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5 years ago today

Srashedb
Posts: 482
Joined: Dec 2013

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

icemantoo's picture
icemantoo
Posts: 3181
Joined: Jan 2010

Sarah,

 

 

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

 

 

 

icemantoo

Srashedb
Posts: 482
Joined: Dec 2013

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's picture
Manufred
Posts: 218
Joined: May 2017

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

Did any mets develop after the nephrectomy?

Fred

Srashedb
Posts: 482
Joined: Dec 2013

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
Posts: 482
Joined: Dec 2013

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

Dutch1's picture
Dutch1
Posts: 146
Joined: Mar 2014

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
Posts: 472
Joined: Aug 2017

Here to the next five

what a star

Annie

stub1969's picture
stub1969
Posts: 766
Joined: Jul 2016

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's picture
Gtngbtr58 @aol.com
Posts: 204
Joined: Oct 2017

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

APny's picture
APny
Posts: 1903
Joined: Mar 2014

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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