Translocation Renal Cell Carcinoma XP11.2

ambava33
ambava33 Member Posts: 74

Happy Easter everyone! I hope you all enjoyed your day with family. I had a wonderful day with my family. My 3 1/2 year old twins were so much fun to watch on their egg hunt and opening their baskets. So I posted about a week and a half ago that my doctor called and said the pathologist was going to send my tumor off to another lab because they thought it was a rare cancer called Translocation Renal Cell Carcinoma. Well I got a phone call a few days ago that I did indeed have this rare type of cancer. There is not a lot of info about it, but my doctor said my prognosis still looked good because the fact of the matter is we got it in stage 1 with all my margins clear. I still can't wrap my head around the rareness of this type of tumor though and it does scare me very much that they don't know a lot about it. It's usually pretty agressive in adults and it's most commonly found in children, but for now I am just going to try and move on and keep my faith that I will stay cancer free. I know a lot of people on this forum cannot relate to me with this type of cancer, but if anyone knows anything about it I would love to hear more. I find stuff online, but it's pretty limited. 

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Comments

  • Steve.Adam
    Steve.Adam Member Posts: 463
    Happy Easter

    Does 'aggressive' mean that it grows quickly?  It was still quite small when they found it and I think that is the important thing.

    Steve.

  • DAC677
    DAC677 Member Posts: 59
    edited April 2017 #3

    Happy Easter

    Does 'aggressive' mean that it grows quickly?  It was still quite small when they found it and I think that is the important thing.

    Steve.

    agressive

    When my urolgist cut my tumor and kidney out he called it a very agressive type of cancer. I asked how long it had been growing and he said maybe a year to 18 months to get to 11CM. 

    Later when i saw the experts he said it could have been growing for many years. He said he thinks 80% of the people are walking around with cancer cells in their body but those cells have not got the signal to replicate on hyperdrive yet and the bodys own imune system is staying on top of it. He said the newest breakthrough they are having lately is in 1) blocking the bodies signal to grow cancer cells in hyperdrive or 2) stimulating the bodies immune system to fight it

    I say all that for this reason, at 1CM you can beat this. i know it. the trick is to stay calm and get in front of the right specialists and professionals and be very involved in your plan of treatement. dont be afraid to ask why on things and it will all turn out well 

  • ambava33
    ambava33 Member Posts: 74
    DAC

    It's usually agressive once it has started to spread to other area's. My tumor was actually 2.2cm and it was confined to the right kidney. They told me I probably had the tumor for 3-5 years and when they were still in the stages of trying to figure out if it was a cancer or not, I had three months in betwen some testing they had done and it had not grown at all. I did read that they are pretty indolent(lazy) until they reach stage 3 or 4. My doctor seemed very confident that my prognosis was still the same as if it was still the clear cell that they orginally thought I had, so I will lean on that comfort for now and no that it's out of me now. I honestly just feel kind of lonely because it is so rare it's hard to find anyone else out there that has this same cancer. 

  • ambava33
    ambava33 Member Posts: 74
    edited April 2017 #5

    Happy Easter

    Does 'aggressive' mean that it grows quickly?  It was still quite small when they found it and I think that is the important thing.

    Steve.

    Steve

    Just from what I have read it actually seems to grow slowly at first, but once it gets to a certain stage it metastisizes very quickly. My doctor said the same thing, important facts of my situation are that we got it so small and early and he thinks my prognosis is good. 

  • Hd67xlch
    Hd67xlch Member Posts: 151 Member
    Go to smart patients........

