Undefined Renal Cell Carcinoma with Translocation Xp11.2

Mookies Mom
Mookies Mom Member Posts: 13 Member
edited March 2014 in Kidney Cancer #1
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.
«13

Comments

  • momneedsinfo
    momneedsinfo Member Posts: 7 Member
    xp 11.2
    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
    Mookies Mom Member Posts: 13 Member

    xp 11.2
    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!

    Translocation Xp11.2
    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
    lwhitman214 Member Posts: 2
    Xp11.2
    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
    momneedsinfo Member Posts: 7 Member

    Xp11.2
    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

    I don't get back to these
    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!
  • southecare
    southecare Member Posts: 1
    xp 11.2
    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
    rfalls6193 Member Posts: 3
    XP 11.2
    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
  • rfalls6193
    rfalls6193 Member Posts: 3

    xp 11.2
    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.

    xp11.2
    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!!
  • wmarecle2
    wmarecle2 Member Posts: 4

    XP 11.2
    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

    xp 11.2 translocation renal cell carcinoma
    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
    wmarecle2 Member Posts: 4

    XP 11.2
    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

    Scan
    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.
  • wmarecle2
    wmarecle2 Member Posts: 4

    I don't get back to these
    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!

    use MRI
    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!
  • NAD
    NAD Member Posts: 6

    xp 11.2
    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.

    translocation renal cell carcinoma in adolescetns
    `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 .
  • lwhitman214
    lwhitman214 Member Posts: 2

    Xp11.2
    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

    Update
    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!
  • NAD
    NAD Member Posts: 6

    xp 11.2
    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.

    Xp 11.2 in adolescents
    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.
  • Mookies Mom
    Mookies Mom Member Posts: 13 Member

    XP 11.2
    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

    XP 11.2
    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
    lfalls75 Member Posts: 4

    XP 11.2
    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.

    My husband has translocation xp 11.2
    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
    marymint11 Member Posts: 2
    lfalls75 said:

    My husband has translocation xp 11.2
    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.

    HI I AM FROM THE UK.
    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
    Mookies Mom Member Posts: 13 Member
    lfalls75 said:

    My husband has translocation xp 11.2
    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.

    Update
    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
    marymint11 Member Posts: 2

    Update
    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.

    Translocation associated
    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
    Mookies Mom Member Posts: 13 Member

    Translocation associated
    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

    Hi LFalls 75 and
    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
    ADean70 Member Posts: 8

    Hi LFalls 75 and
    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.

    Just Diagnosed with Renal Cell Carcinoma Translocation XP1.1
    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