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Undefined Renal Cell Carcinoma with Translocation Xp11.2

Mookies Mom
Posts: 13
Joined: Jan 2010

Just wondering if anyone has had experience themselves or family members with this sub-type of kidney cancer. We were told that this sub-type is usually seen in children, but is rarely seen in adults. My husband is 30 years old and had a radical nephrectomy of his left kidney back in February. Since surgery the cancer has spread to the lower spine. Based on the very little information I can find for this sub-type on the internet, it appears that when it shows up in adults it is very aggressive.

I understand that our prognosis is poor. But the last thing I want to do is to waste anytime we have left. As of this point, either no one wants to tell us a timeline or they just have no idea.

It is incredibly hard to have grown up in the information age but cannot seem find what you are looking for on the internet. I plan on posting updates on this blog in case there is some one else out there who wants answers regarding this sub-type. I know that some are of the opinion, "what you don't know can't hurt you" but I am of the opposite opinion that knowledge is power. All we can do is plan for the worst and hope for the best.

God's blessings to all of you that deal with this horrible disease and to the family members that have to watch someone suffer through it.

Any information that anyone could share would be grately appreciated.

momneedsinfo
Posts: 7
Joined: Oct 2009

Hi,
My daughter was diagnosed with renal cell carcinoma xp11.2 /TF3 gene fusion. She was 17 when diagnosed last October, 09, now is 18. They removed the tumor (size of a cantalope) and her right kidney or what was left of it. The pathologist said that she was the youngest person he'd seen diagnosed. He had only seen 5 people diagnosed because it's so rare and he was going to write it up in a medical journal because of her age and the pathology of the tumor.

Her tumor was intact in the kidney walls. Was your husbands? Or had it already breached the walls and metastisized? They were shocked it was still contained because of the size of the tumor. She had no symptoms. It was found because she kept getting sick to her stomach. We thought she had a stomach ulcer. They think it may be because the tumor started pressing against the stomach wall.

She has scans done every 3 months, because we were told that this is an extremely rare type of cancer, very aggressive and has a high chance of reoccurance. She did not undergo treatment, because nothing has been shown that doing biological therapy works to prevent reoccurance. And, chemo does not work on this type of cancer.

I agree with you, it is very difficult to find information about this type of cancer. But, apparently from what i have found is that it is most common in young adults, ages 15 to 30. I am so sorry to hear about your husband. It is so hard to watch my daughter deal with this. She has also had complications from surgery, so it has not been an easy road. Because we had 3 different doctors tell us we should do the scans that often, we are. But I worry about all the radiation too. It's thrown her plans for college out the window and she is very depressed.

I am very curious as to whether your husband had a reoccurance or was it metastisized from the first time. My prayers are with you. I guess I don't have much info, but we do have the same cancer.

God Bless you!

Mookies Mom
Posts: 13
Joined: Jan 2010

Hi,

My heart goes out to you and your family. We discovered the 10 cm tumor in his left kidney by accident in late January. He started experiencing severe pain on his left side with shooting pain down his leg. A urinalysis found microscopic traces of blood in his urine, so his doc suspected a kidney stone. Then by CT scan they found the 10 cm mass in his left kidney and another 10 cm mass in one of the surrounding lymph nodes. He had his left kidney and surrounding lymph nodes removed middle of February. About 2 weeks after his operation he started having tailbone pain. His doctors thought it might be due to a combination of the hospital stay and inactivity. They ordered x-rays as a precaution, but saw nothing. The pain continued to get worse and worse. A MRI was ordered and a 2 inch mass was found on his lower spine. The tumor is compressing his sacral nerves, so he has now lost all bowel function. He did have a bone scan prior to his operation, which came back clear. So this tumor on the spine has spread since his operation. So that means within a month this tumor grew to be that large. One of our doctors has been sending me copies of medical journals/case studies on this sub-type. Based on everything I've read, it tends to be less aggressive in younger patients. So I'm hoping that will be the case with your daughter. I've read a few cases where the drug Sutent seemed to stop the progression and sometime even began to shrink metstatic tumors. My husband is suppose to start that sometime this week with another MRI scheduled in 3 or 4 weeks. I think the scans every 3 months seems pretty routine with this type of cancer. Before we knew that it had already spread, the original plan because of the lymph node involvment was to start him on a drug like Sutent just as a precaution. Had this been suggested for your daughter? There have been phone conferences regarding his treatment plan, including calls with doctors from Sloan, Cleveland, and M.D. Anderson. We were told from M.D. Anderson that they've only seen this subtype once before in an adult. There is a doctor in Cleveland, Dr. Brian Rini, whose name seems to keep coming up. I believe that he is one of the doctors that has seen Sutent show some progress in some patients. I hope your daughter can find a way to remain positive. Maybe she could consider an online university. I'm sure she doesn't want to miss out on the "college experience," but at least that way she could stay in school mode. One the things I remember most from college was all the drinking I(Man, I did some stupid things back then) - I'm guessing online classes would save her from that culture as well. :-) My husband is starting to sink into depression as well. One minute he attending his surprise 30th birthday party, teaching 5th graders, running after our 1 year old, & coaching varsity boys basketball; then the next minute he's being told he has cancer. And now he spends almost all his time laying on the couch in pain, too afraid to eat for fear of throwing up, and not even being able to go to the bathroom on his own. Sometimes I thinks its even harder for me to watch him just fade away to this frail person from being someone I thought could do anything.
I guess its kind of nice talking to someone else that is dealing with this subtype, even though I wish no one would ever have to experience this. Hang in there. I'll keep you in my prayers.

lwhitman214
Posts: 2
Joined: May 2010

OMG... so glad to see posts from someone else of course not under these circumstances. I am the other patient from MD Anderson. I am 48 years old and I had surgery 7/20/2009 at MD Anderson I had my last scans on 3/2/2010. I have read and heard the same information and felt frustrated at the amount of information. In my pathology report they had a 2nd pathologist confirm it, it is so rare. At MD Anderson I am only doing scans every 6 months.
Six months prior to finding the renal cancer I had LCIS and ADH in the left breast. Last year I had surgery in Febuary for the breast and July for the reanl mass. I take no medications. Tamoxifen was recommended for the breast but I am too afraid to take.
So far they say I am free of cancer. No one seems to be able to tell me much. They said they got it all and what kind it is in case I wanted to read about it.
One nurse joked and oh you will probably die of a heart attack first.
I agree with the comment knowledge is power. My friends tell me I should stop reading, but I think they are wrong.
If anything I have experienced can help someone else it would be the best gift I could possibly give.
I feel very lonely often. Thank God for FaceBook.
God Bless

