Hello. I was referred to Genetic
Department by a Pulmonologist at Mayo, Minn, and received my diagnosis at that location. Highly recommend. There is a Facebook page, BHD Foundation, which has a lot of good info. Good luck!
Hello, The Facebook page is information for those with BHD, basically sharing info and any news on BHD. May I ask what you are looking for? If you are looking for testing, I would recommend contacting Mayo Minnesota Genetic Department. I saw Marine Murphree, Geneti Counselor and Dr. Pavel Pichurin at Mayo Minnesota. Hope that helps.
I have Birt Hogg Dube. Diagnosed at Baylor Med in Houston through genetic testing 2006. I have had a pneumothorax in 2015, left lung. Three glass ground nodules in my right, two have grown and one has a solid component. I’m having a bronchoscopy at UC Davis Cancer Center, Oct 24th.
53 F, non smoker. Previous pneumothorax in left lung 2015. I have three ground glass nodules in my right lower lobe. Two of them I have been watching for about 5 years. I get scans every two years of lungs and kidneys, as I have Birt Hogg Dube. My scan in Sept after 16 mos. showed two of them had grown. 7mm to 9 mm and 9 mm to 11 mm but the bigger one now has a solid component of 4 mm. Worrisome for adenocarcinoma. At UC Davis cancer center, I am having an ion robotic bronchoscopy Oct 24th with an interventional pulmonologist. I really liked him, he spent over an hour with me discussing my case. Let’s biopsy this now, do not wait. I also have another ion ct scan this Friday. My PFT was good. I finally had the consult/second opinion at UCSF with a video visit. He flat out told me - I have cancer (the best kind!?) as it is slow growing and no need to biopsy because we already know, plus the chance of false negatives. Only worried about doing something if it grows to 8 mm. Plus, he showed my scans to a thoracic surgeon who reported the solid component is a bit deep and worrisome for lung volume loss if they did a wedge. He said possibly do some radiation and/or watch it for 6 mos. but first he is presenting it to the tumor board UCSF for more insight. With all that, I think I should go through with the bronchoscopy for the potential of securing biomarkers. I look at this I am blessed to have caught it so early so let’s handle it. Thank you for your comments.
53 F, non smoker. Previous pneumothorax in left lung 2015. I have three ground glass nodules in my right lower lobe. Two of them I have been watching for about 5 years. I get scans every two years of lungs and kidneys, as I have Birt Hogg Dube. My scan in Sept after 16 mos. showed two of them had grown. 7mm to 9 mm and 9 mm to 11 mm but the bigger one now has a solid component of 4 mm. Worrisome for adenocarcinoma. At UC Davis cancer center, I am having an ion robotic bronchoscopy Oct 24th with an interventional pulmonologist. I really liked him, he spent over an hour with me discussing my case. Let’s biopsy this now, do not wait. I also have another ion ct scan this Friday. My PFT was good. I finally had the consult/second opinion at UCSF with a video visit. He flat out told me - I have cancer (the best kind!?) as it is slow growing and no need to biopsy because we already know, plus the chance of false negatives. Only worried about doing something if it grows to 8 mm. Plus, he showed my scans to a thoracic surgeon who reported the solid component is a bit deep and worrisome for lung volume loss if they did a wedge. He said possibly do some radiation and/or watch it for 6 mos. but first he is presenting it to the tumor board UCSF for more insight. With all that, I think I should go through with the bronchoscopy for the potential of securing biomarkers. I look at this I am blessed to have caught it so early so let’s handle it. Thank you for your comments.
Hello @cathleenc. Thank you for coming back and sharing an update. In order to allow for members to more easily track your journey, I have moved your last post into an existing discussion where you first shared, which you can find here:
- Does anyone have Birt-Hogg-Dubé syndrome (BHD), genetic lung disease? https://connect.mayoclinic.org/discussion/bhd/
Will you still proceed with the other ion ct scan this Friday?
Hello @cathleenc. Thank you for coming back and sharing an update. In order to allow for members to more easily track your journey, I have moved your last post into an existing discussion where you first shared, which you can find here:
- Does anyone have Birt-Hogg-Dubé syndrome (BHD), genetic lung disease? https://connect.mayoclinic.org/discussion/bhd/
Will you still proceed with the other ion ct scan this Friday?
I was referred to Baylor Med from my dermatologist in 2007. At that time, they were only able to put me in touch with one other woman who also had BHD in all of Houston. Also, back then there were only two labs in the US who did the genetic testing.
