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Collecting Duct Carcinoma

Posts: 1
Joined: Dec 2009

Hi all, would like to know if there is anyone out there who has had any experience with Collecting duct carcinoma a rare kidney cancer. My younger sister Ngaio Rose Marie was diagnosed with it in Nov 2009 and by all reports the outlook is not good. She may be stage 3 or 4 am not sure, she has been in hospital for over a month and has just started chemo. The doctors decided against removing the kidney as they would not be able to remove all the cancer as it has spread. Any light you can shed on this disease would be greatly appreciated. My sister is 25 yrs old turning 26 19th Jan 2010. I know we may be clutching at straws but we love our sister dearly and as a family have aggreed to not give up hope and will be fighting to what ever end is dealt to us. This is my way of contributing to my sisters plight. Any help or information given again is greatly appreciated.

Kindest Rgds
Sydney Australia

Posts: 2
Joined: Feb 2010


My husband had mRCC at age 24. He was diagnosed with HLRCC, a genetic form of kidney cancer that is kinda like papillary and clear cell mixed together. Well thats what we were told. He did have a partial response to sutent but it stopped working after 3 months. He did have a nephrectomy and they even removed about 30 lymph nodes from the area which were all full of cancer. Did the doctors say if and when they planned to take the kidney out? What chemo did they start her on? Did she get a second opinion at all? Theres another forum that might be very helpful for you all. You should take a look. kidney-onc@listserv.acor.org please keep us posted.


Posts: 3
Joined: Jul 2010

Hi Benj,
I hope your sister is surviving as there is always hope. I had a kidney cancer removed in January which was found afterwards to be Collecting Duct. Afterwards it looked as if was spreading to the lungs as some nodules had grown, but the latest CT scan has shown they have shrunk. It looks as if my body is fighting it off now the primary cancer has gone. I am a lot older than your sister but I hope still to have a lot more years. I also have benign skin lumps piloleiomyoma which I discover is a marker for HLRCC or Reed's Syndrome.
My good wishes are with you
Graham -UK
I am still around 2 years later without needing further treatment.
The world-wide support group for HLRCC is the HLRCC Family Alliance www.hlrccinfo.org
Graham Lovitt HLRCCFA Vice Chair

jamies wife
Posts: 2
Joined: Sep 2010

My husband passed away 2 yrs. ago from this horrible cancer. Info is hard to find. He was a patient at Duke hospital in Durham,N.C. He had a nephrectomy and 2 rounds of chemo. His tumor was 7 c.m and had already spread to his vena cava vein. If you wish to email me i could send you his chemo combinations. With this cancer knowledge is power. I WILL SAY A PRAYER FOR YOUR ENTIRE FAMILY!!!

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