momneedsinfo
Posts: 7
Joined: Oct 2009

I don't get back to these posts very often, life is so crazy, but I'm glad I did today! As an update, my daughter did get the ok to go away to college in San Francisco. It's not too far from us so she can fly home and do her scans, etc. It has been 7 months since her surgery and she is still struggling physically and emotionally. I am hoping that going away to school will help her move on with life! But, I am very worried about her being that far away too. I guess if it doesn't work out, she can just come home and go to the local CC. I agree with you that knowledge is power. I have been following different drug trials and am interested in Gleevac? My 15 yr old son also has Crohn's disease and I think that this type of drug may be beneficial in the future for both cancer and autoimmune diseases. As a matter of fact, I am stunned by the similarities in her cancer and his Crohn's. Both chromosonal type glitches. Our type of cancer doesn't seem like the typical cancer. Could it be genetic? Anyways, You said that you are only doing scans every 6 months? My daughter is doing them every 3 months for the first year and then 4 months for the 2 year and then to 6 months after till year 7. they recommend going for 7 years because of the reoccurance rate. What does your doctors say? Because it is in the pelvic region and with all the radiation, I am worried about it interfering with her chances of having children She is only 18 now. Well, I hope that you are all doing well. My prayers are with you both.

God Bless and Take care of yourselves the best you can!

wmarecle2
Posts: 4
Joined: Sep 2010

Our Drs. decided at their tumor board review meeting that MRI would be the best detection tool for this cancer. You may want to consult your DRs. about using them. There is no radiation exposure with MRI, its magnetic. My daughter has used mostly MRI as much as possible because of chemo induced cardiomyopathy and they are motivated to limit her exposure to radiation because of it. She isn't likely to be able to have children so that isn't a concern for us at this time. She had full abdomen and pelvic radiation for her first cancer in addition to the chemo drugs, etc at age 5, her chances are pretty low of being fertile and the having cancer twice, heart issues, a single partial kidney, etc., I am not sure her body could handle a pregnancy if it were possible to get pregnant. Only God knows the plan. Take care!

lwhitman214
Posts: 2
Joined: May 2010

I had my annual scans 9/15/2010. My orginal surgery was 7/20/2009 I had a partial nephrectomy of the right kidney with no metastatic disease. The pathology report states xp11.2 translocation Positive for vimentin,CD10 and P504s with intense nuclear accumulation of TFE3 (repeated twice). After only a year they say I can go to annual scans. I am being treated at MD Anderson Cancer Center In Houston Texas. They seem very confident. I hope they are correct. At Houston they have only used CT scans. They do the whole torso chest/abd/pelvis chest xray and blood work each time I go.
I had a Petscan locally last year that did show the renal tumor, but at that point they already knew I had it. They did the Pet because I demanded it after they were unable to perform excisional biopsy on the area of LCIS/ADH in the breast and only 3 months later I found out I had renal cancer. Confirmed by MRI/US and CT.
At first I did not understand as much and thought the two were related.
That is why I left my home state and went to Houston for treatment.
God Bless all!

southecare
Posts: 1
Joined: Sep 2010

Hello,
My son was diagnosed with renal cell cancer in May of this year. He was 13 at that time. He had a left radical nephrectomy. He had 6 of 8 LN's positive and had some spread into the perinephric fat. According to our specialist (who has special expertise in xp 11.2 translocation) spread to the lymph nodes in children is not a poor prognostic sign. He also appears to believe that there are many people with this subtype but it is not always tested. Some sources believe it is a better prognostic sign to have this translocation subtype. We have talked with several friends in our area who were adults when diagnosed with renal cancer including one who is over 10 years out after a stage 4 initial diagnosis (underwent surgery and chemo).
Current research suggests that this subtype of RCC mimics sarcomas and is such not like epithelial types of cancers. This means that they might be sensitive to sarcoma treatments instead. There are a few antiangiogenic drugs showing promise as well as some interest in the sarcoma line of treatments. I hope this information is helpful.

rfalls6193
Posts: 3
Joined: Sep 2010

Hello there,
I would like to possibly share information with you regarding your son's condition and my brothers. My brother was dx 3 wks ago with RCC XP11.2. We live just north of Chicago and he just left his "specialists" office with a huge question mark to all his questions. He has been told that there isn't much information regarding this subtype and with that no current treatments either. To me it sounds like the doctors have just told him to go home and enjoy the time he has, BUT, being in the medical field myself, I won't allow that. Can you give me some insight as to what you may have found regarding this cancer.
My brother went into the ER 3 wks ago with RT back pain, thinking he had a kidney stone, they found enlarged lymphnodes. After his biopsy and surgery, they found cancer cell in 6 nodes also. Before his surgery they did a nuc med wholebody scan which was normal except for 1 small spot on his spine which they concluded was degenerative. However, last week I did an MRI on him and found mets throughout his Thoracic/Lumbar spine. So in 3 wks this cancer spread like fire to his bone also. So, this is my concern. I refuse to let him wait another 3 wks before its way too late. Have you or has anyone ever told you what the life expectancy of this subtype might be? Please let me know. You can email me directly @ rfalls6193@yahoo.com...just use XP11.2 as the subject. Thank you!!

