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mmcgui02

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Hello, Everyone,

On October 22nd, I took my 69 year old husband to the ER after his recent symptoms of nausea, fatigue, overall aches grew worse and our PCP was not able to see him for a sick visit.  In a way, it was a blessing, because when they read his chest XRay, a mass in his upper left lung was very clear.  After the CT scan with contrast, the ER doctor confirmed that it looked like lung cancer as they saw spread into the lymph nodes. He started the referral with a pulmonologist who also agreed it looks like advanced lung cancer. We have a bronchoscopy scheduled for 11/5, and he had had a MRI brain scan 10/30.  Those results are very worrisome. The PET Scan is scheduled for 11/15 and our first meeting with the oncologist is 11/8.  Needless to say it's been a roller coaster ride. 

My  husband has been an avid runner (marathons, half marathons, etc.), coaches a high school runner and conducted a 5 week running clinic for kids this past fall. He was doing a number of house and landscape projects and we helped 2 elderly friends move this summer after learning they weren't nearly as prepared as they needed to be. He was a 1 pack/day smoker for about 20 years, but quit 25 years ago. His lower back had also been bothering him this summer and he had an MRI for that but the neuro surgeon didn't think he was ready for another operation (his first one  was 20 years ago).

We moved from the Boston area to Santa Fe, NM in 2018 and love living here.  Thanks for the 'ear'! I am happy to have a place to learn, research, and ask questions. I was the care giver for a total of 5 elder relatives during my working years, so I do have experience working with the health care system and can be a strong patient advocate as needed.  All for now!

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Welcome to this forum! So sorry about the whirlwind and diagnosis. I assure you that your husband is on the right track as far as testing goes.

As part of his bronchoscopy, please be sure that they send his tissue out not just for biopsy but also biomarker testing to determine whether there is any genetic mutation. Biomarker testing can take a couple of weeks, so be prepared for the wait. 

It's been 2 years since my Stage IIIB diagnosis at age 66. I too was healthy, and the diagnosis was a complete surprise. I've had chemo and radiation and am now on a targeted therapy for my EGFR mutation. I've been NED (No Evidence of Disease) since April.

Your caregiving experience will serve you well. I don't need a caregiver anymore, but my husband was invaluable during my chemo and radiation days. 

Thanks for joining us. You might want to check out the Caregivers section when you get a chance. 

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mmc,

Welcome here and welcome to the Southwest. I'm sure you agree there is a vast weather difference between Boston and Santa Fe.

So where to start? Here is something I normally share when I have the pleasure to greet the newly diagnosed. My bottom line upfront: if I can live (now deemed "cured") after 18 years as a lung cancer survivor, so can your husband. In fact, given the advances in Targeted Therapy and Immunotherapy, even an advanced stage lung cancer diagnosis is eminently survivable. That was not true 3 to 4 years ago, but it certainly is true now.

I know you've peaked at Dr. Google's survival statistics. Here is some insight into their believability. And, this message contains a very powerful essay by Stephen Jay Gould, the noted Harvard Paleontologist who sheds a lot of light on statistics and variation. While "The Median Isn't The Message," variation is.(Do listen to the essay. It is linked in the blog and it is a bastion of hope.) Moreover, survivor statistics are a retrospective view and they certainly do not take into account the amazing impacts of new treatments for lung cancer.

Next, I'll share some important suggestions for one still on the diagnostic trail. If the bronchoscopy does succeed in obtaining a tissue biopsy of your husband's tumor, please do insist that after the pathologist's histology examination, the remaining sample is sent to a laboratory for comprehensive Biomarker Testing.  This is so very important because the results of this testing point to suitability for Targeted Therapy and or Immunotherapy. 

If the brain MRI shows metastatic, then your husband will likely have a consultation with a radiation oncologist. This discipline wields very precise and powerful Stereotactic Ablation Radiotherapy or SABR. This term of reference is new and was commonly known as precision radiation or acronyms like SBRT or IGRT. I had this form of treatment as my fifth and final therapy (not for a brain met but a very persistent lung tumor) and it worked like a charm. There are many here who've benefited from radiation that zaps brain mets and hopefully, they will chime in and share their experience.

Here is some insight into PET scans and here is what my PET report said and meant. Of course, if you have any questions about anything lung cancer related, this is the place. While none of us are physicians, we all have PhDs in surviving lung cancer and mitigating treatment side effects.Moreover, we are still here and hope is a good thing!

I've linked a lot of information with my greeting message because I believe knowledge of this disease provides power. What power? The ability to ask the "terribly preceptive question" during an oncology consultation. Your challenge, and that of your husband, is to quickly learn a new vocabulary and it is indeed daunting. But "start quick, finish quicker!"

Stay the course.

Tom

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Judy, thank you for your thoughtful note. Hearing your story is very encouraging.  I've made a note of the biomarker testing and we'll talk with the surgeon before the procedure tomorrow. I will definitely check out the Caregiver's section.  Wishing you a continued healthy journey!

Tom, you are a wealth of information!  I will be diving into each of the links you provided. Hearing your story is also very encouraging.  We've been trying to stay away from the statistical vortex!  We've adapted well to the northern New Mexico weather!  I love that we still have 4 seasons, but really appreciate that the snow doesn't last for months on end like it does in New England.  We didn't pack our shovels!

I am so glad I found this forum and appreciate you both!

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