Adenocarcinoma - newly diagnosed

Posted by Sandy @pixiedust, Feb 26, 2023

Hello. I am new to this group. Thank you in advance for any guidance and or support you have to offer. I have been diagnosed with adenocarcinoma of the upper right lung. Have had a bronchocoscopy, x-rays, CT and lung biopsy - which determined the diagnosis. I have an appointment this Tuesday for a PET scan to determine staging, and a breathing test will follow. The only symptom I have had is hoarseness in my voice. Otherwise I feel fine. I am simply terrified and still in shock.
Pixiedust

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@lls8000

@kkckkjm, Thanks for the reminder for others that may read this in the future! You note has prompted some good discussion.
While others have mentioned that the biomarker/molecular testing is 'standard of care' in the USA, many rural clinics and insurance companies are lagging behind. The testing really is lifesaving, my own life included. My original insurance company also denied my claim. The biomarker company (FoundationOne) fought for payment on my behalf. Many of us on targeted therapies will experience progression of our cancer in the future, at that time biomarker testing should be performed again in order to determine if the cancer has mutated into another form with a targetable mutation. Unfortunately, our fight for insurance payments may not be over.
We're starting to see state-by-state legislation that requires insurance companies to pay for these tests, but progress is slower than any of us would like, and a federal solution would be preferred. Here's where we stand: https://www.fightcancer.org/what-we-do/access-biomarker-testing

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Thank you Lisa for the support and especially the link to "fightcancer...". It appears my state AZ has enacted some type of legislation to cover this expense. I will investigate further. In the meantime, my 2 appeals were denied by insurance and I was told I'm out of options with them. Armed with the information you provided, I will see where my next level of appeal can be sent. Targeted treatment just seems to make SO much sense and quite possibly save the insurance companies some money. Boggles the mind... Thanks again!

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@lls8000

@kkckkjm, Thanks for the reminder for others that may read this in the future! You note has prompted some good discussion.
While others have mentioned that the biomarker/molecular testing is 'standard of care' in the USA, many rural clinics and insurance companies are lagging behind. The testing really is lifesaving, my own life included. My original insurance company also denied my claim. The biomarker company (FoundationOne) fought for payment on my behalf. Many of us on targeted therapies will experience progression of our cancer in the future, at that time biomarker testing should be performed again in order to determine if the cancer has mutated into another form with a targetable mutation. Unfortunately, our fight for insurance payments may not be over.
We're starting to see state-by-state legislation that requires insurance companies to pay for these tests, but progress is slower than any of us would like, and a federal solution would be preferred. Here's where we stand: https://www.fightcancer.org/what-we-do/access-biomarker-testing

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As a follow up to biomarker testing legislation - I checked the law requiring it be covered by insurance was enacted in AZ in January 2023. My procedures were done in 2022 (June and October). But that is progress and I hope other states will follow.

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@debhol

Hello, I had lobectomy 10 days ago for same. Lymph nodes negative as well. Considered cancer free. I have so much pain from the robotic surgery. When does this improve? Drs say is expected but wow!

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Hi debhol- I am now on almost 6 weeks post op for the same thing. It does get better! My Dr gave me Lyrica 50mg, for the nerve pain along with Robaxin and Tramadol. I only took the Tramadol (Opioid) for about a week afterward. Stopped the Lyrica and Robaxin the next week. I haven’t had to take anything except an 800 mg ibuprofen, once so far. But the bigger pain came a little after getting off of those meds, and all I did was to make sure to walk every day and keep moving, just slower and more precisely. No jerking, tugging, twisting, etc. Very slow stretching of my arms to go straight above to the ceiling seemed to loosen the tightness on the rib cage. You can also take 2x 500mg of extra strength Tylenol. Of course check with your surgeon to make sure they approve. Hope you feel better real soon. It only seems like a long time, but very soon you will look back and say, “it’s not been that long and I feel good now”!🙏
Best wishes, Cindy

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@kkckkjm

As a follow up to biomarker testing legislation - I checked the law requiring it be covered by insurance was enacted in AZ in January 2023. My procedures were done in 2022 (June and October). But that is progress and I hope other states will follow.

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@kkckkjm, sorry that the legislation came a bit too late for you. The law is progress, and comforting to know that you shouldn’t face this challenge again if you happen to need another biomarker test in the future. Insurance challenges are the last thing any of us need when faced with the surprise of a cancer diagnosis.

