17 year old girl with unclassified renal cancer stage II need help!

momneedsinfo
momneedsinfo Member Posts: 7 Member
edited March 2014 in Kidney Cancer #1
Hi, my 17 year old daughter just had open radical surgery to remove a 13 cm tumor & right kidney, well what was left of the kidney last thursday. She came home this past monday. We were told yesterday by the pathologist at Ceder Sanai in Los Angeles that she has an unclassified renal cell carcinoma that is very rare, they have only seen it 5 times, all in women and she is by far the youngest to have it. He will be writing it up. Our surgeon was very highly recommended and believes the cancer was contained and entirely removed. Especially because she is so young, I am worried about reoccurence. Most of the info I am seeing is about older men. (Sorry guys). We are set to see an oncologist soon. Are there any statistics out there, or sites for teenagers or women? I would appreciate any recommendations on where to go from here. Thank you all so much. I am feeling overwhelmed and somewhat in a state of disbelief. Why couldn't it be me???
momneedsinfo

Comments

  • howell58
    howell58 Member Posts: 13 Member
    #2
    so sorry
    I am so sorry to hear about your daughter.
    PLEASE get a second opinion on the cancer! My husband had his kidney removed 2 yrs ago, due to a tumor which had attached itself to it. Initially, we were told it was renal cell cancer, but after the surgery, pathology was baffled and sent it out to Brigams Womens Hospital in Boston. Pathology there deteremined it to be a liposarcoma. Very rare, and surgery is only treatment option.
    My husband is still battling today, getting ready for surgery #3 on the 16th. Has high recurrence rate, can damage vital organs in the abdominal cavity and they never got clear margins the first time, which has made it worse.
    He has been treated at Sloan Kettering in NY by a sarcoma specialist.
    I do a lot of research on the internet, much of which is disheartening for this type of cancer.
    My friends tell me not to, but I have learned so much more, regardless.
    Please let me know how she is doing and if you find out more information.
    God Bless.
    Sue
  • momneedsinfo
    momneedsinfo Member Posts: 7 Member
    #3
    howell58 said:

    so sorry
    I am so sorry to hear about your daughter.
    PLEASE get a second opinion on the cancer! My husband had his kidney removed 2 yrs ago, due to a tumor which had attached itself to it. Initially, we were told it was renal cell cancer, but after the surgery, pathology was baffled and sent it out to Brigams Womens Hospital in Boston. Pathology there deteremined it to be a liposarcoma. Very rare, and surgery is only treatment option.
    My husband is still battling today, getting ready for surgery #3 on the 16th. Has high recurrence rate, can damage vital organs in the abdominal cavity and they never got clear margins the first time, which has made it worse.
    He has been treated at Sloan Kettering in NY by a sarcoma specialist.
    I do a lot of research on the internet, much of which is disheartening for this type of cancer.
    My friends tell me not to, but I have learned so much more, regardless.
    Please let me know how she is doing and if you find out more information.
    God Bless.
    Sue

    17 yr old daughter
    Thank you Sue for your support. We did find out finally that she has Renal Cell Carcinoma with xp11.2/TFE3 Gene Fusion. Apparently it is a translocation type which I think deals with the chromosomes/genes. We are in Southern California and are looking at UCLA, Ceder Sinai or the City of Hope Medical Center to find an oncologist. I am going to post here and see if we can get any help or info in that direction. You are right, the internet is disheartening all the way around! Blessings to you and your husband as well and keep me posted.
    Kristi
  • Christine1
    Christine1 Member Posts: 1
    #4
    momneedsinfo said:

    17 yr old daughter
    Thank you Sue for your support. We did find out finally that she has Renal Cell Carcinoma with xp11.2/TFE3 Gene Fusion. Apparently it is a translocation type which I think deals with the chromosomes/genes. We are in Southern California and are looking at UCLA, Ceder Sinai or the City of Hope Medical Center to find an oncologist. I am going to post here and see if we can get any help or info in that direction. You are right, the internet is disheartening all the way around! Blessings to you and your husband as well and keep me posted.
    Kristi

