Translocation Renal Cell Carcinoma XP11.2

Steve.Adam said:

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.

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 

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

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 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!

 

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

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

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 said:

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 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

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.