1 (edited by JenBurke Tue, 29 Jul 2008 17:05:03)

Topic: Newly diagnosed today in Jenkintown, PA

Hello, my name is Jen Burke, and I am in charge of handling things for my family. Today my dad was diagnosed with CC as of 4 hours ago.

He spent a full week in the hospital last week as the doctors tried to figure out why his liver stopped working. He had a stent installed in the duct, which  stopped his jaundice and some other ugly symptoms. He feels a bit better, but the fatigue and weakness are overwhelming.

He is 82. I want him to have the best life possible and the best care. I want to give him great quality of life for as long as possible.

We live in Jenkintown. I have lupus and use rheumatology/oncology doctors at University of Penn Medical Center, Jefferson University Hospital, Hahnemann/Drexel and Abington Memorial Hospital for all my care needs. Although I know the medical system in the Philadelphia area well, CC is totally new to me, and I am trying to get my bearings.

I have heard great things about Fox Chase Cancer Center.  I thought I would start off there to get an initial consultation for my dad to get the treatment rolling.

Does anyone have any suggestions for care in Philadelphia, an oncologist who has CC as a specialty? I am also willing to make arrangements to bring him to Johns Hopkins if needed, but would prefer to do as much locally as possible because of his and my own physical limits.

I am so happy to have found this forum.

I feel a little panicky.

I'm about to start searching this site, but if you have personal experience with a doctor, I'd love to hear it.

Thank you,

Re: Newly diagnosed today in Jenkintown, PA

Hi Jen --

First let me say what a lot of others will say -- we're sorry you have a reason to join the folks on this site, but welcome. This is a comforting and informative place.

I am recently diagnosed as you dad is; the questions feel like they will never stop coming and they really do not.

If you look around this site you will find links for major CC centers as well as personal experiences with many places. Seems like you are in a decent location -- Penn Medical has a good repuation, and Univ. of Pittsburgh a great one. People on this forum have also had good things to say about FOx Chase.

Understand completely the travel issues -- you want to find the best treatment, but you also need to find a place that you and your dad can reasonably access and stay in contact with.

While the diagnosis and prognosis are bad, there are advances in care and stabilization taking place all the time. There may well be avenues of therapies to get your dad comfortable and stable for some time, although cure is an elusive thing for most.

You will want to begin immediately collecting copies of all medical records -- progress notes, bloood work, CT/MRI/x-ray reports and films (these are generally available on CD), etc. In almost all cases a second opinion is warranted. In any case, as you learn more about the disease,you will better be able to make sense of his lab results and what they mean.

This is a rare cancer in the U.S., and I am not sure at all thant anyone place or doctor is an absolute expert.

Take care -- and there are a lot of people here who join me in saying: Courage and Strength.


Re: Newly diagnosed today in Jenkintown, PA

Irene, thank you so much.  I'm sorry to hear that you share this diagnosis.

With Fox Chase only 20 minutes away, I'd love to see him situated there.

Re: Newly diagnosed today in Jenkintown, PA

Hi Jen,  Sorry to hear about your Dad.  82 years young.  Jen, would you consider your Dad to be a healthy 82 ?  I ask only because additional health issues can complicate what type of treatment and or surgery Doctors may have to offer.   I don't say this negatively or lightly, but just a fact to be aware of.  If you don't have already here is the link for Fox Chase Cancer Center:   http://www.fccc.edu/
Any question or want opinions we'll certainly do our best.
God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

5 (edited by JenBurke Tue, 29 Jul 2008 19:44:35)

Re: Newly diagnosed today in Jenkintown, PA

Hi Jeff,

Thanks for the link and the thoughts.

My dad was really blessed overall, despite a few serious health bouts that resolved. Roughly 30 years ago, he had part of his intestine removed because of cancer, which did not return, except for polyps that could have become cancerous over time if left in place. He was very careful with medical maintenance. Before that, he had a benign tumor removed from his breast.

In '00-'02, he dealt with prostate cancer, which included surgery (partial removal) and radiation therapy. He has been cancer free since '02.

In '03, he had an appendectomy. In '07, he had some bladder stones surgically removed.

In '08, he had to change his diet because his blood sugar became too high. Diabetes was never an issue in his family. Now I'm wondering if perhaps this cancer had something to do with it?

He has taken Synthroid for an underactive thyroid for years now.

None of these things, even while serious at times, ever knocked him down.

While he was hospitalized last week having the stent put in, the diagnostic imaging showed a neoplasm in his right breast. I'm bringing him for  mammogram on Friday to see what's up.

The most frustrating thing for him is the fatigue: he's not used to being in a chair without energy to do much. Fortunately he's a reader, and that's helping.

Throughout all of this so far, he has not had pain or nausea that makes him want to throw up. I'm wondering at what stage do people start to need pain management?