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I have just learned I have "strange things" on my lungs. The radiologist said they looked like hemangiomas but this has not been reported in VHL.
I have Type 2b. Has anyone else every had any lung problems associated with VHL?
I have not heard of anyone having VHL in the lungs.
Best of luck and keep us posted!!
I know several family members including myself who have things going on in their lungs. We have been told not to worry about it.
I dont know if this is VHL or not but I don't beleive in coincidences I would think that it is.
Emily
Thank you so much for your reply. I went to a pulmonologist after getting the results from my chest CT scan. I have 15 small shadows in my lungs that are blood vessel related, possible hemangiomas or something similar. The MD did not have ANY idea what they were. I did pulmonary function tests that were normal (thank you God) so she said I could
1. Ignore it and have another CT scan in 6 months
2. Have a bronchoscopy (sp?) for a lung wash with biopsy
3. Have a needle biopsy
4. Have surgery to take part of lung out for biopsy
What a bunch of crap. I'm opting for number 1 and going to more informed pulmonologist.
Yes, there is an issue that can arise in some people with VHL. This is newly recognized, and not well documented in the literature. There is supposed to be a new paper coming out from the US NIH to talk about this.
Meanwhile, there is one case study. I have a discussion about it on the internet, as part of the HOUSE program, since one of the HOUSE episodes talked about a women with lung cysts.
http://www.vhl.org/press/house_402.php
They are BENIGN -- but are often mistaken for mets from the kidney. So if some radiologist tells you you have mets from the kidney in your lungs, you should push back gently and ask them to carefully differentiate between VHL lung cysts (which are benign) and mets from kidney (which are malignant). Depending on what's going on in your kidney (how big are those kidney tumors, both present and past?) you can calculate the probability that they are benign.
Example: if your largest kidney tumor is 1 cm and there are "things" in your lung, odds are that they are lung cysts and benign.
If your largest kidney tumor is 7 cm, or you had a big tumor removed in the last 1-2 years, then care should be taken to check out the lung "things", possibly do a biopsy, or certainly do more careful checking to see whether these might in fact be mets.
Between 1 and 7 cm there is some percentage risk, which you and your doctor can discuss and probably do some additional scans and observation before doing anything invasive.
Even if they are, all is not lost. There are new drugs to combat metastatic kidney cancer, and so far they work at least as well for people with VHL as they do for others with metastatic kidney cancer in the general population.
Also go to http://www.pubmed.com and search for "VHL and lung cyst" and check out the articles there (and refer your doctor to these articles). The Klein article is the case study I mentioned. The Linehan 2004 article mentions them in passing. There should be a new article from Linehan's group (2008 or 2009) that will be a more authoritative study of this issue. Meanwhile your doctor can consult with them.
Best wishes,
Joyce
Thanks, Joyce.
I don't have renal cancer at this time. I do have a cluster of cysts on my right kidney that they are watching. I have several pancreatic islet cell tumors that they are also watching (all under 3 cm) and have had some removed 5 years ago. I appreciate all of your support and I will forward this information to my
MD
Sincerely,
Tina
One of our members wrote to me to remind me to caution people whose doctors propose to biopsy lung cysts.
Please remind your doctor that IF they are hemangiomas of VHL, they will be highly vascular AND CAN BLEED PROFUSELY. The doctor should be prepared that when he snips a bit out of this thing, he could be snipping out part of a capillary and it will bleed A LOT.
In general, VHL docs recommend watching them first. If they sit there at the same size and are nice and quiet, they are probably benign hemangiomas or cysts. If they continue to grow, or show any signs of aggressive behavior, they are probably mets.
Best wishes,
Joyce
Thankyou so much Joyce! I really apprieciate your comments. The pulmonologist I saw did not think the
pulmonary parenchymal opacities present in my lungs had grown by 20-30% (which is what the radiologist had written in his report). I am going to get a 2nd and 3rd opinion and go to a VHL center before I let anyone touch me.
Thanks again, you all mean the world to me, this is a very isolating illness, esp when you live in Oregon.
Tina
my husband has a hemangioma on the outside of his lung due to vhl they are just montering it and watching the size
Thanks, I'm glad I'm not the only one with wierd dx.
Tina,
I had a lobectomy a couple years ago to remove a lung lesion that was deep in the lower lobe. The lesion had been present on scans but had not been noticed by radiologists for 5+ years. During that time there had been little, if any, growth but Dr. Linehan suggested it be removed because it was larger than most lung lesions associated with VHL.
The biopsy proved it to be a VHL related benign cyst. In hindsight we would have left it alone and simply continued to monitor it. I would definitely opt for #1!
Jenny
Jenny,
Thank you so much for your kind reply! It helps an enormous amount to get information from others with VHL or knowledge of it.
Again, thank you,
Tina
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