NAD
Posts: 6
Joined: Oct 2010

`hello
```i read your message with great interest as I have a family member aged 14 who has just been diagnosed with this tumour. He is practically in the same situation your son was in may so still trying to find out where the best treatment centers are , and where to go for follow up scans.
I am really glad that your son is doing well. Waiting for the next scan result must feel like real agony.
The hospital my relative was at had had no experience of treatment but luckily was able to diagnose the tumour properly. Who was the specialist you saw for your son? You say in your message that he has special expertise in translocation xp11.2 cases. Did he give you any ideas as to why the tumour developed or did he suggest that your son be tested for a genetic link in case the cancer was familial? i understand that the majority of cases in kids is due to a prior episode of the immune system becoming compromised .

NAD
Posts: 6
Joined: Oct 2010

Hi There
You sound very well informed. If you do get back on this site would you mind writing back. We are in the same situation as your 13 year old boy. My nephew is 14 and we need to find a specialist with expertise in this type as this condition is very rare.
I would be really greatful for any information anyone may have.

rfalls6193
Posts: 3
Joined: Sep 2010

My younger brother was just diagnosed with RCC XP11.2 3 weeks ago and just before his surgery they did a wholebody NM scan which was normal. Today we did an MRI of his T/L spine because he was having severe pain and we now have found mets to 8 vertebrae in his back, just 3 wks after his normal NucMed exam. We live close to Chicago, and the doctors here have told him this is extremly rare for him to have this type of cancer, he is 36. I'm trying to find out any information we can regarding this type and obviously we are trying to get answers as to life expectancy, etc. His doctors aren't saying to much so far, except to keep sending him to specialists. I would hope somebody sees this post and responds to it PLEASE!!! It seems that this is extremly aggressive and time seems to be of importance. You could please email my personally @ rfalls6193@yahoo.com Subj: XP11.2. Thank you all and GOD BLESS YOU ALL!!!!!

Richard

wmarecle2
Posts: 4
Joined: Sep 2010

My daughter was recently diagnosed with this type of cancer, 8-13-10 was the day we got the news. She is 7 years old. She was diagnosed with stage IV Wilms' Tumor (mets to lungs, liver, adrenal gland, lymph nodes), a childhood kidney cancer, on 2/29/08. She underwent a complicated course of treatment with many grade 3 complications. She developed hemolytic uremic syndrome and her single kidney was failing but recovered with plasmapheresis and multiple transfusions. She also developed chemo induced cardiomyopathy and her heart was at a very low function for quite some time. It has rebounded to a low normal function. These are just to name a couple of the major complications, she was really overly sensitive to the affects of chemo, radiation and surgery. She was doing so incredibly well and life returning to our new normal when they found this new growth during her routine, every 3 months, scans. Unfortunately, they saw it in the July 29th scan and when looking back at her previous scans for comparison, it was there in February. It had been growing all of those months however it was still very small, 1.6 cm. On Aug 12, '10 she had surgery for a partial nephrectomy during which they also removed many suspicious lymph nodes. They expected this to be a recurrence of her original cancer however pathology proved it to be xp 11.2 translocation renal cell carcinoma. They did surgery again on the 8-16-10 for a lymph node dissection, removing them all on that side from diaphram to groin. There was only one lymph node positive for cancer from all that were removed. This is supposed to be her only treatment unless it returns. There are only trial drugs available and we are hesitant to expose her to anything without some proven value given her severe complications with therapies in the past. A more effective therapy might be suggested to remove her entire kidney but she only has one because she had a radical nephrectomy for the first cancer, so we are preserving that option only if there is a recurrence. This would force her into dialysis of course. her tumor was very small so we are hopeful that this was the best option. From our research we have found a link to this perhaps being another complication from Cytoxan, a chemo she received during her first course of treatment. How sad that the treatments available cause such devastating effects. I believe knowledge is power too and wish to help others and learn from others. We fight on for a cure for this dreadful disease called cancer! Sevanah will have an MRI next month and another the following month and then we will likely resume the 3 month scan schedule. They suggested that MRI would be the best detection tool for the abdomen pelvis area. We already limit her radiation exposure as much as possible because of the heart condition so use MRIs whenever possible. We try to limit CT usage to once or twice a year. Take care all and please stay in touch with what the future looks like for each of you, this is such a rare cancer that those of us effected must band together. wmarecle2@comcast.net

wmarecle2
Posts: 4
Joined: Sep 2010

In regards to the NM scan - are you referring to a PET scan? My daughter had a PET scan as well on July 30 after the MRI revealed the spot in her kidney. We know now that the tumor was not PET avid. It was indeed cancerous and the PET revealed nothing. So perhaps it just isn't a PET avid tumor and was indeed there before just not revealed. Our daughter had a bone scan also after her surgeries and nothing revealed on her bone. I just wanted to clarify which test he had and our testing outcome. Have they done a brain scan? They did for our daughter the same day as the bone scan.

Mookies Mom
Posts: 13
Joined: Jan 2010

Hi Richard,

I apologize that I haven't been following up with this site as much as I should. Fortunately, it is for good reason - my husband has been doing great! I'm so sorry to hear about your brother, this story sounds so much like my husband's. He was diagnosed with undefined renal cell in January of 2010, had his left kidney and a bunch of positive node removed in February 2010. It took forever before we got the subtype 11.2 xp diagnosis back on the tumor after his operation. Its just so rare and had to be sent to a specialist. March 2010 we learned that it had spread to his spine. He had every scan possible in January and nothing was ever seen on the spine. So in under 3 months the cancer had spread to the spine and was already 4 cm. Because of where on it is located on his spine (just above the sacrum), no surgeon would even look at him. They did radiation therpy which initially proved to be successful. In May we learned that this tumor had shrunk by almost 1 cm. My husband was able to return to work and finish out the school year. The pain started to come back in June and after one of his follow up scans we learned in July that the tumor had begun growing again. He has suffered a lot of nerve damage due to the size of the tumor. He has some weird pains and lost some of his bodily functions. He is also no longer able to have children. In August 2010, he underwent CyberKnife on the tumor just in time for him to return to back to school. Since the CyberKnife he has really been doing great. He has only missed a day or so of work and was even able to return to coaching. Plus there's the daily chasing around our sassy 2 year old. Before the procedure, we were told that it could take up to 8 weeks to find out if the CyberKnife was successful and it may be a one time shot. In follow up scans since the procedure it appears that the tumor has some necrosis and has not grown in size. This subtype is aggressive for adults, but it seems that we are keeping in check. My husband has also been taking Sutent 50 mg, 28 day cycles since May. There are some annoying side effects (hand & foot syndrome). With the Sutent, his infected lymph nodes appear to be getting smaller with each check up. And there has not been any new spread to other soft tissues. I hope our story gives you and your brother hope. It has almost been a year since our nightmare began and I can honestly say that we are positive for the future. We don't live far from Milwaukee and feel that we are seeing the best doctor in the area for renal cell. We never got a timeline from any doctors, but we haven't asked for one either. I figured after reading the statistics, the phase IV prognosis, and the spread to the spine our time was limited. Now I'm not so sure. My husband and I agreed from the beginning that we would just go on with our daily lives, do the things we already had planned, and to keep making plans for our future. For the most part, now our lives seem back to normal (well, its a new form of normalcy). Best of luck to your brother and I will keep you and your family in my prayers.

