New to the Site - what next?

aboelter99
aboelter99 Member Posts: 2
in Kidney Cancer #1

Hi

little about me, 36 when we found my cancer in 2013 quite by accident during some medical testing.  i had a stage 1 grade 3, completelty encapsualed tumor that was removed with a partial nephrectomy with good margins.  foe the next three years we never missed a scheduled scan and up until september of 16 all indications were that i was in the clear.  my CT scan in sept showed a number of small (7 mm or less) spots in both lungs.  was referred to an oncologist at rocky mountain cancer center in denver where i was told without a biopsy that i had 2 years max and i should start on an oral chemo straight away.  we went to CTCA in AZ and eventually had a lung resection that confirmed that particular spot was RCC clear cell type and that after healing i was a good candidate of IL-2.  i was scheduled to return and begin treatment when the friday before i was called by CTCA saying the Doc who perforoms IL-2 had left CTCA and i would need to find a another place for treatment.  thankfully Anchutez Cancer center in Denver took over and within a week or two i was ready for IL-2.  today 3 months later and 32 infusions the tumors have not grown but also have not reduced in size so i have been taken off it.  the cutaneous oncologist who was treating me with IL-2 (administered by cutaneous onocologist referred by my urological oncologist) recommneded we go into an observational mode and do nothing to see if it grows.  i certainly feel like that is time wasted and am pushing for other alternatives.  looking for feedback from others?  what should i be asking?

Comments

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    edited April 2017 #2
    No yes or no answer.

    ab,

     

    Get a doctor you are comfotable with and or a second opinion. Many of us are uncomfortable pointing you in one direction or another as we are not health care professionals.

     

     

    Icemantoo

  • donna_lee
    donna_lee Member Posts: 1,045 Member
    edited April 2017 #3
    Just some input...

    A local friend and I were both Dx'd at the same time in 2006.  She had kidney removed then; wait a year or so and it had gone into lungs.  She had one lobe removed, but they couldn't resection the nodes.  In 2008 she had IL-2 at Providence Medical Center in Portland.  She has returned at least yearly for CT's and/or labs.  The nodules in her lungs shrunk some, and have remained stable without growth since 2008.  And she lets no grass grow under her feet!!!!

    Definitely plan on 6 mo or yearly follow-up.  Either a chest x-ray and abdominal/pelvic US; or a CT, which I was on for several years.  Before discovery, mine had mets to liver and nodes next to kidney, and recurred in single nodes in 2007 and 2008.

    After investigating CTSA in 2006, I bypassed them completely after I found that all they could offer was palliative care for Kidney cancer-or surgery.  And it was an all day trip to drive to Portland and fly to Phoenix, plus spend time there during and following surgery.

    Iceman is right on; find out what you have to deal with and get the best Dr. available in your region.

    Good luck.

    donna_lee

  • ambava33
    ambava33 Member Posts: 74 Member
    #4
    aboelter99

    So sorry to read this. Just curious what type of cancer did you have when they first diagnosed you, also how often were you getting scanned? I really hate when they give you a time line on your life. Did they elaborate on why you only have 2 years. I have read lots of stories with people who have mets all over and no one said they only had 2 years left. 

     

     

  • Hd67xlch
    Hd67xlch Member Posts: 151 Member
    edited April 2017 #5
    Just curious how many is...........

    a number of small spots in each lung? I had 4 and some smaller than 7 mm and had them all surgically removed. Good luck

  • sucotai
    sucotai Member Posts: 19
    #6
    If you don't mind me asking,

    If you don't mind me asking, how big was the original tumor? As for the IL-2, it's not necessarily time wasted - tumors did not grow in size while being on IL-2 may suggest IL-2 did have some effect. Sometimes immune system takes a bit of time to kick in as it is a learned response. You won't know which way it's going to go until the next scan. But in the same time definitely get a second opinion to see if any target therapy is worth pursueing at this point.

  • Acelang
    Acelang Member Posts: 19
    edited April 2017 #7
    Cannabis oil treatment

    Cannabis oil treatment

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    edited April 2017 #8
    Just wanted to offer you some

    Just wanted to offer you some heartfelt support hon, while you figure all this out. Keep going to anyone for their opinions on treatment and prognosis. Don't forge to try Smartpatients.com too. You'll get a lot of responses there as well.

    But know that we're here for you.. all the way on this challenging journey.

    Hugs to you and yours~

    Jan

  • aboelter99
    aboelter99 Member Posts: 2
    #9
    Thanks for the feedback!

    Thanks for the feedback!  CTCA did the second opinion and confirmed from a resection biopsy renal cell carcinoma.  The tumor that was removed from the kidney was Golf ball size And consideried stage one.  The mets found three years later were three 6-7 mm sized in rt lung and two smaller ones in the left.   After one cycle of HDL-2 the two small left lung mets were gone and the remaining two mets in the right side decreased by 1 mm.  After the second there was no change.   

    Im nit looking for medical direction just to hear similar stories and what is out there and what to expect.  

  • lobbyist0724
    lobbyist0724 Member Posts: 515 Member
    #10
    I am sorry to here about the

    I am sorry to here about the recurrent and I am very surprised with the doctor's comment regarding prognosis. I have been reading on research reports and I don't recalled reading such a prognosis for a recurr Clear Cell RCC (baseball size, I assumed it is 3 cm). From your pathology report, did it mention any other prognotic factors such  as sacromatoid features or others. Anyways, getting a second opinion and find someone who believe he/she can treat you is very important!

    Good luck,

    Carmen

  • Hd67xlch
    Hd67xlch Member Posts: 151 Member
    #11
    aboelter99 said:

    Thanks for the feedback!

    Thanks for the feedback!  CTCA did the second opinion and confirmed from a resection biopsy renal cell carcinoma.  The tumor that was removed from the kidney was Golf ball size And consideried stage one.  The mets found three years later were three 6-7 mm sized in rt lung and two smaller ones in the left.   After one cycle of HDL-2 the two small left lung mets were gone and the remaining two mets in the right side decreased by 1 mm.  After the second there was no change.   

    Im nit looking for medical direction just to hear similar stories and what is out there and what to expect.  

    My story is similar except for the IL-2 treatment part.......

    I was stage 1, grade 2, clear margins, then I went 5 years with no recurrance then 2 spots in each lung,  had them cut out, no big deal, for me personally it was better to know they are gone then wonder if they are growing, JMO.

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