Undefined Renal Cell Carcinoma with Translocation Xp11.2

Texas_wedge

NAD said:

Translocation Xp 11.2 in children

Hello again

I am currently researching the best centers and specialists who have seen this tye of tumour in children. the number of cases wordlwide  are extremely  small, adults cases less so .

A professor of  pathology  called Dr Pedram  Argani MD based at John Hopkins Hospital USA has probably written about and researched the most of these cases and is currently working on analysing  tissue samples he has been sent from all over the world  .He has also started a website to collect and share more information between doctors who are treating patients with this type of tumour. If you want to help there is also a fund set up for his research .The more funds he can acess the quicker the work . Unfortunaly rare cases don't get government funding and the drug companies aren't interested either.

 

I have yet to find a paediatrician oncologist who is confident in advising any adjuvant treatment apart from the 3 months follow up scans . Has anybody any further information ? I believe that there are a lot of doctors who have experience of working on cases like these worldwide and the more information is shared the better. 

Lets help each other , more research is needed now.

Xp 11,.2 research

NAD, you could add another string to your bow by posting this message on the new site called Smart Patients, which is the successor to the ACOR KIDNEY-ONC List and has a much higher level of discussion of such matters than here, where our concern is more centred on friendship and support.

There are many on Smart Patients.com who are involved in treatment at JHH and may be interested in giving further help.

NAD

kathyoasis said:

Xp11.2 translocation rcc

My 9 year old son was diagnosed with Xp 11.2 translocation rcc, stage iv.  It spread to the limph node in the neck. If you know anything about this subtype and where you are treated, please let me know. Please help!

 

Kathy

Specialists Paediatrician oncologists in translocation XP 11.2

Hello Kathyoasis

If you are based in the USA there are two oncologists with experience of this type.

Dr James Geller Cincinnati children's hospital 

rDr Jeffrey Dome children's national medical centre in Washington

 

 

 

 

 

 

In the USA The 2 paediatrician oncologists with most experience of translocation XP 11.2 RCC are

Dr James Geller Cincinnnati Children's Hospital

Dr Jefferey Dome Children National Medical centre Washington 

 

 

 

 

 

 

 

 

 

NAD

Texas_wedge said:

Xp 11,.2 research

NAD, you could add another string to your bow by posting this message on the new site called Smart Patients, which is the successor to the ACOR KIDNEY-ONC List and has a much higher level of discussion of such matters than here, where our concern is more centred on friendship and support.

There are many on Smart Patients.com who are involved in treatment at JHH and may be interested in giving further help.

Thank you will do .

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

kathyoasis

NAD said:

Thank you will do .

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

smartpatients

hello Nad,

  My son is actually seeing Dr. Geller in CCH. I posted in Smartpatients too. How is your nephew doing? Who is he seeing? Please email me at kathyoasis@yahoo.com.

  For those who are interested in this type of cancer, there will be a family day at the international pediatric tumor biology conference on May 10 in Bethesda Maryland. There will be question and answer, lecture, keynote on new drug development, etc. You can find out more at pablove.org/renaltumorKathy

ajens2528

Great to see new posts on this!

I had a false alarm.  I had robotic partial nephrectomy to remove 3.2cm tumor from right kidney April 2013. Completely contained, negative margins, stage T1a, has not spread. It was originally diagnosed clear cell, but because of my age (24) they sent it to the mayo clinic and with FISH test, diagnosed it Translocation Xp 11.2.

My urologist sent me to an oncologist. Right now the plan is scans (MRI w/contrast of pelvis and abdomen and CT scan w/o contrast of chest) every 3 months for the "initial period" (I don't know how long that is.) I'm at Thomas Jefferson University in Philadelphia. She basically said she has very little experience with this as would any other doctor around, but we will keep an eye on it. If it comes back, she recomended two doctors who do publications on this type: Toni Choueir at Dana-Farber in Boston, and Nizar Tannir at MD Anderson in Texas.

Hopefully it doesn't come back, but I have not been able to find any information on this type. Especially since I've found it so early on, I seem to be an exception. My doctor recommended genetic counseling for "completeness" but otherwise, would that be necessary? What would that show me exactly?

Also wondering about risks with the scans so often. How much is too much radiation? Assuming I will be getting the chest CT and abdomen & pelvic MRI every 3 months for say.. 2 years? Is that too much? She is concerned with that because of my age and the likliness of the radiation affecting me in my future. But she said "That is a decision we'll have to make together at that time" So I'm not really sure when "that time" is... when does it become too much?

Thanks

Mimir

ajens2528 said:

Great to see new posts on this!

I had a false alarm.  I had robotic partial nephrectomy to remove 3.2cm tumor from right kidney April 2013. Completely contained, negative margins, stage T1a, has not spread. It was originally diagnosed clear cell, but because of my age (24) they sent it to the mayo clinic and with FISH test, diagnosed it Translocation Xp 11.2.

My urologist sent me to an oncologist. Right now the plan is scans (MRI w/contrast of pelvis and abdomen and CT scan w/o contrast of chest) every 3 months for the "initial period" (I don't know how long that is.) I'm at Thomas Jefferson University in Philadelphia. She basically said she has very little experience with this as would any other doctor around, but we will keep an eye on it. If it comes back, she recomended two doctors who do publications on this type: Toni Choueir at Dana-Farber in Boston, and Nizar Tannir at MD Anderson in Texas.

