My name is Karin Guthrie. I am a BHD cancer patient and a 40-year-old mother of two little boys. My Birt-Hogg-Dubé inheritance came from my father. He was in the original BHD study through the National Cancer Institute at the National Institutes of Health in Bethesda, Maryland, along with his sister and two brothers. Dad was referred to the study while visiting a dermatologist who noticed his fibrofollicullomas, the tell-tale spots of BHD, on his face. All 4 tested positive for the genetic disorder, and one of my uncles had previously had a malignant tumor removed from his kidney.
My cousins and siblings were advised at the time to get tested, but I ignored the warning. In my early 30’s I noticed a couple of the spots on my face, just like Dad. I figured I probably had BHD, but didn’t concern myself with testing as I was afraid there would be future insurance problems if it had been confirmed. In September, 2007, I went in for an abdominal ultrasound from some pain I’d had for about 48 hours, which turned into two CT scans and phone call that I had a mass on each kidney. I just knew in my heart what I had and that BHD was involved. Later it was confirmed that I had bilateral clear cell renal cell carcinoma, grade 4. Of the clear cell varieties, that is the most aggressive. Surprisingly, the pain I had turned out to be my irritable bowel syndrome, so my finding was incidental.
I was immediately accepted into the BHD study at NCI in Bethesda because of my diagnosis and family history. In November I had a left-side partial nephrectomy and have healed well. I never had any cancer symptoms, as I’ve heard is the case with most kidney cancer patients. Of course I have run through a hundred thoughts and emotions, as well as dozens more you wouldn’t know about unless you actually get cancer. It is especially tough if your kids are so small.
Fortunately, I have great medical care, get frequent scans and tests, and have the support I need through God, my family and amazing friends. Cancer is definitely not the end, and I look forward to every day with the people who mean the most to me.
Hi Karin,
I don’t know if you remember me, but I have been trying to find your contact information since the last time we spoke via e-mail. Unfortunately, my computer crashed and I could not remember your e-mail address. It’s so good to know that you are doing well and have great support from God and your loved ones. I am in the BHD study at NCI in Bethesda because of my diagnosis also. As a matter of fact, I just returned from NIH today, but I did not receive a good report. Well, I choose to believe the report of the Lord which is that I will not die, but live to tell what the Lord has done. I’ve had two surgeries in the last three years (a partial nephrectomy on the left with removal of one rib and a partial nephrectomy on the right ), and I was informed today that I need to have surgery immediately on the right kidney to remove two tumors that have increased in size. I was diagnosed with a growing tumor in the left kidney also, but it is only 1.8 cm rght now. I was told that there is no guarantee that my kidney could be saved. I informed them that I would try alternative medicine first, and they could test me again in six months. They advised against waiting, but I really do not want to undergo surgery and wake up with only a half a kidney that I may end up losing because it has a turmor growing in the center of it. Sorry for going on and on. I want to thank you for sharing your story here. Hope to read more of your posts.
Marva
Hi Marva,
Sent you an email a couple days ago – hope you got it.
Karin