    Unclassified RCC in young Female
    Hi,
    My husband came across your post the other day and told me about it. I am a 28 yr. old female who was diagnosed with RCC (unclassified) in 2005...when I was 23. I had a large mass on my left kidney and a very small mass on the right side which both turned out to be cancer. I hope your daughter is doing well now. I required bilateral partial nephrectomies. The original plan was to do a complete nephrectomy on the left but due to complications they had to leave part of the kidney. I am currently having CT's every year along with bloodwork and chest xrays. I originally went to the Dr. for an evaluation for high blood pressure which was very strange for me since I was a thin, young female. I am an RN and was checking my blood pressure frequently and found it to be elevated. The Dr. ordered scan to eval. for Renal artery stenosis and found the tumors. I hope this gives you some info. and I hope your daughter is healthy and doing great now. I know this is very uncommon and was surprised to see another young female with a very similar situation.
  • lucas_mom
    lucas_mom Member Posts: 2
    #5
    Hello,
    I am sorry to hear
    Hello,

    I am sorry to hear that your daughters' and your families lives have been touched my this monster, cancer. Have you thought about getting a second oponion? My husband had surgery to remove his kidney at one hospital that said he had some very rare subtype of kidney cancer they just recently discovered. So we went to Memorial Sloan Kettering and thats where they found out that he actually had a genetic form of kidney cancer. HLRCC. It was very strange because he didnt have ANY classic signs or symptoms of this disease that are associated with it and no one in his family had it. Now our 2 year old son will have to be tested when he turns 10 to see if he carries the same gene. If it had not been for us getting that second opinion, we would never have known that my son could possibly get the same cancer. We always have to check the checkers. Its never a bad idea to get a second opinion. Please keep us posted.

    Jen
  • Ojosarco
    Ojosarco Member Posts: 9
    #6
    lucas_mom said:

    Hello,
    I am sorry to hear
    Hello,

    I am sorry to hear that your daughters' and your families lives have been touched my this monster, cancer. Have you thought about getting a second oponion? My husband had surgery to remove his kidney at one hospital that said he had some very rare subtype of kidney cancer they just recently discovered. So we went to Memorial Sloan Kettering and thats where they found out that he actually had a genetic form of kidney cancer. HLRCC. It was very strange because he didnt have ANY classic signs or symptoms of this disease that are associated with it and no one in his family had it. Now our 2 year old son will have to be tested when he turns 10 to see if he carries the same gene. If it had not been for us getting that second opinion, we would never have known that my son could possibly get the same cancer. We always have to check the checkers. Its never a bad idea to get a second opinion. Please keep us posted.

    Jen

    hlrcc
    Hi Everyone
    I'm being treated for HLRCC. The mutated gene was discovered 4 years ago and this summer I was diagnosed with kidney cancer. I just had a partial nephectomy. There is a study being done at NIH/NCI and I think it is open to anyone with the mutated gene. It's at least an excellent source of information for such a rare disease. Let me know if you need more information or contact Lindsay Middleton at NIH.

    Kathy
  • Vagusto
    Vagusto Member Posts: 86
    #7
    Sad to hear
    Hi momneedsinfo

    As a Mom, my heart goes out to you. I think us Moms always want to take the pain away from
    our kids. Life isn't fair. :( I was 46 when I had an open radical, tumor the size of my fist (I really should find out the measurement). The recovery was pretty hard.
    Take Care
    Valerie
  • Anna Bery
    Anna Bery Member Posts: 18
    #8
    Hey, I am very sorry to hear
    Hey, I am very sorry to hear about your daughter and I hope that everything is well.
    My mom had a 13cm tumor on her right kidney invading her stomach. I am with my mom 24/7 since she was diagnosed in April of 2010 with RCC. My advise to you is to always search for a second opinion, always know in details your treatment options, find an oncologist who specializes in kidney cancer, treat immediately any pain and find out the source as soon as possible via CT scans or MRI's, and CT scan once in 3 months.
    Good luck...it's terrible that this stupid disease can occur in somebody as young as your daughter.
    I with that everything is well
  • Mookies Mom
    Mookies Mom Member Posts: 13 Member
    #9
    Ojosarco said:

    hlrcc
    Hi Everyone
    I'm being treated for HLRCC. The mutated gene was discovered 4 years ago and this summer I was diagnosed with kidney cancer. I just had a partial nephectomy. There is a study being done at NIH/NCI and I think it is open to anyone with the mutated gene. It's at least an excellent source of information for such a rare disease. Let me know if you need more information or contact Lindsay Middleton at NIH.

