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Stanford Medicine

Cancer

A rare cancer survivor’s journey to thriving and advocating

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often chronic diseases share their unique stories. In honor of the upcoming Rare Disease Day (Feb. 28), our latest comes from Tammy Andries of Madison, Wisconsin, a survivor of rare cancer.

When I was first diagnosed with a neuroendocrine pancreatic tumor I didn’t dwell on the fact that I had cancer. With three kids at home, I knew we needed to do all we could to beat the disease. I was 39 years old when I was diagnosed, I had always been healthy, and I knew that God was giving me signs that things were going to be OK. What I didn’t know was that He was giving me an opportunity to meet so many wonderful and caring people over the next eight years of my journey.

Like many others who are diagnosed, I had no signs or symptoms. My cancer was found completely by chance. I went into the emergency room, in a city we didn’t live in, with excruciating pain, and was told I had kidney stones. I was given pain medicine and told that the stones would pass. They never did. Instead, I ended up in another ER (in the city we had just moved to) with doctors doing a CT scan of my abdomen. They found an 8-cm mass on the head of the pancreas and told me to contact my primary care physician to schedule some more tests.

Shortly thereafter I heard those dreaded words, and through all of the tests, procedures and second opinions, I kept seeing signs that things were going to be all right. And so many gifted people were now in my life to help me through the diagnosis, surgery and recovery. The surgeon I had, confident and strong, yet so caring and compassionate. The young intern who sat with me at night and quizzed me on things so that he could present my case during rounds. Having a rare form of pancreatic cancer makes you something of a celebrity.

A few months after my Whipple procedure, I went to a symposium of the Pancreatic Cancer Action Network. It was at that forum that I knew what my next purpose was. I had lived through the frequent trips to the bathroom after meals, the not knowing if the twinges and aches I was now feeling were normal parts of the recovery or not, and the feelings of extreme fullness after having only eaten three bites of a meal, but I couldn’t live with the fact that no one knew much about this insidious disease and that research dedicated to pancreatic cancer lagged so far behind other major cancers. I got involved, and now I’m an advocate for others.

As time passes and the medical appointments get farther apart, I worry a little less. Knowing more about this disease has helped me become more confident in myself, my faith, and my ability to help others faced with the same word I once faced: “You have cancer.”

Tammy Andries is a volunteer and advocate for the Pancreatic Cancer Action Network.

11 Responses to “ A rare cancer survivor’s journey to thriving and advocating ”

  1. Carmen Gonzalez Says:

    Dear Tammy,

    Knowing that advancements in medicine are often spurred by patient champions, I think you have captured the key to making a difference for all other patients facing this disease. The passion and sensibility that patients bring is unmatched by even the most caring clinician. It is your advocacy that will help push scientists and doctors to do better. Take a bow, Tammy.

    Cheers,
    Carmen

  2. Janet Freeman-Daily Says:

    What hopeful, inspiring story! Tammy, I hope you have many productive years of life and advocacy ahead of you.

  3. Olga Hernandez Says:

    Tammy late last year I was diagnosed with Bladder Cancer but a CT scan also revealed a mass at the head of my pancreas.
    My Oncologist told me this was not pancreatic cancer but metastasized Bladder Cancer.
    On October 18th two wonderful doctors, one Urologist and one Surgeon performed a RC with IC and The Whipple.
    Since then I am still in recovery and seem to always be in pain but manageable pain. However my Path Report says that there is no cancer anywhere.
    All I can say is that I read everyday anything I can get my hands on about this desease but I also pray that my medical team be blessed each day.

  4. Lisa Hougland Says:

    Is there a way to reach Tammy directly? I had three pancreatic neuroendocrine tumors ( PNETS) removed with a Whipple 11 months ago.

    Thank you,

    Lisa Hougland

  5. Linda Silversmith Says:

    Tammy – there’s a “whole world” out there of folks with your specific type of neuroendocrine cancer and other neuroendocrine tumors, such as carcinoid.

    Perhaps you will want to meet some of them via e-groups or facebook groups – especially as the prognosis and treatments are so different from those for other types of pancreatic cancers – see for example, the carcinoid group on http://www.acor.org or net_isletcell on yahoogroups.

  6. Bill Claxton (neuroendocrine tumor patient and advocate) Says:

    Fabulous advocacy story and PanCan is a great organisation. Thanks for sharing the story of your journey.

  7. Tammy Says:

    Olga, congrats on having no cancer! That is awesome news. I too continue to read what I can and try to stay on top of what’s new relating to my PNET.

  8. Tammy Says:

    Lisa, Would love to speak with you. I can be reached through the Patient and Liaison Services program (PALS) with the Pancreatic Cancer Action Network. #877-272-6226 or via tandries@pancanvolunteer.org

  9. Kim Browning Says:

    All, my husband was diagnosed in 2009 with carcinoid mets to the liver. Primary was colon. Please visit http://www.carcinoid.org for more information. This site gives you information on upcoming events, new diagnosis, expert doctors in the field, etc. I also belong to facebook groups loveable lungnoids group and Carcinoid neuroendocrine cancer group. I hope this helps and will help to answer questions.
    God Bless you all who have to fight this dreaded diagnosis.
    Kim

  10. Chris lozina Says:

    Join zebra zone on Facebook or carcinoid coffee cafe on Facebook if you are not part of the herd you need to be neuroendocrine patients are called zebras the awareness ribbon is the zebra stripe

  11. Tom McGuffey Says:

    Advocate extraordinaire!! I was referred to Tammy earlier this month by PanCan.

    Nice job on this story Tammy. Talk to you soon.

    Tom

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