lfalls75
Posts: 4
Joined: Jan 2011

Hello,

I saw your response to my brother-in-law Richard. I thought that it would be very interesting to correspond with you regarding your husband. My husband was diagnosed back in August. My brother-in-law was online looking for anything he could find to help us figure out what had just turned our world upside down. We are only 4 months into this diagnosis and I am scared to death. My husband is doing pretty well with the Sutent. He is on the 50 mg, 28 day cycle since October. He has had some side effects but so far nothing too serious. We are coming up on his first scan since this all started and we are very nervous about the results. His had metasticized to the lymphnodes and to the bone as well. He went back to work in October, but luckly he works from home, which is a blessing right now. He has some pretty severe pain in his lower back and the muscle aches all over his body. We find that it is taking more pain pills to keep him somewhat comfortable. We were just going through life happily with our two girls and one night he had some kidney pain. He thought that he was having a kidney stone and that's what made him go to the doctor. We live only about an hour from Milwaukee as well. As of right now my husband sees an Oncologist in Illinois but we are looking to move his treatment and care up to our home town to make it easier on all of us. We only go to Illinois one time a month for his Zometa treatment and to see the doctor but I feel like he would have a better support system if we saw a doctor closer to home. I hope your husband continues to do well and I am very interested in keeping in touch. I know that I could sure use an ear once in a while to help me through this, as I'm sure you could use the same. It is different when you have somebody who understands what you are actually going through. Again if you are interested in keeping in touch I will give you my personal email address if that would make it easier. Best of luck to you and your family and I will keep you and your family in my prayers.

marymint11
Posts: 2
Joined: Apr 2011

HI IFALLS 75
i HAVE ONLY RECENTLY JOINED THIS WEBSITE SO NOT GOT THE HANG OF THE WAY IT WORKS AT THE MOMENT SO HOPE YOU GET THIS MESSAGE.
MY HUSBAND WAS DIAGNOSED WITH RENAL CELL CANCER IN MARCH 2008. HAD NEPHRECTOMY IN APRIL 2008.ALL WAS OK TILL OCT 08 WHEN CANCER CAME BACK. WE WERE TOLD IT WAS VERY RARE AND NOTHING MORE THEY COULD DO. WE FOUGHT FOR SUTENT WHICH WAS ONLY JUST LICENSED HERE INTHE UK AT THAT TIME. HUBBY STARTED SUTENT IN NOV 2008 AND IT WORKED FANTASTIC FOR ALMOST 2 YEARS. LED A FAIRLY NORMAL LIFE. STOPPED WORKING IN SEPT 2010. THEN TOLD IT WAS TRANSLOCATION ASSOCIATED!
HUBBY JOINED A TRIAL AND WAS GIVEN TORISEL OR TERIMLOSUS SORRY ABOUT SPELLING FOR THREE MONTHS BUT WAS NOT A GOOD OUTCOME, IT MADE MATTERS WORSE.
NOW OPTIONS LIMITED BUT HE IS NOW ON VOTRIENT OR PAZOPANIB IS THE OTHER NAME FOR IT. HE DOING OK SOME OF THE TUMOURS HAVE SHRUNK A LITTLE. WE ARE PAYING FOR IT HERE IN THE UK A LOT OF MONEY. BUT WAITING TO HEAR IF OUR NHS WILL FUND IT AS IT IS WORKING.
KNOW EXACTLY WHAT YOU ARE GOING THROUGH. WE WERE GOING ALONG NICELY BOTH WORKING, KIDS OK EVERYTHING WAS JUST FINE. OH MY GOD WHAT A LIFE CHANGER. BUT THERE YOU GO WE ARE ALMOST 3 YEARS ON AND STILL FIGHTING THIS TERRIBLE DISEASE. SUTENT IS MARVELLOUS THOUGH. ITS A LIFE SAVER SO HOPE ALL IS GOING WELL FOR YOU. HOPE YOU GET THIS E MAIL.
LOVE FROM U.K.

Mookies Mom
Posts: 13
Joined: Jan 2010

Hi LFalls75,

I truly hope that your husband's fight is going much better than mine. I apologize that we never touched based via e-mail. My work gets really crazy beginning in January and stays that way until June. I was just reading through these posts and would give anything to go back in time to my January when things seemed so optimistic. Things have drastically blown out of proportion this past month and half or so. Since Sutent we have gone through two different drug treatments (Nexavar and Votrient) with no stall to the progression. Then about a month ago we were told that the cancer has continued to grow and has made its way to the liver. We went on our planned family vacation decided to have a great time together and deal with it when we got back. We were home for about a week and then my husband was admitted to the hospital to try and get some answers. Just in a month's time the cancer has just gone haywire. I've seen the most recent scans and compared to the previous and it is just mind blowing. The cancer has grown and its everywhere. He's lost a lot of weight and was having trouble keeping any food down prior to his hospitalization. There is nothing like being 30 years old with a two year old and baby almost due to be born to hear the words from your husband's oncologist, "you are young and I don't want to you to have any unnecessary trouble, but you need to make sure that you and your husband have his affairs in order." I asked, "So we are to that point?" To which he answered, "We are there." Fortunately, my husband is home now and keeping food down. We are hopeful that he can start his next drug treatment (which will be some form of iv treatment) very soon. I am also very fortunate that my employer has let me start my maternity leave early so I can be home with him. As terrible as it sounds, I would much rather be busy at work. I hate hearing the increased wheezing because I know that means the cancer spread to his lungs is getting worse. I hate nagging him to eat or drink his supplements eventhough I know his stomach hurts from the tumors and he's afraid of when the vomiting might start up again. I hate longing to spend this time together as a family doing fun things when all he wants to do is lay on the couch because he does not feel well and is exhausted. I hate that I wake up to check to see that he's still breathing. I hate knowing that my children will grow up without their daddy and that its very possible that they will have little to no memory of him. I hate what cancer does to people like you and me, our families, and everyone on this site. I'm hoping with all my heart that his next treatment can turn some of this around and we can gain more time. I wish there was more out there about this subtype. We are now to the point where they are just going to try anything. Still keeping you in my thoughts and prayers.

marymint11
Posts: 2
Joined: Apr 2011

HI MOOKIES MUM AND LFALLS 75
ITS MARY MINT FROM THE UK.
SO SORRY TO HEAR MOOKIES MUM THAT YOU ARE IN SUCH A BAD PLACE AT THIS TIME. MY THOUGHTS AND PRAYERS TRULLY GO OUT TO YOU FROM THE UK.
I LOST MY HUSBAND AFTER A LONG BATTLE WITH TRANSLOCATION ASSOCIATED KIDNEY CANCER ON FATHERS DAY HERE IN THE UK.
HE TRIED EVERYTHING, SUTENT, TORISEL, VOTRIENT ETC BUT IT WASNT TO BE.
I AM LOBBYING THE GOVERNMENT HERE IN THE UK TO ALLOCATE MORE FUNDS TO THE RARE KIDNEY CANCER TYPES SO WISH ME LUCK ON ALL OUR BEHALFS.
TRY ANYTHING.
IN MY THOUGHTS AND PRAYERS ALWAYS
LOVE MARY MINT U.K. XXXX

Mookies Mom
Posts: 13
Joined: Jan 2010

Hi LFalls 75 and Marymint11,

