Any Adrenal Cortical Carcinoma Survivors, please share your story!

adietrich615
adietrich615 Member Posts: 2
in Rare and Other Cancers #1

My husband (32 years old) was diagnosed in July with Stage 3 Adrenal Cortical Carcinoma after having surgery to remove a 14 cm mass.  The surgery was performed by a well-renowed local endocrine surgeon, but after finding out that it was indeed cancerous, we made the decision to seek medical help at MD Anderson in Houston.  A CT scan 4 weeks post-operatively showed a 2 cm mass near the surgical area that is most likely residual cancer, but no signs of metastasis. The doctor there immediately put him on mitotane 3 times/day, and a 28 day cycle of Adrymicin, Etoposide, and Cisplatin.  We go back for follow-up scans next month.

I am desperate to find long-term survivors of ACC.  I know that the 5-year survival statistics are bleak, but they are also not 0%.  I also understand that since this is a very rare cancer, the numbers aren't there to create reliable statistics.  So I am searching for survivors who can give me hope.  We are young and have two very small children who worship their Daddy. 

Anyone who can provide me with advice, insight, or is willing to share their story of survival, please, PLEASE contact me here, or at adietrich615@gmail.com

My best wishes and prayers to anyone out there fighting this, or any other cancer!

Comments

  • Mika3
    Mika3 Member Posts: 1
    #2
    Sister-In-Law

    After a year of searching (November 2015), discovered she has Cushing Sdyrome and has lead to her being diagnosed with Metastasic Adrenal Carcinoma which has spread to her liver and maybe her lungs. Also trying to get as much information as possible.  Sister-in-Law is taking it very hard.  She just started Chemo. 

     

  • adietrich615
    adietrich615 Member Posts: 2
    #3
    Mika3 said:

    Sister-In-Law

    After a year of searching (November 2015), discovered she has Cushing Sdyrome and has lead to her being diagnosed with Metastasic Adrenal Carcinoma which has spread to her liver and maybe her lungs. Also trying to get as much information as possible.  Sister-in-Law is taking it very hard.  She just started Chemo. 

     

    I still haven't found much

    I still haven't found much more information on ACC, but did find two long term survivors (one Stage 4) who responded to me and are both doing well.

    After the initial shock wore off, I started doing a ton of research on natural ways to beat cancer.  I can't find anything specific on ACC, because it's so rare, but all cancers are caused by generally the same thing happening in the body.

    I encourage you, or your sister-in-law, to research diet for cancer - I have found a lot of compelling information that makes me feel confident that a strict diet along with traditional medicine can combat any cancer.  Most doctors will deny that what you eat has any connection, but if you Google it, you'll find tons of testimonials of people who have rid themselves of cancer by completely radifying their diet.

    We recently became dairy-free, and eat no sugar, other than what is naturally in fruits, and occassionally honey.  50% of our diet is raw fruits and vegetables.

    My husband feels empowered that there is something he can control, and that has taken us a long way.

    His last scan showed that the residual tumor has shrunk by 1/3, and there is still no sign of metastasis.  He has two rounds of chemo left and will be on Mitotane for at least 2 years.

    I wish your sister-in-law the best of luck and I will keep your family in my prayers.

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