This past week has been a whirlwind. Tuesday went in to the ER for some severe abdominal cramping and fatigue. An Abdominal CT scan detected a mass on each kidney and a mass on the liver and some lesions on the spine. Abdominal MRI said that the mass on the liver was a Hemangioma. My brother has Hepatic Hemangiomas and my mother was diagnosed about 6 months ago with a "blood vessel cluster" tumor in her brain. How do we go about finding out if we have VHL. Our son (age 18 now) was diagnosed with a Hydrocele of a testicle a year ago...could his be from VHL. Our daughter (age 21) is having a problem with dizziness and equilibrium problems the past month.
ANY HELP appreciated.
Still waiting on results of the Bone Scan. trying to decide if we do a PET scan next week.
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Just Learning about VHL
- By NewtoVHL
- Posted August 3, 2008 at 12:04 am · 27 replies
- In Getting a diagnosis
- Shared with the public
Explore topics in this discussion:
Cancer Dizziness Surgery Brain tumors Hemangioma Kidney cancer Hypertension Pain
27 replies
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- Newest first
- By NewtoVHL
- Posted November 30, 2008 at 9:17 am
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VHL test has come back Negative. Next step will be the BHD test....once we get the insurance approval.
I just need to decide which lab to use for that test.
Thank you all for you help and support. I have learned a lot.
Kayla and Joe Nagle
- By joyceg98
- Posted November 11, 2008 at 11:28 am
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VHL 101 is in our Webinar archives.
The report from the Kidney Cancer symposium will be November 20, 8 pm. You can register for it on the webinars page at vhl.org
Best wishes,
Joyce
- By joyceg98
- Posted November 11, 2008 at 12:35 am
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VHL 101 is on the website. See under "Webinars", in the "archive" section.
At vhl.org, look among the "What's New" listings
for Webinars, and you'll find it on that page.
Best,
Joyce
- By gale
- Posted November 9, 2008 at 10:03 am
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Catherine Stolle, Ph.D., FACMG ** previously at University of Pennsylvania
Molecular Genetics Laboratory
The Children's Hospital of Philadelphia
Abramson Research Center 1106F
34th & Civic Center Boulevard
Philadelphia, PA 19104
Phone: +1 215 590-8736
Fax: +1 215 590-2156
E-Mail: stolle@email.chop.edu
- By joyceg98
- Posted November 8, 2008 at 10:48 am
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VHL 101 is available on the website. At vhl.org look on the What's New section for Webinars. You will find the recording there.
Best wishes,
Joyce
- By NewtoVHL
- Posted November 8, 2008 at 7:40 am
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Hello again,
The oncologist is still recommending the VHL test first and if that comes back negative we will do the BHD test. His reason is that both tumors were Renal Cell Carcinomas, I tried to explain that VHL just has clear cell---he disagreed with me. He said that the VHL test is easier to run and the insurance has approved the testing and will pay for it 100%. I just hope we can get the results back and when the come back negative we have time before the end of the year to run the BHD test. (we have met our deductible and our out of pocket expense for the year) He said that Mayo clinic and a lab in PA run VHL tests...which of those 2 would be recommended?
Kayla
- By joyceg98
- Posted October 21, 2008 at 6:07 pm
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Watch the webinars page on the VHL website.
From the front page, click "Webinars" in the table, or under "Caring for Your Health" click "Support", or go directly to
http://www.vhl.org/support/webinar.php
The session you want is the one scheduled for November 20, reporting on the Kidney Cancer Symposium. Join us live, or wait till a day or so after and you will find it listed in the Archive on that same page.
Best wishes,
Joyce
- By Jankster
- Posted October 20, 2008 at 11:13 pm
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How can I access this seminar? Is it still available? Thank you
- By NewtoVHL
- Posted October 13, 2008 at 12:42 pm
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Yes Joyce, that is what we thought. Cathy Sherman and I have been emailing back and forth since we found out about BHD as a possibility. She has been a great fountain of information.
Thanks again for helping us with all of this.
Kayla
- By joyceg98
- Posted October 13, 2008 at 11:47 am
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VHL renal cancers are "clear cell renal cell carcinoma". With this mix of types of kidney cancer, the likelihood is that you are dealing with Birt-Hogg-Dube syndrome instead.
Glad to hear you are on the trail of BHD. Be sure to look up the Birt-Hogg-Dube Family Alliance. There are excellent urologists in the Chicago area, so any one of the major hospitals there should be a good choice. Cathy Sherman of the BHD-FA is a great resource as well.
