New card-carrying member

STurner68
STurner68 Member Posts: 12
edited April 2012 in Kidney Cancer #1
I just wanted to introduce myself. I'm a 43-year-old postop day four now out from a 15% partial nephrectomy for a 12-mm, T1a, Fuhrman grade 2 clear cell renal cell carcinoma. Like many of you, I ended up here completely by blind luck. Less than a month ago, I had some weird abdominal pain going on, classic for gallbladder pathology. I almost didn't even get the ultrasound done because the pain disappeared as quickly as it had come on, but something spurred me to keep the appointment, and after a lovely three-week rollercoaster ride of tests and consults and education, I chose the robotic partial nephrectomy. My urologist had given me the choice of watchful waiting with surveillance, and even said we could hold off on the surgery until the fall, but I have twin four-year-olds who have already lost a mother to malaria (they're adopted). I knew I had to get in there to figure out what we were looking at and so that we could obtain maximal results. It sounds like, at least for now, this is it. In less than a month, I've become a cancer survivor. I almost feel like it's cheating to claim that title for myself when I've watched friends and family really wrestle with theae demons.

I was just discharged yesterday and my husband and daughters are making sure I'm getting in my daily walks and taking care of myself. While I can't say it was enjoyable, as the mother to two small children, this seems like one of the better ones to get, assuming it's caught early. I sure have some wonky DNA, it seems, as I have absolutely none of the risk factors for this cancer, and I'm still a bit wary of another shoe dropping, but, for now, I need to get my girls raised and I'll take every minute that I can get toward that goal!

Are there any studies out there for the lower-staged folks? I am a huge believer in research and medical education and if I can help further that body of knowledge, I'll do so.

Best,
Sheila

Comments

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #2
    Welcome to the club of Kidney Cancer Survivors
    Shiela,

    It is nice to welcome a new member who joins us with a minimum of baggage (size of tumor). Wishing you well for an unevenful discovery. Your prognosis for a full recovery is as close to 100% as can be expected. Last year one new mother felt so good she went on a roller coaster 3 months after surgery. Don't do that. Wait 6 months instead.

    Best wishes,


    Icemantoo
  • STurner68
    STurner68 Member Posts: 12
    #3
    icemantoo said:

    Welcome to the club of Kidney Cancer Survivors
    Shiela,

    It is nice to welcome a new member who joins us with a minimum of baggage (size of tumor). Wishing you well for an unevenful discovery. Your prognosis for a full recovery is as close to 100% as can be expected. Last year one new mother felt so good she went on a roller coaster 3 months after surgery. Don't do that. Wait 6 months instead.

    Best wishes,


    Icemantoo

    No rollercoasters for me, ever!
    At least, not real ones. I get sick on playground swings. Made for a horrible anesthesia recovery...ugh. If I need it again, I'm outfitting myself with a scopolamine patch. I hadn't had surgery in 40 years prior to this. No idea what all I was in for.

    Glad to be here, sorry any of us are here. I look forward to hanging around a while as I learn to wrap my head around this stuff. Thanks for the warm welcome!
  • STurner68
    STurner68 Member Posts: 12
    #4
    icemantoo said:

    Welcome to the club of Kidney Cancer Survivors
    Shiela,

    It is nice to welcome a new member who joins us with a minimum of baggage (size of tumor). Wishing you well for an unevenful discovery. Your prognosis for a full recovery is as close to 100% as can be expected. Last year one new mother felt so good she went on a roller coaster 3 months after surgery. Don't do that. Wait 6 months instead.

    Best wishes,


    Icemantoo

    No rollercoasters for me, ever!
    At least, not real ones. I get sick on playground swings. Made for a horrible anesthesia recovery...ugh. If I need it again, I'm outfitting myself with a scopolamine patch. I hadn't had surgery in 40 years prior to this. No idea what all I was in for.

    Glad to be here, sorry any of us are here. I look forward to hanging around a while as I learn to wrap my head around this stuff. Thanks for the warm welcome!
  • DarrylPe
    DarrylPe Member Posts: 75
    #5
    STurner68 said:

    No rollercoasters for me, ever!
    At least, not real ones. I get sick on playground swings. Made for a horrible anesthesia recovery...ugh. If I need it again, I'm outfitting myself with a scopolamine patch. I hadn't had surgery in 40 years prior to this. No idea what all I was in for.

    Glad to be here, sorry any of us are here. I look forward to hanging around a while as I learn to wrap my head around this stuff. Thanks for the warm welcome!

    Welcome
    Hi STurner and welcome to the club. Surviving Kidney cancer is not a small thing and, I'm sure you have the scar to prove it. So relax heal up and enjoy your survivorship.
    Darryl
  • STurner68
    STurner68 Member Posts: 12
    #6
    DarrylPe said:

    Welcome
    Hi STurner and welcome to the club. Surviving Kidney cancer is not a small thing and, I'm sure you have the scar to prove it. So relax heal up and enjoy your survivorship.
    Darryl

    Thank you, Darryl.
    And sorry to hear about the new hurdles croppping up for yourself. This journey seems an awful lot like a bit of Whack-a-Mole to me. I hope you find the answers and treatment you need. Best to you.
  • foxhd
    foxhd Member Posts: 3,181 Member
    #7
    STurner68 said:

    Thank you, Darryl.
    And sorry to hear about the new hurdles croppping up for yourself. This journey seems an awful lot like a bit of Whack-a-Mole to me. I hope you find the answers and treatment you need. Best to you.

