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MD Anderson here I come..help/advice needed!

Gamecocks's picture
Gamecocks
Posts: 30
Joined: Jun 2013

May 13: partial done, robot, stage 1 but grade 4 due to small sarcomatoid feature. "We got it all.."

Sept 18: "clear" CT scan

Nov. 20: new read of CT: "need to do PET/MRI."

Results: 10 hot spots at original surgery site, 1.5 inch tumor on dome of liver.

waiting on appt. to MD Anderson in Houston as medical team here says we now "must go to the top of the ladder."

66 yr old male, father died of RCC, mother to lung caner @ 53.

sucks, but need your advice/support guys.

thanks, can't sleep, terrified for my family and myself.

icemantoo's picture
icemantoo
Posts: 3235
Joined: Jan 2010

Gamecocks,

 

I read your earlier posts from June of this year and this should not happen this way. I agree with your referral to the top of the food chain at MD Anderson.

 

I wish I had an answer for you. Hopefully MD Anderson will be able to get this straightened out.

 

Icemantoo

Septemberzoe
Posts: 49
Joined: Sep 2013

I'm so sorry that you are so worried...the anxiety is difficult to deal with. Why did they decide to do a new read of your CT? I live near the MD Anderson in Orlando and have only heard great things so it sounds like you are in good hands. I Weill be thinking of you...when is your appointment? Let us know how it goes

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

I am sorry to hear about your latest issues. I am glad you will be in good hands though.

I will keep you in my thoughts and prayers. Try not to worry too much (not easy, I know). But worrying is a waste of energy - use your energy for good things!

Please keep us posted on what is happening!

God bless!

Jojo

Stros2013's picture
Stros2013
Posts: 31
Joined: Aug 2012

Can't say enough positive about dr Christopher Wood At MD Anderson.  That goes for his entire team.  They've performed radical neph. In April 2012 And continued observation of lung mets.  That showed up June 2013.

If you need help getting around Houston or the medical center, email me.  Both the city and the complex (med center is multiple medical entities) can be overwhelming.  The Mays clinic is really the only place you'd visit And Im happy to help steer you if needed.

sorry about the potetial recurrence but you're heading to the right place.

 

regards

Chris C.

dhs1963's picture
dhs1963
Posts: 510
Joined: May 2012

MD Anderson is great.  But since you father died of RCC, you might qualify for the familial RCC study at NIH.  NIH is awesome.  PM me for the contact there.

Gamecocks's picture
Gamecocks
Posts: 30
Joined: Jun 2013

I am officially now an MDA patient. They have all my records. I have scan disks to take with me on plane. Just waiting on a call to fly out to Houston from home on coast in SC. 

The CT in Sept was read by original radilogist as ok and clear. By mistake, it was re-read by a 2nd radiologist because he thought he was reading a new patient with a similar name as mine. My uralogist is a close friend and called me with that new reading and we did a PET the next day which showed the new tumors. Then did an MRI which lit up hot for tumors at original surgery site and the new 1.5 inch tumor on my liver. This spread is all within less than 90 days from my followup CT scan, or maybe even less.

Seems rather quick and aggressive. 10 tumors at surgery site + liver tumor. 

My local medical team of 2 surgeons , an oncologist, and my referring internist say MD in Houston is my only answer.

again, sucks!

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