My recent blog post

[Denzie]

Some of you know that I blog for lungcancer.net I thought it’s time to share a post with you.

Edit to add

lungcancer.net/living/find-...

[Jenniferroseolson]

Denzie, you have been so important to so many on this site alone. Thank you for sharing this post, and for all that you do.

[ThePurplePlace]

Great post! Thanks for sharing!

[anrean]

Great article - HOPE!!

[JanetteR57]

Well said, Denzie. I also rationalise my diagnosis 9 years ago as happening for a reason which is also why I am so involved in LC research as a patient advocate. Just returned from the annual British Thoracic Oncology Group meeting in Dublin (where 14 patient advocates attended) and the research and talks showed great improvements in understanding of lung cancers and treatment options for lung cancer in recent years. Much of the research now is in which order to give treatments and which dosage is the best to treat the cancer without damaging too much of the person (due to side/late effects). When I attended my first meeting of this group in 2014, there were fewer options although no less enthusiasm and passion from the clinicians, scientists and companies there to find effective treatments. keep the faith and keep doing what you are - amazing... respect x

[Denzie Moderator Volunteer in reply to JanetteR57]

Thank you for your dedication! I’m excited to read that the patient voice is a force in the development of protocol.

Locally, I am active on several of our councils at my hospital including the Medical Oncology and Radiation Oncology Patient Experience Advisory Councils. In the years I’ve been participating it’s been gratifying to see them implement our recommendations.

On a national level I got to Washington, DC to call on Congress and Senate members to increase funding for lung cancer research. Recently we had a scare because the federal budget was going to drop federal research funding of LC and drop us into a classification that encompasses other cancers. Theres more but you get the picture.

It’s an honor to know you and others who are so dedicated to advocacy. You do make a difference in the lives of survivors, both acute and long term, on a daily basis. Thank you for your commitment.

[Gwennewcomer]

Thanks for sharing your blog Denzie. I wish I could find my reason why the powers that be are keeping me going. Lung cancer May 2018 and Brain cancer January 2019.

[Denzie Moderator Volunteer in reply to Gwennewcomer]

Gwennewcomer, you’ve not been at this for two years yet. By sharing your experience here you bring hope to the newly diagnosed. That is a form of advocacy. Many don’t know that you can live more than a few months with lung cancer or brain cancer for that matter.

One of my mentors in the early years of my survival learned about his lung cancer because of his brain metastases. He survived and thrived for 18 years.

As you recover from the side effects of the brain radiation and lasting effects of the surgery you will find that new normal. Tennis legend Arthur Ashe famously said, “Start where you are at, use what you have, do what you can”.

Unfortunately chemo is not indicated in stage one nsclc. In long term research they found it caused more harm than doing any good. Your experience highlights why we need to find an inexpensive, reliable, non-invasive, simple test for lung cancers. At the very least we need to find a systemic treatment that can be given to patients who’s disease was caught early stage.

[Gwennewcomer in reply to Denzie]

I added my story about a month ago. Thanks for the info about your mentor that had both lung and brain cancer and thrived for 18 years. That gives me a lot of hope. Your statement about chemo and stage 1 is what my oncologist had told me in the beginning of my lung cancer. ❤️