5 years ago today

Srashedb
Srashedb Member Posts: 482 Member
in Kidney Cancer #1

It was July 3, 2013 that my husband was told that he had a large tumor in his kidney and two mestases to his spine; we were also told that the treatments had not been successful and gave him “maybe a year but more likely not past Christmas “.

the holiday weekend loomed until further tests and appointments could happen; I googled away and called anyone remotely connected to kidney cancer until everything closed down for the weekend. i made calls to inform his family excluding his aging mother. We called our sons and then spent the 4th at the county fair. We saw it as the last one but savored it in ways not felt since our kids were little.

all of this was before we met with UCSF and got a very different approach and plan of action; I can’t say they saved his life because stage 4 is not curable but to date, they have given us multiple vacations, his hobby grew to actual production of delicious olive oil which are sold.

ucsf has given us the joy of 4 grandchildren who we visit as often as possible. my husband has been blessed with no systemic treatmrnts to date and has been able to treat additional mets with SBRT and a partial adrenalectomy.

Just wanted to share his story and urge anyone newly diagnosed to not accept expiration dates and to seek kidney cancer specialists 

Sarah

Comments

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    edited July 2018 #2
    Not just 5 years

    Sarah,

     

     

    ---but 5 years with a lot of challanges. You deserve a break today.

     

     

     

    icemantoo

  • Srashedb
    Srashedb Member Posts: 482 Member
    #3
    icemantoo said:

    Not just 5 years

    Sarah,

     

     

    ---but 5 years with a lot of challanges. You deserve a break today.

     

     

     

    icemantoo

    Thank you, Iceman

    you are right; lots of challenges and I fully intend to take a break, enjoy the 4th at the county fair and then a family wedding which will really be a 3-day weekend.

    Sarah

  • Manufred
    Manufred Member Posts: 241 Member
    #4
    Great Story

    Impressed by what you were able to do to manage this disease.

    Did any mets develop after the nephrectomy?

    Fred

  • Dutch1
    Dutch1 Member Posts: 152
    #5
    Thank you for sharing.  I'm

    Thank you for sharing.  I'm glad that your husband has beaten the odds.  I am sure you've been a great help to him.

     

    Dutch

  • Wehavenotimeatall
    Wehavenotimeatall Member Posts: 488 Member
    #6
    Wow

    Here to the next five

    what a star

    Annie

  • stub1969
    stub1969 Member Posts: 978 Member
    #7
    I love this!

    I'm all about beating odds and your story hits this perfectly.  Thanks for sharing, Sarah.  I'm sure you've gifted hope to many facing this crazy disease--what a blessing!

    All the best to you and your family.

    Stub

  • Gtngbtr58 @aol.com
    Gtngbtr58 @aol.com Member Posts: 206 Member
    edited July 2018 #8
    What a great post!!

    We really need each other for inspiration, options and hand holding-continued good health-June

  • Srashedb
    Srashedb Member Posts: 482 Member
    edited July 2018 #9
    Manufred said:

    Great Story

    Impressed by what you were able to do to manage this disease.

    Did any mets develop after the nephrectomy?

    Fred

    Mets

    Fred:

    yes, he has had mets after the nephrectomy; several small ones on his spine and sacrum as well as a small one on the adrenal gland. All have been treated by SBRT and a partial adrenalectomy.

    as part of his work up after diagnosis, he had a PET Scan and there were uptakes on several of the areas that later showed up as lesions; the PET SCAN has almost been a roadmap.

    he gets regular scans and MRIs. 

    I use my stress to research and have learned enough about systemic treatments for the mets so we have used SBRT since he has been a good responder...to date.

    we chose surgery for the small adrenal met to avoid side effects from the radiation option after research.

    We are fortunate to have one hell of a team at UCSF; teaching hospitals who have vast experience with renal cancer; the initial cancer center in our area are great for breast and prostate cancer but not in rarer cancers. It is truly disconcerting to learn that their knowledge of renal cancer came from what they read. At the time, they could only offer conventional radiation which they knew was not effective for kidney cancer.

    after his surgery, the opioids caused a severe bowel obstruction and he was admitted to our local hospital; they simply wrote it off as cancer and placed him on the “comfort care” unit. My mom had been there in 2011 and I knew it was really hospice. He was drugged and left but I fought to have him transferred back to UCSF and after 5 nightmare days, he was transferred. What a difference! Those docs went to work and tested until they came up with an answer. 9 days and 25 pounds later, he was released. Had we stayed at our local hospital, he would have died.

    This is my message to anyone here who doesn’t have a ki cancer specialist: find one even if you love your oncologist. 

    Sarah

  • Srashedb
    Srashedb Member Posts: 482 Member
    #10
    Manufred said:

    Great Story

    Impressed by what you were able to do to manage this disease.

    Did any mets develop after the nephrectomy?

    Fred

    Mets

    Fred:

    yes, he has had mets after the nephrectomy; several small ones on his spine and sacrum as well as a small one on the adrenal gland. All have been treated by SBRT and a partial adrenalectomy.

    as part of his work up after diagnosis, he had a PET Scan and there were uptakes on several of the areas that later showed up as lesions; the PET SCAN has almost been a roadmap.

    he gets regular scans and MRIs. 

    I use my stress to research and have learned enough about systemic treatments for the mets so we have used SBRT since he has been a good responder...to date.

    we chose surgery for the small adrenal met to avoid side effects from the radiation option after research.

    We are fortunate to have one hell of a team at UCSF; teaching hospitals who have vast experience with renal cancer; the initial cancer center in our area are great for breast and prostate cancer but not in rarer cancers. It is truly disconcerting to learn that their knowledge of renal cancer came from what they read. At the time, they could only offer conventional radiation which they knew was not effective for kidney cancer.

    after his surgery, the opioids caused a severe bowel obstruction and he was admitted to our local hospital; they simply wrote it off as cancer and placed him on the “comfort care” unit. My mom had been there in 2011 and I knew it was really hospice. He was drugged and left but I fought to have him transferred back to UCSF and after 5 nightmare days, he was transferred. What a difference! Those docs went to work and tested until they came up with an answer. 9 days and 25 pounds later, he was released. Had we stayed at our local hospital, he would have died.

    This is my message to anyone here who doesn’t have a ki cancer specialist: find one even if you love your oncologist. 

    Sarah

  • APny
    APny Member Posts: 1,995 Member
    #11
    Thank you for sharing that.

    Thank you for sharing that. So glad about the four grandchildren and multiple vacations. All the best to both of you!

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