Recurrence

2

Comments

  • rae_rae
    rae_rae Member Posts: 300 Member
    #22
    aedney said:

    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

    Thanks for the information,
    Thanks for the information, Amy. I met with Dr. Brian Lane today and he does specialize in RCC. He worked at Cleveland Clinic prior to moving to the Grand Rapids area where his wife is from. I am having a biopsy next week to confirm it is cancer. Since the mass is right near my spleen and pancreas, where the urologist that did my nephrectomy ran into trouble, he said there was a "slight" chance it was a blot clot or damage from that, but he seemed more confident that it was cancer.

    Surgery would be very involved right now due to the location. I would lose my spleen, probably part of my pancreas and it might possibly involve muscle around the chest wall and diaphram. I am going to start on sutent most likely next week and the other good news is there is a research program going on with a doctor he works closely with that my insurance company has allowed four "slots" to participate. He is going to get me on that program. The plan is to hopefully shrink the tumor and in three months do a less invasive surgery. I will know more next week after my biopsy.

    Thank you everyone for your support.

    Rae
  • BG
    BG Member Posts: 85 Member
    #23
    rae_rae said:

    Thanks for the information,
    Thanks for the information, Amy. I met with Dr. Brian Lane today and he does specialize in RCC. He worked at Cleveland Clinic prior to moving to the Grand Rapids area where his wife is from. I am having a biopsy next week to confirm it is cancer. Since the mass is right near my spleen and pancreas, where the urologist that did my nephrectomy ran into trouble, he said there was a "slight" chance it was a blot clot or damage from that, but he seemed more confident that it was cancer.

    Surgery would be very involved right now due to the location. I would lose my spleen, probably part of my pancreas and it might possibly involve muscle around the chest wall and diaphram. I am going to start on sutent most likely next week and the other good news is there is a research program going on with a doctor he works closely with that my insurance company has allowed four "slots" to participate. He is going to get me on that program. The plan is to hopefully shrink the tumor and in three months do a less invasive surgery. I will know more next week after my biopsy.

    Thank you everyone for your support.

    Rae

    Rae Rae my thoughts and
    Rae Rae my thoughts and prayers are with you. I'm sending you a gentle hug via this email as my surgery site is still sore.

    BG
  • newenglandguy
    newenglandguy Member Posts: 66
    #24
    rae_rae said:

    Thanks for the information,
    Thanks for the information, Amy. I met with Dr. Brian Lane today and he does specialize in RCC. He worked at Cleveland Clinic prior to moving to the Grand Rapids area where his wife is from. I am having a biopsy next week to confirm it is cancer. Since the mass is right near my spleen and pancreas, where the urologist that did my nephrectomy ran into trouble, he said there was a "slight" chance it was a blot clot or damage from that, but he seemed more confident that it was cancer.

    Surgery would be very involved right now due to the location. I would lose my spleen, probably part of my pancreas and it might possibly involve muscle around the chest wall and diaphram. I am going to start on sutent most likely next week and the other good news is there is a research program going on with a doctor he works closely with that my insurance company has allowed four "slots" to participate. He is going to get me on that program. The plan is to hopefully shrink the tumor and in three months do a less invasive surgery. I will know more next week after my biopsy.

    Thank you everyone for your support.

    Rae

    Rae Rae - the only way to
    Rae Rae - the only way to confirm cancer is to biopsy it. Please let us know when you get the pathology report. I'll be praying for you. I'm glad you got the appointment with Dr Lane as you need to be speedy in getting results and moving to the next step. I'm wishing and hoping for some good news on your pathology report

    Please let us know when you get the results.
  • rae_rae
    rae_rae Member Posts: 300 Member
    #25
    newenglandguy said:

    Rae Rae - the only way to
    Rae Rae - the only way to confirm cancer is to biopsy it. Please let us know when you get the pathology report. I'll be praying for you. I'm glad you got the appointment with Dr Lane as you need to be speedy in getting results and moving to the next step. I'm wishing and hoping for some good news on your pathology report

    Please let us know when you get the results.

    Thank you BG and
    Thank you BG and newenglandguy. My biopsy is Friday at noon so it will probably be the following week at the earliest before I get the results back. I will keep everyone updated. Thanks again everyone,

    Rae
  • Jamie1.3cm
    Jamie1.3cm Member Posts: 188
    #26
    rae_rae said:

    Thank you BG and
    Thank you BG and newenglandguy. My biopsy is Friday at noon so it will probably be the following week at the earliest before I get the results back. I will keep everyone updated. Thanks again everyone,

    Rae

    biopsy
    Hey, Rae Rae. I'm still thinking about you and sending good vibes your way.

    I've heard that kidney cancer does not biopsy very well, outside of surgery. So I'll be curious to see if they get a good reading on your tumor before actually going in to fetch it.
  • Rayman NY
    Rayman NY Member Posts: 12
    #27
    I am currently working with
    I am currently working with Cleveland Clinic with my Rcc of the left Kidney. It is a amazing place. The Doc I am working with Steven Campbell MD. He is the best and has written the book on Kidney cancer.

