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Sarcomatoid

Bruce1955's picture
Bruce1955
Posts: 7
Joined: Jul 2012

I had my tumor removed on 8/8/2012. It was 11x12cm in size. I was told it was a rare form of Sarcomatoid type cancer. Not sure of what's next. I see oncologist in 2 weeks.

ourfriendjohn's picture
ourfriendjohn
Posts: 72
Joined: Jun 2012

Bruce,

I hope your recovery is going well. By this time I imagine you are getting the staples out and feeling like moving around some. Don't push it but, when you can, start exercising. Follow the doctor's advice.

I will be one year post surgery on September 7th for a 17+cm (stage 2b) whopper that turned out to be chromophobe with sarcomatoid features (grade 4). In my opinion you are smart to involve an oncologist now. I have been under my urologist's care but got a referral from my GP to an oncologist who I met with yesterday. The prespective of cancer that he provided was much more in-depth. He said not to get too hung-up on the "sarcomatoid" label. He plans to continue my six month scan interval but change from MRIs to CTs of the abdomin and pelvis and get at least one CT of the chest. I feel much more comfortable with this than abdominal and pelvis MRIs and chest X-rays that I got at the first six month check.

Other than the initial wound soreness and occasional anxitey about possible mets I have no issues and seem to be cancer free now. I hope you will be just as fortunate. I only wish I had found this wonderful group prior to my surgery. The friends I have made here have been more supportive than they will ever know.

John

Bruce1955's picture
Bruce1955
Posts: 7
Joined: Jul 2012

John,
Thanks for your post. It has made me feel better about myself. I see the oncologist tomorrow, hope he has good news.
Thanks again.
Bruce

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Hi Bruce,

I have no experience with Sarcomatoid, mine was standard Clear Cell almost 3 yrs ago now,
but I did want to welcome you to the group since you have completed the initiation process. There are people here with your type and I'm sure you will be hearing from them soon. In the meantime spend time getting to know us by reading the various threads, and feel free to ask questions, add comments, or when you need to, just vent. We understand and will help any way we can. Keep us posted.

Good luck and Godspeed,

Gary

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Huh! "standard Clear Cell" - common as dirt Gary - Bruce is one of us specials!
I'm posting here to say please get off this thread and onto the pre-existing Sarcomatoid thread so that all the useful stuff there is readily available to Bruce and future newcomers.
Fox has made an appearance on KIDNEY-ONC and I'm delighted to say he's immediately started to attract the attention of the top brass and is into a useful expert dialogue there.

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

I spent some time on kidney-onc and i was blown away with the level of expertise on the site i think Fox will benifit greatly from the top brass on this site.By the way Texas finally figured out what was wrong with my Email ,turns out someone from the country of Hungary hijacked my email by means of getting my password info,i have since took corrective action and i think problem is solved.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

I'm not volunteering (too far away anyway) but do make sure you've resolved your security problem Mike. The cyber world gets ever more dangerous (and exponentially more exciting for some of us, eh!) New passwords, defence measures and sensible use of your computer. Consult a local expert if you need to to make sure it can't happen again.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

My grandkids now tell me I'm older than dirt so I guess that fits...and, my nickname when I played ball in college was "Pigpen" because I was always sweatier and dirtier than anyone else on the field.

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