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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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kkckkjm | @kkckkjm | May 3, 2023

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!

REPLY
3 replies
Sandy | @pixiedust | May 3, 2023
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

Thanks @kkckkjm. Geeze, sorry you had to go through that. I have just changed my health insurance which will cover chemo and radiation. I did have a maximum out of pocket copay of around $3600. I have $1241 left which I will have as a copay until it's met... Once that is met, it will take care of my chemo and radiation.

Sadly, we have to go through so much, and when health insurance becomes a nightmare it just adds to our stress.

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1 reply
kkckkjm | @kkckkjm | May 3, 2023
In reply to @pixiedust "Thanks @kkckkjm. Geeze, sorry you had to go through that. I have just changed my health..." + (show)
@pixiedust

Thanks @kkckkjm. Geeze, sorry you had to go through that. I have just changed my health insurance which will cover chemo and radiation. I did have a maximum out of pocket copay of around $3600. I have $1241 left which I will have as a copay until it's met... Once that is met, it will take care of my chemo and radiation.

Sadly, we have to go through so much, and when health insurance becomes a nightmare it just adds to our stress.

Jump to this post

Thank you. My insurance has been great, except for this!

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debhol | @debhol | May 4, 2023
In reply to @thieschafer "I had a robotic lobectomy; upper left lobe at the Mayo Clinic in Rochester, MN. I..." + (show)
@thieschafer

I had a robotic lobectomy; upper left lobe at the Mayo Clinic in Rochester, MN. I live in MN. Stage 1ac at the end of December 2022. Lymph nodes removed were negative for malignancy. Technically cancer free but will be watching it closely because I am still nervous. I was told at the Mayo Clinic that a lobectomy is the gold standard treatment for this stage. They also told me that my breathing capacity after surgery would be 80%. Recovery is a process and takes patience. Follow up CT in May.

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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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2 replies
thieschafer | @thieschafer | May 4, 2023

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.

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vic83 | @vic83 | May 4, 2023
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.

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1 reply
bpb | @bpb | May 4, 2023

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.

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dianemb | @dianemb | May 4, 2023
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.

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Mentor
Lisa, Volunteer Mentor | @lls8000 | May 4, 2023
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

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2 replies
kkckkjm | @kkckkjm | May 4, 2023
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.

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