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I've just found out...

Andreea_C
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I've just found out a couple of days ago that my mother in law is diagnosed with VHL syndrom. So i guess there is a posibility my husband has this disease too. I read that the chances are 50%. My mother in law isn-t feeling any good, she is in the hospital, very weak, she's 48 years old and her weight is the same - 48kg. She doesn't have any apetite, she looses blood in urin. So i guess her disease is advanced. Here in Romania doctors don't know very much about this syndrom, because, they say it's very rare. My fear now is for my husband. These days i've searched the net and found many articles about VHL, many of them negative, about kidney cancer and all other forms. My mother in law has something at the kidneys. In front of my husband i have to look strong, but in fact i'm very scared for his life. He is very emotional right now...

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Cancer Surgery Brain tumors Kidney cancer

14 replies

gale

Hi Andreea,

Sorry to hear about your mother in law. I personally don't know of any doctors in Romania, but maybe Joyce will have some insight when she has a chance to see your email.

There are a number of Clinical Care Centers around the world that your mother in law's doctors can call and hopefully get some answers. The list can be found at http://www.vhl.org/aboutvhlfa/clinics2.htm.

If you haven't done so already, get a copy of the VHL handbook. You can write info@vhl.org or feel free to email me at
us-fl@vhl.org.

Gale

Andreea_C

Thanks for replying so fast. I'm affraid for my husband, he's scared. Here in Romania i don't think he can do a blood test to see if he enherited the syndrom or not. Our doctor said he has to talk to a doctor from USA, to see if we have this posibility. I hope we do, because i think it's important to find out in time. Do you know anything about clinics in Europe witch deal with VHL?

Janko

hi andrea,

i live in montenegro - can i call it romania's neighbourhood? - and have a similar problem with vhl. no doctors know of it. i had to investigate a lot on my own, and i got help from a few doctors in denmark and germany. i did my blood test at the university of munich laboratory - or it was rather done through them. there are also labs in italy, france and other bigger european countries. just for your info - none of the former yugoslav republics has a laboratory where tests on vhl are done.

i don't think either you or your husband should be too concerned if he proves positive. the good thing about this condition is when it is diagnosed early, so that you can have regular checks and keep things under control. i have had two brain tumours so far and an elst, which will have to be removed soon. but once you accept it, you find it easier to deal with it. it's not a mere phrase that the most important thing is to keep your spirits up :-)

joyceg98

I do have the name of a urologist in Romania who has worked previously with two other people with VHL. She is very nice, and I'm sure would be happy to work with your family as well.

I'll write to you directly with the referral.

Best wishes,
Joyce

Andreea_C

Hello, again! Thank you all for responding. I've read a few discussions on this site. I see there are many people with tihs problem. I read about brain surgery at 10 years old. My god, it' s scary. And now i think, maybe my mother-in-law doesn't have VHL, allthough the symtoms are the same. I mean she is 48, and the disease is quite recent. The other relatives that she has don't have the symtoms and they are over 30's. It's true that she had a sister and brother that died of kidneys and brain tumors.
Can there be a posibility that she doesn't have VHL?
She didn't do any genetical tests.
Who am i kidding? Her doctor said there is little hope of suvival, a couple of months.
I only think of my housband. He is upset with his mother, and now affraid that he might have VHL.
I have to be strong for him, but sometimes i get so hopeless...

gale

That's not true about living only a couple of months. I had many surgeries before I was on top of this thing. I haven't had a surgery in 15 years and I was diagnosed 32 years ago.

As far as surgeries are concerned, actually brain surgery wasn't as bad as is sounds, at least for me.

Gale

Andreea_C

Thank you all for support!

Janko

my father had vhl and he pased away when he was 53, but of other complications. he never had a single vhl symptom in his life.

i think that without a genetic test it is impossible to claim anything.

Andreea_C

Well yes, I think you are right. that's why i want to find out if such tests can be done in Romania. Joyce told me about a doctor in Romania that knows more about VHL. We're lucky because we know this doctor, it's from Constanta, same city, she treats my mother-in-law. So i guess we'll talk more things with her.

joyceg98

If I had to guess, Janko, I would guess that he had kidney cancer. Kidney cancer is particularly sneaky. You often have no symptoms at all until you have metastatic kidney cancer. And once it spreads, you are in a fight for your life.

Your father did all he could at the time. But now that we have DNA testing and medical imaging, there is much that we can do to be proactive, find things early, and solve problems while they are smaller and easier to manage.

Think of VHL as your "early warning system" that you might have problems, and where to look to find them. Most people walk around not knowing what their risks are. This is your opportunity to manage your health, not to be surprised by serious health issues.

All best wishes,
Joyce

Andreea_C

Hi. My mother-in-law has kidney problems. She had a surgery, but the doctors only cleaned the kidney in stead of getting it out, like they should. That's why the illness reappeared. I don't know much about the diagnose, but i think she allready has cancer in a pretty advanced state, because the doctor told us there is little hope of suvival. Her hemoglobin is low 6, she keeps losing blood in urine, she's very thin, doesn't have any strengh, barely eats...

adriano_ro

Buna Andreea ,
ce s a mai intemplat ? as dori sa intru in legatura cu tine . Pot sa dau informatii si sunt interesat sa aflu de asigurarea medicala pentru un cetatean roman . Multumesc si sanatate Adriano

joyceg98

Removing the tumors and leaving the kidney in there working is usually the right thing to do. Even when people already have metastatic cancer they often do a "debulking nephrectomy" (to remove the tumor, not the kidney) in order to reduce the amount of tumor that is generating the cancer into the rest of her body.

So don't second-guess the doctors. It sounds like they are handing the situation as well as they can, but that the diagnosis was probably delayed.

We can't go back. We can only go forward. Work to understand her situation today and what her options are. Fear is natural, but fear never solved anything. You have to take action, in spite of the fear. Courage is not the absence of fear, it's doing what's necessary even in the face of fear.

And now that you know there is a chance that your husband might have VHL, you can take action to protect him. Don't wait for symptoms -- if you wait for symptoms, you will have a very difficult problem on your hands. The time for action is NOW.

There is excellent DNA testing for VHL in Italy and in Germany. Neither one is very far away from you, especially with a courier delivery service. See http://vhl.org/dna

Best wishes,
Joyce

raekel

I AM SORRY TO HEAR OF YOUR WORRIES. YES IT IS TRUE THAT YOUR HUSBAND COULD HAVE INHERITED VHL DISEASE. GENETIC TESTING IS AVAILABLE TO DETERMINE WHETHER OR NOT HE INHERITED THE GENE. IN THE MEANTIME HE SHOULD BE CONSIDERED HIGH RISK AND SHOULD HAVE ULTRASOUND SCANS, OR CT SCANS OF HIS KIDNEYS, ANNUAL SCANS OF THE RETINA OF THE EYE, AND MRI SCANS WITH CONTRAST, OF THE BRAIN AND SPINE.

I AM SORRY THAT IT APPEARS THAT YOUR MOTHER-IN-LAW MAY HAVE KIDNEY CANCER. PLEASE URGE YOUR HUSBAND TO HAVE SCANS AND TO DECIDE WHETHER OR NOT TO DNA TEST. GOOD LUCK TO YOU, RAEANNE

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