Hopefully it doesn't come back, but I have not been able to find any information on this type. Especially since I've found it so early on, I seem to be an exception. My doctor recommended genetic counseling for "completeness" but otherwise, would that be necessary? What would that show me exactly?

Also wondering about risks with the scans so often. How much is too much radiation? Assuming I will be getting the chest CT and abdomen & pelvic MRI every 3 months for say.. 2 years? Is that too much? She is concerned with that because of my age and the likliness of the radiation affecting me in my future. But she said "That is a decision we'll have to make together at that time" So I'm not really sure when "that time" is... when does it become too much?

Thanks

Radiation and Genetic Counseling

While I don't have Xp 11.2; I too am a young (19) . I am also on an every three month scan cycle. My doctors specifically talked with me about reducing my radiation exposure because I will have to deal with scans for the rest of my life. MRIs don't produce any radiation, so every other scan cycle I will get MRIs instead of CAT scans. I would just talk with your doctors and develop a plan to watch radiation.

 

I had some genetic testing done. There are several genetic diseases/mutations assocatied with kidney cancer.  If you are young, it is much more likely that the cause of your cancer was some sort of genetic abnormality.  The docotor probably recommended the testing to see if they could learn anything else that might help.

ADean70

NAD said:

Translocation Xp 11.2 in children

Hello again

I am currently researching the best centers and specialists who have seen this tye of tumour in children. the number of cases wordlwide  are extremely  small, adults cases less so .

A professor of  pathology  called Dr Pedram  Argani MD based at John Hopkins Hospital USA has probably written about and researched the most of these cases and is currently working on analysing  tissue samples he has been sent from all over the world  .He has also started a website to collect and share more information between doctors who are treating patients with this type of tumour. If you want to help there is also a fund set up for his research .The more funds he can acess the quicker the work . Unfortunaly rare cases don't get government funding and the drug companies aren't interested either.

 

I have yet to find a paediatrician oncologist who is confident in advising any adjuvant treatment apart from the 3 months follow up scans . Has anybody any further information ? I believe that there are a lot of doctors who have experience of working on cases like these worldwide and the more information is shared the better. 

Lets help each other , more research is needed now.

Translocation Xp 11.2

Hi NAD,

   Do you know of good oncologist for adults that are knowledgable with this type of cancer? 

NewDay

ADean70 said:

Translocation Xp 11.2

Hi NAD,

   Do you know of good oncologist for adults that are knowledgable with this type of cancer? 

Information

Hi Adean70,

I was told by MD Anderson that I had translocation xp11.2.  I was advised by some on the board to contact the National Cancer Institute because they study rare RCC.  When they heard that I had this type, they were very interested in seeing me because they are the ones that discovered it.  It is extremely rare, especially in adults.  I highly recommend calling their genetic counselor, Lindsay Middleton at (301)402-7911.  Based on their testing, they say I do not have that type, but some other unknown rare type. That's the thing about second opinions.  How do you know which one to believe? I would be interested in hearing what you learn.

Good Luck,

Kathy

judygompers

I'm 77 and just got diagnosed with xp11.2. In a partial nephrectomy they found that the 2.2 cm tumor (enclosed in a cyst) had gone into the fat but not gone beyond the fascia that enclosed the kidney. Stage 3, they're calling it and saying it was taken out with clean margins. What I don't know: should it be checked every 6 mo-- or more often? Should I worry about microcells--spreading? They hadn't found lymph nodes to take out and check--maybe that's because they were so utterly sure it would be one of those slow-growing small cancers!

judygompers

I WILL add that my particular oncologist said the best suggestion he'd found in research was 150 minutes a week brisk exercise to boost the immune system--like a brisk walk.

eug91

Hi judygompers-

Welcome to the board. First off, congratulations on getting through your nephrectomy. Hopefully you're well on your way to healing.

As for your questions, it sounds like your tumor was caught and removed early. It's extremely unlikely/rare for tumors under 4cm in size to spread. I'm not a doctor, but with clear margins and a 2cm tumor, six month follow-ups are probably fine. But if you're concerned, don't be afraid to ask your doctor about the possibility of a sooner follow-up.

Oh - if you have further questions, you should probably start a new thread - this one is over a decade old.

judygompers

Thanks eug91. I WAS wondering about the dates on the spread. How do I start a new thread? Also, my tumor had gone into the fat, though they said that the clean margins included margins around the fat. But does that change what you say about "extremely rare." And is there any way I can look up what you're saying-- it would certainly increase my peace of mind. Thanks again for answering.

judygompers

Hey, Eug91. I just looked up your profile. 4 years no return--so glad for you!!

eug91

https://csn.cancer.org/discussion/comment/1710502#Comment_1710502

When you're navigating in the kidney cancer forum, there should be a big blue button near the top-right that says "NEW TOPIC". That will start a new thread.

There are a lot of factors involved and you could go dizzy trying to draw conclusions about the future - clean margins is great, into the fat isn't as good - plus the type of RCC, grade, stage, location, your age, your family history, etc etc. But the biggest factor for spread is the size, and yours was caught early - under 4cm.

I'm not a doctor, so I don't have any links so you can look up / fact-check what I'm saying. But here's one that talks about the 4cm number and the odds of spread.