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Stage IV Clear Cell Carcinoma with Sarcomatoid and Rhabdoid Features

KJones1969
Posts: 158
Joined: Mar 2012

My husband had a 12cm mass and his kidney removed last week. We haven't been back for follow up yet but saw on the discharge summary where it is a grade 4 with 30% Sarcomatoid features and 40% Rhabdoid features. Can anyone tell me a little bit about what this means? Thanks

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

Hello,
I don't know anything about Sarcomatoid and Rhabdoid features, but Stage 4 means:
-- The cancer has grown through the fibrous tissue outside of the kidney. It may or may not have spread to one or more lymph nodes.
-- The cancer has spread to other parts of the body. It can be any size, and may have grown into the tissue outside the kidney.
You said Grade 4 but I'm not sure if you meant to say Stage 4. Grade 4 would indicate that it is a faster growing cancer than Grades 1-3 and more likely to spread.
Hope all works out for your husband and you.
Regards
Mike
p.s. I'm sorry if I sound so matter of fact. Sometimes one forgets about the human aspect of all this. I empathize and sympathize with what you are going through.

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

K, how old is your Husband and how is his general health (smoker, overweight, blood pressure, fitness, other medical conditions)?

Stages and grades of cancer both run from 0 (no disease) through 1 to 4 (the worst level). Stage means size of tumour and how far it has spread; grade is about the cellular character of the tumour and relates to aggressiveness and the possibility of spreading to other parts of the body.

A 12cm tumour is fairly large so he may be stage 4 (with luck only stage 3) as well as grade 4. The sarcomatoid and rhabdoid features would account for his being grade 4 and are not very good news. His cancer will have become more aggressive and he will need careful monitoring from now on to ensure that any further problems are dealt with promptly. Try to get the pathology report soon and have your medical advisers explain everything thoroughly in words you can understand and then make sure that every care is taken to see to it that he is treated in the way recommended.

KJones1969
Posts: 158
Joined: Mar 2012

Hello Texas,

My husband is 63 and was overweight with high blood pressure. He has lost about 80lbs since last June with 50 of that being lost since December.

Yes it is classified as Stage IV. We get the pathology next Friday and I am scared but want to know asap so we know how to move forward. He just came home from Wednesday from his radical nephroectomy at Duke. He is very weak and tired from that however I am praying for energy for him to move forward on whatever treatment that is recommended as soon as they can.

KJones1969
Posts: 158
Joined: Mar 2012

Hello Texas,

My husband is 63 and was overweight with high blood pressure. He has lost about 80lbs since last June with 50 of that being lost since December.

Yes it is classified as Stage IV. We get the pathology next Friday and I am scared but want to know asap so we know how to move forward. He just came home from Wednesday from his radical nephroectomy at Duke. He is very weak and tired from that however I am praying for energy for him to move forward on whatever treatment that is recommended as soon as they can.

KJones1969
Posts: 158
Joined: Mar 2012

He has Stage 4, Grade 4. We get the full pathology report next Friday. They told us his tumor was the size of a football which scared us both to death. He is getting a little stronger day by day so he can have the strength to fight what lies ahead.

Thank you for your empathy and sympathy.

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

I'm sorry to hear about your husband's illness. My husband too was recently diagnosed Stage IV, Grade IV, Clear Cell w/sarcomatoid features after having a radical nephrectomy. Just want you to know I feel your pain, but you're in the right place to learn. People on this board know kidney cancer, better than most doctors snd take the time to explain conditions most of us hsve never heard of and wish we still hadn't. Being a member of this board will help you feel stronger and more in control. Trust me on that.

KJones1969
Posts: 158
Joined: Mar 2012

Thank you Alice. It sounds like we are in the same boat. My husband had is radical nephrectomy last Thursday and spent 7 days at Duke because of the size of it and he got sick Sunday and Monday. I found this board by mistake but oh how glad I am that I did. Thank you for feeling my pain as I do yours. This is the hardest thing we have ever been through and sometimes I wonder will we get through it but I know we will. He is strong and is a fighter and has to be okay.

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

Hi KJones,
12 cm is a large tumor but I don't think it's the size of a football. Perhaps whoever told you that is not a football fan. In any case, here is a video of somebody who did have a kidney cancer the size of a football. I hope it will encourage you.

http://www.facebook.com/video/video.php?v=430784719477

Regards,
Mike

KJones1969
Posts: 158
Joined: Mar 2012

The doctor came out and told us the tumor had attached to the kidney and was the size of a football. He goes to Duke and I have all confidence in the doctors there. I did watch this video and it is encouraging. We go back on Friday for a full pathology report and see what options we have for his lungs.

