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Lupus, Dysautonomia and kidney tumor...

Jackie02
Posts: 4
Joined: Apr 2013

Hi my name is Jackie and this is my first time visiting your forum. I was dx with Lupus after a sudden illness in 2009,  which then led to brainstem/cervical surgery last July which then I was told I have severe hypermobility of my spine. I have had awful headaches, low grade fevers, night sweats, severe tachycardia and low blood pressure for a few years now. I was dx with Dysautonomia in may 2011 at the Mayo Clinic. I had been having blood in my urine and left flank pain almost every time i have gone to see my doctor (every month). I was referred to have a PET scan due to ultrasounds showing a growth on my ovary but the scan lit up in my left side abdominal area and right breast.. An ultrasound confirmed that I have a 5cm by 4 cm mass in my left kidney. I have been on steroids for 4 years to help control the lupus nephritis. I was wondering wig anyone has been dx with a phenocromocytoma? Apparently my Dr says I've probably had it for a while and it could be the cause of my Dysautonomia issues.. Any advice would be greatly appreciated.. I'm now awaiting insurance approval for a CT Scan!

thank you

jackie

NanoSecond's picture
NanoSecond
Posts: 515
Joined: Oct 2012

Jackie,

I am not sure what sort of doctor(s) you have been consulting with but...

From what little you have shared here I am stunned.  Seeing blood in the urine is one of the few symptoms that may present itself to reveal RCC (renal cell carcinoma).

Worse, you already know you have a 5cm tumor in your left kidney! You need to deal with this ASAP. 

Note this: Mutations of the genes VHL, RET, NF1 (Gene 17 Neurofibromatosis type 1), SDHB and SDHD are all known to cause familial pheochromocytoma/extra-adrenal paraganglioma.

Mutations of the VHL gene are also closely associated with familiar RCC in many cases.  So it seems likely your issues may all share commonalities that only a knowledgeable doctor can assess.

So get thee to one as soon as feasible.  You need to be seen by an RCC expert.

Just my 2 cents.

 

foxhd's picture
foxhd
Posts: 1872
Joined: Oct 2011

Jackie, Welcome. Sorry. Nano just gave you more information than most any doctor could give you. And his 2 cent charge is probably way too low. Your doctor would want about $400. for that much intelligent discourse. Be sure to search out the correct Dr. for you. You are a health care consumer, not a patient. Good luck.

Jackie02
Posts: 4
Joined: Apr 2013

I have known something just wasn't right with my body for some time.. Been to Mayo clinic 3 times, rheumatologist, internal medicine doctors and I went from a "full of life" nurse, mom and wife to barely being able to function. Thank you for the advice. I am trying to get in with the Renal doctor this morning. Problem I have is that I live in a small town and must travel to see any sort of specialist. Again, thank you!

GSRon's picture
GSRon
Posts: 1176
Joined: Jan 2013

Hi Jackie.. welcome.. but sorry you need to be here..   Nano gave good info..  and if you tell us where you are at and about how far you are willing to travel, one of the super wise people here may even be able to suggest a great Doctor..  Do NOT take your position lightly, you need a great doctor that knows how to treat you.. it will likely make a big difference overall..!

Ron

Jackie02
Posts: 4
Joined: Apr 2013

I live near Las Cruces, NM. I called a Kidney doctor today that I had previously seen in 2011.  I explained to the receptionist what was going on and she said that the first available appt wasn't until August....That obviously is not going to work. I am willing to travel wherever I need to for good care.  Also, should I try to see an Oncologist or wait until I'm referred? Thank you!

todd121
Posts: 515
Joined: Dec 2012

See a urologic oncologist. Look at nearby national cancer centers or university hospitals. I'm in Orange County, California. I can recommend some out here. There are good ones at UCLA, USC, Cedars Sinai, City of Hope, UC Irvine in my area. This receptionist doesn't know how serious this is. You probably need to find a different specialist. You don't want just any urologist. At least, you need a urologist that understands the seriousness of this and will help get you to the correct specialist.

Mine, Dr. Jaime Landman, is the head of Urology at University of California, Irvine Medical School. He did a great job on my nephrectomy, but I still recommend you go see a medical oncologist that specialises in RCC and soon. Here is Dr. Landman's website: http://www.kidney-cancer-institute.com/

And for a medical oncologist, in my area, I'd recommend Dr. Figlin at Cedars Sinai and Dr. Pal at City of Hope. They are both RCC specialists. If you call these doctors with your info along with what Neil told you, they will get you an appointment within 48 hours. I'm sure of it. You'll need copy of your CT scans and test results when you go see them. Usually the radiology department where you did the scans can give you a CD/DVD with the scans on them to hand carry or mail to the doctor.

You could go to Texas. I don't know the doctors there, but there are people here that know them. There's some great doctors there and that might be closer for you. MD Anderson in Houston, for example. Dr. Tannir or Dr. Jonasch (if anyone knows better, please correct me, but I seem to remember these names).

If you want to come to LA, I can get you phone numbers or send you links if you need them.

Best wishes,

Todd

Jackie02
Posts: 4
Joined: Apr 2013

i head the CT done today which says it couldn't see the mass but that there was "shadowing" and that was a preliminary report. I saw a urologist also today who said I had blood and protein in my urine today and that I should go to Mayo Clinic and have a kidney biopsy done.... Any thoughts? I'm just so upset that I don't feel like I'm getting pushed in the right direction! I found Mayo Clinic to be a waste of time... I've been there 3 times in the past 3 years and have been told I have Autonomic disease but no answer as to why....

Blueraidermike
Posts: 16
Joined: May 2013

That way you will know what "it" is. 

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

Hi Jackie,

I don't know if this information is helpful to you, but I can recommend Southwestern Medical Centre in Dallas. Dr Cadeddu was my doctor he performed my kidney surgery ten years ago out of Zale Lipshy. It is a fantastic facility and has all the best doctors, Dr Cadeddu is considered to be one of the best in his field. 

It may be too far for you but I just thought I would pas the information on. Have you made any progress with arranging any form of treatment yet?

 

Djinnie

donna_lee's picture
donna_lee
Posts: 393
Joined: Feb 2009

The Oncologic/Urologic surgeon who did my original surgery in 2006and was the attending on my recurrence in 2007 at Oregon Health Sciences University is now teaching and practicing at the University of Arizona in Tucson.  Name is Mitchell Sokoloff and I highly recommend him.  He knows how to make things happen, and quickly.  Look on-line and you'll find his contact info.

And good luck.

Donna

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