I went to Mayo Clinic at the end of May for my annual screenings and many of you on Facebook and Twitter asked that I share my experience. Mayo Clinic in Rochester, Minnesota has doctors who know about Lynch syndrome – they know which screenings and tests are needed for specific mutations — I cannot recommend them enough. I am confident I am receiving the best care possible there and encourage others with Lynch to go there as well. You may have all your screenings and tests done within a matter of a few days by doctors who are well versed in Lynch syndrome protocols. Please note there are financial assistance programs available at Mayo for those in need.
My mutation is MLH1 and the following tests and consults were recommended for my particular mutation, my family medical history, and my personal needs: a blood test, urine test, mammogram, bone density scan, endoscopic ultrasound, colonoscopy, upper endoscopy, gynecological consult, an urogynecological consult, and a dermatological consult.
I met with my nurse Sheila Buhler. She and I went over my health for the past year. I complained of lethargy, nausea, and anxiety – all of which I attributed to my recent scanxiety. Sheila listens to me and doesn’t discount or minimize anything I tell her.
If you have had your ovaries removed and are feeling lethargic, I highly recommend going to the Women’s Clinic at Mayo. They completed a full assessment and blood test. Even though I am on a hormone replacement patch, Mayo found that my estrogen level is at a level comparable to someone not taking any estrogen. They increased my HRT dose and recommend I place the patch on my butt (over a muscle) instead of on my abdomen. I found this very disheartening and cannot imagine how many other women are in comparable positions suffering in silence simply because their hormone levels are not being properly assessed.
Every since my hysterectomy and oophorectomy five years ago, I have noticed that my bladder is not emptying, or voiding, completely. I was seen by urogynecology and diagnosed with pelvic floor tension myalgia — physical therapy has been recommended to remedy this. I am pretty sure that I am not the only woman experiencing this and that is why I wanted to share. Please talk to your doctor if you feel you are having issues with your bladder after your hysterectomy and oophorectomy.
During my scopes, a small 2-mm gallbladder polyp was found along with a 7-mm gallbladder stone – neither were removed. Prior to my visit to Mayo, I had been suffering from a high level of anxiety and was nauseated for over a month. My endoscopy showed that I have Barrett’s esophagus. The high dose of aspirin I take on a daily basis, coupled with anxiety is probably partially responsible for this. It was recommended that I take omeprazole and Pepcid® for the next few weeks and that I learn to manage my stress better.
Usually it is recommended for those with Lynch to have a chromoendoscopy in order to detect the flat polyps, for which we are at risk. My scope revealed a small, flat colon polyp, which was removed and biopsied – thankfully it was detected and it was benign.
My gallbladder indicated a 2-mm mucosal polyp, as well as a 7-mm gallbladder stone. Those will continue to be monitored. My dermatologist removed a 5-mm mole from my central abdomen, which was also found to be benign. I also had my first bone density test (a very easy test, all you do is lie on a table for a few minutes) and found out some good news! I do not have evidence of osteopenia or osteoporosis at this time.
I was there for a total of four days – I had all my tests done within a short amount of time by doctors who know their stuff. My scanxiety is gone. Gone. Gone!
I am still a previvor at 45, no cancer. Frequent, meticulous screenings are absolutely imperative for those of us with Lynch syndrome and unfortunately only about 30% who know we have Lynch syndrome are being monitored properly. This saddens me tremendously because people are either developing cancer or dying unnecessarily from Lynch syndrome related cancers.
Our next #Hcchat is coming up on June 29th at noon EST on Twitter! We are honored to have Dr. Vince DeVita as our special guest; he is an internationally recognized pioneer physician in the field of oncology. We will be discussing everything you need to know about the #Moonshot!
Gratitude to Pathway Genomics®! Thanks to them I was able to attend ASCO in Chicago soon after I returned from Mayo and had the pleasure of meeting some of their great staff and learned about recent advancements in oncology.
Immunotherapy was all the rage at ASCO. If you’re interested in learning more, Dana Farber has done a stellar job of putting all the major takeaways together from ASCO.
If you’re considering genetic testing, ask your genetic counselor or doctor about Pathway Genomics LynchSyndromeTrue™. It is a hereditary cancer panel designed for individuals suspected to be at-risk for Lynch syndrome. Testing includes full sequencing of MLH1, MSH2, MSH6, and PMS2. Testing also includes the deletion/duplication analysis for these four genes as well as the EPCAM gene. Please note, there’s only a two-to-three week turnaround time, both blood and saliva are accepted, Pathway Genomics has a patient-friendly billing policy, and they have options for larger gene panels if needed. Pathway Genomics is deemed accurate and reliable by the College of American Pathologist’s (CAP) Laboratory Accreditation program. CAP accreditation assures compliance with the most comprehensive laboratory standards to maintain accuracy of test results for patients. Find out more about LynchSyndromeTrue™.
And most importantly? Pathway Genomics is involved in the #FreeTheData movement which is going to become more crucial than ever with the Precision Medicine Initiative and Biden’s Moonshot. Learn more during our upcoming #Hcchat on #FreeTheData.
Georgia M. Hurst
Founder and Executive Director of the nonprofit: ihavelynchsyndrome.com