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Frustrated

gabigirl's picture
gabigirl
Posts: 6
Joined: Oct 2013

I am so frustrated!  My husband has stage 4 renal cell carcinoma that has matastisized throughout the body. On 5/14/13 he heard a pop in his shoulder. About 10 days later, we learned he had a lemon size tumor in his hummerous bone in his right shoulder. On 6/3/13 the doctor did a biopsy and we learned the cancer tumor came from an organ. On 6/13/13....we got the horrible news that he had a volleyball size tumor around his right kidney into his renal vein and up the main artery an inch from his heart. We also found out he had several cancer spots in his lungs, a spot in his scapula, lower lumbar spine and small spots in the bones. 6/25/13 he had a MRI of his brain and there was no cancer. In July, he had surgery to remover the tumor in his right shoulder and it was rebuilt with cement and plate and screws. Also at the end of June, he started Votrient. We just had a follow up PETScan the first part of October. We found out the kidney tumor shrunk 40%, however the lower lumber spine tripled in size and it has spread to his liver, 2 spots 2.2cm and 3cm on right lobe and a small spot in the front right lobe of the brain.  We saw an urologist in July who said surgery would be an option.  Our oncologist sent us to him.  When we saw the oncologist in October, he said surgery isnt an option right now because the cancer spread.  He just wanted us to get to know the surgeon in case he was to have it.  It was like he dangled a carrot in our faces saying here you go and now he took it away.  I just don't understand!  We are at one of the two best places in our state!  Can anyone give me some insight?

icemantoo's picture
icemantoo
Posts: 1659
Joined: Jan 2010

gabi,

It is not that we do not want to help, but many of us do not have answers or insights to help you. Eventually those who have better insight and knowledge will chime in to help. All of us do care. There are many positive responses that appear on this board to difficult challanges like your husband's.

 

Icemantoo

icemantoo's picture
icemantoo
Posts: 1659
Joined: Jan 2010

gabi,

 

Read the post from vdm (vin) just below yours for a positive responce to a challanging diagnosis.

 

Icemantoo

Jojo61's picture
Jojo61
Posts: 485
Joined: Oct 2013

I can imagine just how frustrated you are. I am thinking of you and sending my prayers your way.

XO

Jojo

a.oakley
Posts: 32
Joined: Oct 2012

Your husbands situation is somewhat similiar to my husbands.  My husband had repair to bone mets in his spine as his first surgery.  They were worried about paralysis and the quality of life.  Basically his ability to walk.  I'm sure your husbands surgery to his shoulder/arm was also necessary and important.  Your physician then referred you to a surgeon to have the renal tumor removed.  From what I have experienced I have been told that they do the surgery if you are showing a response to the targeted therapy.  We have been to two major medical centers for renal cancer and it was the same experience that we had to be on a targeted therapy that was working to diminish the size of the tumor, or for it to be not growing any further before they would consider having a nephrectomy.  Your husbands scan showed growth, so the surgery was put on hold.  It does NOT mean that it won't happen.  What we found astounding is that the oncology team determined whether or not we were a candidate for surgery.  We went to a different medical center and experienced the same thing.  We saw a surgeon, but he referred us to the oncology team and the tumor board.  The oncology team and tumor board were the people who decided whether or not the surgery could be done.  The second team decided my husband was a good candidate for surgery and the nephrectomy was done.  The first two targeted agents did not work, but the third one did.  He is doing very well.  I hope I have helped a little.  You aren't alone in this struggle.  When I was new to this, I kept comparing our situation to all other people on this board.  Everyone was getting their tumor removed, or so it seemed.  The truth is Stage 4 has different approaches for treatment.  From what I have observed, they want to control the mets, and have a healthy patient, before they do a nephrectomy.

 

Bless you and your husband.

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