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Translocation Renal Cell Carcinoma XP11.2

ambava33's picture
ambava33
Posts: 71
Joined: Feb 2017

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. 

Steve.Adam's picture
Steve.Adam
Posts: 457
Joined: Oct 2016

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's picture
DAC677
Posts: 60
Joined: Feb 2017

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's picture
ambava33
Posts: 71
Joined: Feb 2017

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. 

ambava33's picture
ambava33
Posts: 71
Joined: Feb 2017

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. 

Hd67xlch's picture
Hd67xlch
Posts: 143
Joined: Apr 2016

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's picture
ambava33
Posts: 71
Joined: Feb 2017

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
Posts: 137
Joined: Jan 2017

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's picture
ambava33
Posts: 71
Joined: Feb 2017

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
Posts: 2
Joined: Apr 2017

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
Posts: 137
Joined: Jan 2017

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's picture
ambava33
Posts: 71
Joined: Feb 2017

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
Posts: 2
Joined: Apr 2017

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's picture
Peggyz
Posts: 10
Joined: Jun 2011

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's picture
XavierS1984
Posts: 4
Joined: Jan 2018

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

 

kacw
Posts: 1
Joined: Feb 2018

I‘m new to this, so bare with me. My 30 y/o loved one was just diagnosed with this type of cancer (stage 4 if they staged it)  January 25th. I don’t thing they stage tRCC with metastasis and She has mets in both lungs. The tumor in her kidney is 11cm, so they have to do an open radical nephrectomy. She has surgery in 2 days at MD Anderson. I have no idea how it feels to be in your shoes, or hers. All I know is that I am terrified, and, like you said, you’re not alone. I actually live in Tucson, so I’m not far from you. I have experience in the medical field, but nothing in nephrology or oncology. I have reached out to some of my friends who are doctors, including the doctor who discovered Xp 11.2 tRCC. 

So, while I am certainly not a patient, I wanted to be a part of this forum. I hope it is ok to be here, and I would be happy to visit with you to review what I’ve learned if you’d like. That goes for anyone here with advanced tRC. I cant do anything to change her diagnosis so I’ve poured myself into research... guess it’s my way of coping?

how do I give my email or phone number on a one on one basis? 

Thanks for reading all of this. 

XavierS1984's picture
XavierS1984
Posts: 4
Joined: Jan 2018

Hi you can email me at xaviers1984@yahoo.com or I am also on facebook here https://www.facebook.com/xavier.sifuentes

Feel free to contact me whenever you would like.  I would be happy to provide you with any information I can.  Thanks.

kidneystoneblessing
Posts: 25
Joined: Aug 2017

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's picture
khdez
Posts: 2
Joined: Jan 2018

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
Posts: 25
Joined: Aug 2017

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

khdez's picture
khdez
Posts: 2
Joined: Jan 2018

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
Posts: 2
Joined: Feb 2018

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's picture
XavierS1984
Posts: 4
Joined: Jan 2018

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.

kidneystoneblessing
Posts: 25
Joined: Aug 2017

Wishing you the best outcome!  We will beat this!  Next scan for me is march 16th.  Will let you all know my results.  

kidneystoneblessing
Posts: 25
Joined: Aug 2017

My scan March 16th came back clear.   No evidence of disease.   next Scans in mid June!  Closing in on a year with many more to go!

XavierS1984's picture
XavierS1984
Posts: 4
Joined: Jan 2018

Hi everyone, I just had some scans last week and it appears some of my tumors are no longer detectable and the larger ones seem to be shrinking.  This is very exciting news for me, however, I am far from out of the woods.  I still have a long ways to go to be absolutely cancer free, but these last round of scans gives me real hope.  The drug pazopanib is what I am on and it has minimal side effects, the worst being diarhea.  My hair is completely white now and my skin is getting lighter as well.  A small price to pay I imagine to stay alive and be here for my babies.  Good luck to everyone, and I will keep you updated on further developments.

tmart
Posts: 1
Joined: Apr 2018

I am another member of this very small group. It's nice to know I'm not alone in dealing with this disease, but truly I wish none of us had it