Thanks Mike

KJones1969
Posts: 158
Joined: Mar 2012

The doctor came out and told us the tumor had attached to the kidney and was the size of a football. He goes to Duke and I have all confidence in the doctors there. I did watch this video and it is encouraging. We go back on Friday for a full pathology report and see what options we have for his lungs.

Thanks Mike

Machelle03's picture
Machelle03
Posts: 27
Joined: Jul 2012

Hello K... my husband was diagnosed with kidney cancer in November and we were directed to Duke for a radical. He too had a tumor the size of a football one month later when they took it out. Was a grapefruit size on the initial CT scan in November. If I had to guess your surgeon is Dr. Brant Inman and the Oncologist will be Dr. Dan George. They are both awesome. Dr. Inman has alot of energy and is one of the top surgeons in the country. Bed side manner is lacking....but that is ok. What matters is that he gets the job done. There will be alot of residents watching and taking care. Dr. George is great....we may see you in the waiting room. We go every 6 weeks. First six for blood work the naxt 6 for CT scan. My husband is on Sutent and doing well. The nodules in his lungs shrunk by 2/3 on the first scan. The last one he had there was no shrinkage but all his numbers were on target as far as blood count, liver and remaining kidney.

I wish you well fellow Duke participant. They have an awesome new cancer clinic.

Machelle

Machelle03's picture
Machelle03
Posts: 27
Joined: Jul 2012

Hello K... my husband was diagnosed with kidney cancer in November and we were directed to Duke for a radical. He too had a tumor the size of a football one month later when they took it out. Was a grapefruit size on the initial CT scan in November. If I had to guess your surgeon is Dr. Brant Inman and the Oncologist will be Dr. Dan George. They are both awesome. Dr. Inman has alot of energy and is one of the top surgeons in the country. Bed side manner is lacking....but that is ok. What matters is that he gets the job done. There will be alot of residents watching and taking care. Dr. George is great....we may see you in the waiting room. We go every 6 weeks. First six for blood work the naxt 6 for CT scan. My husband is on Sutent and doing well. The nodules in his lungs shrunk by 2/3 on the first scan. The last one he had there was no shrinkage but all his numbers were on target as far as blood count, liver and remaining kidney.

I wish you well fellow Duke participant. They have an awesome new cancer clinic.

Machelle

Machelle03's picture
Machelle03
Posts: 27
Joined: Jul 2012

Hello K... my husband was diagnosed with kidney cancer in November and we were directed to Duke for a radical. He too had a tumor the size of a football one month later when they took it out. Was a grapefruit size on the initial CT scan in November. If I had to guess your surgeon is Dr. Brant Inman and the Oncologist will be Dr. Dan George. They are both awesome. Dr. Inman has alot of energy and is one of the top surgeons in the country. Bed side manner is lacking....but that is ok. What matters is that he gets the job done. There will be alot of residents watching and taking care. Dr. George is great....we may see you in the waiting room. We go every 6 weeks. First six for blood work the naxt 6 for CT scan. My husband is on Sutent and doing well. The nodules in his lungs shrunk by 2/3 on the first scan. The last one he had there was no shrinkage but all his numbers were on target as far as blood count, liver and remaining kidney.

I wish you well fellow Duke participant. They have an awesome new cancer clinic.

Machelle

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Wow we do have a lot of similar issues to deal with. My husband is 63 also. Another person I like to follow is Chris Battle "The Kidney Cancer Chronicles". Chris too was at Duke I believe before coming to Hopkins (where John, my husband is)and Chris has gone through a lot of different treatments and setbacks but has maintained an upbeat attitude. (http://kidneycancerchronicles.com/) On March 15, when John and I were at Hopkins, waiting to meet with John's Dr. (Dr.Hammers), we met Chris and Dena Battle who were also meeting with Dr. Hammers. They are great people and very extending with offers of numerous types of assistance in getting through this journey. I just enjoy reading their articles. You might want to stop and check out that info too. Please keep me posted as you proceed through this.

KJones1969
Posts: 158
Joined: Mar 2012

Thank you Alice for referring me to them. Do you know why they left Duke and went to Hopkins. I will keep you informed and please do the same with your husband. We go back Friday for his pathology report and to see what options are available to treat his lungs. To be honest with you I am so nervous after reading the discharge summary. Who would of ever thought on Jan. 26th when he went to the hospital the first time that in less than a month our world would have been turned upside down. I am sure you feel the same way. Thank you so much for resonding. I think this helps me deal with this by reading what other people say.

