Friday, August 10, 2018

ENDOSCOPIES ARE NOT THE ANSWER TO BEING PREVENTATIVE

Why endoscopies are NOT always the answer to being preventative...

My cousin, Eileen at 30 years old, had her endoscopy on a Monday. Everything looked great and they didn’t suspect anything. Total Gastrectomy completed the very next day and our surgeon said nothing alarmed him and he didn’t expect anything to come back from pathology. Pathology comes back...NOT just cancer cells, but she was diagnosed with STAGE 1 STOMACH CANCER!!! Time frame given...within 2 years, they expect she would probably not be here if it wasn’t caught early (and she had ZERO signs/symptoms). THIS is why, with family history and the CDH1 mutation, having a TG should not be put on the back burner and very highly considered!!!! 

BE PERSISTENT





“If you are not getting the answers you need, trust your gut....be persistent!”

MY STOMACHLESS FRIEND, JESSICA SOLT

Please take the time to read a brief story about my stomachless friend, Jessica Solt, and her journey with losing her stomach. 

http://www.lovewhatmatters.com/he-said-you-can-live-without-a-stomach-my-head-started-to-spin/

Wednesday, July 18, 2018

LOBULAR BREAST CANCER- MEETING WITH BREAST SURGEON

Lobular breast cancer and the CDH1 mutation......still not sure WHAT to do. Hear me out....and I'm open to thoughts and/or opinions....

With this crazy mutation I have, it increases my risk of lobular breast cancer by about 50%. My breast surgeon said that there are two main types of breast cancer- ductile breast cancer and lobular breast cancer. He said of the two, he would NEVER want lobular as it's fast moving/aggressive and hard to find (similar to hereditary diffuse gastric cancer). Unlike the stomach, if I choose to have a prophylactic double mastectomy, there is still a small chance of breast cancer. (With a total gastrectomy, you have a 0% chance of stomach cancer after the surgery.) For most patients who have a mastectomy, their risk changes to about 1-2%. Since the mutation doesn't go away with a mastectomy, my odds would be a little higher- about 3-9% chance even after surgery. Also, they suggest that if you have a double mastectomy, you do non-nipple sparing surgery. Keeping those nipples increases your risk even more and often times, they die off after surgery and/or have no feeling and are numb anyway. WITH that 3-9% risk, if you DO get lobular breast cancer, it's often times too late and has already attached itself to another organ or place in the body. He did say that it is much easier to detect breast cancer when you keep your breasts than with little to no breast tissue left after a double mastectomy. My surgeon, also, said that in his 11 years of doing these surgeries (and he does anywhere from 80-100/year), he has NEVER done a prophylactic double mastectomy and had a patient end up getting cancer and of the ones who have had a mastectomy due to cancer, less than a handful have had a re-occurrence of breast cancer. If I choose to go the route of a double mastectomy, I wouldn't have to ever do another MRI or mammogram, again- also, no more paying my deductible and coinsurance every year for those scans. A mammogram detects lobular breast cancer about 75-80% of the time and an MRI detects it 90-95% of the time.

I have NOT met with a plastic surgeon, yet, but plan to go and get their thoughts, opinions, and options.

What I can say is that I thought meeting with the breast surgeon would give me this big ah-ha moment and much more clarity. It did the complete opposite!!! I may have to, literally, write down my list of pros and cons!!! This may wait until AFTER I see the plastic surgeon, though, as I think that will alter my thoughts quite a bit, too! Ugh

Monday, June 11, 2018

4 OUT OF 6

Requesting some big thoughts, prayers, good juju, or whatever you got for my cousin, Eileen Stewart!! She will be having her total gastrectomy tomorrow morning by the amazing Dr. Michael Kendrick at St. Mary’s Hospital/Mayo Clinic in Rochester, MN. I know she is in the best hands not only because he is rated the #1 laparoscopic surgeon in the world, but because of how well myself, my aunt, and another cousin are doing since our stomach removals!! She will be #4 out of 6 who have tested positive to have a total gastrectomy in our family.

Eileen has been nothing but positive throughout this whole journey and that will definitely be on her side throughout the recovery!! When I asked how she’s feeling, she just says she’s ready to get this over with. She’s a kind soul with the fight and bravery of a soldier and I know she will do well!!! Love you, girl, and keep that positive attitude flying high...always remember your why. 💜💜💜

Friday, June 8, 2018

Tuesday, May 8, 2018

MOTHER'S DAY

With Mother’s Day coming up, my heart breaks every year and probably more so since Paige has been a part of my world. I would have loved to see the relationship my mom and Paige would have had!!! Also, it pulls a little more at my heart strings seeing all these grandparents (specifically Grandmas) at their granddaughters soccer games and Paige doesn’t have that. What I wouldn’t give!!! I’m glad she doesn’t see it as that and just enjoys the game! Although this journey hasn’t been a breeze, I’m so thankful I was given this opportunity to be preventative so that one day, when Paige has kiddos, I will be on that side line cheering her kids on!