seen by NIH

seen by NIH

By kimbre
Posted January 15, 2008 at 5:32 pm · 10 replies
In Finding a doctor

Hi,

I am newly diagnosed with VHL having renal cell carcinoma. I have had 2 opinions from kidney surgeons here in Seattle, WA. I know that there is a Dr. Linehan at NIH that is the expert on this (for kidneys and VHL) and wondered if anyone has gone to NIH for the full VHL work-up or have had surgery or any procedures there? They have offered to fly me out free of charge, do a week's worth of tests and meetings (all complimentary). I have 3 boys and it will be hard to leave for a full week. I don't want to do any of this before I get my tumors out of my kidneys. If anyone has gone there, what was your experience like? Would anyone recommend this and why?
Thank you for your help... these are hard decisions as you all well know.

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By Jewel2175
Posted January 16, 2008 at 8:41 am

If you have been considering going to the NIH, try your best to get there. It is an incredible place and you only go there by being invited.

Yes, they bring you in and cover the travel costs as well as hotel if you are not inpatient. Additionally, they have the best equipment and most knowledgeable doctors and staff in the entire world.

I can go on and on based on personal experience. However, you can get all the benefits yourself.

Best wishes!

Carole R.
Delaware

By donnainflorida
Posted January 16, 2008 at 9:20 am

I am in a similar situation, as I also have 3 boys. But I can say uniquivacably. GO!!!!
You will receive top notch care. It sounds like you have been invited into their program. If so, you can have your surgery there also. I have had surgery there and I can tell you i received excellent care. Also, I dont know what your insurance situation is, but the savings on having scans an d surgery at NIH has been a lifesafter financially for me. They will bring you back at regular intervals for these scans (timeframe varies with individual). (These scans you will be needing for the rest of your life are very costly) I have been going for 5 years now. My sister meets me out there, and we manage to make it a girls week! Manicures, haircuts etc. Let me know if you need any more information.

By jmathison
Posted January 16, 2008 at 11:23 am

I have been going back to NIH for 6 years and am enrolled in the kidney protocol. I too have children and understand how difficult and heart-wrenching it is to leave them. I am from Spokane, WA and am too fully aware of the length of time it takes to fly out there and the hassle it takes to get everything lined up to allow you to go.

I was told here that I would most likely have to lose my kidney -- I went to NIH, who deals with VHL and kidney-sparing surgery all the time, and they said they would be able to remove the 10 tumors and cysts and only remove a small portion of the kidney. They were so much more reassuring about the outcome and confident with the surgery, I felt much better about my situation immediately after talking with them. Obviously, I had my surgery back there and only lost 5% of my kidney and have suffered no residual side effects. Dr. Linehan is absolutely wonderful and one of the most compassionate doctors I have ever had the pleasure to meet!

At NIH you will also see other people who have been living quite productively with VHL for many years, and that realization helps you believe you can too.

Best of luck,

Jenny

By sarahleigh
Posted January 16, 2008 at 12:12 pm

I have been going to NIH since 1995, and also had previous surgery for RCC. They are indeed top-notch care, and you will get great medical advice. They quite often change the rules and protocols, and currently cover about $50/night for hotel- which in the Bethesda area covers about 1/3 of the nightly cost. There is some expense involved, but considering the care you get and the fact that they take care of airfare and medical care- its worth it. The most difficult aspects for me going out East are: distance away from family (i usually try to bring someone with), time off work, expense of hotel, and the constant changing rules. It is a great place to be when you get to meet a bunch of other people in your same situation. Best of Luck!!

