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Collecting Duct Carcinoma

Wendy St-O
Posts: 2
Joined: Aug 2015

Hi there.  I wish I had properly learned how to use this network when my husband was sick.  He was diagnosed with kidney cancer in April 2015.  Stage IV.  It was very, very bad.  After his nephrectomy he was told "Oops.  We were wrong.  Its not kidney cancer, its actually Collecting Duct Carcinoma, which is worse."  At that moment in July he was told he could die within a month.  I spent the next several months researching and juicing and doing anything I could for this strong, brave man with whom I share three children.  I found very little information on CDC, and absolutely zero stories with happy endings.  Sadly, my story and Ben's did not have a happy ending either.  After suffering in pain for 9 months he died in January 2016 and life has been a nightmare ever since.  Here is my question .... is there anyone out there who has better information about treatment for CDC that may have actually put a patient into remission or even allowed them to live a reasonably normal life with perhaps even an unknown life expectancy?  I really want to find someone who survived or is surviving this disease, because I have three kids to consider in the future and if there is any genetic component, I want to be ready.

Any info would be helpful.  Thanks.

stub1969's picture
stub1969
Posts: 864
Joined: Jul 2016

Wendy--I'm so sorry for your loss.  I wish I could help you with your question and your search for a person that has survived CDC.  When I found out about my mass and started to do some research, I ran across some information about CDC.  Basically it said what you already know about the agressiveness of the disease and that there was not much in the way of treatment for it.  Did the doctors that worked with you and your husband offer any suggestions about the genetic component that you are concerned with?  I'd encourage you to reach out to the National Institute of Health.  They may be able to help you get more information with CDC and offer some type of support that can help you.

Stub

lobbyist0724's picture
lobbyist0724
Posts: 417
Joined: Sep 2016

Hi Wendy, I am very sorry for your loss, please stay strong. Is there any reason you are so concern about about the genetic factor of the CDC. If so, I would suggest that you should talk to the doctor and perhaps have the children to do the genetic test in the future just to rule out that possibility. I don't know much about CDC but in general, only a small portion of kidney cancer patients resulted from genetic factor.

Take care

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