Unfortunately, I am posting with bittersweet news. My husband passed away in September after an almost 2 year battle with this disease. Things went downhill pretty fast since my last post. Fortunately, my husband get to be there for the delivery of our son in July. It was probably one of his last "good" weekends. He was in the hospital the entire month of August with ascites from the tumors, putting in a pleurex catheter, putting in a feeding tube, and other complications. After all that he was able to come home for a day and a half on palliative care, but he experienced shortness of breath and was rushed via ambulance from our home to the hospital. I don't know what was worse, watching the emt's stabilizing him while holding my crying newborn or seeing my 2 year old watch her daddy taken away in an amubulance. It was just heart breaking. My husband said later that day that he knew that was the last time he would be at our house and asked to be put in hospice. I say my news is bittersweet because I miss him more than words can even begin to describe but I am so happy that all his suffering is over. When he knew that there was nothing else we could do, he was not afraid of the end result. He had complete confidence that he was going to a much better place. I believe that he is there watching over us now.

I don't have a medical background, but I have done a ton of research on the little bit I could find for this particular subtype. I just want to know what causes it. Why does it show up in younger people? Is it hereditary? Do people develope it as children and carry it into adulthood? Based on what I've read, I feel that this type of cancer must be the result of some sort of exposure causing the genes to mutate - but what? I've been trying to come with ideas of what the "trigger" was with my husband. As a teenager he worked for a restaurant and landscaping business. He always cleaned the grill at the restuarant, could it have been the degreaser used to clean it? Was there a chemical that was a carcinogen in something he used while landscaping? As an adult he always worked in schools. There has not been anyone else in his family with a history of any sort of kidney cancer. But did he somehow have a genetic makeup that made him more susceptible to developing this subtype? If there is no one that will fund research for this subtype because it is so rare, than maybe we just need to do our own. Maybe there isn't interest out there to fund something so rare because it won't result in enough profits. I wholeheartedly commend your efforts Marymint11 and wish you luck lobbying government. There just has to be some connection with this subtype, just need to figure out what it is. There definitely does appear to be a connection to this subtype for children with cancer reoccurence after received chemo. Need to try and get some sleep right now. But maybe I'll start a translocation fact sheet thread for people to enter in there experiences in a summarized form.
Still praying for both of your families.

ADean70
Posts: 8
Joined: Jan 2012

Hi,
I went to the ER 12/8/11 due to having been sick for 2 mths. I was having pain in my abdomen, nausea and vomiting. I thought I had kidney stones again since I constently have kidney stones. My urologist could never find out why I kept kidney stones. Well, I had originally went to my primary care Dr on 11/14/11 and they did a CT scan and said they would call me because, I was pretty sure I had stones again. Well, they never called so I figured I just had a bug. Well, then on 12/8/11 I went to the ER and they did blood work and CT scan with regular contrast and IV contrast. By the time I arrived back in the ER room the Dr was coming in and telling me they found a cancer mass on my lft kidney. So, he called the urologist on call. He sent me home and I had to call his office the next day for an appt. I went to the appt and he explained I had a 2cm mass on the top of my lft kidney and 98% of the time this type of mass is cancer. he knew it was not a cyst. Do, I had to talk with a surgeon within the practice to have the DiVinci Robotic Lft Radical Nephrectomy. Well, my surgery was on 12/23/11. Surgery went well however, I was having problems with my blodd pressure dropping to 80/40. Well, I am almost 3 weeks out and I still have pain on the lft side. Well, last friday I went for my follow up with the surgeon her in Nashville, TN. He just received the pathology report an hour before my appointment. He stated I have Renal Cell Carcinoma Translocation XP1.1. Well, I can not find any information on this type of cancer. The Dr told me he had never heard of this type of cancer and he called his professor at Vanderbilt University and the professor has never heard of it also. What research my Mom and I have done it is very rare and aggressive. The Dr could not guarantee that he was able to remove it all but, he thinks he did. Well, on my pathology report it states the tumor was 2.5cm weighed 10 grams. All the Dr is saying he will repeat the CT scan and chest xray in 6mths. But, he only removed the tumor he did not remove anything else he said he looked around and did not see any cancer cells. But, I would assume you can not see cancer cells. So, after what all I have read and what little information there is I want to make sure I am getting the right treatment. My mom wants me to go to MD Anderson I have had friends tell me I needed to go to another Dr. I have read on her patients that took the Sutent treatments. I just don't understand why the Dr is not doing any kind of back up to make sure it is gone. Can someone please help me understand and give me advice on what I should do.

I am 41 yr old female with 4 beautiful children and 2 granddaughters. I want to be here and strong as long as possible for my kids. Also, ever since my surgery I get very exhausted easily and I do not have any energy. I feel weak all of the time. Can someone please help me?

Thank you,
Andrea

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Dear Andrea,

I'm so sorry that circumstance has brought you here, being told you have cancer triggers a flood of emotions that is very difficult to deal with, this is normal. Rest assured that you have found a solid group of knowledgeable and supportive people that will help any way they can.

While I don't have any experience with RCC Translocation XP1.1 and I'm not sure if anyone here does, I will say that at 2.0cm your tumor was very small and they got to it very early which is the key to survival with most types of RCC. I strongly suggest that you find an oncologist that specializes in kidney cancer for an opinion on treatment options for this type, they should have better avenues of information than your urologist or MD. Fatigue is a common post-op complaint sometimes associated with anemia (low iron), and vitamin B deficiency, you can get a blood test to confirm. It may also just be because of the trauma your body has suffered and the healing process it must go through. Regardless of the type of procedure this is major abdominal surgery and it can take many weeks or even months to fully recover. Please keep us posted as your journey progresses.

You are in my thoughts and prayers,

Gary

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Andrea, lots of people here will pray for you and will help you look for answers. Are you sure you were told Translocation Xp 1.1 and not Xp 11? It may be too early for your doctor to be able to do useful backup work. It's probably scheduled so you might want to ask when you will get further information.

Sm4pack's picture
Sm4pack
Posts: 40
Joined: Dec 2011

Andrea,
Please know that we are here for you. I am praying for you. From what you've posted, I think you should consider getting another opinion. You are not getting the answers you deserve. I would get copies of your scans and pathology report and think about making an appointment with an oncologist who specializes in RCC. Take it one step at a time. You are your best advocate. I just had surgery on 1/9. I am 40 with two kids so I know where you are coming from.

Blessings,
Scott

ADean70
Posts: 8
Joined: Jan 2012

Hi Everyone,

