3/2/14
A funny little piece of information. February 28th was
National Rare Disease Day http://www.rarediseaseday.org/ . It is weird that
I discovered two years ago that I had one of these rare diseases. Cowden's
Syndrome http://ghr.nlm.nih.gov/condition/cowden-syndrome.
I am not making this up. Cowden's syndrome can only be figured out through
genetic blood testing really. This is not a test that is done on everybody. I
had stage two uterine cancer at 32. Something that was only discovered because I
was interested in weight loss surgery. I was in a less than 3% group of people
my age who contract this cancer. Consequently, I was referred to a genetic
counselor post hysterectomy, to figure out why it
happened.
Cowden's syndrome is a genetic mutation that allows
your body to create little tumors. Everywhere. This is not a picture of my
tongue. I got the image from a Google search. However, the person in the picture
does have Cowden's syndrome. I am actually pretty blessed. Some people with
Cowden's have tongues like this....some have face bumps and neck bumps and foot
bumps. My external bumps are miniscule. I have a few on my feet. Maybe ten or so
on my hands. Three tiny ones on my face. I actually work in the beauty industry,
so I am very thankful that my mutations are mostly internal.
The thing about tumors. Most Cowden's Syndrome tumors are
benign. However, benign tumors can become malignant at a moment's notice. This
is why it is imperative to have great medical insurance and continuously be
keeping an eye on your health if you are diagnosed with Cowden's Syndrome. It
definitely doesn't have to be a death sentence. It is however, scary.
Surgery has become a daily thing for me. Common as can be. I
had my gallbladder removed, a hysterectomy, a thyroidectomy, and three weeks ago
I had a double mastectomy. My colon is probably the next thing that is going to
be examined (I have to recover first.)
Truthfully, the only
place cancer was actually discovered was my uterus. However, due to these tumors
multiple doctors were in agreement that these organs be removed due to the
multiple papilloma found on them. While I was determining whether or not to have
a double mastectomy, here's what took place:
1. I had a
breast MRI
2. There were multiple papilloma, so I was told
to have a mammogram
3. I had my first mammogram and a breast
biopsy on the same day.
4. They biopsied four areas, yet
told me there were fifteen papilloma.
5. The results were
inconclusive and I was recommended to have at least half of each breast (nipple
included) removed.
6. After a second opinion matching the
first, I chose to be a previvor https://www.facingourrisk.org/FORCE_community/previvors.php and
had a double mastectomy with latissimus dorsi flap http://breastcancer.about.com/od/reconstructivesurgery/tp/latissimus_dorsi.htm)
7. During the mastectomy, they found fifty
papilloma, all non cancerous.
8. Even though I had
no breast cancer, I can now officially say I will NEVER get it.
A funny little piece of information. February 28th was
National Rare Disease Day http://www.rarediseaseday.org/ . It is weird that
I discovered two years ago that I had one of these rare diseases. Cowden's
Syndrome http://ghr.nlm.nih.gov/condition/cowden-syndrome.
I am not making this up. Cowden's syndrome can only be figured out through
genetic blood testing really. This is not a test that is done on everybody. I
had stage two uterine cancer at 32. Something that was only discovered because I
was interested in weight loss surgery. I was in a less than 3% group of people
my age who contract this cancer. Consequently, I was referred to a genetic
counselor post hysterectomy, to figure out why it
happened.
Cowden's syndrome is a genetic mutation that allows
your body to create little tumors. Everywhere. This is not a picture of my
tongue. I got the image from a Google search. However, the person in the picture
does have Cowden's syndrome. I am actually pretty blessed. Some people with
Cowden's have tongues like this....some have face bumps and neck bumps and foot
bumps. My external bumps are miniscule. I have a few on my feet. Maybe ten or so
on my hands. Three tiny ones on my face. I actually work in the beauty industry,
so I am very thankful that my mutations are mostly internal.
The thing about tumors. Most Cowden's Syndrome tumors are
benign. However, benign tumors can become malignant at a moment's notice. This
is why it is imperative to have great medical insurance and continuously be
keeping an eye on your health if you are diagnosed with Cowden's Syndrome. It
definitely doesn't have to be a death sentence. It is however, scary.
Surgery has become a daily thing for me. Common as can be. I
had my gallbladder removed, a hysterectomy, a thyroidectomy, and three weeks ago
I had a double mastectomy. My colon is probably the next thing that is going to
be examined (I have to recover first.)
Truthfully, the only
place cancer was actually discovered was my uterus. However, due to these tumors
multiple doctors were in agreement that these organs be removed due to the
multiple papilloma found on them. While I was determining whether or not to have
a double mastectomy, here's what took place:
1. I had a
breast MRI
2. There were multiple papilloma, so I was told
to have a mammogram
3. I had my first mammogram and a breast
biopsy on the same day.
4. They biopsied four areas, yet
told me there were fifteen papilloma.
5. The results were
inconclusive and I was recommended to have at least half of each breast (nipple
included) removed.
6. After a second opinion matching the
first, I chose to be a previvor https://www.facingourrisk.org/FORCE_community/previvors.php and
had a double mastectomy with latissimus dorsi flap http://breastcancer.about.com/od/reconstructivesurgery/tp/latissimus_dorsi.htm)
7. During the mastectomy, they found fifty
papilloma, all non cancerous.
8. Even though I had
no breast cancer, I can now officially say I will NEVER get it.