    Welcome Sheila
    Welcome Sheila, I think. sounds like you got nabbed at first base. Good news. Now stay well.
  • nyc_girl
    nyc_girl Member Posts: 27
    #8
    Me too!
    Hello Sheila, I am new to this site. I am also a 43 y/o F. I am 3 months post-op, open partial nephrectomy, stage 1, grade 3, clear cell. My small tumor was also discovered by luck - during a CT scan for an unrelated symptom (shortness of breath). Recovery was not easy, but I had a lot of support from family and friends and now I am looking forward to a full "normal" life. My doctor said the most important thing after recovery is to get regular follow-up imaging studies - forever.

    I would suggest taking a look at the nomograms for kidney cancer on the MSKCC website if you are interested in research.

    Best wishes for your recovery. If you have any questions or just want to talk, please feel free to contact me.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #9
    nyc_girl said:

    Me too!
    Hello Sheila, I am new to this site. I am also a 43 y/o F. I am 3 months post-op, open partial nephrectomy, stage 1, grade 3, clear cell. My small tumor was also discovered by luck - during a CT scan for an unrelated symptom (shortness of breath). Recovery was not easy, but I had a lot of support from family and friends and now I am looking forward to a full "normal" life. My doctor said the most important thing after recovery is to get regular follow-up imaging studies - forever.

    I would suggest taking a look at the nomograms for kidney cancer on the MSKCC website if you are interested in research.

    Best wishes for your recovery. If you have any questions or just want to talk, please feel free to contact me.

    Nomograms
    I would suggest that if you're seriously interested in research you don't go near the MSKCC nomogram site or anything similar.

    nyc_girl, sorry you have had occasion to join us but welcome, nonetheless, and I hope all future scans turn out clear. What was the histology and location of your small tumour to make it grade 3 at only stage 1?

    What is the rationale for the suggested follow-up imaging being continued indefinitely and what scanning modality is envisaged? At your age, after open NSS your prognosis has to be very good. When are you due for your first follow-up scan?
  • nyc_girl
    nyc_girl Member Posts: 27
    #10
    Texas_wedge said:

    Nomograms
    I would suggest that if you're seriously interested in research you don't go near the MSKCC nomogram site or anything similar.

    nyc_girl, sorry you have had occasion to join us but welcome, nonetheless, and I hope all future scans turn out clear. What was the histology and location of your small tumour to make it grade 3 at only stage 1?

    What is the rationale for the suggested follow-up imaging being continued indefinitely and what scanning modality is envisaged? At your age, after open NSS your prognosis has to be very good. When are you due for your first follow-up scan?

    Cautiously optimistic
    According to my doctor, my prognosis is good but there remains about a 5% risk of recurrence. Although the tumor was small, it exhibited more aggressive cell characteristics, hence the Fuhrman nuclear grade 3. He is recommending ultrasound imaging, starting 6 months post-op.

    Wishing you well.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #11
    nyc_girl said:

    Cautiously optimistic
    According to my doctor, my prognosis is good but there remains about a 5% risk of recurrence. Although the tumor was small, it exhibited more aggressive cell characteristics, hence the Fuhrman nuclear grade 3. He is recommending ultrasound imaging, starting 6 months post-op.

    Wishing you well.

    optimistic
    5% recurrence risk is a pretty good prospect.

    What were the "more aggressive cell characteristics" - sarcomatoid? Were you given an explanation of why US imaging is suggested rather than CT or MRI? Whatever the reason, I hope you have clear scans from now on.
  • nyc_girl
    nyc_girl Member Posts: 27
    #12
    Texas_wedge said:

    optimistic
    5% recurrence risk is a pretty good prospect.

    What were the "more aggressive cell characteristics" - sarcomatoid? Were you given an explanation of why US imaging is suggested rather than CT or MRI? Whatever the reason, I hope you have clear scans from now on.

    Hmmmm
    Thanks! Doc said pathology showed tumor cells were aggressive type, but he never used the term "sarcomatoid" and it does not appear in my pathology report.
    First post-op imaging will be US, not sure if MRI/CT will be ordered for future scans. Will find out at my next visit.

    Wishing you well.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #13
    nyc_girl said:

    Hmmmm
    Thanks! Doc said pathology showed tumor cells were aggressive type, but he never used the term "sarcomatoid" and it does not appear in my pathology report.
    First post-op imaging will be US, not sure if MRI/CT will be ordered for future scans. Will find out at my next visit.

    Wishing you well.

    Hmmm
    Thanks for good wishes and I'll keep my fingers crossed for you that it's not sarcomatoid. It probably isn't since, if it were, they'd almost certainly have said so in your path report. Maybe your prognosis is so good that other scans won't be required and as for indefinitely -?! - maybe what was meant was 'for the immediately foreseeable future'?

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