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Pancreas Cancer

A couple thoughts was posted 08/25/2014 07:45 am by Jill
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It is an incredibly scary diagnosis. True. True. I am with the previous poster in that I had surgery and did chemotherapy (gemcitibine) and now have mets--one in my liver. I often hesitate to post because I have chosen a different path than most. I was basically diagnosed with mets in April 2014 (tumor marker elevated in April, mets showed on CT Scan in June), and I've decided to hold off on treatment for the time being (with the full support of my onc at Dana Farber). I am not at all symptomatic with my mets. Without getting into detail, my initial treatment for this disease was aggressive and slightly disastrous--two major (one incredibly rare) complications. My onc and I agreed it would not be a big deal to hold off for a few months, so I could enjoy the summer.

And here I am, almost 6 months from my diagnosis with mets, still feeling good. It's possible. We (me, my husband, and my 3.8 year old)just got back from summer vacation #5 yesterday, and I am putting on my sneakers to go out for a run in a few minutes... My onc and I checked in mid summer, and there's been virtually no change.

I share this because as scary as this diagnosis is, the outcomes and choices are so individual. I've seen here on this listserve that folks are living a really long time with treatment and mets. It is heartening. And I know from my own experience that quantity and quality of life varies tremendously--even with the same treatment. My personal belief is that as long as I have access to the best medical care and know my options--the choices I make are the only control I have over the situation. Other than that, I just hope for the best possible outcome for me.

In our family, we go from day to day, week to week, and appointment to appointment. There isn't a decision I make today that can't be changed tomorrow. Just because I'm not getting treatment now, doesn't mean I won't decide to do so in September when I get my next scan. While I want quantity (of life), I am not willing, with this diagnosis, to sacrifice quality. It's a balance. You have every right to be comfortable during your treatment, so make sure you call attention to problems and be persistent, even if you aren't getting satisfactory answers. You know your body best. And know that you can always change course if something isn't working for you.

And please, don't be afraid to ask for help--even if it's from the center where you are getting your care. They should have resources that you can access or should be able to help you access resources where you live. I'm not an 'ask for help' kind of person, and we needed a ton of it last year! It was a hard hurdle to get over, but I did, and it was worth it. I attribute how well I am doing in this moment to all the help I've received, so I could focus primarily on parenting and healing--my two most important jobs! No one should have to go through something like this without help.

My opinions--FWIW. I will keep you in my thoughts and wish you the very, very best. Jill

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*DISCLAIMER: This page is an unmoderated forum, and the opinions expressed herein do not necessarily reflect the viewpoint of The Johns Hopkins Medical Institutions. Patients are advised to consult their personal physicians before making any medical decisions.
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