Best wishes,
Joyce
- By NewtoVHL
- Posted October 11, 2008 at 3:38 pm
- Report post
Ok it's been awhile since I have posted. Joe has had both partial nephrectomies and is 3 weeks post his second surgery.
Pathologists locally said
tumor #1 Oncocytoma
tumor #2 Renal Cell Carcinoma(not sure what type they thought it was)
University of Iowa Pathologists said
Tumor #1 Chromophobe Renal Cell Carcinoma, and Tumor #2 Clear Cell Renal Cell Carcinoma
So this changes things a bit. We are also looking at a BHD (Birt Hogg Dube') I will let you all know what we find out.
- By joyceg98
- Posted September 7, 2008 at 3:10 pm
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Delighted to hear that things went well! Yes, those "shark bite" incisions are pretty long. But they evidently needed to get a wide view in order to do a good job.
Yes, do ask them to send it to a place more expert in VHL -- like Cleveland Clinic or NIH (Dr Linehan's group) or Beth Israel in Boston (Dr. Sabina Signoretti). The pathology from this tumor will be important in getting an accurate diagnosis and determining the best treatment plan going forward.
Best wishes,
Joyce
- By NewtoVHL
- Posted September 7, 2008 at 8:09 am
- Report post
I know it's been a while since I posted...this is what has gone on since then.
Pheo test was negative.
First surgery was done Sept 3rd. We were expecting the right kidney to be operated on first but they reviewed things the day before surgery and decided that the left one was going to be the easiest to access.
Surgery took about 2 hours and the doctor came out and said things went well. Joe only lost about 200cc of blood, the doctor seemed surprised and pleased about that.
Joe was surprised by the size of his incision...but I assured him they only cut open as much as they had to.
Still waiting on the pathology report. Dr came in yesterday (Saturday) with hopes of having the report. He said he was wondering if the lab was having a hard time coming to a decision. The doctor said that on the frozen section they did in the OR the were wondering if the tumor could be an Oncocytoma. We may have to have this sent 1 or 2 other places to find out for sure. Second surgery not scheduled yet until we find out.
Joe is home now and doing well....A little more pain since he is up moving around more than he was in the hospital.
Any suggestions??
Kayla (Joe's Wife)
- By gale
- Posted August 23, 2008 at 10:28 am
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When I do it at home, I line (plastic bag) a doable trash basket (small) and put ice in it. I leave it in the bathroom.
Gale
- By joyceg98
- Posted August 22, 2008 at 1:11 pm
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I've decided to do my presentation "VHL 101" as a webinar on September 24, 2008, at 8 pm Eastern / 5 pm Pacific time. If you would like to be invited to this "live" session, please send a note to meetingreg@vhl.org
If you have specific questions, you might send them in advance. If not, don't worry -- there will be time during the meeting to ask questions.
The recording of the session will be available for replay after September 26.
I will post this also as a new discussion for people to propose other sessions that they would like to see.
Thanks!
Joyce
- By joyceg98
- Posted August 22, 2008 at 10:26 am
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That 24-hour urine test never fits neatly into schedules. Perhaps some of the others here can give you hints.
You can carry the jug (and "hat" for women) in a backpack with some ice packs to keep it cooled, and cart it around with you.
Do it any day except Friday or Saturday. You need to deliver the completed jug to the lab early morning on the day you finish (Monday thru Thursday). If you drop it off on Friday they might hold it over the weekend, and that will not give the most accurate results.
If you are keeping the jug in the fridge at home, maybe put it into a brown paper bag and mark it "not edible". Remind folks that it's not apple juice.
I would probably not put it into the fridge at work at all, just rely on ice packs to keep it cooled.
Other ideas?
Best,
Joyce
- By NewtoVHL
- Posted August 21, 2008 at 6:22 pm
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Thank you Kristel. We will keep you all posted on what we find out from the histopatholy done on the tumors removed.
Our urologist wasn't sure we really needed to run the test for the Pheo but said he would to put my mind at ease. So now we have to figure out when we can do a 24 hour urine test that will fit into schedules.
- By Kristel
- Posted August 21, 2008 at 6:13 pm
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Good luck with your kidney surgery. Make sure they try to keep as much of your kidney as possible, You are going to need it if you have VHL. It really sounds like you could have it.
Try not to get too overwhelmed. It's a lot to deal with when you first get diagnosed and there are many manifestations to take care of but it slows down after a while and it's more screenings than surgeries.
It gave me chills when I read your post. It sounds a lot like my family eight years ago. You will get through it and it does get easier. Good luck.
- By joyceg98
- Posted August 18, 2008 at 11:38 am
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Sounds good. I hope everything goes well with the surgery. We'll all be cheering for you!
Best wishes,
Joyce
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