    Kathy

    Mutated Gene
    My husband passed away 2 months ago with Undefined RCC with translocation Xp11.2. How did you discover the gene mutation? We have two small children and I have thought about trying to find out if there is any sort of genetic testing to see if my children have the possibility of developing this mutation. Any information you could provide would be greatly appreciated.
  • CarrieR
    CarrieR Member Posts: 6
    #10
    My Oncologist's Two Cents
    First I'm very sorry to hear about your daughter. I'm not sure if anyone has made this suggestion to you, but children from ages 0-20 have higher success rates being treated by pediatric oncologists. My daughter is being treated for Clear Cell Sarcoma of the Kidney at Seattle Children's which has some of the top oncologists in the country. I would talk to a pediatric oncologist in your area to hear what they have to say.

    Good luck.

    Carrie
  • teastman
    teastman Member Posts: 5
    #11

    I recently had a partial nephrectomy 8/30/17 and found just found out 6 weeks later the final on the biopsy report that my tumor was unclassified renal cell carcinoma. I see that there has not been a post on this discussion for about 5 years. Does anyone have any updates to share on what may have been learned about this aggressive type of cancer? My margins were clear and my doctor told me that I am cancer free but I worry about recurrence and cannot seem to find much information on that or what to look for. I was stage 1 and my tumor was 2.6 cm so very small. I am very lucky to have caught this early but do wish I had more information on how to move forward from here other than coming in every 6 months to get a chest xray and MRI to see if it comes back. I would like to find an oncologist and take a more proactive approach as I have a lot of years left to live and want to live them healthy. I also doing genetic testing right now to see if I can get a better picture of where it came from as I have never been a smoker, love to exercise and am very active and also eat healthy. i also want to share information from my situation so that we can learn more about this cancer and hopefully help others that "join the club" in the future. I live in Austin Texas and am willing to travel to the best doctors if need be.

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    #12
    teastman said:

    I recently had a partial nephrectomy 8/30/17 and found just found out 6 weeks later the final on the biopsy report that my tumor was unclassified renal cell carcinoma. I see that there has not been a post on this discussion for about 5 years. Does anyone have any updates to share on what may have been learned about this aggressive type of cancer? My margins were clear and my doctor told me that I am cancer free but I worry about recurrence and cannot seem to find much information on that or what to look for. I was stage 1 and my tumor was 2.6 cm so very small. I am very lucky to have caught this early but do wish I had more information on how to move forward from here other than coming in every 6 months to get a chest xray and MRI to see if it comes back. I would like to find an oncologist and take a more proactive approach as I have a lot of years left to live and want to live them healthy. I also doing genetic testing right now to see if I can get a better picture of where it came from as I have never been a smoker, love to exercise and am very active and also eat healthy. i also want to share information from my situation so that we can learn more about this cancer and hopefully help others that "join the club" in the future. I live in Austin Texas and am willing to travel to the best doctors if need be.

    I saw an oncologist last week

    I saw an oncologist last week and he told me that if I have a genetic type of rcc then it CAN come back in the same kidney after partial nephrectomy. If it is not genetic then 80% chance of it never coming back. We won't know what sub-type it is until the tumor is removed and tested. I too do not smoke or drink and have always exercised and played sports!! The urologist I first saw said kidney cancer is rare and there really is no reason as to why I got it (nothing I did or did not do). That bothers me bc in my mind there MUST be a reason lol. I asked both the urologist and oncologist about life after surgery. The one said "live your life" and the other said "a heart-healthy diet is a kidney-healthy diet. Just do not start smoking."

  • foxhd
    foxhd Member Posts: 3,181 Member
    edited October 2017 #13
    AnnissaP

    Kidney cancer is NOT your fault. I'ts not because of your diet, or exercise, or religion. Nothing like a 2 pack/day person wondering why they have lung cancer. With that being said, just live your life and never miss follow ups. We'll discuss this again in 20 years.

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    #14
    foxhd said:

    AnnissaP

    Kidney cancer is NOT your fault. I'ts not because of your diet, or exercise, or religion. Nothing like a 2 pack/day person wondering why they have lung cancer. With that being said, just live your life and never miss follow ups. We'll discuss this again in 20 years.

    I understand, but it is hard

    I understand, but it is hard to accept!! 

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