Thank you for all of your kind words. I have recently spoke with someone from Vanderbilt Ingram Cancer Institute. I have an appointment at Vanderbilt Ingram Cancer Institute with an oncologist that specializes in Renal Cell Carcinoma on Jan. 23 at 1pm. My mom and I are trying our best to research this type of cancer. However, there is little research that has been done on RCC translocation XP11. My mom did speak with an oncologist at City of Hope and he read my pathology report and called her. He stated he felt very good that I was being seen at Vanderbilt by an oncologist. he also stated I needed to ask them to preform an MRI on my brain, CT scan of my lungs and a bone scan. he also told my mom that he prefered CT scans over PET scans. I am still very weak feeling all of the time. I have been fighting a cold for over a week. But, where they did my surgery I feel like there is a big lump under my rib cage when I sit up. But, I am trying my best to keep a positive attitude. However, I have my days where I just get down. I'm sure it is normal. But, before I became sick I had energy and was always on the go. But, since Oct/Nov of 2011 I have no energy and just don't feel like I normally do and it is frustrating. I have to take naps during the day because I get so exhausted. I do not understand why I do not have energy and I get exhausted so easily. But, I want to Thank everyone here I am glad to know their are other people here that have delt with the same diagnoses as I have been diagnosed. I look forward to talking with everyone. I feel if I can help someone else going through this then I have done what I was put on this earth to do. God Bless everyone!!

Blessed Be,
Andrea

Mookies Mom
Posts: 13
Joined: Jan 2010

Andrea,

First of all, you are in my prayers. Secondly, I am so happy that you have found someone that specializes in RCC. It is a very rare subtype that rarely shows up in adults. Travel can be very tough on a person recovering and dealing with side effects from drug treatments, but if nothing else your oncologist should be willing to consult with other phyicians that have had some experience with it. My husband's oncologist would do follow up calls with the Cleveland Clinic, MD Anderson, & Sloan. I agree with the other person that you should be a few more scans done including a bone scan, brain scan, and a scan of the abdomen that would cover the lungs and liver. Those are the most likely places that this subtype could mestatisize. My husband was diagnosed in January 2010, had his kidney removed in February 2010 with reports that they got everything they could see, but by March it had already spread to his spine. We got to see the January bone scan held up next to the March one. In January there was nothing, but in March there was already a 3 cm tumor. I realize that everyone is different, but my husband had the most luck with Sutent. There were also a few studies that showed that it was the best first line drug treatment for this subtype. My husband was on it almost a year before his body started becoming resistant to it. During that time the mets were shrinking and he was able to work full time even with the annoying side effects.
You mentioned that you had reoccuring issues with kidney stones. In that case, have you had many previous scans of your kidneys? This subtype is usually seen in children but when it does show up in adults, they tend to be younger (30's & 40's). I've even heard a theory that with this subtype, it might be present since childhood but doesn't get aggressive until the individual reaches adulthood. I'm just curious if for you this is something that just popped up.
Again my prayers are with you and good luck on this journey.

-Colleen

ADean70
Posts: 8
Joined: Jan 2012

Hi Colleen,

I am needing to know some information if you could help. I have had several CAT scans due to the oncologist at Vanderbilt testing periodically due to the rare cancer XP11. I just had another series done last Tuesday 5/8/11 and the Dr told me that I had several things but, is sending me to a GI dr due to my issues with my stomach that started when I first became sick. I am getting very frustrated with my Dr. He does not explain the CT scans and areas that have came up. I had a knot come up on my stomach about a month ago and he thought it was a small hernia. Well, on the CT scan it shows as a mass so, he is sending me to a GI Dr for an upper and lower GI scope. However, there are several other areas he said he is not concerned with but, the radiologist states they need to be followed up and watched. I have listed below what was found. If you could please help me understand these it would be greatly appreciated. Of course none of the cancer Drs at Vanderbilt have ever heard of the type of cancer I have and of course my blod work is crazy also. I do not have any Basophils and my Red Blood Width Distribution is off. I am just getting frustrated because I am going to beat this but, I want to know if what they found is anything I need to see another Oncologist. My Dr acts like everything is good and I am clear. However, on my other CT scans it actually states no metastis. However, on the last one that 3 radiologist signed off on not just one it does not state that wording at all. Any of your help or anyone else would be greatly appreciated.

Impression:

1. Postsurgical changes of partial left nephrectomy with continued decrease in size of the fluid collection along the resection margin at the upper pole the left kidney consistent with a seroma.
2. Four mm noncalcified right lower lobe pulmonary nodule is unchanged dating back to prior chest CT of 1/23/12. Continued attention is recommended on followup exams.
3. Scattered sclerotic foci within the pelvis in the left sixth rib are nonspecific and may represent bone islands. However continued attention is recommended on followup exams.
4. Probable right renal cysts and probable hepatic lipoma.
5. Postsurgical changes of cholecystectomy, appendectomy and hysterectomy.

The spleen, pancreas, and adrenal glands enhance normally. An 8 mm low-attenuation lesion in the dome of the liver is unchanged dating back to 1/23/12 and likely represents a tiny lipoma. The patient has had prior cholecystectomy.

Thoracic spine: Lower cervical spine hardware partially imaged. A benign vertebral hemangioma in the T1 vertebral body was present on prior CT cervical spine 6/24/2011. Smaller hemangiomas in T4, right facet region T9 and vertebral body of T12. Alignment and vertebral body heights are normal. A minimal left central disc protrusion is present at T6-7 without significant impression on the thecal sac. A small nerve root sleeve cyst is present on the right at T11-12. These are usually incidental. The cord appears normal. A single prominent vessel along the dorsal surface of the cord is within acceptable limits and there are no abnormal flow voids on T2-weighted imaging.

Lumbosacral spine: Alignment and vertebral body heights are normal. There are small Schmorl's nodes at multiple levels. The conus is normal and terminates at the lower L1 level. Mild to moderate facet joint hypertrophy present from L3-4 through L5-S1 with mild associated enhancement around the right L4-5 facet. At L5-S1 there is a very small right foraminal disc protrusion with overall on the slight lateral recess narrowing..

Thank you,
Andrea Dean

Mookies Mom
Posts: 13
Joined: Jan 2010

My husband, too, had stomach issue but initially it seemed to be due to side effects of all of the counter actions of his medication. He did eventually have to have a G-tube and then a J-tube put in but that was not until further down the road.
Unfortunately, I am no expert in CT scans and the information you have provided seems to be very specific and very techinical. How often are you receiving scans - every 3 or 6 months? I do remember with my husband early on that he had nodules on his lungs but when they explained to us we were told that this is normal depending on where you live or if a person as had infections or illnesses during the course of their lives and in that case sometimes almost like a bruise if left behind. My husband had a severe case of pneumonia as a child, so the nodules were attributed to that. He, too, had a lesion on his liver that remained unchanged for the longest time and was considered benign. We were told repeatedly that they are looking for changes. So my very uneducated guess would be for the items you listed above, the radiologists are looking for changes in comparison to previous scans. By mentioning all of the items above they are bringing attention to the areas that should be compared and kept under close watch.
