CC in Delaware
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Karen,
Is the mass confined to your liver or has it spread to other parts of your body? If it is still only in the liver, go to one of the surgeons experienced with CC- the general surgeon at jefferson may not have been experienced enough for a resection but if you are a surgical candidate, you should seek out surgical opinions quickly. YOu may be able to send your scans to some surgeons to see if they will see you for a second opinion. Seek out one of the liver surgeons at Fox Chase in philadelphia, Johns Hopkins, and in NYC ->MSKCC (Dr. jarnagin), Mt sinai (Dr Schwartz) and Columbia (Dr. Kato). Worst case you have a second opinion which says surgery is not an option. Best case you get an experience surgeon giving you a better chance at beating this cancer.
Billy
Hi Karen,
I’m new to the board as well (here as a caregiver for my mother, who was diagnosed last August). I am so sorry you have reason to be here but I hope you find it a good source of support as I have. I hope the chemo is kicking the cancer’s butt and continues to do so. It is a frightening thing to contend with, but our family are discovering that there are more treatments and much better knowledge then there was even a few years ago. If you haven’t already done so, consider having a molecular profiling test done to learn about what kinds of treatments might be available along that path.
It sounds like you’ve also already found yourself in a maze of doctor’s offices just to get to this diagnosis, but if you have the energy for it, our family are finding it really useful to solicit 2nd, 3rd, and even 4th opinions at every step of the way. It can be reassuring to get confirmation that you’re on the right treatment path, and each specialist has their own perspective and knowledge to contribute.
I’ve also found it personally helpful to read through the ‘survivor stories’ part of this message board. There is hope!
Strength and positive vibes-
Hannah
Hi Karen,
Welcome to our community, although sorry to learn of your diagnosis. This cancer so often appears without warning, leaving patients and their families feeling blindsided and overwhelmed. It sounds like you have a good treatment plan afoot, hopefully the chemo will do its job and keep your cancer under control.
You mentioned the financial mayhem a cancer diagnosis can cause. You may be aware that cholangiocarcinoma is one of the illnesses that qualifies patients for an expedited approval of Social Security disability benefits. Here is a link:
https://www.ssa.gov/compassionateallowances/
I also hope you have found all the resources for newly diagnosed patients available on the Cholangiocarcinoma Foundation website. This can be a tough cancer, but the science is evolving quickly and new treatments are being developed and are in testing, so there is much hope for our community.
Take care, stay in touch, Mary
I was diagnosed in late October 2018. I had absolutely no symptoms. Based on elevated liver enzymes, my PCP sent me for an ultrasound a year ago January. She suspected hemangioma but radiologist recommended CT scan. Then recommended an MRI. At this point, my PCP sent me to a gastroenterologist. He sent me for some funky bloodwork and said those results would confirm or deny hemangioma. Not hemangioma so he sent me to see a surgeon at Jefferson. Had a laparoscopy and he found the suspected CC. Referred me to oncology. I had a port placed and started chemo the first week in November.
I have two children at home (21 & 15) and a husband. All of us are pretty scared by the diagnosis and everything I learn about this disease. I left my job right before Christmas and we are beginning to feel the financial squeeze as the medical costs seem to multiply. We lost my mom to ovarian cancer just three years ago. She was diagnosed in May and we buried her before the end of June. Cancer is a very scary monster in my family.
Karen (aka Teacher2)
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