Beth (Hilt)Bentlage Beth Bentlage

First post: Jun 15, 2018 Latest post: Jan 18, 2019

The following is Beth's story as drafted by her loving family.  If you know this family, you can only imagine the devastation that this disease has brought onto these Christian, generous, dynamic,  loving, and hard working people.

 Beth Bentlage  is traveling the difficult and emotional  journey of battling Cancer.  This is not unfamiliar terrain for Beth as she had Cancer over 9 years ago that responded to surgical intervention and radiation treatment.  This current Cancer is proving to be a much tougher opponent.  In mid September of 2017, a lump was discovered on the left side of her back.  The Biopsy results revealed a VERY RARE Malignant Cancer called Adenoid Cystic Carcinoma(AAC) that metastasized from the previous cancer episode.  Since the 9/2017 discovery intervention has included:
Resection of the tumor on her back to remove the mass and clean the margins of the cancer
PET scan performed and a lesion/growth was found on the left lung
January 2018 , CT scan showed increased size of the growth on the left lung
Needle Biopsy performed and results showed positive for Metastatic ACC
Northwestern was determined to be best option for care at that time and therefore Mark fought the almighty insurance company to have Beth's intervention moved to Northwestern
Wedge resection to remove tumor in the left lung was performed by Northwestern.(note that IU would not consider removal)
This tumor was much larger than anticipated and lymph node near mediastinum was also tested to be positive for ACC
Radiation was necessary as it was not possible to get the entire tumor and to insure that any possible trace Cancer was remediated.
Beth endured 20 radiation treatments
Early May 2018,  a spot was found on her left upper back.
Radical excision of the tumor was performed.  Around  same period, a lesion was discovered on Beth's head along  hair line which was biopsied during the removal of upper back tumor. 
Biopsies of both indicated malignancies.  Specimens were sent away for Genomic testing(Foundation 1)
May 16, 2018 another surgical intervention was performed to perform a wide excision of the head lesion.
May 31, 2018 Plastic Surgeon removed the stitches
May 31,2018 cont. -Plastic Surgeon and Oncologist met with Beth and Mark to discuss options.  Decision was made that Surgical intervention is not a viable option to treat this Cancer
Currently, there is a very small lesion on the left posterior head that has yet to be treated
A lung CT scan was moved up from late July to June 11,2018 to assess the effectiveness of the radiation treatments.
Beth and Mark will be at Northwestern again on June 11 and June 12, 2018 for multiple appointments with Beth's Oncology team to discuss viable options for intervention.  Bentlages will push for an action plan to be in place by June 19, 2018.

Needless to say, the Bentlages are experiencing a wide variety of stressful emotions.  The lifeline of Surgery as an aggressive and appropriate treatment for this Cancer with supplement of radiation has now been pulled out from under them.  They are tired, scared, nervous, sick, exhausted, sad, and mad while praying and desperately clinging to any hopeful emotions that they can muster.

Intervention Possibilities (even alternative interventions) as Bentlages understand it are limited but could include:

-Surgical intervention(no longer an option)
-Oral Adjunct Therapy
-Clinical Trials on new treatment in process of FDA approval which are located in:
          Trial treatments in Seattle for 4 months
          Trial treatments in San Francisco
           Stanford University has some possibilities through Dr. Ronald Levy, Professor of Oncology

The Bentlages are very open to anyone who has ANY suggestion of any traditional or alternative intervention that could give Beth the upper hand on this terrible disease.  If you have a legitimate course of care, please do not hesitate to reach out to Mark.
The family is trying to knock down the anxiousness that comes with waiting.  Beth is amazing and holding it together which inspires Mark to advocate and push through his own emotions.  She is very tired from the frequent surgeries and radiation  This is compounded by the stress, frequent traveling and just worrying  not only about her own health but about all who surround her.  She remains driven to stay strong which inspires others to do the same.  She truly loves the cards and letters.  The meals taken to the family and the go fund me site has been such a blessing.  Beth and Mark are so grateful and humbled by all those who have lovingly reached out to provide care assistance and the general well wishes and prayers that have been sent their way.
Trevor is holding up well.  He is glad that this medical crisis isn't about him...…. Being the social butterfly that he is,  he is enjoying all of the attention given to him by visitors.  

Thank you to all.

Jamie Stormont-Smith
In care of the Bentlage Family 

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