Has your doctor consulted with any other physicians that have had patients with Xp11.2? Or it might be worthwhile to consult with one yourself. If you have any doubt in your physicians plan of action or feel like things might be overlooked or missed, then I really think you should consider if this is the right oncologist for you. There are so many things in life that can get a person all worked up to take action that aren't life or death, but this really is life or death. Go with your gut. You know you better than anyone. Sorry I couldn't be more help. Sending up prayers of healing for you.
-Colleen

Mintenn
Posts: 1
Joined: Jun 2012

Hi Andrea,

I am a 32-year old woman, recently diagnosed with Translocation-type RCC. I am in Nashville as well and am seeing Dr. Puzanov at VICC. I am really struggling to accept my diagnosis and all the uncertainty that goes with it. I had a partial nephrectomy to remove my 4 cm tumor in April. The tumor was caught incidentally to a CT scan at the ER -- I was actually having pain on the other side of my flank and while looking for a kidney stone, they found this mass in my other kidney. Gratefully, it was caught early and there does not appear to be any lymph node involvement. I am on a plan for CT scans every 6 months to check for recurrence. It is hard to accept this reality -- I know I am lucky it was caught early but I feel like we are just waiting for the other shoe to drop. My husband and I have a 3.5 year-old son. I am curious if we are seeing the same oncologist. Do you attend any of the local support groups? He is urging me to go but I haven't yet.

Colleen,

I can't imagine going through what you have. My heart completely breaks for you and your children. This diagnosis is a cruel one. I am so glad your husband felt the peace of that better place. Your words on this board have been so helpful-- there is so little information about this disease that every bit helps.

- MH

ADean70
Posts: 8
Joined: Jan 2012

Hi mh,

Welcome to the club. It is very stressful however you must stay as positive as possible. I see Dr Sosaman at vicc. However they are not experienced with rcc translocation xp 11. I have contacted cancer treatment centers of America. They have treated this type of cancer. I am waiting for them to call me back with more information. I feel bad all the time. I get sick easy. There is very little information. However I have been told that the best Dr for this type is one that has seen this type. Vanderbilt has never seen this type of cancer.

ADean70
Posts: 8
Joined: Jan 2012

Thank you for your prayers. I have reached out to cancer treatment centers of America. They have seen this type of cancer. I am awaiting a call back.

Blessed be,
Andrea

ADean70
Posts: 8
Joined: Jan 2012

Thank you for your prayers. I have reached out to cancer treatment centers of America. They have seen this type of cancer. I am awaiting a call back.

Blessed be,
Andrea

ADean70
Posts: 8
Joined: Jan 2012

Hi Everyone,

I had my appt at Vanderbilt Ingram Cancer Center with an oncologist that specializes in RCC. He did blood work, urine and a CT scan w/contrast on my lungs, abdomen and pelvis. He stated that he does not like to order bone scans or MRI on the brain. The bone scan he stated is not as good as a CT scan and an MRI could open up to many other problems that are not really problems. My appt was on 1/23. I am very tender under my left rib cage I feel like my kidney is having spasms off and on. I am still very fatigued with activity and have to take naps. I ended up in the ER at Vanderbilt on 1/24 and had a severe kidney infection and my blood pressure was very low. I was in the hospital for 5 days had 2 IV's in my arms and 2 different antibiotics. I'm back home and I thought I would be over this but, they stated my blood count is low and of course my blood pressure. I just wish I had answers of when I can return to my normal life. I did have my oncologist set up appts for me with a urologist and internal medicine Dr at Vanderbilt. I was suppose to have an appt with my oncologist today to go over my results. However, they called and had to reschedule. I want to Thank Everyone again for your prayers and encouragement.

Blessed Be,
Andrea

Jaxbran
Posts: 1
Joined: Feb 2013

Hi all I was  diagnosed in May 2012 when I had large amounts of blood in urine. 2 days before I graduated nursing school and while my husband was deployed overseas, I got the news that I had a 5 x5 x5 cm mass on left kidney with extensive retroperitoneal lymph node adenopathy. I was scheduled for a lap surgery but surgeon had to cut me open bc the lymph node involvment was extensive. It was all attached to my aorta in four diff places. It was not in my bones, liver, brain, lungs, or any other major organ. I went to MD Anderson 2 months after surgery and was told I didnt qualify for a clinical trial bc it was contained. I was told there was no evidence of disease at this time so we watch and wait. I returned to my local oncologist who did scans in sep 12 and it showedI had enlarged retrocrural lymph nodes and a spot in lung. I also had granulomas on lungs but they were calcified and not cancer. My local oncologist said they were not enlarged enough to be considered cancer. So I went back in Nov 13 and had another scan. This showed the retrocrural lymph nodes had gotten slightly laregr but not much which he said could be due to slicing of ct scan. Also the spot in lung resolved on its own. Since I wasnt taking medication I  started changing my diet and taking supplements to try and beat it naturally. During all of this we got orders from Air Force to move closer to my family bc dr said I had a year to live roughly. I just had a recent scan and now this dr and radiologist said I had enlarged pelvic and abdominal lymph nodes and stil large retrocrural lymph nodes. However I also have the flu. DIdnt know it yesterday when I went to have scans but started feeling bad and running fever last night. SO I know when I go to see him Monday he will want me to take medications. I dont want to but I am only 36 years old female with 2 kiddos ages 10 and 5. I dont understand where this spreads first? I dont understand why it hasnt spread rapidly bc i was stage 4 grade 4. My path report stated it was tested for the TEF3 protein and it came back positive. I guess what I want to know is does the meds really and truly work? Bc I dont see where it has really helped anyone except prolong the inevitable. I am scared, fearful for my kids, and I am mad. any help with any info would be great. I am so sorry anyone has to go through this. Gpd Bless!

NanoSecond's picture
NanoSecond
Posts: 515
Joined: Oct 2012

Hi Jaxbran,

I am sure many others will join me in welcoming you into "the club we never applied for admission to".  Like you, I found I had a renal cancer due to seeing blood in my urine.  That was back in April 2010. My tumor was the "size of a grapefruit" (11cm) and so my entire left kidney had to be removed.  I was lucky in that the tumor was fully encapsulated in the kidney and there was no sign of spread. So I was then deemed "cancer free" (more accurately, NvED = No visible Evidence of Disease). From that point on I underwent routine CT Scans every 4 months.  That introduced me to the next mandatory membership ritual around here, called "scanxiety".  It was bad enough dealing with that inital shocker back in 2010... :)

I was NvED until this past July when mets (metastases) were discovered on my sacrum (base of my spine) and left femur (thigh).

Here are some things I can tell you: 1) If you came down with any cold, flu, or other virus a day or so after your CT scan you should definitely expect that some lymph nodes will show up as enlarged.  This happened to me - even though at the time of the scan I had no symptoms and thought I was "healthy" - regardless my lymph system was already fighting one of those quick 24-hour stomach bugs and I did not know it until a day later.  The lymph nodes around my intestines were all enlarged because of it.  On my next scan 4 months later they were back to normal and so was I.  Well, as "normal" as one can be with this new "gift" inside me.

2) The meds absolutely do work and they will certainly work for you. For example, I take a combination of Sutent and Xgeva because I only have bone mets to deal with.  There are lots of options out there and more are being added almost every day. No doubt your oncologist will suggest the proper medication(s) for you.

