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CAPNMatt's picture
Posts: 13
Joined: Jul 2012

Hello all. Although this is my first post, I have been aware of CSN and all that we do for each other. Last year, I became a caregiver for my twin sister as she was battling with colon cancer (she was an avid member of CSN). I was able to bring her to my house to take care of her as her cancer went exponential. She passed away in April of last year. It was a life-changing experience for me and I would be happy to answer any questions regarding Hospice Care and EOL transitions. She was surrounded by angels.
As for me, I retired from the Navy on June 1st, 2012 and became aware of some circulatory problems in my lower extremities. I finally reported to the ER on July 1st after almost passing out while driving my car. I was diagnosed with RCC with extension into my inferior vena cava. On July 12th, I underwent a 10-hour surgery to remove my right kidney, adrenal, lymph nodes and the vascular surgeon replaced a section of my vena cava with a graft. My sister and Jesus were with me throughout and my healing was immediate. I only spent 6 days in the hospital, despite the 50 staple, chevron scar across my belly. The pathology came back as Stage IV, Grade 4, with an 8cm tumor.
Since then, I have been recovering nicely; however, I do have a single met to one lung, still very small (2cm).
I am thankful for this board as I think that I am showing some follow-up symptoms with some belly pain and I foolishly tried to return to work full-time (it did not work). I am a fast learner and appreciate all the information that you have all provided.


alice124's picture
Posts: 897
Joined: Mar 2012

My sympathy to you on the loss of your sister. And while I'm glad you're familiar with this Board and its supportive nature, I'm sorry you've had to become a hands on member.

Since your surgery was July 12, is a scan scheduled at the three month mark? Any discussions with your doctor on next step? Have you investigated possible trials? Are you talking clear cell? I don't mean to overwhelm you but there are many knowledgeable, compassionate people here who will be happy to help you but the more info, the better. That's particularly true in that you're a member of our military. Thank you for all that you do.

foxhd's picture
Posts: 3022
Joined: Oct 2011

So sorry to hear of your recent history. Stay here. Stay informed. Do well.

adman's picture
Posts: 329
Joined: Jul 2012

You're among friends here. God Bless!!

CAPNMatt's picture
Posts: 13
Joined: Jul 2012

I had a scan in August as they were trying to get me into the Pazopanib Trial to prevent recurrence. That is when they found the tumor in my lung had grown to 2CM. I am now being recommended for the IL-2 trial, but after reading up on it, I may delay that until I am at least 6 months post-op. I am having some trouble right now with scar tissue/bowel pinching pain and am awaiting an MRI to rule out brain/bone mets (my first were negative). The pathology showed clear cell with sarcamatoid features, Fuhrman grade 4. I am just looking forward to healing right now as I have been unable to return to work. I have received tremendous knowledge on all of my current issues through this board. Hope everyone has a good day.

Posts: 26
Joined: Apr 2012

So sorry about your sister. It's wonderful that you were able to be there for her. Best wishes for your recovery.

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