HELP - Overwhelmed with Clinic Options

chasen1

Two weeks ago tomorrow my husband was diagnosed with sarcomatoid renal cell carcinoma. As a young wife and mother of a seven month old, we have been struggling hard to accept this news. From what we have been told it is a very aggressive form of kidney cancer that does not respond well to chemo or radiation. We spent the last week at Mayo clinic and were told the cancer has progressed to stage 4 and surgery is off the table. We are to start Sunitinib and Gemcitabine this week in hopes to "extend his life". I am not ok with this prescription and am becoming overwhelmed with the number of cancer treatment centers out there and the different treatment options. Has anyone had experience with integrated therapy or genomic testing? If so, how did it help you on your cancer journey and what clinics/hospitals did you work with? Has anyone tried the Cancer Treatment Centers of America? Has anyone had experience with the sacrcomatoid renal cell carcinoma? Any advice you have to offer would be greatly appreciated - thanks!  

sandy23

I wanted to offer support as

I wanted to offer support as a wife and mother myself, to let you know that I know exactly what you are feeling.  I'm afraid that I can't answer your specific questions but others on this forum do have varying percentages of sarcomatoid rcc that can be of more help.  I was curious about how they know what type of rcc it is without surgery to remove it.  Was a biopsy performed?

chasen1

sandy23 said:

I wanted to offer support as

I wanted to offer support as a wife and mother myself, to let you know that I know exactly what you are feeling.  I'm afraid that I can't answer your specific questions but others on this forum do have varying percentages of sarcomatoid rcc that can be of more help.  I was curious about how they know what type of rcc it is without surgery to remove it.  Was a biopsy performed?

Thank you for your thoughts.

Thank you for your thoughts. The last month of scans, tests, and biopsys have been terrifying for our family. They did a biopsy through his back in the beginning of February that showed the sarcomatoid cells, as for the percentage, I am not sure. His CT and MRI of his abdomen show that his iliac artery runs through the tumor which is cause for concern...it has also spread to his adrenal gland on that side, but no other organs that we can see. I am a little frustrated about not being able to do surgery...but maybe I am not seeing the whole picture. I am working on an appointment at MD Anderson for the week he is off his treatment to make sure we are headed down the right path. 

Steve.Adam

Hi Chasen

Welcome to the group. My tumour was stage 1 and was a much simpler case than your husband's. Hopefully there are others in this forum with more relevant experience.

Please feel free to ask any and all questions. Everything is open to discussion here.

Steve.

Dutch1

Chasen;

Chasen;

First, I am very sorry to have you a part of our group.  For me, it's particularly tough to see younger folks dragged into a life with cancer.

For me, I am a stage 4, grade 4 guy.  Large tumor and all of that.  I do not have your husband's specific type of kidney cancer. 

You and your husband are looking at major medical centers, which I think is good.  Lean towards buying into the advice of a major center which is close to where you live.  With that, don't hesitate to get a second opinion.  When chosing where to go for treatment, go with the people who you are most comfortable with -- the people you relate to best.  That includes how you relate to their plan of treatment. 

For me, I have both a local (small city) oncologist who is my main provider/advisor.  I used a larger center (for our area) for the actual surgery and for second opinions, as needed.  For me, the local clinic is more personal and offers a better connection between patient and professional.  The big shops are full of super qualified medical staff, but it's impersonal. 

Hopefully, this helps.  Everyone's situationi is different.  I am truly sorry for the grief that you and your husband are going through.

Dutch