    There are people there with the type of cancer you have, its not as much a positive/feel good type place, the atmosphere there is alot more serious, but there is alot to be learned there. Good luck

  • ambava33
    ambava33 Member Posts: 74
    edited April 2017 #7
    Hd67xlch

    Thank you. I did go check it out. I just feel bad even commenting because almost all of those people found their cancers in very late stages, and with this type of cancer it's usually never a good prognosis. I have no idea how in the hell I got so damn lucky but I will take it. It will be a good resource though if things change with my prognosis, but right now I think I will stay with you guys. I will be the outcast of the group. (LOL)

     

  • sandy23
    sandy23 Member Posts: 143
    ambava33 said:

    Hd67xlch

    Thank you. I did go check it out. I just feel bad even commenting because almost all of those people found their cancers in very late stages, and with this type of cancer it's usually never a good prognosis. I have no idea how in the hell I got so damn lucky but I will take it. It will be a good resource though if things change with my prognosis, but right now I think I will stay with you guys. I will be the outcast of the group. (LOL)

     

    You Have to Wonder

    if there aren't folks whose original pathology report showed clear cell but it was really your type.  I was curious, or maybe nosy, about translocation renal cell carcinoma and what it meant so I looked it up.  In one place, I read that up until recently, most patients would have been classified as clear cell.  Now, I did learn that from Dr. Google so take it with a grain of salt!!

  • ambava33
    ambava33 Member Posts: 74
    Sandy23

    That's true. That is exactly what they thought I had at first was clear cell. It mimics it pretty well, but I think now that it is on the rise, pathologists are more educated on it and can see some of it's unique characteristics and know that it may not be clear cell. I feel like an alien because there are not a lot of people with this kind of cancer and it seems also very rare that I found it when I did. Seems most people find it when it's so advanced and not a good prognosis. I did read it is on the rise and they are finding it more in younger woman my age (30's).

     

  • Essie
    Essie Member Posts: 2
    ambava33

    I have also been recently diagnosed with this, I'm a 54 year old woman from Canada. My tumour was over 4 cm. and I've been told there is a very high probably of recurrence. They did remove it all and as far as I know I'm cancer free today but my doctor wants to stay on top of it if possible by sending me for a CT or MRI every 3 months for the first year. I had my first post-op CT yesterday, follow up appointment is next week where I'm hoping to be told that there's nothing new. There's very little information out there about this, it's very frustrating. My tumour was found by accident while I was being screened to donate a kidney to a very good friend in need of a transplant. It was devastating to learn that I couldn't be a living donor and shocking to receive this diagnosis. Not sure what my prognosis is, I hope to find out more at my next appointment. I have a long list of questions prepared! I've been hoping to find someone somewhere with the same diagnosis to connect with :)

  • sandy23
    sandy23 Member Posts: 143
    Essie said:

    ambava33

    I have also been recently diagnosed with this, I'm a 54 year old woman from Canada. My tumour was over 4 cm. and I've been told there is a very high probably of recurrence. They did remove it all and as far as I know I'm cancer free today but my doctor wants to stay on top of it if possible by sending me for a CT or MRI every 3 months for the first year. I had my first post-op CT yesterday, follow up appointment is next week where I'm hoping to be told that there's nothing new. There's very little information out there about this, it's very frustrating. My tumour was found by accident while I was being screened to donate a kidney to a very good friend in need of a transplant. It was devastating to learn that I couldn't be a living donor and shocking to receive this diagnosis. Not sure what my prognosis is, I hope to find out more at my next appointment. I have a long list of questions prepared! I've been hoping to find someone somewhere with the same diagnosis to connect with :)

    Essie

    I just had to tell you how kind of a person I think you are for being willing to donate a kidney to a friend.  I know you had to be beyond shocked to find out about the kidney cancer though.  Please let us know how things turn out next week.  Ambava will feel like less of an "outcast" now as well.

  • ambava33
    ambava33 Member Posts: 74
    So sorry Essie

    Essie,

    I am sorry you were diagnosed with this and a huge thank you for being willing to donate! I think this type of cancer if it is found in stage one, no mets, etc. There is actually a very good chance it won't come back, but unfortunately most people find it in later stages and once it has metasized to other places. I am not sure exactly the size of yours or the stage, but I hope they give you a good prognosis. My doctor is actually not concerned about it coming back, he said he thinks I have a great prognosis, but for me it was the rareness of this cancer that bothered me so much. I mean it's bad enough to get cancer, but then it has to be a rare one on top of it?! Anywho, sorry you are dealing with this but know you are not alone! I am here anytime you want to chat! Keep us posted!