    Good luck
  • rae_rae
    rae_rae Member Posts: 300 Member
    #28
    Rayman NY said:

    I am currently working with
    I am currently working with Cleveland Clinic with my Rcc of the left Kidney. It is a amazing place. The Doc I am working with Steven Campbell MD. He is the best and has written the book on Kidney cancer.

    Good luck

    The biopsy went well though
    The biopsy went well though I have to admit it was slightly painful. I felt great when I left, probably due to the drugs. When I got home (2 hour drive, friend drove me), I was extremely sore and tired. It feels like someone took a baseball bat to my back. Other than that, it was a piece of cake. Will update once I get results.

    Rae
  • Cafewoman53
    Cafewoman53 Member Posts: 735 Member
    #29
    rae_rae said:

    The biopsy went well though
    The biopsy went well though I have to admit it was slightly painful. I felt great when I left, probably due to the drugs. When I got home (2 hour drive, friend drove me), I was extremely sore and tired. It feels like someone took a baseball bat to my back. Other than that, it was a piece of cake. Will update once I get results.

    Rae

    Good Luck !
    I am thinking of you and sending ggod thoughts your way ! May you get some good news soon.
    Colleen
  • Jamie1.3cm
    Jamie1.3cm Member Posts: 188
    #30
    rae_rae said:

    The biopsy went well though
    The biopsy went well though I have to admit it was slightly painful. I felt great when I left, probably due to the drugs. When I got home (2 hour drive, friend drove me), I was extremely sore and tired. It feels like someone took a baseball bat to my back. Other than that, it was a piece of cake. Will update once I get results.

    Rae

    biopsy results
    Results should be coming in now. At least, when they biopsy during surgery it can take about 4 days to get the specific results. As you know, I've never heard of anyone getting a biopsy before surgery for KC, so I'm anxious to hear what they say. I'm keeping my fingers crossed for you!
  • rae_rae
    rae_rae Member Posts: 300 Member
    #31
    Jamie1.3cm said:

    biopsy results
    Results should be coming in now. At least, when they biopsy during surgery it can take about 4 days to get the specific results. As you know, I've never heard of anyone getting a biopsy before surgery for KC, so I'm anxious to hear what they say. I'm keeping my fingers crossed for you!

    Since they called and set up
    Since they called and set up an appt. next Monday with the chemo dr. I am guessing it wasn't benign lol. They were pretty confident it was cancer anyhow. I also had to have the biopsy for the research protocol. It's a study on the moleculear level. When I have my wits about me I will write more about it. It's been a crazy busy couple of weeks for me with work so my brain needs to unwind. I will update as I learn more and know better what I am talking about.

    Rae
  • Jamie1.3cm
    Jamie1.3cm Member Posts: 188
    #32
    rae_rae said:

    Since they called and set up
    Since they called and set up an appt. next Monday with the chemo dr. I am guessing it wasn't benign lol. They were pretty confident it was cancer anyhow. I also had to have the biopsy for the research protocol. It's a study on the moleculear level. When I have my wits about me I will write more about it. It's been a crazy busy couple of weeks for me with work so my brain needs to unwind. I will update as I learn more and know better what I am talking about.

    Rae

    best wishes
    No problem, Rae-Rae. Take your time. Don't forget to breathe. : )

    They are probably going to start you on sutent or another med they use for recurrence and metastasis. I'm on another support site (in the UK) where recurrence and the use of meds like sutent are very common. Let me know if you want me to pass on their URL.

    I'm surprised they haven't just schedule you for another surgery though. This tumor is still small enough to deal with easily via surgery! Maybe they're just trying to prevent another recurrence after surgery. Keep us posted, and we'll all learn from this together.

    sending healing vibes your way ~~~~~
  • rae_rae
    rae_rae Member Posts: 300 Member
    #33
    Jamie1.3cm said:

    best wishes
    No problem, Rae-Rae. Take your time. Don't forget to breathe. : )

    They are probably going to start you on sutent or another med they use for recurrence and metastasis. I'm on another support site (in the UK) where recurrence and the use of meds like sutent are very common. Let me know if you want me to pass on their URL.

    I'm surprised they haven't just schedule you for another surgery though. This tumor is still small enough to deal with easily via surgery! Maybe they're just trying to prevent another recurrence after surgery. Keep us posted, and we'll all learn from this together.

    sending healing vibes your way ~~~~~

    Good News
    I went to see the medical oncologist today. We went over my history from the first symptoms up to the biopsy. After this five or so minute long discussion, he asked "what do you know about your biopsy?" I said "nothing except it hurt".

    Well much to EVERYONE's surprise, the mass was benign!!! They all thought it was cancer, turns out it is damage from the surgery including dead tissue and blood. I don't have a recurrence! I am having another CT scan in five weeks and will follow up with him in six weeks. He said I was still high risk and wants to keep a close eye on things but as of right now, no Sutent, no cancer, nothing.

