The LUNGevity Blog

by Kasey Long

My story, would more than likely be a book if told in its entirety. Trust me, I am not going to do that here. However, I do feel there are some aspects of it that I feel so much the need to share with all the very special people who make up this website.  So here it goes – in skeletal form and for whatever it is worth!

My primary care physician told me over the phone that the CT scan certainly looked just like lung cancer. YIKES! Bronchoscopy done a few days later showed nothing. Boy was I happy but not for long. I was told a biopsy was needed – simple to just make a little slit and grab a little piece. PROBLEM! First indication that what I had was a humdinger. Had to be a CT guided needle biopsy. Took a week to set it up for the surgeon had a difficult time finding someone to actually guide the scan. YIKES again!

Nine days after the biopsy we – husband and I – met with the pulmonary doc who was coordinating everything. He had been waiting for a call back from the thoracic surgeon and hadn’t gotten it yet, so we proceeded without his input. It is cancer. It is early stage. It has not spread. You are young (58)) and healthy – no heart problems, no diabetes, not anything wrong – just lung cancer. We can just go in and cut it out, have a chemo treatment or two and you are cured. My husband and I practically fell to our knees in praise of God.

We were at the desk making the surgeon’s appointment when we were called back to the office. Seems that now the surgeon had called and surgery was NOT an option. We would be making chemotherapy and radiation appointments instead. Now it was 5:00 – closing time. So that was it, no more explanation or anything. We made those appointments and headed for home.

Okay I’m making this way too long. The next day I had a call in to the pulmonary doc with a question. He called me back at 4:45 on Friday. He answered my question and then offhandedly mentioned the term pancoast tumor. We hung up. It was the weekend. I know how to use the Internet. YIKES three times over.Pancoast tumors are VERY bad news! First thing Monday morning guess what I was doing? And guess who was on vacation?

Not one doctor here in my city had ever seen a pancoast tumor.

So you can see how EASY for the misinformation at the biopsy report! I went to Sloan Kettering in New York for a second opinion. They agreed with treatment recommended here and NEVER mentioned they have a renowned pancoasttumor surgeon there. So I began radiation and chemo locally. It took me a while before I realized it was for palliative purposes only. I was told I was incurable, never would be curable, and would NEVER be a candidate for surgery.

I was told there was no light at the end of my tunnel. I was told that if the November CT scan did not show significant shrinkage that I would not see flowers this spring. YES, believe it! I was told all that!

Well, I felt that was just not satisfactory with me. Off I went for a third opinion to a very reputable cancer center near Philadelphia. I was sent away by thepancoast expert there. I was in bad shape if a pancoast expert turned me away.

I planned my funeral and took care of all those things one needs to take of at a time like this. I prepared my husband whose first wife had been claimed by cancer twenty five years earlier at a very young age. We prepared the children for losing another mother to cancer. It was a very dark time here.

This whole time, September until mid November, I searched the internet day and night. I am sure most of you can identify with searching at 2:00 and 3:00 in the morning! I was a pancoast expert. By ACCIDENT one morning when I googled whatever I googled including the word pancoast, this website presented itself.

I found Donna G. who was listed as a 7 year survivor!!!!!!!!! FIRST positive thing in all this time. I private messaged her. She PM’d back with another pancoastsurvivor, “mhutch”, (aka MaryAnn). I PM’d her. She PM’d back. We went back a forth a few times and her surgeon’s name came up. He is at the National Institutes of Health in Bethesda, MD.

She is in MD and I am in PA. We are neighbors. So I googled the surgeon. I EMAILED the surgeon. He EMAILED me back that same day!!! He saw me the following Tuesday. And the 6 words he said to me are branded into my brain. He said, I think I can help you. MY GOD!!!!!!!!!!!!!!!

So I had surgery and follow-up chemo.
The point of MY STORY here though, is the role this website has played.

For me it literally SAVED MY LIFE. No matter how long it may be, I DID see flowers this spring and I CAN see a light at the end of my tunnel. I feel each day a gift from all of you here. I started off shy and did not post often to the message boards. But I read EVERY day.

I feel like I do know many of you. I read so much. I anxiously await test results with you and celebrate when they are good. I cry and pray when the news is less than what we would want. When I come here I am comforted by those of you who are the caregivers. I am filled with hope by those of you who are surviving and thriving. I receive courage from those of you fighting the hard fight at the moment. Finally I get the sense of family, of people who understand and care and support in ways those not here cannot do.

So thank you, first of all to LUNGevity, Katie and Rick Brown. Thank you to Donna for caring enough to PM me and giving me the first glimmer of hope. And finally to MaryAnn who led me by the hand to my life saver. I am indebted to you all forever.

Thanks to everyone here (at LUNGevity) for what you do every day- reach out your hands to those who need it.

If you’ve been affected by lung cancer and would like to connect with others, join us on the LUNGevity Lung Cancer Support Community message boards

If you would like a LUNGevity LifeLine Support Partner or would like to volunteer to be a partner for someone else needing support- click here