1. < Lung Cancer

Adenocarcinoma - newly diagnosed

Posted by Sandy @pixiedust, Feb 26 7:57pm

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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Mentor
Lisa, Volunteer Mentor | @lls8000 | May 4 8:57pm
In reply to @kkckkjm "As a follow up to biomarker testing legislation - I checked the law requiring it be..." + (show)
@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.

REPLY
cmcguire10 | @cmcguire10 | May 4 3:59pm
In reply to @debhol "Hello, I had lobectomy 10 days ago for same. Lymph nodes negative as well. Considered cancer..." + (show)
@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

REPLY
kkckkjm | @kkckkjm | May 4 2:39pm
In reply to @lls8000 "@kkckkjm, Thanks for the reminder for others that may read this in the future! You note..." + (show)
@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

Jump to this post

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.

REPLY
1 reply
kkckkjm | @kkckkjm | May 4 2:03pm
In reply to @lls8000 "@kkckkjm, Thanks for the reminder for others that may read this in the future! You note..." + (show)
@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!

REPLY
kkckkjm | @kkckkjm | May 4 1:55pm
In reply to @vic83 "I had a Video Assisted Thoracic surgery on right lung with wedge resection. While I was..." + (show)
@vic83

I had a Video Assisted Thoracic surgery on right lung with wedge resection. While I was off pain meds in 5 days (and those only needed to cough), the side "strangeness" took months, but that side finally normalized.

Jump to this post

I had a very similar recovery period. I am almost one year since my first RAT surgery and still have weird twinges. But the pain was intense initially! Take care and keep moving, I found walking very helpful.

REPLY
Mentor
Lisa, Volunteer Mentor | @lls8000 | May 4 1:22pm
In reply to @kkckkjm "Hello, a comment about molecular testing. I had 2 lung surgeries, different lungs. Caris did molecular..." + (show)
@kkckkjm

Hello, a comment about molecular testing. I had 2 lung surgeries, different lungs. Caris did molecular testing on first tumor. Went to Mayo for second tumor removal, their labs did molecular testing on that tumor. I also had blood analysis early in my cancer journey (Guardant). Results completely impacted the next steps/options for my treatment (Tagrisso). My advice – BE SURE YOU UNDERSTAND WHAT YOUR INSURANCE COVERAGE WILL PAY! Mine denied all claims. Rationale given included, "There is not enough evidence found in the medical literature to show that this testing is effective for managing your condition. The health plan does not cover tests that are not considered to be medically necessary for your care." The denial states the exclusion in my benefit plan (provided by a nationally recognized insurance company – thru my employer, but they are also huge as a Medicare provider) "…the fact that an Experimental or Investigational or Unproven Service, treatment, device or pharmacological regimen is the only available treatment for a particular condition will not result in Benefits if the procedure is considered to be Experimental or Investigational or Unproven in the treatment of that particular condition."

This is just a heads up. I had assumed the information garnered from the tumor analysis to be vital and a standard of care. I was wrong and paying the price for my ignorance!

Jump to this post

@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

REPLY
2 replies
dianemb | @dianemb | May 4 11:24am
In reply to @kkckkjm "Hello, a comment about molecular testing. I had 2 lung surgeries, different lungs. Caris did molecular..." + (show)
@kkckkjm

Hello, a comment about molecular testing. I had 2 lung surgeries, different lungs. Caris did molecular testing on first tumor. Went to Mayo for second tumor removal, their labs did molecular testing on that tumor. I also had blood analysis early in my cancer journey (Guardant). Results completely impacted the next steps/options for my treatment (Tagrisso). My advice – BE SURE YOU UNDERSTAND WHAT YOUR INSURANCE COVERAGE WILL PAY! Mine denied all claims. Rationale given included, "There is not enough evidence found in the medical literature to show that this testing is effective for managing your condition. The health plan does not cover tests that are not considered to be medically necessary for your care." The denial states the exclusion in my benefit plan (provided by a nationally recognized insurance company – thru my employer, but they are also huge as a Medicare provider) "…the fact that an Experimental or Investigational or Unproven Service, treatment, device or pharmacological regimen is the only available treatment for a particular condition will not result in Benefits if the procedure is considered to be Experimental or Investigational or Unproven in the treatment of that particular condition."

This is just a heads up. I had assumed the information garnered from the tumor analysis to be vital and a standard of care. I was wrong and paying the price for my ignorance!

Jump to this post

Thank you for the information. I hope things improve with this issue. Blessings to you.

REPLY
bpb | @bpb | May 4 11:13am

Hi,

Here are a couple of resources that may be of help: Patient Empowerment Network, Triage Cancer. Triage is about finances and insurance . . . . I would look them up via a browser and see that information is there that might help.

Genomic or biomarker testing is standard of care. If I were you, I might look up some other insurances to see how they handle this and show your insurance company that this testing IS the standard of care.

I am sorry that you are going through this with insurance. It's more than enough to deal with so many things. Insurance issues at this challenging time are just plain awful.

REPLY
vic83 | @vic83 | May 4 8:17am
In reply to @debhol "Hello, I had lobectomy 10 days ago for same. Lymph nodes negative as well. Considered cancer..." + (show)
@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!

Jump to this post

I had a Video Assisted Thoracic surgery on right lung with wedge resection. While I was off pain meds in 5 days (and those only needed to cough), the side "strangeness" took months, but that side finally normalized.

REPLY
1 reply
thieschafer | @thieschafer | May 4 7:44am

Things should get better soon. Moving and walking around can help. Do you still have the opiod? I was using it at night or when I was in a lot of pain. Rotating ibuprofen and tylenol at intervals of 4 hours also helped. Hot and cold compresses. Aromatherapy. I hope things get better in a few days.

REPLY
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