     

  • Essie
    Essie Member Posts: 2
    ambava33 said:

    So sorry Essie

    Essie,

    I am sorry you were diagnosed with this and a huge thank you for being willing to donate! I think this type of cancer if it is found in stage one, no mets, etc. There is actually a very good chance it won't come back, but unfortunately most people find it in later stages and once it has metasized to other places. I am not sure exactly the size of yours or the stage, but I hope they give you a good prognosis. My doctor is actually not concerned about it coming back, he said he thinks I have a great prognosis, but for me it was the rareness of this cancer that bothered me so much. I mean it's bad enough to get cancer, but then it has to be a rare one on top of it?! Anywho, sorry you are dealing with this but know you are not alone! I am here anytime you want to chat! Keep us posted!

     

    ambava33

    Thanks for the encouragement. My tumour was 4.4 cm and graded stage 3. I haven't had the chance to discuss prognosis with my oncologist yet but I have a long list of questions prepared for my appointment on Wednesday. I was just stunned when he gave me the results. Thankfully my husband was listening and we're both hopeful for the future but I need more information! I've also connected with someone in the Facebook group so I feel much better knowing I'm not alone in this. I'll keep you posted :)

  • Peggyz
    Peggyz Member Posts: 10
    edited August 2017 #14
    ambava33 said:

    So sorry Essie

    Essie,

    I am sorry you were diagnosed with this and a huge thank you for being willing to donate! I think this type of cancer if it is found in stage one, no mets, etc. There is actually a very good chance it won't come back, but unfortunately most people find it in later stages and once it has metasized to other places. I am not sure exactly the size of yours or the stage, but I hope they give you a good prognosis. My doctor is actually not concerned about it coming back, he said he thinks I have a great prognosis, but for me it was the rareness of this cancer that bothered me so much. I mean it's bad enough to get cancer, but then it has to be a rare one on top of it?! Anywho, sorry you are dealing with this but know you are not alone! I am here anytime you want to chat! Keep us posted!

     

    Pathology re translocation

    I am trying to find a pathologist who can review an initial pathology report for a patient in the UK.  Can you share the name of the pathologist or the oncologist who made that recommendation?  As you have certainly learned, not every pathologist has experience with the rarer kidney cancers, and for this young girl, she seems caught between the pediatric world and the rare kidney cancer world.  Hope to hear from you and any others who might have some recommendations.

    PeggyRCC

  • XavierS1984
    XavierS1984 Member Posts: 4
    edited January 2018 #15
    I too have Translocation Renal Cell Carcinoma

    Hello, my name is Xavier and I live in Phoenix, Arizona.  I am a 33 year old male and I was diagnosed 2 years ago with Stage IV Translocation Renal Cell Carcinoma.  My oncologist has told me that only 50 people in the United States have this disease, so I know exactly how you feel winning this stupid lottery.  I have and continue to google the disease every month or so and more often as my scans come up every 3 months.  I know how it is to find limited information and the scholarly articles are Greek to me.  They initially couldn't figure out what this was, and I was ultimately referrred to the Mayo Clinic out here in Phoenix (the only good luck I have had since finding this.  They are Great there.).  I had a 2cm tumor on my kidney and an 8cm tumor extending from there that completely encased my aorta.  After the tumor resection and partial nephrectomy it was determined through pathology that is was Translocation.  A year later I had recurrence with another 2 cm tumor on the spot of my previous surgery.  I elected to have my left kidney completely removed this time.  This was three months ago as I write this and I have my first scans since then coming up this week.  I was told that if they continue to find more disease that they can continue to cut stuff out.  If it turns out to be inoperable they are going to enroll me in a PINCR trial of the drug Pazopanib.  They said they have had good results with this drug, however, just like everything else with this disease, there is just not a lot of data yet.

