will because she is awesome that way. I plan to have her push the office girls to get that faxed ASAP. Otherwise I am looking at a 16 day wait or more to get in elsewhere. I went down a list making appointments or asking how long the wait would be. Hoping and praying they fax the information over today.

    Rae

    Rae Rae - if this lady was
    Rae Rae - if this lady was awesome she wouldn't say "we'll see what we can do". I'd call her mid-day tomorrow (Tuesday) and kindly ask if she's faxed the info. If not, I'd spend a few minutes explaining that you consider this appointment very critical and ask her if she could do you a huge favor and get your records faxed by COB Tuesday. Don't be afraid to be a little assertive, while still being diplomatic. Stress how important you feel this appointment is to you.

    Good luck and keep us all posted on your progress.
  • rae_rae
    rae_rae Member Posts: 300

    Rae Rae - if this lady was
    Rae Rae - if this lady was awesome she wouldn't say "we'll see what we can do". I'd call her mid-day tomorrow (Tuesday) and kindly ask if she's faxed the info. If not, I'd spend a few minutes explaining that you consider this appointment very critical and ask her if she could do you a huge favor and get your records faxed by COB Tuesday. Don't be afraid to be a little assertive, while still being diplomatic. Stress how important you feel this appointment is to you.

    Good luck and keep us all posted on your progress.

    My Gp put some pressure on
    My Gp put some pressure on the staff and got my records faxed yesterday. I will be going to that appointment on Thursday. Will update after. Thank you everyone.
    Rae
  • rae_rae
    rae_rae Member Posts: 300

    Rae Rae - if this lady was
    Rae Rae - if this lady was awesome she wouldn't say "we'll see what we can do". I'd call her mid-day tomorrow (Tuesday) and kindly ask if she's faxed the info. If not, I'd spend a few minutes explaining that you consider this appointment very critical and ask her if she could do you a huge favor and get your records faxed by COB Tuesday. Don't be afraid to be a little assertive, while still being diplomatic. Stress how important you feel this appointment is to you.

    Good luck and keep us all posted on your progress.

    My Gp put some pressure on
    My Gp put some pressure on the staff and got my records faxed yesterday. I will be going to that appointment on Thursday. Will update after. Thank you everyone.
    Rae
  • rae_rae
    rae_rae Member Posts: 300

    Rae Rae - if this lady was
    Rae Rae - if this lady was awesome she wouldn't say "we'll see what we can do". I'd call her mid-day tomorrow (Tuesday) and kindly ask if she's faxed the info. If not, I'd spend a few minutes explaining that you consider this appointment very critical and ask her if she could do you a huge favor and get your records faxed by COB Tuesday. Don't be afraid to be a little assertive, while still being diplomatic. Stress how important you feel this appointment is to you.

    Good luck and keep us all posted on your progress.

    duplicate post sorry
    Oops
  • Jamie1.3cm
    Jamie1.3cm Member Posts: 188
    rae_rae said:

    duplicate post sorry
    Oops

    No problem
    Sounds like this guy may be your most convenient option. And since his training was at the Cleveland Clinic, you may be getting the best of both worlds.

    Good luck!
  • aedney
    aedney Member Posts: 6
    rae_rae said:

    It's all a blur to me right
    It's all a blur to me right now. I walked out without a copy of the report but I can obtain it easily enough. It's basically in the space where my kidney used to be -that's all I can tell you right now. I just discovred my insurance isn't accepted at Cleveland Clinic. I am in Michigan. If anyone knows of a Dr. that specializes in kidney cancer in my area let me know. So far both UofM and Cleveland do not accept my insurance. I may have to appeal. Sigh.

    Rae

    I'm in Michigan too.
    I have been seeing Dr. Bruce Redman (oncologist) at U of M for my metastatic kidney cancer. I had my left kidney removed, but it had spread to my chest wall. My insurance was out of network with U of M so I had to pay much more out of pocket than I would have at a different hospital. They have been really great about payment, letting us pay small monthly payments toward our out of pocket costs. In the beginning, before we decided to go to U of M, I saw Dr. Harold Margolis (oncologist) at Beaumont Hospital (do you have a Beaumont doctor?), he was also really great, but UofM just seemed like a better choice. I just underwent HDIL2 treatment, I go back this week to get the results of my CT scan, if this treament didn't work, we are considering other treatment facilities as well (Cleveland or Mayo Clinics possibly). Let me know if I can help you, I am located in a suburb of Detroit.

    Amy
  • aedney
    aedney Member Posts: 6

    No problem
    Sounds like this guy may be your most convenient option. And since his training was at the Cleveland Clinic, you may be getting the best of both worlds.

    Good luck!

    Please read my earlier post
    Hi Rae, I posted another time about my experiences at UofM, but I just read your post more closely and we have the same type of insurance (Priority Health). UofM will accept it, you will just be out of network. I urge you to talk to Dr. Bruce Redman (oncologist) as this type of cancer is his speciality.

    Amy