BridgetO

You don't have to wait to be contacted. I urge YOU call the oncology center (assuming that's where you were referred-- I was.) Tell them you've been referred by Dr. Pulmonology and ask for an appointment with a lung cancer specialist. Even better, go to the cancer center where Dr. Pulmonology has referred you, read  about the oncologists there, and see who the lung doctor(s) are. If there isn't a lung doctor, it would be best to find one. Lungevity can help with that.
If Dr. Pulmonology has referred you to a specific oncologist, call them directly. If they are a generalist, you can go ahead and meet with them, but lung cancer research is progressing so rapidly you really need someone who follows it.
I'd also urge you to call your pulmonologist, or contact her/him thru MyChart, to be sure s/he has sent the tissue for biomarker testing. Lungevity has info about that at https://www.lungevity.org/for-patients-caregivers/navigating-your-diagnosis/biomarker-testing  
It's so hard to wait. Try to breathe deeply and slowly. And please keep us posted. If you want, you may find you receive more responses if you post in the forums. 

Congratulations, Tom!  i second everything Lisa, Lennie and Lou have said!  Yay for you!

Tom, Hope you are feeling better.  When I first came to Lungevity I was so relieved to see all your blogs and especially the information on suv values.  I had a  scan that really scared me because of a high suv value, so glad you wrote the blog and helped me. Unfortunately, the information on google scares the heck out of you.  Tom, you have been my lighthouse navigating rough waters.  I will keep you and all the bloggers in my prayers......Love Evie

Tom, I'm so sorry to hear about your increasing pain. Do you have a pain specialist or palliative care doc on your team? I wish I could email some pain relief and good sleep, or just send it through the air. Or something. You are a model of hope to so many of us. It hurts to see you suffering. Hang in there, dear Tom.

Dear Tom, 
I'm so, so sorry you are suffering. I hope you will seek ideas from a palliative care person. Most important, I hope there are approaches that might bring you some relief. I wish I had possibilities to offer. 
I'm sure it feels like some doors are closing, but I'm also sure that you will try to find others you can push open. 
Please keep us posted.
Karen

Happy Cancerversary! You've been through a lot and I hope your next six are uneventful, cancerwise that is. Have plenty of fun events.

Good for you for developing a change in attitude! No one deserves lung cancer no matter what they did and embarrassment is just a waste of energy.  Yay for pride--and hope!

Good for you for developing a change in attitude! No one deserves lung cancer no matter what they did and embarrassment is just a waste of energy.  Yay for pride--and hope!

Yes, concerning indeed! Thank you for sharing, Tom. 
In my experience, most hospice companies provide high quality, compassionate care for patients nearing the end of life. Absolutely do your homework should you or someone you know consider transitioning to comfort care. Our team is available for support and can assist in vetting any provider that may be in question.
Please don't hesitate to reach out as needed, mobile 312.639.4529 or KGriffith@Lungevity.org.
kmr  
 

Still missing you Teri.
LMT

This was just lovely, Tom.  I loved seeing her enlarged photo as well!  Teri was very helpful in sharing her experience with VATS Lobectomy prior to my own in October 2018.  She was amazing in all that she contributed here on this forum.  I am not on the forum often (I'd like to be more), so I was not on top of her condition and learned later that she had been dx'd again.  It really hurts to lose someone like her.  Amazing gifts she gave during her lifetime. I know I will never be able to respond as fast, rattle info off so quickly or deal with cancer as gracefully as she did, but she is really a beacon to follow.  Thank you for posting this, Tom.❤️

I'm thrilled that you've had another cancerversary! Keep on going! 

Congratulations, Tom!  i second everything Lisa, Lennie and Lou have said!  Yay for you!

Congratulations, Tom!  i second everything Lisa, Lennie and Lou have said!  Yay for you!

Congratulations, Tom!  i second everything Lisa, Lennie and Lou have said!  Yay for you!

Yay for you Roz and the Roscopal effect. Thanks for sharing this--I hope others will benefit.
 

Thanks for sharing this, Ro. I've just had my first experience with post-chemo/immunotherapy progression (so far mild) and am looking into clinical trials. There are at least three worth consideration at this point, I think--each with a slightly different approach or twist. Two are where I'm currently being treated and the third is where I was first diagnosed (and had my lobectomy and subsequent second diagnosis of Stage IV). I'm waiting for someone there to get back to me to discuss. 
I've sort of skimmed over people's stories about clinical trials, focusing on what was most relevant for me at the time. Now I'm playing a bit of catch-up. Amazing how the perspective changes when something suddenly becomes deeply relevant to your life! 
Really happy you're having success with the radiation--hope it continues!

Roz,
This is a remarkable story about a superb result that only happened because you had the courage and tenacity to insist on treatment. 
Your story also points to the importance of consulting with all medical disciplines who treat lung cancer: thorasic surgeon, pulmonologist, medical oncologist and radiation oncologist. The latter is not often seen but as you’ve demonstrated has very effective treatment tools to apply. 
I do look forward to hearing you tell us of future scans showing diminished cancer until it is gone! And, you are NED!
Stay the course. 
Tom

Happy Cancerversary!

Congrats, Tom!  Nice feet and good pedicure job! I expect to see at least another 17.

Congrats, Tom!  Nice feet and good pedicure job! I expect to see at least another 17.

Bridget makes a good point.  We often fight to hold onto life, but then don't actively live it fully.  Bridget's friend did just that; "lived it for what it was worth".  I would never presume to tell you how to spend your money, but rather would always support a decision to live each day, week, month, year or years fully.
Lou

Yay for you! Great pics, thanks for posting them.
Bridget O

Yay for you! Great pics, thanks for posting them.
Bridget O

Yay for you! Great pics, thanks for posting them.
Bridget O