Thanks for being here...

[kristinj]

Dear Friends,

My Dad was diagnosed 1 week ago with Stage 3B NSCLC. He is only 59 years old and is in otherwise good health. We are still absorbing the diagnosis and are in the process of setting up appointments, 2nd, 3rd, 4th opinions, etc. We are trying to figure out the best way to get the appts. sooner, since we wanted them YESTERDAY!

I found this site today and I am just so grateful. I know that my Dad can live with this disease and that he will be one of the amazing stories. It is just nice to know that others have done the same. So, thank you and I look forward to the support that I believe I will find here. Any advice is welcome...I am the oldest in the family- 33 with 2 children ages 5 1/2 and 1 1/2; a sister who is 28; brother who is 29; and a baby sister who is 20; don't forget my Mom who is really trying to figure this out! God Bless you all and take care.

Smiles,

Kristin J. Philadelphia area

[Kasey]

Welcome, Krisitn!!! I, too, am im the Phila. area ~ well just a little more west ~ but grew up there some years ago. I was dx 3B or 3A depending upon which doctor you ask. In just a few short weeks I will be a 6 year survivor. Be sure to tell your dad that!

Let me know how I may help you and your family. I'd be interested in where your dad is being treated and where you are planning to get additonal opinions. I am more than willing to offer some insight.

Kasey

[beatlemike]

Hi Kristin and welcome. There is a wealth of information and support here . If you or your father have any questions Im sure there is someone here who can answer it for you or direct you to someone who can. Prayer said for your father.

[kristinj]

Dear Kasey,

We are heading first to the local oncologist- Regional Hematology and Oncology Associates in Langhorne with St. Mary's Medical Center. Dr. Evan Alley is our Oncologist there. We are also waiting to hear back from Fox Chase; have an appointment at Abramson at Penn with Dr. Corey Langer, but that is not until 9/28- any tips on getting it sooner? Also, putting in a referral to Penn Presby. for Dr. James Stevenson...mayber sooner? Willing to go to Sloan Kettering if that is necessary or would be beneficial.

My "poor" (because of our high strung selves) Dad is surrounded by extremely strong, Type A women, my sister and I currently in the lead who are making all sorts of phone calls and beginning to stalk the doctor offices! Mom is still adjusting, but I am sure she will be on board soon- until then, my Sister and I are enough for most!!! She is on the organic/holistic kick- I am the appointment, paperwork, insurance guru. We just like to do anything that makes us feel like we have some sort of control.

Thank you again. It means so much to have a support team of Survivors!!!! Please let me know of any insights any of you may have- Cancer Treatment Centers of America anyone???

[recce101]

Hi, Kristin, welcome to the group! What led to your dad's diagnosis, and how is he feeling? I started this cancer trip in August 2006, and actually I'm in better condition now than at any time in the past 4 years. You can read more than you ever wanted to know about my history by following the link in the signature area at the bottom of the message. You also might be interested in a rather unusual (I dreamed it up myself) graphical summary of my cancer experience — rotate the graph 90 degrees clockwise and zoom up to 100 percent:

http://wvpress.com/grace/bvsev.pdf

Since you're actively looking for info, may I suggest that you visit cancergrace.org (GRACE — Global Resource for Advancing Cancer Education). GRACE is led by Dr. Howard "Jack" West, a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions online. A lot of us are "dual citizens" and have the same usernames there as here. Aloha,

Ned

[ts]

Welcome - sorry you had to find us. I hope you will find our acquaintance useful.

I'm going to answer one of the questions that you specifically asked - though it is all second hand. The CTCofA appear to be well financed and advertised businesses. They like the good cases that make them look good and have a reputation for turning people down that don't fit their profile. It also sounds like their services are not covered by many insurance companies. On the other hand, a few people I've met who did go to one loved them. I've had no interaction with them, but they sound kind of like spa service or concierge services which can sure make you feel good whether or not they are effective.

I don't know what your financial situation is, but before you go ahead with 4 opinions, you may want to check with your Dad's insurance company. Most approve a second opinion, and then, may approve a third if there is a significant difference. The oncology visits add up very quickly - and multiple ones may not give you more choices or clarity.

I can appreciate what you are trying to do. You want a good match on a personal level with the doctors - how aggressive you want to be, do they listen well, explain things so that you can understand them - that sort of thing. For some people, this is a lot of personal time, for others, it is seeing their doctor's name on current research and convention/teaching presentations. And sometimes, what we need changes over time.

Best to you and your entire clan. Especially Dad.

[Joppette]

Hi there,

You are on a ride of a lifetime. And right now you are on the high side, gathering information, trying to figure out what is best for Dad.

A little bit of advice. Let Dad feel he is in control and making the decisions. God bless you type A daughters, but this is Dad's life and he needs to feel like he is in control. There is nothing more out of control feeling than lung cancer. Allow him this please.

I was about your age when my Mom got sick with lung cancer, and like you, I wanted to get all the answers. The "not knowing" was killing me. But the alternative totally ticked my Mom off and one day she got so mad she told me to get the heck out of her house. She'd had it with my controlling will, and threw me out!

It was a hard lesson for me to learn, but learn I did. I learned to be the daughter, and let my Mom be the Mom, and it was the best lesson of my life.

I love your positive attitude and hope and pray Dad continues to do well.

Judy in MI

[jaminkw]

Hi Kirstin, welcome onboard. Your Dad and Mom are lucky to have you doing all the research for options. I agree with Judy in MI tho that the final decisions need to be Dad's. You've already gotten great advice here so I'll just add that I recommend getting the best care you can as close to home as possible. I went to MDA in Orlando and wound up with an 8 hr drive each way every three weeks for two years. I was finally able to start my treatment close to home and just go to Orlando every three months. My life feels so much more normal now.

By the way, I was dx'd 3b and am closing in on three years and am traveling around the northeast with my husband while he works. I set up and get my 3-wkly treatments at cancer centers along the way.

Good luck and keep up posted. As most here will tell you, things do settle into a "new normal" once your father gets a treatment plan in place.

Judy in KW

[dianew]

Welcome Kirsten. I don't think there is much I can add to what everyone has already posted, but did want to welcome you. Like Judy in KW did, I am currently traveling 8 hours each way every 4 weeks for a trial treatment. I am not at all sorry I chose to do this, but at times it is very tiring, not to mention expensive.

Best of luck to your Dad and the rest of your family as well. Once a decision is made and a treatment plan is in place, life gets a little easier I think. This is a wonderful site and the people here are so knowledgeable and supportive.

Diane

[Bud Baker]

Welcome, Kristin! Glad you found us. You've already gotten some great advice. I just wanted to send best wishes for your dad.