Undefined Renal Cell Carcinoma with Translocation Xp11.2

garym

ADean70 said:

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

Welcome to the club...
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

garym said:

Welcome to the club...
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

Xp 1.1
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

ADean70 said:

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

You are in my prayers
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

Sm4pack said:

You are in my prayers
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

Update from Newly Diagnosed with RCC translocation XP11
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

ADean70 said:

Update from Newly Diagnosed with RCC translocation XP11
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

Translocation XP11
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

ADean70 said:

Update from Newly Diagnosed with RCC translocation XP11
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

Update from Newly Diagnosed with RCC translocation XP11
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

ADean70

Mookies Mom said:

Translocation XP11
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

Translocation XP 11
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

ADean70 said:

Translocation XP 11
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

Hi Andrea,
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

Mookies Mom said:

Hi Andrea,
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

Newly Diagnosed
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

Mintenn said:

Newly Diagnosed
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

newly diagnosed
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

Mookies Mom said:

Hi Andrea,
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

Hi Colleen
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

Mookies Mom said:

Hi Andrea,
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

Hi Colleen
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

Jaxbran

XP translocational kidney cancer

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

Jaxbran said:

XP translocational kidney cancer

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!

It's going to be OK

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

Jaxbran said:

XP translocational kidney cancer

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!

Welcome to the club...

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

MandyAndy

Infant son with RCC xp11.2

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)

Katlily

Mitfe/translocation renal cell

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

kathyoasis

MandyAndy said:

Infant son with RCC xp11.2

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)

Xp 11.2 translocation rcc

Hi, marnie, I sent you a message.

kathyoasis

Xp11.2 translocation rcc

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

 

Kathy

NAD

Translocation Xp 11.2 in children

Hello again

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

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

 

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

Lets help each other , more research is needed now.