    Please know, that it does feel lonely, but there are others out there living with this, even though they are extremely tough to find given the rarity.  You are the second I have come across in my internet searches.  There is another man I recently found that is a Fire Fighter in Asheville, NC and I requested to follow his group on facebook, but I have not received a response, I will include the link below.  I wish you nothing but the best, and I think we are both ahead of this disease.  If I find any new developments I will post to this thread.  Thank you for being brave and reaching out to the community.

     

    http://www.foxcarolina.com/story/37053992/fundraiser-held-for-asheville-firefighter-fighting-uphill-cancer-battle

     

  • kidneystoneblessing
    kidneystoneblessing Member Posts: 26 Member
    Me too

    i have translocation as well.  I live in the Bay Area and go to ucsf for scans.  I am 35.   Had surgery in july 2017.  4.0 cm stage t3a focal fat invasion only.   

    Last two scans were good.   Have another scan in march.  glad to know there is another one and ten million person here!   We will keep on fighting!! There are 4 of us now!!

     

  • khdez
    khdez Member Posts: 2
    edited January 2018 #17
    Same

    I was recently informed about my stage III RCC due to xp11 translocation as well. Doctors found my kidney tumor in October and had my right kidney removed (along with 9 infected lymph nodes in the area) a few weeks later. I was about to partake in a clinical trial for immunotherapy for post-removal cancer patients at Stanford when a CT scan revealed that the cancer has already returned in the area where my kidney was, as well as a new tumor in my neck. I'm about to start a different clinical trial at my local Kaiser (in the Bay area as well), for two types of immunotherapy used simultaneously.

    I really can't express how much of a surprise and a relief it is to find other people living with this diagnosis. I'm 28 years old and this came as a huge, terrifying shock, but reading through this thread has really put my mind at ease. Now we have 5!

  • kidneystoneblessing
    kidneystoneblessing Member Posts: 26 Member
    khdez said:

    Same

    I was recently informed about my stage III RCC due to xp11 translocation as well. Doctors found my kidney tumor in October and had my right kidney removed (along with 9 infected lymph nodes in the area) a few weeks later. I was about to partake in a clinical trial for immunotherapy for post-removal cancer patients at Stanford when a CT scan revealed that the cancer has already returned in the area where my kidney was, as well as a new tumor in my neck. I'm about to start a different clinical trial at my local Kaiser (in the Bay area as well), for two types of immunotherapy used simultaneously.

    I really can't express how much of a surprise and a relief it is to find other people living with this diagnosis. I'm 28 years old and this came as a huge, terrifying shock, but reading through this thread has really put my mind at ease. Now we have 5!

    Also in the Bay Area!

    I am being treated at ucsf.  What are the odds we are both in the same area?

  • khdez
    khdez Member Posts: 2

    Also in the Bay Area!

    I am being treated at ucsf.  What are the odds we are both in the same area?

    Since Xavier (and my doctor

    Since Xavier (and my doctor as well!) mentioned there are only about 50 people in the US with this disease, the odds are pretty dang small! It feels good to know there's someone else close by, though :)

  • Morgan_ab
    Morgan_ab Member Posts: 2
    Being tested for this right now

    I am 30 years old. Got diagnosed with kidney cancer during my pregnancy. I am two weeks post op. We were thinking clear cell the whole time. Pathology sent The tumor to MD Anderson because the pathologist locally couldn’t determine between papillary cell or translocation. Based off what I’ve seen here and other places, i am thinking translocation because of my age. I am very very worried. I have three young kids. My tumor was 1.4 cm with clear margins. 

  • XavierS1984
    XavierS1984 Member Posts: 4
    Update

    Hi all, according to my last scans in late January I have had recurrence of the disease around the area where they removed my left kidney.  Several on the lymph nodes and some suspect spots now in my lungs.  I have started the trial drug Pazopanib and so far the side effects are very managable.  I will keep you all posted if this drug works out well for me.  I have read a lot of reviews about this drug and most seem to be good.  I hope I have the same outcome.  I wish you all the best during your journeys and I hope we can all kick this things butt.