Share this:
edmom
@edmom

Posts: 1
Joined: Oct 27, 2011

translocation renal cell carcinoma

Posted by @edmom, Oct 27, 2011

My 19 yo daughter just had surgery to remove a mass on her kidney. It was diagnosed as an aggressive type of renal cell carcinoma–a translocation. I am feeling hopeless and helpless. Are there survivors?

REPLY

Dear Edmom,
My wife was diagnosed with renal cell carcinoma that has spread in many places. I hear your pain and fear. There are a few key therapies to look into — but check with your oncology doc: Sutent, Votrient, Terisol … All these are 5 years old — the newest drugs that work.

We are close to choosing a path for us.

My best to you.
Davek

I have had my left kidney removed in March of this year, had renal cell carcinoma. I thought I was going to me alright because they thought they had got it all and a few of my gland also. But six months later they have found a spot on my right lung. I am wait on a doctor visit on Jan 5th. Anyone else with this?

@oldirish1

I have had my left kidney removed in March of this year, had renal cell carcinoma. I thought I was going to me alright because they thought they had got it all and a few of my gland also. But six months later they have found a spot on my right lung. I am wait on a doctor visit on Jan 5th. Anyone else with this?

Jump to this post

Hello @oldirish1 and welcome to Mayo Connect.

We appreciate your post. I’m sorry to hear of your diagnosis of carcinoma that is now in your lung. I can’t imagine how disappointing that must have been for you.

Will the Jan. 5th visit be with an oncologist?

Teresa

@oldirish1

I have had my left kidney removed in March of this year, had renal cell carcinoma. I thought I was going to me alright because they thought they had got it all and a few of my gland also. But six months later they have found a spot on my right lung. I am wait on a doctor visit on Jan 5th. Anyone else with this?

Jump to this post

Yes it will be my first visit with and oncologist. I am hoping he will give me a lot of answers

@oldirish1

I have had my left kidney removed in March of this year, had renal cell carcinoma. I thought I was going to me alright because they thought they had got it all and a few of my gland also. But six months later they have found a spot on my right lung. I am wait on a doctor visit on Jan 5th. Anyone else with this?

Jump to this post

@oldirish1

I’m sure that you will be looking for answers. Most of us at Mayo Connect suggest that before seeing a new doctor you do some research online if possible and then go to the appointment with a list of questions. Have you done much research yet? Here is a link to a Mayo Clinic website that can give you some more information, https://www.mayoclinic.org/diseases-conditions/kidney-cancer/symptoms-causes/syc-20352664 and here is a link to a website for the National Cancer Institute, https://www.cancer.gov/types/kidney/hp/kidney-treatment-pdq,

You mentioned in your first post about the spot on your lung. Has that spot been biopsied yet or will that be done by the oncologist?

Teresa

@oldirish1

I have had my left kidney removed in March of this year, had renal cell carcinoma. I thought I was going to me alright because they thought they had got it all and a few of my gland also. But six months later they have found a spot on my right lung. I am wait on a doctor visit on Jan 5th. Anyone else with this?

Jump to this post

I have done a little research but not much luck with the lung issue. I have had a biopsied and I have the results ” Consistent with metastatic renal cell carcinoma”

@oldirish1

You might research on Google Scholar. It is a more sophisticated search engine, especially for medical matters. A little research might be helpful in preparing for your appointment.

We wish you well. Will you update us after your appointment?

Teresa

@oldirish1

I have had my left kidney removed in March of this year, had renal cell carcinoma. I thought I was going to me alright because they thought they had got it all and a few of my gland also. But six months later they have found a spot on my right lung. I am wait on a doctor visit on Jan 5th. Anyone else with this?

Jump to this post

It is a long wait between appts, when you believe you may have to tackle cancer again. I was diagnosed with Stage III Kidney disease. They took SO MUCH blood from me as they suspect something else. No news before Christmas. Does anyone know if I can live a long time with Stage III Kidney disease?

@oldirish1

I have had my left kidney removed in March of this year, had renal cell carcinoma. I thought I was going to me alright because they thought they had got it all and a few of my gland also. But six months later they have found a spot on my right lung. I am wait on a doctor visit on Jan 5th. Anyone else with this?

Jump to this post

@oregongirl, I agree that the wait between appointments can feel like forever.
Here is information about Chronic Kidney Disease that might serve as a good reference for you.

https://www.mayoclinic.org/diseases-conditions/chronic-kidney-disease/symptoms-causes/syc-20354521

and – I don’t want to alarm you with the title of this link. However there is a chart of the stges of kidney disease that might put things into perspective for you.
https://www.mayoclinic.org/diseases-conditions/end-stage-renal-disease/diagnosis-treatment/drc-20354538

I hope that this is helpful to you.
Rosemary

@oldirish1

I have had my left kidney removed in March of this year, had renal cell carcinoma. I thought I was going to me alright because they thought they had got it all and a few of my gland also. But six months later they have found a spot on my right lung. I am wait on a doctor visit on Jan 5th. Anyone else with this?

Jump to this post

Thank you SO much. I have three weeks before my next appt.

@hopeful33250

@oldirish1

You might research on Google Scholar. It is a more sophisticated search engine, especially for medical matters. A little research might be helpful in preparing for your appointment.

We wish you well. Will you update us after your appointment?

Teresa

Jump to this post

Teresa. I am conflicted. I am struggling with the faith I have in God and just letting myself go and no medication or attempts to “make it better”. I am 75 nearly 76. Attempting to go to a clinic three times a week WILL work for me. The at home would be difficult. Both my son and his wife work long hours. I live in the guest house and I have an extra couch. If I decide to go with the at home, I could hire assistance for the treatments. But, I wonder about the quality of life. Can I still go to church? I had planned to go to Israel again, can I do that? So three weeks from now, I see the doctor. Maybe they made a mistake and I am not ill. I can always pray. I love coming to this site as it allows me to think outside the box. Options from someone who knows.

@hopeful33250

@oldirish1

You might research on Google Scholar. It is a more sophisticated search engine, especially for medical matters. A little research might be helpful in preparing for your appointment.

We wish you well. Will you update us after your appointment?

Teresa

Jump to this post

@oregongirl, I would like to invite you to look at the Kidney Transplant Discussion Group where some members have shared their experiences with dialysis and their decisions. https://connect.mayoclinic.org/discussion/kidney-transplant-1/?pg=1
Rosemary

@hopeful33250

@oldirish1

You might research on Google Scholar. It is a more sophisticated search engine, especially for medical matters. A little research might be helpful in preparing for your appointment.

We wish you well. Will you update us after your appointment?

Teresa

Jump to this post

The at home option gives the flexibility to do the dialysis any time day or night and more than 3 times per week. This evens out the wild swings that people who only receive dialysis 3 times per week endure. What you can or cannot do in your non-dialysis time will only be limited by your other health issues, if any. You are “washing your blood” in these sessions – the same thing a functioning kidney would do.

Please login or register to post a reply.