New to CSN on (Kidney) Collecting Duct Carcinoma

Texas-SAM Member Posts: 1

I have seen several of the same people on both the Cancer Survivors Network and Kidney Cancer Association blogs.  I'm throwing myself in concerning my husband.  He was diagnosed with kidney cancer in November 2015.  After a kidney biopsy it was more specifically determined to be a collecting duct carcinoma with metastases to lymph system.  In December we went to MD Anderson, and in January Dr. Wood performed a radical nephrectomy, taking the adrenal gland and 13 lymph nodes (4 were positive for cancer).  In February the CT scan in Houston was good, and one recently done was good (at Texas Oncology, locally).  Due to a low GFR, there wasn't any IV contrast given.  Now 6 months post-op he is still fatigued and nauseous.  After last week's good news, I am hoping some of you out there can send some optimism to keep us headed in the right direction mentally!  Just the night before the last scan result, my husband said he thought the cancer had spread to his liver because he looked on the internet and was convinced he had all the symptoms.  Last month due to panting, he thought cancer was in his lungs. I empathize with his every ache and pain, and fear recurrence too.  I had cancer 5 years ago, but the doom and gloom for both of us very real given the long-term prognosis for high-grade unclassified RCC.  Day after tomorrow he plans to do a little riding on the motorcycle riding and I am hopefully that he can break through that cloud of despair and enjoy the day.  I would welcome some encouragement from those that have "been there, done that."


  • hardo718
    hardo718 Member Posts: 853 Member
    edited June 2016 #2
    Welcome Sam

    My advice would be to stay off the internet searches.  They definitely will make you crazy.  The information out there is pretty outdated and many here will tell you, they had very poor prognosis' and many years later are still here to witness this to you.  You'll be hearing from them soon, I'm sure.  I was fortunate in that mine was caught very early and therefore I can't identify personally, but I will say that the fear still creeps in with those aches and pains.

    There are also lots of bike riders on this forum so he'll have things in common there too should he choose to join & connect with them.

    In the meantime, I'll add you both to my daily prayers for those on this site.


  • todd121
    todd121 Member Posts: 1,448 Member
    Fatigue and Nausea

    I had this a lot for a couple of years after my nephrectomy. I kept thinking it meant my cancer was back. Evidently it didn't. I'm not sure what caused it. It took a good 2 years or maybe 3 to subside. The fatigue might just be depression, weight, lack of exercise. Excess weight can cause nausea (GI problems can cause this).

    I just want you to know that I had these symptoms for quite a while after my nephrectomy and it didn't indicate cancer or no cancer. It scared me too. I also had panic attacks when I'd develop a symptom like a lung thing (also called a chest cold, lol), headache, side ache, sore toe, you name it.

    The first year I had some pretty bad symptoms. I thought it was the drug I was taking (everolimus), but that turned out to be a placebo, so it wasn't that. My theory is now that it just takes the body a long time to get used to one kidney. I think exercise, drinking more water, and eating healthy helps.

    Hopefully this might help.