By Goldie
Posted January 17, 2008 at 6:17 am

Kimbre,

Yes, definitely, I would recommend you go to NIH without hesitation. They have the best doctors in the country that know VHL inside and out. Even my urologist at home knew who my doctor was at NIH, he said "every urologist in the country knows who he is". I began there in 1996 with a small kidney tumor which they watched for 4 years until they thought it was time to act on it (3cm is the rule of thumb) at which time there was an experimental procedure I opted for instead of traditional surgery. I understand it is not done there at NIH any longer because they now do it at other hospitals. That procedure was radio frequency ablation and I was able to go back to a normal schedule a day or two after it. That procedure cooks and kills the tumor with a heated needle. But, you need to know if you are a candidate for that depending on location, size of tumor etc. Otherwise, they also do traditional surgery and maybe they have new things on the horizon which I am unaware of. NIH is a research facility and are always testing new and better ways to treat cancer before it goes out into the community. You would have a team of doctors that discuss your case, not just one, and since there is no money involved just research you would be cared for very well. I still go there for follow ups and am grateful for their care. Good luck in your decision. If you have 3 boys, even more reason to make the right choice because they need you.

By eramsteven
Posted January 18, 2008 at 11:46 am

I have been going to NIH since 1998 & have been leaving my kids who were 7 & 3 at the time. I cried my eyes out. (I still do when I have to go there).

But I felt that I owed it to my kids to get the best medical treatment available. If leaving them for surgeries & check ups help me live longer & function normally, it is worth it to my kids in the long run.

We all have to make very hard decisions with VHL but we have to do whats best for us for our loved ones.

Good Luck,
Emily

By joyceg98
Posted January 19, 2008 at 10:18 am

Here is an article that was published in one of the publications of the National Cancer Institute, about the NIH group under Dr. Linehan that is studying VHL and other hereditary kidney cancer syndromes.

See vhl.org/press and click on the picture of Alice (from Washington state) with her dog, or to go directly to the article:

http://vhl.org/press/CCRmagp20.pdf

Best wishes,
Joyce

By jeanmarie
Posted January 19, 2008 at 8:47 pm

hello i am jean marie i have been going to the NIH since 2004 the first time they did a bunch of testing to see if i would qualify to fit in a protocol. i was now i go there every 6 months i am in a brain tumors study, kidney, and eyes. i had surgery in my left kidney by Dr. Linehan team they are great its was 3 cm renal cell i had robotic surgery there care is very good i even had my own room after 3days i went home. i suggest you go see what they tell you you dont have go if you don't want to. but just go once and make sure you wear the blue bracelet so you can be spotted by vhl people and dont be afraid to ask if they have vhl. i did i ve met so many. its good you get to meet other people like you and you dont feel you are the only one, i met someone and we make appointments the same time so then we can hang out in bethesda after. so do it. like i said you just try you dont have to participate if you dont want to. good luck. hey maybe i meet you there, y next app is in may.

By SHAWN1
Posted June 11, 2008 at 6:06 pm

AFTER I HAD MY FIRST SURGERY I HEARD ABOUT RESEARCH BEING DONE AT NIH SO I MADE AN APPT TO GO. THEY DID DO AN EXTENSIVE WORK UP (24HR URINE COLLECTION, BLOODWORK, MRI, CT SCAN, ENT EXAM, ALONG WITH DIFFERENT ULTRASOUNDS). I WAS MADE TO FEEL VERY WELCOME AND THE PEOPLE THERE WERE VERY HELPFUL. I WENT 3 TIMES IN ALL ON A YEARLY BASIS BUT HAVE NOT BEEN BACK. I DIDN'T GET MUCH INFO OUT OF IT BUT I THINK THE JIST OF IT ALL WAS FOR THEM TO SEE AS MANY PEOPLE AS POSSIBLE TO GATHER INFO FOR THEM. I DO BELIEVE THE INFORMATION THEY GATHER IN THEIR RESEARCH AND THE MORE PEOPLE THEY SEE THE BETTER UNDERSTANDING THEY WILL HAVE OF VHL WHICH WILL LEAD TO BETTER TREATMENTS AND/OR A CURE.

By eeyore_fan
Posted June 28, 2008 at 1:30 am

Hi,
My name is Pam, I have been to the NIH and have been seen by Dr. Linehan, I truly think this place is a Godsend! that hospital has removed tumors and cysts from both of my kidneys due to VHL. Don't hesitate, be strong and BELIEVE, they are wonderful people, ALL of them right down to the shuttle drivers!

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