    I can't tell you how relieved and yet slightly taken off guard I am. Everyone was confident it was cancer.

    Thank you all for your support.

    Rae
  • BG
    BG Member Posts: 85 Member
    #34
    rae_rae said:

    Good News
    I went to see the medical oncologist today. We went over my history from the first symptoms up to the biopsy. After this five or so minute long discussion, he asked "what do you know about your biopsy?" I said "nothing except it hurt".

    Well much to EVERYONE's surprise, the mass was benign!!! They all thought it was cancer, turns out it is damage from the surgery including dead tissue and blood. I don't have a recurrence! I am having another CT scan in five weeks and will follow up with him in six weeks. He said I was still high risk and wants to keep a close eye on things but as of right now, no Sutent, no cancer, nothing.

    I can't tell you how relieved and yet slightly taken off guard I am. Everyone was confident it was cancer.

    Thank you all for your support.

    Rae

    Rae Rae,
    This news brightens
    Rae Rae,

    This news brightens my day!! I have been thinking of you!

    God bless you,

    Brent
  • donna_lee
    donna_lee Member Posts: 1,045 Member
    #35
    BG said:

    Rae Rae,
    This news brightens
    Rae Rae,

    This news brightens my day!! I have been thinking of you!

    God bless you,

    Brent

    Cel-a-bration Time...
    It's great to hear the good news. As someone who's had 2 recurrences, both positive for the RCC, I'm soooo glad to hear your's was benign. My next CT is not for another month and I always start to get a little edgy about this time.
    Keep on hanging in.
    Donna
  • newenglandguy
    newenglandguy Member Posts: 66
    #36
    donna_lee said:

    Cel-a-bration Time...
    It's great to hear the good news. As someone who's had 2 recurrences, both positive for the RCC, I'm soooo glad to hear your's was benign. My next CT is not for another month and I always start to get a little edgy about this time.
    Keep on hanging in.
    Donna

    Rae Rae - that's awesome
    Rae Rae - that's awesome news! You've got to be so relieved. Even though it turned out benign, you did the right thing by moving quickly and getting things followed up.
  • newenglandguy
    newenglandguy Member Posts: 66
    #37
    donna_lee said:

    Cel-a-bration Time...
    It's great to hear the good news. As someone who's had 2 recurrences, both positive for the RCC, I'm soooo glad to hear your's was benign. My next CT is not for another month and I always start to get a little edgy about this time.
    Keep on hanging in.
    Donna

    Rae Rae - that's awesome
    Rae Rae - that's awesome news! You've got to be so relieved. Even though it turned out benign, you did the right thing by moving quickly and getting things followed up.
  • newenglandguy
    newenglandguy Member Posts: 66
    #38
    donna_lee said:

    Cel-a-bration Time...
    It's great to hear the good news. As someone who's had 2 recurrences, both positive for the RCC, I'm soooo glad to hear your's was benign. My next CT is not for another month and I always start to get a little edgy about this time.
    Keep on hanging in.
    Donna

    Rae Rae - that's awesome
    Rae Rae - that's awesome news! You've got to be so relieved. Even though it turned out benign, you did the right thing by moving quickly and getting things followed up.
  • niprut
    niprut Member Posts: 23
    #39
    newenglandguy said:

    Rae Rae - that's awesome
    Rae Rae - that's awesome news! You've got to be so relieved. Even though it turned out benign, you did the right thing by moving quickly and getting things followed up.

    Fantastic news
    Hi Rae-Rae,

    I have been following your plight and want you to know that I have just let out a big sigh of relief for you. I am so pleased, we go through so much and then more. Take a moment and breathe again.

    Take care,

    Jo
  • Minnesota Girl
    Minnesota Girl Member Posts: 119
    #40
    rae_rae said:

    Good News
    I went to see the medical oncologist today. We went over my history from the first symptoms up to the biopsy. After this five or so minute long discussion, he asked "what do you know about your biopsy?" I said "nothing except it hurt".

    Well much to EVERYONE's surprise, the mass was benign!!! They all thought it was cancer, turns out it is damage from the surgery including dead tissue and blood. I don't have a recurrence! I am having another CT scan in five weeks and will follow up with him in six weeks. He said I was still high risk and wants to keep a close eye on things but as of right now, no Sutent, no cancer, nothing.

    I can't tell you how relieved and yet slightly taken off guard I am. Everyone was confident it was cancer.

    Thank you all for your support.

    Rae

    Hooray
    So happy to hear the good news!
  • rae_rae
    rae_rae Member Posts: 300 Member
    #41
    Minnesota Girl said:

    Hooray
    So happy to hear the good news!

    Many thanks! Dr. Lane called
    Many thanks! Dr. Lane called today to also give me the report and wants another test (mri, pet, ct or ultrasound, not sure yet)in a week or two. As he is not entirely confident. I suggested the 2 docs get together and come up with one plan. I don't think it has all sunk in yet.

    Thank you for your thoughts, prayers and well wishes and may God bless you all.
    Rae

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