3) Like you I was (am) very concerned about any side effects with these drugs. After all, if you are put on a TKI like Sutent, the main strategy is to prolong your life (and it wil). However, you have to take these medications from now on.  So, like you, I also decided to change my diet and take certain supplements. However, I also tried to do this as "scientifically" as possible.  And, so far, my approach is working far beyond my (and my oncologists) wildest expectations.  Not only have I shown "dramatic" response (a quote from my bone cancer specialist) - with all my mets now showing only new bone growth (and no new mets) - I also have had NO significant side effects to taking the "dreaded" drug Sutent.  It is "dreaded" by many because of its potential side effects.

I have prepared a 45-page .pdf file that explains the science and rationale behind what I have been doing for over 6 months now.  I am happy to share it with you (or anyone else) if you email me at: n.feldman@videopost.com

Much of my approach was initially based on the book, "Life Over Cancer" by Dr. Keith I. Block.  I also have consulted with him and his associates on occasion.

Finally, it is quite natural to be scared. But in time and with the additional knowledge that you will acquire (especially from the fine folks here and elsewhere), the more you will realize that you can - and will - turn this into a chronic - not lethal - disease.

Best wishes,

 

-NanoSecond (Neil)

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Hi Jax,

My father-in-law was diagnosed with RCC about 13 years ago, at that time there was nothing they could do for him, it was all about keeping him comfortable for the limited time he had left.  That has all changed today as there are many new drugs and therapies showing promise against RCC.  I lost my left kidney to a much smaller tumor than yours over 3 years ago and fortunately no further treatment has been required, but it is comforting to know that if I ever need it I'll have options and there are even more in development and trials.  Nano has provided great advice regarding Sutent and you'll find many success stories here from others on different drugs and in different trials, my advice is to spend time reading and learning from their experiences, it will give your spirits a lift and help you maintain a positive attitude going forward.  You have many weapons in your arsenal, so ATTACK WITH EXTREME PREJUDICE and remember what Yogi Berra said "It ain't over till its over!"  The fat lady has been on a strict diet around here for quite some time and she can hardly whisper anymore, let alone sing.  You are going to be fine.

Good luck and Godspeed,

Gary

kathyoasis
Posts: 10
Joined: Mar 2013

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

NAD
Posts: 6
Joined: Oct 2010

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 

 

 

 

 

 

 

 

 

 

MandyAndy
Posts: 1
Joined: Apr 2013

My son had a seemingly routine ultrasound 3 weeks before his first birthday, looking at a possible dual collection system on his left kidney. The U/S showed nothing of the sort, but while looking at the right kidney a 2cm mass was found. An early assumption was a Wilms tumour (childhood kidney cancer) with a known chemo/surgery protocol. Due to my sons age (extremely young to have kidney cancer) a biopsy was taken to confirm diagnosis and to check it wasn't just a benign mass. 

 
Two CTs and a biopsy later the unheard of was mentioned - RCC. Our pathologists, paediatric oncologists, even the members of a global peadeatric oncology group our specialist is part of - NOONE has seen a case in someone this young. He was totally asymptomatic, this was a totally accidental incidental finding. The upside was we saved him having a course of chemo (which would have done nothing to reduce the tumour). 
 
We were hopeful that finding it so early would mean it hasn't breached the kidney capsule wall, but we found out last week it was in one of the four lymph nodes they removed and had breached the kidney wall into the fat near the liver. The surgeons are happy the margins of the resected tumour show no cells, meaning they're hopeful they removed it all. However with almost no cases a year under 8 years old (and nothing ever recorded of an 11 1/2 month old baby having RCC) it's all guesswork...
 
He had his first birthday in hospital 2 weeks ago after having his right kidney, adrenal gland and 4 lymph nodes removed. We'll have 3 monthly CT scans for the next 6-12 months then alternate MRI and CT scans (to reduce radiation exposure). I've been told this RCC behaves much differently than the adult form, but don't know what that means to adults who get it...??
 
Incidentally my husband has Crohn's disease... I think someone else mentioned a Crohns family member?
 
We are freaking out as our baby has been given 5 year survival rates of 70% for his stage 3 RCC xp11.2. I know they are (apparently) good odds for cancer, but not when you're wondering if your baby will make it to the start of school...
 
Anyway, its good to find people also going through this crappy diagnosis. Membership to this club is so sucky but I'm glad to have people around!
 
Cheers,
Marnie
(Melbourne, Australia)
kathyoasis
Posts: 10
Joined: Mar 2013

Hi, marnie, I sent you a message.

Katlily
Posts: 1
Joined: Apr 2013

It's nice to finally see a thread regarding this specific type of kidney cancer. I am 27 yrs. old who had partial nephrectomy last yr. like almost everyone in this thread, the tumor was accidentally found when i had an ultrasound complaining of abdominal pain. I went for a physically and mentioned the episode to my pcp. After the us, report came back to be an angiomyolipoma, a benign type if cyst. But radiologist wanted an mri to confirm. With that said, I pursued the mri just for the sake of knowing. Then mri showed that it is a solid mass, without a characteristic of a renal carcinoma. So i was like, ok what doi need to do next. That's the time that my pcp pushed me to see a urologist. During my initial visit, he told me upfront that by the look of the mass he is 99% sure its cancer. With that said, we started talking about surgery. No metastasis on lymph nodes or lungs at that time. 5cm tumor removed with negative margins on 8/27/12. Tho it was contained, the tumor was sent to NIH for further investigation which confirmed the translocation cell. last ct i had was 12/2012 with borderline enlarged lymph nodes, my oncologist nothing to worry but need to keep an eye in. With god's blessing, he decided to bless us another baby. Im currently 18 weeks pregnant, with the hope that i have more years to spend with my kids. since surgery, my energy was not the same. im a full time clinical nurse thats on my feet 8 hours per day. I decided to go back to work just a month after my surgery as i dont want to deal with anxiety and depression, i know these emotions wont take me anywhere. I feel like my destiny is playing with me. its very hard to accept the fact about cancer, specially at a very young age. we know that life has a lot more to offer us. I always tell my self everymorning that the kidney cancer incident was just a glitch and is not the reason to give up fighting my life to be happy and live for my family. i got tired of asking why me, instead what can i do to make my loved ones happy for today. Im hoping my oncologist will approve to atleast let me get an mri. She was worried about the fetus being exposed to radiation and all that. hope to hear more from this thread.

katrina,

virginia,usa

NAD
Posts: 6
Joined: Oct 2010

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.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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
Posts: 6
Joined: Oct 2010

Thank you will do .

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

kathyoasis
Posts: 10
Joined: Mar 2013

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

ADean70
Posts: 8
Joined: Jan 2012

Hi NAD,

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

NewDay's picture
NewDay
Posts: 170
Joined: May 2012

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

ajens2528's picture
ajens2528
Posts: 10
Joined: Apr 2013

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
Posts: 24
Joined: Dec 2012

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.

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