KJones1969
Posts: 158
Joined: Mar 2012

Thank you Alice for referring me to them. Do you know why they left Duke and went to Hopkins. I will keep you informed and please do the same with your husband. We go back Friday for his pathology report and to see what options are available to treat his lungs. To be honest with you I am so nervous after reading the discharge summary. Who would of ever thought on Jan. 26th when he went to the hospital the first time that in less than a month our world would have been turned upside down. I am sure you feel the same way. Thank you so much for resonding. I think this helps me deal with this by reading what other people say.

leyla2210
Posts: 1
Joined: Jul 2012

Hello KJones,

I am new on this site, and read about your husband. I really hope he is now well, and has recuperated after the surgery.
I am writing to you on behalf of my dad,age 64, who was diagnosed with kidney cancer (10 cm. mass) of his left kidney, and is to undergo surgery, open radical nephrectomy, on August 1.
He is extremely worried about the post-operative period. So, I would be so very grateful, if you would drop me a few lines, on how your husband got on the first couple of weeks ? Did he also have an "open"/traditional surgery ? (My dad was told, that the tumor was too large to remove with the kidney, by keyhole surgery). Did he suffer any complications, post surgery ?
As it is, I`m afraid, I don`t know about the stage, but as far, as I`ve read, I take it, that the 10 cm. mass indicates that it is not an early stage. He has also had very sudden symptoms, such as gross haematuria,anemia, vomitting, general weakness and now he actually feels a bulge in his left side..All these symptoms occurred within two months. It seems very scary, that it can happen so fast..

I hope, I am not putting strain on you, by asking all this, and I fully understand, if you don`t write. I wish you and your husband all the best.

Leyla.

ourfriendjohn's picture
ourfriendjohn
Posts: 72
Joined: Jun 2012

Leyla,

I just wanted to give you some encouragement on your dad's surgery tomorrow. I am 59 and had an open right radical nephrectomy in September 2011. Like your dad, my tumor (17.5 cm) was too large for a laparoscopic procedure. Five days in the hospital, and about two weeks of real recouperation. In about six weeks I was almost back to normal and was bycycling, hiking, and having a grand ole time after four to six months. It's a gradual thing. Just stay positive. You have found a wonderful group of friends here who can give you and your dad practical and emotional support. Keep us posted and welcome to the family.

John

KJones1969
Posts: 158
Joined: Mar 2012

Great advice John. Sounds like you have done well after your surgery. What kind of treatment if any did you receive after your surgery? I agree about this support group. A lot of times I don't post or comment but I do read what people say and helps in encouragement for my hubby.

Take care!

Karen

KJones1969
Posts: 158
Joined: Mar 2012

Great advice John. Sounds like you have done well after your surgery. What kind of treatment if any did you receive after your surgery? I agree about this support group. A lot of times I don't post or comment but I do read what people say and helps in encouragement for my hubby.

Take care!

Karen

KJones1969
Posts: 158
Joined: Mar 2012

Hello Leyla,

My husband will be 64 in a few weeks so they are about the same age. He has done as well as can be expected I guess. His was done laproscopic even though it was a 7-8" laproscopic. He did well once he got home, he was in the hospital for 8 days but has gotten along fine since then. Just listen to everything the doctor's tell you because as I have learned they do know best, (well at least most of the time).

Today is the day your Dad is having surgery so I pray everything goes well. My husband has been on Votrient for 3 months now to hopefully help with the 5 spots on his lungs. We go back to Duke on Friday for scans to see how it is working. I did lots of research after his surgery and got acquainted with the 7-8 FDA approved drugs for Renal Oncology. It seems that Votrient has the last side effects and for the most part he has done well. His main thing is he didn't want nausea/diarrhea and THANK GOD none of this has happened.

No strain at all. Please message me and let me know how your Dad is doing. I'll be praying for him.

Karen

ourfriendjohn's picture
ourfriendjohn
Posts: 72
Joined: Jun 2012

Karen,

I am not receiving any treatment at this time. Pelvis and abdominal MRI's and a chest x-ray at six month intervals is all I have. Honestly, I am not really confortable with such a passive approach, but, the urologist seems to think anything else is unnecessary. I have my annual physical with my GP next week and I am going to discuss things with him.

Best wishes to you and your husband.

John

KJones1969
Posts: 158
Joined: Mar 2012

Thanks John and I wish you well.

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