At 47, I was diagnosed with tRCC in February 2017 after being extremely sick with what turned out to be a kidney infection. In the course of diagnosing the infection, they discovered a 5 cm tumor on my right kidney. A few weeks later, I had a nephrectomy. They thought I would be fine because it was caught early and the margins were clear. Unfortunately, my six month scan revealed the cancer had spread into my lymph nodes at the edge of the nephrectomy bed. I had a second surgery to remove the lymph nodes (RPLND) and right adrenal gland. A scan several weeks later, showed that the cancer had spread to my chest -- thoracic inlet, lymph nodes and lungs. Unable to get ahead of it surgically, we are now fighting it systemically.

I have been on the targeted drug therapy (aka inhibitor), cabozantinib for 3 1/2 months. My last scan (February) showed that the drug is having an impact -- no new spots, nor had the existing spots grown. I have another scan in mid-April.

 Xavier, pazopanib must be similiar to cabozantinib; My hair has turned white as a result of the drug too. I've had many other side effects, but most have been manageable...albeit, not much fun. 

Best wishes to everyone.

kidneystoneblessing
Posts: 25
Joined: Aug 2017

From what I have read system therapies have been tough with this type.  Good to see some stability and even some tumors going away! Positive vibes and continued strength to both of you!  

HJS
Posts: 1
Joined: Apr 2018

Hi - my husband sadly is also in this club. RCC xpii translocation in 2008 and recurrence 2016 with mets to liver, spleen, intestine  and now since december, spine. He is said to be..stage IV. It is heartening to read about others in the same boat. It is devastating to watch someone you love going through this and i look anywhere I can for information and support.

He was on pazopanib and responding so well to it, but since the spine mets was put on cabo... last ct this week shows liver met is increasing in size - he sees the oncologoist on tuesday for next step...

cbrider
Posts: 1
Joined: Apr 2018

What treatments have you used and were they effective?  Anyone tried Optivo/Yervoy combo??

kidneystoneblessing
Posts: 25
Joined: Aug 2017

Hi all!  An update.  After nearly 1 year since resection of a 4cm tumor in left kidney (incidental finding) and about 14 months since diagnosis, latest scans were NED!  So on to the next year and to start running the SF half marathon!  Love this site and supporting hearing other stories.  To all, stay positive, live life, and love the family and friends.  next scans October 2018!  Wanted share under this thread since translocation rcc is extremely rare (1 and 10 million). 

stub1969's picture
stub1969
Posts: 756
Joined: Jul 2016

Awesome news!  Thanks for sharing AND good luck with your half marathon.  

Stub

kidneystoneblessing
Posts: 25
Joined: Aug 2017

Ya very excited!  Kidneys are holding up great too!  Maybe even better since surgery lol

ambava33's picture
ambava33
Posts: 71
Joined: Feb 2017

Hi everyone! Wow, didn't think I would login after so long and see so many people added to our fun club! (LOL) I have stayed very low key just for sanity. I needed some normalcy in my life and I got lots of anxiety when I logged in to this site! However, it is now time for my yearly scans on Friday so I must face reality and know that Cancer has happened to me, but I have faith that it wont' break me. I hope all of you are doing well and I will update after Friday when I get my results. I am praying to the high heavens for NED to be my result! 

JerzyGrrl's picture
JerzyGrrl
Posts: 757
Joined: Jun 2016

Uncle Ned is having dinner at my place, so he will certainly be available to drop by and see you later in the week. 

All the best - !

stub1969's picture
stub1969
Posts: 756
Joined: Jul 2016

Welcome back, ambava!  This post has popped up with new members a few times since you last checked in, which made me think of you.  I'll be sending you good thoughts on Friday.

Stub

ambava33's picture
ambava33
Posts: 71
Joined: Feb 2017

I have thought of you all so often. I thought about loggin in a lot but like I said it was just to much anxiety when I read a bad story. I only want everyone to have good stores. If only life were that easy. Thanks for the good thoughts for Friday Stub and JerzyGrrl I am so happy for you! I sure hope uncle NED feels like visiting me too. 

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