Recurrence

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Comments

  • Jamie1.3cm
    Jamie1.3cm Member Posts: 188
    rae_rae said:

    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

    yay!
    Doing the happy dance for you, rae rae!

    Sounds like a fur ball. I told you not to give your cat that bath!

    : )
  • KatfromFlorida
    KatfromFlorida Member Posts: 66
    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
    Congrats on the wonderful crazy news!!!..... I am so happy for you :) I have read many of your posts as I am pretty new here and have been sending hopeful prayers your way...
    My surgery is next month for a partial kidney removal on my right side and right now I am trying to just continue with life as usual, not always easy but I cannot imagine what you have been going through.... Much continued good news and happiness

    My very best to you

    Many many hugs
    KatfromFlorida
  • newenglandguy
    newenglandguy Member Posts: 66

    Rae_rae
    Congrats on the wonderful crazy news!!!..... I am so happy for you :) I have read many of your posts as I am pretty new here and have been sending hopeful prayers your way...
    My surgery is next month for a partial kidney removal on my right side and right now I am trying to just continue with life as usual, not always easy but I cannot imagine what you have been going through.... Much continued good news and happiness

    My very best to you

    Many many hugs
    KatfromFlorida

    Rae Rae - can you give us an update?
    Hi Rae Rae - what is the latest news? On your last post you mentioned getting lined up for more tests. Hope all is well.
  • lkhof9
    lkhof9 Member Posts: 3
    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

    It's all a blur to me right now
    Hi Rae,
    I joined the forum last year. I just was reading the blogs and noticed
    your story. I was diagnosed with RCC in my right kidney in about February, 2009.
    Mine was found incidentally. I understand what you're going through and I
    know there are many people in this forum that care and will help you get through
    it all with correspondence. My tumor was 2cm. Had all the appropriate tests
    and body scans and other organs checked. All no "METS". My tumor was ablated by a
    procedure called "Radiofrequency Ablation". They burned my tumor out. I still
    have my kidney. I've had 7 CTs since then with "no recurrence"...was 2 years
    ago in June. I've been asked by a couple of doctors why I didn't have a partial
    nephrectomy, and I wonder myself now. If it was to return, I would definitely
    make sure of a nephrectomy. The one thing I know for sure, and truly believe
    in is to stay "Proactive" with your care and treatment. Ask alot of questions..
    write them down for the doctor and make sure they are answered. We depend on
    their evaluations, advice and answers to assure we receive the best care.
    Also, I believe in second opinions or even third opinions. It's important. I
    wish you didn't have the problems with insurance. Never,never give up. Appeal
    and challenge if needed. Above all, try and keep a positive attitude. It's
    hard, I know. I still have bad days, but be thankful there's always 'HOPE'!!

    You might go on line and research for doctors that specialize in kidney cancer
    of your type, that accept your insurance and in Michigan. There has to be
    someone. Don't give up.

    I also live in Michigan and went to the U of M at one time. Keep the faith and
    know all of us care.

    Sincerely,
    lkhof9
  • lkhof9
    lkhof9 Member Posts: 3
    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

    Thank you
    I just responded to your previous blog and found your response regarding your
    pathology. I just discovered it. I absolutely understand about limited
    resources in Michigan. I also live in a small town in N.Michigan. We've
    had to travel many, many miles to doctors and for my surgery down state.
    It's brutal. I will keep you in my prayers. We are only less than 90
    miles from T.C. You might check on specialists in T.C. (Munson Hospital).
    It's a great hospital with wonderful doctors. I don't know how far you
    are at this point with your care since your last post in July, but wanted
    to respond again.

    Good luck, and remember to stay "Proactive". Will follow your responses.

    lkhof9
  • rae_rae
    rae_rae Member Posts: 300 Member

    Rae Rae - can you give us an update?
    Hi Rae Rae - what is the latest news? On your last post you mentioned getting lined up for more tests. Hope all is well.

    Hello
    I see I've been neglecting this a little bit - my mom, who has late stage dementia and lives with me, has had some bad days the past week and I have had a bad case of vertigo that seems to get worse by evening the past week as well so my posting is going to be limited until I stop feeling like everything is spinning :-)

    The doctors decided to go ahead with the original plan and I will have my next CT scan on Sept 14, with follow up and labs on Sept. 21 with Dr. Brinker in Grand Rapids. He is the medical oncologist. On a happy note, I saw my GP this week and she hugged me three times when she found out I didn't have cancer - she was surprised and said it was the best news she had all day.

    I am going to start some motion sickness pills tonight to see if I can stop the vertigo. To all newcomers and well wishers - thank you - and to the person that posted from N. Michigan (sorry I forgot your ID)- I am also not far from T.C. but G.R. seemed to have a bit more to offer than T.C. - keep us posted on what's happening and feel free to send me a message here.