I had genetic testing and discovered that I have the FLCN gene mutation but everything that I research about it comes back to Birt Hogg Dube Syndrome. Because I have the gene mutation, does that mean that I also have BHD? I currently have a large renal cyst that continues to grow and I have other symptoms/issues that do seem like they could be linked to BHD, as well. The problem is that my doctors don't seem to know anything about this particular gene mutation so I often get "blown off" when I bring it to their attention. I've lost my entire family on both sides to some form of cancer, my mother was just 43 years old when she passed away from brain cancer. I'm 40 years old but I have suffered from severe chronic health issues that resulted in becoming permanently disabled since I was 27. Any information or guidance would be greatly appreciated and extremely helpful.
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Hello. I was referred to Genetic
Department by a Pulmonologist at Mayo, Minn, and received my diagnosis at that location. Highly recommend. There is a Facebook page, BHD Foundation, which has a lot of good info. Good luck!
I am in Texas and I have reached out to everyone from the BHG website has on there website with no luck.
Hello, The Facebook page is information for those with BHD, basically sharing info and any news on BHD. May I ask what you are looking for? If you are looking for testing, I would recommend contacting Mayo Minnesota Genetic Department. I saw Marine Murphree, Geneti Counselor and Dr. Pavel Pichurin at Mayo Minnesota. Hope that helps.
-
Like -
Helpful -
Hug
1 ReactionI have Birt Hogg Dube. Diagnosed at Baylor Med in Houston through genetic testing 2006. I have had a pneumothorax in 2015, left lung. Three glass ground nodules in my right, two have grown and one has a solid component. I’m having a bronchoscopy at UC Davis Cancer Center, Oct 24th.
-
Like -
Helpful -
Hug
1 Reaction53 F, non smoker. Previous pneumothorax in left lung 2015. I have three ground glass nodules in my right lower lobe. Two of them I have been watching for about 5 years. I get scans every two years of lungs and kidneys, as I have Birt Hogg Dube. My scan in Sept after 16 mos. showed two of them had grown. 7mm to 9 mm and 9 mm to 11 mm but the bigger one now has a solid component of 4 mm. Worrisome for adenocarcinoma. At UC Davis cancer center, I am having an ion robotic bronchoscopy Oct 24th with an interventional pulmonologist. I really liked him, he spent over an hour with me discussing my case. Let’s biopsy this now, do not wait. I also have another ion ct scan this Friday. My PFT was good. I finally had the consult/second opinion at UCSF with a video visit. He flat out told me - I have cancer (the best kind!?) as it is slow growing and no need to biopsy because we already know, plus the chance of false negatives. Only worried about doing something if it grows to 8 mm. Plus, he showed my scans to a thoracic surgeon who reported the solid component is a bit deep and worrisome for lung volume loss if they did a wedge. He said possibly do some radiation and/or watch it for 6 mos. but first he is presenting it to the tumor board UCSF for more insight. With all that, I think I should go through with the bronchoscopy for the potential of securing biomarkers. I look at this I am blessed to have caught it so early so let’s handle it. Thank you for your comments.
-
Like -
Helpful -
Hug
1 ReactionHello @cathleenc. Thank you for coming back and sharing an update. In order to allow for members to more easily track your journey, I have moved your last post into an existing discussion where you first shared, which you can find here:
- Does anyone have Birt-Hogg-Dubé syndrome (BHD), genetic lung disease?
https://connect.mayoclinic.org/discussion/bhd/
Will you still proceed with the other ion ct scan this Friday?
-
Like -
Helpful -
Hug
1 ReactionYes, I am proceeding with the ct scan this Friday.
I was referred to Baylor Med from my dermatologist in 2007. At that time, they were only able to put me in touch with one other woman who also had BHD in all of Houston. Also, back then there were only two labs in the US who did the genetic testing.
I had genetic testing and discovered that I have the FLCN gene mutation but everything that I research about it comes back to Birt Hogg Dube Syndrome. Because I have the gene mutation, does that mean that I also have BHD? I currently have a large renal cyst that continues to grow and I have other symptoms/issues that do seem like they could be linked to BHD, as well. The problem is that my doctors don't seem to know anything about this particular gene mutation so I often get "blown off" when I bring it to their attention. I've lost my entire family on both sides to some form of cancer, my mother was just 43 years old when she passed away from brain cancer. I'm 40 years old but I have suffered from severe chronic health issues that resulted in becoming permanently disabled since I was 27. Any information or guidance would be greatly appreciated and extremely helpful.