47 yr old hubby has Stage IV ccRCC that spread to lymph nodes in his throat and lung area

MyraC Member Posts: 8
edited January 2017 in Kidney Cancer #1

Hi. In October 2016 my husband went to an urgent care because he had discomfort in his lower back that I assumed were kidney stones.  A CT scan found a 13 cm tumor in his left kidney and several suspicious lymph nodes.  Two weeks later he underwent a radical nephrectomy.  At his post surgery appointment we were told that 27 out of 29 lymph nodes removed were cancerous. The doctors found that his cancer had invaded the lymph nodes in his esophagus and that he also had slightly enlarged lymph nodes near his lungs. He had a brain scan, PET Scan, bone scan and MRI. He recovered incredibly well from his surgery and does not have any pain or symptoms. My husband also has a great attitude about his diagnosis and has a ton of faith that everything will work out. In March he will either undergo IL2 or participate in a clinical trial involving two check point inhibitors and radiation at UT Southwestern in Dallas. His oncologist is optimistic because of my husband's overall health and age and because his two month scans did not reveal the lymph nodes were any larger than before. Even though my hubby is doing great at the moment I'm losing my mind over this because we have a five year old son. I would love to chat with any Stage IV ccRCC survivors 


  • Qt34167
    Qt34167 Member Posts: 41
    edited January 2017 #2
    Keep hoping

    I will keep you family in my prayers.  I also hope the IL2 will be successful.  It is the only thinkg that can put this disease into long remission although the percentages that it works on are low.  I went through three rounds of IL2two years ago which unfortunately was not successfull.  I have been on Sutent for the past 22 months.  You can view my journey by clicking on my picture.

  • grtdane
    grtdane Member Posts: 16
    edited January 2017 #3
    Wow, deju vu!

    Hi Myra, I had my left kidney removed four years ago and just found out I have pulmonary nodes in my lungs and enlarged, necrotic lymph nodes there as well. I get a bronchoscope on Feb. 2 for biopsy. I also am 47, male with a five year old boy. I love that your husband is keeping positive and rocking it! I know its hard not to with a five year old around lol. I will watch the forum for updates and I will update as I go along. Big hugs to you and your family - felt a bit of deju vu when I read your post thinking my wife was posting! 


  • Footstomper
    Footstomper Member Posts: 1,237
    edited January 2017 #4
    Scarey isnt it?

    Four years ago I was diagnosed with RCC with mets to my lungs Stage 4, Grade 4 (big and aggressively spreading). They took the kidney out and I'm still here nearly four years later and I'll tell you I feel good. After my surgery I had IL2 which reduced my tumours by about 1/2. Anyone who has had it will tell you that the treatment is tough but given the chance to do it again we would all take it in a flash.

    I dont want to predict the future, but this is my experience. After IL2 I have worked my way through a menu of treatments finding ones that worked for a while and then switching to another. Then taking some experimental treatments some of which worked some of which didnt.

    This is going to sound stupid, but there has never a better time to be diagnosed with cancer. Not that long ago this disease was a death sentence. It still feels like one when you're told, but I strongly believe that that is not the canse. New treatments are coming online almost weekly: immunotherapy looks particularly hopeful. The day is not far off when this cancer becomes like AIDS, no more a terminal disease but a treatable chronic disease, controlled by drugs. 4 years ahead of your husband I feel optimistic for my future and doubly optimistic for your hubby.

    In the meantime look after yourself, you are probably having stress issues yourself like you have never had before. You are just as important as your husband.

  • donna_lee
    donna_lee Member Posts: 1,023 Member
    Stage IV CC RCC. T2N1M1, and still here

    That was in 2006. It had already mets'd to liver and set of nodes, which were removed.  2007, a single node attached to the duodenum and the IVC was enlarging-had it removed.  2008, same story, only attached at the back of the bifurcation of the aorta in the low pelvis. had it removed.

    Hooray for the magic tests that can see inside and through the body.  Borrow some of his Doctor's optimism and cheer hubby onward.

    Cheers that you both get thru this.  And hugs to all.


  • Dutch1
    Dutch1 Member Posts: 152
    edited January 2017 #6
    I'm also at stage 4, grade 4

    I am in sort of the same spot as your husband.  My tumor was as large as your husband's, with the cancer spreading to the adrenal gland and a bunch of nearby lymph nodes.  That was 4 years ago.  Since the surgery, the cancer has shown up in a couple of areas in my chest.  The new spots are being controlled pretty well with medication and radiation.  To this point, we've been able to live with the disease.  Emotionally, it was especially rough at the start.  I think that's almost universal with us folks.  It gets easier to bear.

    Recent advances have made this a more treatable disease.  The new drugs are great improvements.  Find yourself good doctors who have the right kind of experience.  Think about the role of diet and exercise.  I won't ever know for sure, but I believe that diet has been an important positive factor for me. 

    The folks who have commented ahead of me offer good advice that I'd support totally. 

    Best wishes to both of you.