As a part of our Faces of Courage series, we are featuring a patient story each month. Each one of our members has a unique story to tell, but they all reflect the intrinsic courage of those who face the challenges of cancer head on, with dignity, strength, and passion for life.

Our Patient of the Month for December is Sara Penne. Here is her story:

GISTory

Sara PenneMy name is Sara Penne.

I had actively been pursuing my abdominal pain for over 3 years and had been misdiagnosed by 5 providers and then finally, I was recommended to see Dr. Bhavish Aubeelauck by a good friend of mine. I had finally found a provider who pursued my symptoms until we found a concrete answer. Even though it wasn’t the answer we had hoped for, I am glad I can now be treated in the correct manner. I was diagnosed with Stage 4, KIT Exon 9 mutation GIST at 33 years old in August 2019. My initial reaction was of total shock and disappointment. It was the absolute last thing I expected. My initial tumor sizes were 9.1 x 8.7 x 12.9cm, 11mm, 3.7cm, 2.6cm and 3.0cm.

I would like to extend a couple of words of gratitude. Thank you to Dr. Bhavish Aubeelauck at Good Samaritan Medical Group in Kearney, NE for his persistence and for always treating me like an individual and not a number. I truly appreciate him and the way he practices.

Thank you to Dr. James Pudassis at Nebraska Medicine in Omaha, NE for keeping up to date on this disease and doing all the correct testing at the beginning of my diagnosis so we could hit the ground running when it came to treatment.

Thank you to Dr. Mehmet Copur at Central Nebraska Specialty Clinic in Grand Island, NE for doing diligent research on this disease, calming my fears and for always being available via text or phone call for questions and concerns.

Thank you to my family and friends for their continued support and love. Thank you so much for your part in my journey.

Last, but not least, thank you to God for continuing to redirect my heart to Him and helping me realize I’m not alone.

COPING
I cope with GIST by having a BIG support group, keeping myself updated on the disease, phenomenal doctors, a positive attitude and my faith in God.

ADVICE
If you do not trust your treatment or doctors, keep pursuing new providers. Someone will eventually make you feel comfortable and give you the treatment you deserve! Also, it’s okay to have a pity party for yourself once in a while. This is a tough road! Just remember to not stay in the darkness and to redirect yourself to the light. Dust yourself off, put your armor back on and FIGHT!

HOBBIES
Husker football, camping, fishing, volunteering at the local animal shelter, spending time with friends and family, and treating GIST 😉

MOTTO
Always be thankful. Life could be worse.

Each member story reflects the individual patient’s experience. GIST is not one disease, but a family of diseases and each patient has a unique set of symptoms and manifestation of the disease.

Criteria for Patient of the Month

  1. Patient must be a member of the LRG Patient Registry
  2. Patient is an active member of the Patient Registry, continually providing medical updates
  3. Patient’s record should be at least 80% up-to-date
  4. Patient has a GIST/PRiME account
  5. Patient must agree to provide consent to share his/her story to our GIST community on our website and social media

Interested? Contact Sahibjeet Kaur, LRG Patient Registry Supervisor, for more information: skaur@liferaftgroup.org

read more member stories