    Rae
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    rae_rae said:

    Hello
    I see I've been neglecting this a little bit - my mom, who has late stage dementia and lives with me, has had some bad days the past week and I have had a bad case of vertigo that seems to get worse by evening the past week as well so my posting is going to be limited until I stop feeling like everything is spinning :-)

    The doctors decided to go ahead with the original plan and I will have my next CT scan on Sept 14, with follow up and labs on Sept. 21 with Dr. Brinker in Grand Rapids. He is the medical oncologist. On a happy note, I saw my GP this week and she hugged me three times when she found out I didn't have cancer - she was surprised and said it was the best news she had all day.

    I am going to start some motion sickness pills tonight to see if I can stop the vertigo. To all newcomers and well wishers - thank you - and to the person that posted from N. Michigan (sorry I forgot your ID)- I am also not far from T.C. but G.R. seemed to have a bit more to offer than T.C. - keep us posted on what's happening and feel free to send me a message here.

    Rae

    This is a topic we all think about. A couple of days ago I had a debate about it with my Wife, who knows more than I do about most things (but not golf). This was because her much loved cousin is in a bad way in London with liver melanoma. He's just survived a massive heart attack - he's a great fighter - so this was a terrible blow, given that he survived malignant melanoma (on his skin) about ten years ago.

    I asked: how can you know whether you're dealing with recurrence, as opposed to a new cancer? I speculated that this could be crucial since the treatment might be different. My Wife was disposed to doubt this but neither of us knew. So, I did a spot of investigation and turned up a paper that happened to address precisely that question. I Googled "de novo v recurrence" and instantly hit on a paper entitled: "Definitive discrimination of cancer recurrence/metastasis versus de novo cancer formation" by Finkelstein et al. in the Journal of Clinical Oncology in 2005. I was delighted. It answers many of my questions. A few sentences in the Abstract give the gist:

    "Distinguishing recurrent cancer from independent formation of a new cancer can be problematic."

    "Major treatment decisions may depend upon the certainty of this differentiation."

    The investigation the authors carried out vindicated the new approach they adopted and confirmed a new way of distinguishing new cancers from metastasised (i.e. recurrent) ones.

    "Conclusions: Discrimination between cancer recurrence/metastasis versus new primary cancer formation can be objectively and definitively accomplished by comparative mutational profiling if microscopic analysis and special stains cannot provide adequate certainty."

    As they recognised, "Major treatment decisions" may flow from the nature of the cancer - whether it's new or metastatic.

    T.

    PS I hope this may be a helpful distinction in the case of my Wife's Cousin and I know all here would wish him well as he enters a life/death course of chemo.
  • barbjc
    barbjc Member Posts: 2

    This is a topic we all think about. A couple of days ago I had a debate about it with my Wife, who knows more than I do about most things (but not golf). This was because her much loved cousin is in a bad way in London with liver melanoma. He's just survived a massive heart attack - he's a great fighter - so this was a terrible blow, given that he survived malignant melanoma (on his skin) about ten years ago.

    I asked: how can you know whether you're dealing with recurrence, as opposed to a new cancer? I speculated that this could be crucial since the treatment might be different. My Wife was disposed to doubt this but neither of us knew. So, I did a spot of investigation and turned up a paper that happened to address precisely that question. I Googled "de novo v recurrence" and instantly hit on a paper entitled: "Definitive discrimination of cancer recurrence/metastasis versus de novo cancer formation" by Finkelstein et al. in the Journal of Clinical Oncology in 2005. I was delighted. It answers many of my questions. A few sentences in the Abstract give the gist:

    "Distinguishing recurrent cancer from independent formation of a new cancer can be problematic."

    "Major treatment decisions may depend upon the certainty of this differentiation."

    The investigation the authors carried out vindicated the new approach they adopted and confirmed a new way of distinguishing new cancers from metastasised (i.e. recurrent) ones.

    "Conclusions: Discrimination between cancer recurrence/metastasis versus new primary cancer formation can be objectively and definitively accomplished by comparative mutational profiling if microscopic analysis and special stains cannot provide adequate certainty."

    As they recognised, "Major treatment decisions" may flow from the nature of the cancer - whether it's new or metastatic.

    T.

    PS I hope this may be a helpful distinction in the case of my Wife's Cousin and I know all here would wish him well as he enters a life/death course of chemo.

    HI Rae, my husband had his left kdney taken out due to RCC and then a few months later found it spead, to liver,lung and spleen, had a treatment called interleukin-2(IL-2). It was a hard road during treatment, but all of that cancer had gone, it is risky and a roll of dice. however the cancer did come back on his 3 motyh ct scan in the lyph node on lung. his dr ios having get a pet scan.