Mayo Clinic Connect
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?
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.
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?
Liked by Colleen Young, Connect Director
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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?
Yes it will be my first visit with and oncologist. I am hoping he will give me a lot of answers
Liked by Rosemary, Volunteer Mentor, Teresa, Volunteer Mentor
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?
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”
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?
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?
@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.
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.
I hope that this is helpful to you.
Liked by Teresa, Volunteer Mentor
Thank you SO much. I have three weeks before my next appt.
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.
Liked by Rosemary, Volunteer Mentor
@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
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.
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