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Hello. Today I found this Blog. Thanks for your presence and whatever guidance/help you can offer.
I AM IN SHOCK!
In May 2023, my Pulmonary doctor informed me that I had Adenocarcinoma Cancer. The doctor along with pathology procedures identifying nodular growth and changes from a year ago. To date no changes have occurred.

I have gone through many procedures; bronchoscopy, biopsy, CT scan, PET scans.
Presently awaiting start place, date/time radiation.

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@angelfran

Hello. Today I found this Blog. Thanks for your presence and whatever guidance/help you can offer.
I AM IN SHOCK!
In May 2023, my Pulmonary doctor informed me that I had Adenocarcinoma Cancer. The doctor along with pathology procedures identifying nodular growth and changes from a year ago. To date no changes have occurred.

I have gone through many procedures; bronchoscopy, biopsy, CT scan, PET scans.
Presently awaiting start place, date/time radiation.

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Welcome, unfortunately, to our group of wonderful and knowledgeable people who share in the shocking diagnosis of cancer.
What form of treatment is your Dr. recommending? What size is your cancer and what part of the lung is it in? This group of people are awesome at giving good quality information as well as experiences that can help you with almost any question you could have. Of course, your best source of information should be your Dr.
I am at almost 3 months post-op for adenocarcinoma of the left upper lung (LUL). Segmentectomy and a small wedge resection as well to remove it. Mediastinum nodes removed as well. No cancer in any nodes and my cancer was 1.5 cm.
Wishing you the best of luck!
Cindy

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@angelfran

Hello. Today I found this Blog. Thanks for your presence and whatever guidance/help you can offer.
I AM IN SHOCK!
In May 2023, my Pulmonary doctor informed me that I had Adenocarcinoma Cancer. The doctor along with pathology procedures identifying nodular growth and changes from a year ago. To date no changes have occurred.

I have gone through many procedures; bronchoscopy, biopsy, CT scan, PET scans.
Presently awaiting start place, date/time radiation.

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Hi @angelfran, I'm glad that you found us, but so sorry that you are dealing with this recent diagnosis. It's never something that we expect, and many of us have been in your shoes.
There has been a helpful ongoing discussion about radiation of the lung, that you can find here: https://connect.mayoclinic.org/discussion/radiation-treatment-on-lul/
Are the doctors thinking that radiation should be enough to address the nodule?

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Hello. Happy for your follow up response. The doctors are thinking radiation will be enough to address the findings. My cardio thoracic surgeon stated I would be a high risk patent due to the invasive procedure. Consultation with the radiation oncologist is where things are today. I was informed of the two differing treatments, time lines and possible side effects. Currently I am seeking 2nd opinion consult from EMORY where me family resides.

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@cmcguire10

Welcome, unfortunately, to our group of wonderful and knowledgeable people who share in the shocking diagnosis of cancer.
What form of treatment is your Dr. recommending? What size is your cancer and what part of the lung is it in? This group of people are awesome at giving good quality information as well as experiences that can help you with almost any question you could have. Of course, your best source of information should be your Dr.
I am at almost 3 months post-op for adenocarcinoma of the left upper lung (LUL). Segmentectomy and a small wedge resection as well to remove it. Mediastinum nodes removed as well. No cancer in any nodes and my cancer was 1.5 cm.
Wishing you the best of luck!
Cindy

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Congrads! Cindy what great news.
My Dr has recommended radiation treatment to remove it.
IMRT, not sure if I have name correct. One treatment runs 5 days in length, the other approx 6 weeks. My cancer is .3 cm, right outside wall.
Thanks

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@angelfran

Congrads! Cindy what great news.
My Dr has recommended radiation treatment to remove it.
IMRT, not sure if I have name correct. One treatment runs 5 days in length, the other approx 6 weeks. My cancer is .3 cm, right outside wall.
Thanks

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IMRT is correct. Intensity Modulated Radiation Therapy means that they can control the depth at which the radiation is applied, meaning there won't be any skin damage. They still control the width by using lead plates. As far as I know, it's still the latest and greatest, so good for you! I had 33 treatments 5 years ago. Hard for me to tell the side effects because I was getting chemo at the same time. I had my treatments on weekdays, and they gave me every weekend off.

My father-in-law had radiation only to remove his lung cyst last year. It was completely successful and his cancer has not returned. I hope the same outcome for you!

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