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LisaA

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  1. Like
    LisaA reacted to Rower Michelle in Radiation simulation today   
    Hoping all goes well for you Lisa! 
  2. Like
    LisaA got a reaction from PaulaC in Proton radiation therapy not covered by insurance   
    Thank you Lexie. As a result of your informative link, I did contact our employer plan administrator today to see if they could do something to get this approved. Thanks for the great info!
     
  3. Like
    LisaA got a reaction from LexieCat in Proton radiation therapy not covered by insurance   
    Thank you Lexie. As a result of your informative link, I did contact our employer plan administrator today to see if they could do something to get this approved. Thanks for the great info!
     
  4. Like
    LisaA reacted to Tom Galli in Proton radiation therapy not covered by insurance   
    Lisa,
    I've been to several symposiums on precision radiation and proton beam therapy.  Understand that precision radiation uses ionizing radiation (gamma rays) that are narrowly focused.  Proton Beam Therapy uses non ionizing accelerated protons that are narrowly focused.  Both kill tumors.  There are two significant differences: cost and the amount of tissue surrounding the tumor that is damaged.  Proton beam therapy is very, very precise.  It is often used in very young children as a way to minimize as much collateral tissue damage as possible.  But, proton therapy is extremely expensive and precision radiation can often accomplish the same result at much reduced cost.
    I'd ask your radiation oncologist why proton beam therapy and would precision radiation like CyberKnife, for example, accomplish the same objective.  If the oncologist really believes proton beam is necessary, he or she has to provide a lot of ammunition to battle insurance.  
    Stay the course.
    Tom
  5. Like
    LisaA reacted to Rower Michelle in Proton radiation therapy not covered by insurance   
    Hi Lisa, 
    Insurance!  Total nightmare!  Aetna just had a $25 million settlement for denying radiation treatment that they deemed experimental in Oklahoma this year.  I would have your doctor file a prior authorization request outlining the medical rationale for this treatment.  If the prior authorization request is denied, then an appeal can be filed (and should be).  The final level of appeal is an Independent Review Organization (IRO).  The insurance companies lose the majority of IRO appeals.   
    I think Aetna might be a little gun shy about denying treatment to cancer patients as the jury award was intended to send a very strong message.   
    See if you can find out if your employer is self insured.  If so, your employer may elect to instruct Aetna to pay the claim on an "extra-contractual agreement". 
    If all else fails, the hospital has a financial team that will be able to assist you.  Please do not make any out of pocket expenditures until you have exhausted the appeals process and employer extra-contractual agreements.   
    These requests are reviewed very quickly-usually within a matter of "a few days".   Ugh.  
    The insurance process is really terrible (my Foundation One claim has now been denied three times!! IRO here we come.... 🙁
    Michelle 
  6. Like
    LisaA reacted to LexieCat in Proton radiation therapy not covered by insurance   
    I just found this: https://www.proton-therapy.org/patient-resources/insurance/.
    No idea how legit the information is, nor, of course, am I in a position to know what the best treatment for YOU might be, but figured I'd pass it along in the event you want to pursue it.
  7. Like
    LisaA reacted to LexieCat in Proton radiation therapy not covered by insurance   
    For what it's worth, here's what Aetna says about Proton Radiation Therapy: http://www.aetna.com/cpb/medical/data/200_299/0270.html.
    It's pretty long, I didn't read the whole thing, but it appears to boil down to their conclusion that there's insufficient evidence that it's more effective than more conventional radiation for lung cancer.  It IS approved for some other cancers.
  8. Thanks
    LisaA got a reaction from PaulaC in First CT scan after surgery   
    Hoping that it is all perfectly wonderful!
     
  9. Sad
    LisaA got a reaction from Tom Galli in First visit with oncologist today   
    HI Michelle,
    It's turned into a more complicated thing than I originally hoped for. The oncologist reached out to the lung surgeon I had been seeing and he and she decided that I now need a bronchoscopy before anything is started. (Ugh, more and more time before treatment starts! Getting so frustrated!)  I was able to get that scheduled for one week from today. 
    I talked to radiation oncology office today, now they need me to establish a relationship with a pulmonologist before they can start radiation to optimize my lung function.  So scheduling a new patient office visit puts me in the middle of Feb. 
    It is just delay after delay for tasks that could have been done earlier. It's now been 8 weeks since diagnosis and time is ticking and I'm getting more symptomatic day by day.
    Thank you for thinking of me on this day, I'm touched that you remembered! 
  10. Like
    LisaA got a reaction from Tom Galli in All clear!   
    Great news! I'm sure you are relieved! Such great news!
  11. Like
    LisaA got a reaction from LexieCat in All clear!   
    Great news! I'm sure you are relieved! Such great news!
  12. Like
    LisaA reacted to Rower Michelle in First visit with oncologist today   
    Hi Lisa
    Its all part of the process.  All told it took about me two months to get rolling on my treatment plan.  The more diagnostics going into this will result in a better outcome for you. I know it’s so frustrating to do all this waiting.  You’re in the home stretch now.  See if you can figure out who your nurse case manager is.  Mine is awesome & she took care of all the scheduling & coordination of the treatment team.   Keep us posted.  Thinking & praying for you! 
    Michelle
  13. Like
    LisaA got a reaction from Roz in WHAT ABOUT THE SECOND OPINION?   
    David I'm in the same situation as your wife. My surgeon said he "would" do the surgery but is almost certain I will need o2  forever. He said since I am an active employed person that enjoys a social life and traveling he would recommend treatment via radiation and chemo. The radiation and oncology docs agreed with no surgery and said that my lifestyle would remain active after treatment. I did get a 2nd opinion and they agreed.  Now they need a brain MRI and bronchoscopy to check the lymph nodes and we can finally get this ball rolling.  Wishing the best for your wife and you
  14. Like
    LisaA got a reaction from LexieCat in WHAT ABOUT THE SECOND OPINION?   
    David I'm in the same situation as your wife. My surgeon said he "would" do the surgery but is almost certain I will need o2  forever. He said since I am an active employed person that enjoys a social life and traveling he would recommend treatment via radiation and chemo. The radiation and oncology docs agreed with no surgery and said that my lifestyle would remain active after treatment. I did get a 2nd opinion and they agreed.  Now they need a brain MRI and bronchoscopy to check the lymph nodes and we can finally get this ball rolling.  Wishing the best for your wife and you
  15. Like
    LisaA reacted to Steff in First visit with oncologist today   
    Lisa,
    Let me give you a perspective from a daughter whose mom has had to be on oxygen on and off for 10 years....my mom still does everything she wants and everything she has to do everyday.  Throughout her entire lung cancer journey, she has been the caregiver of my dad - she mows the lawn, snow blows and shovels snow, crawls under the house, drives and sets up their motorhome, all with oxygen strapped to her back.  She has found ways to make daily activities easier and asks for help when she needs it.  My mom is on oxygen right now. Last weekend we walked around Boise, attended a concert in which she sang along and had the best time - all while on oxygen.  She does pulmonary rehab twice per week and when she has time, she goes to water aerobics (she doesn't need to wear oxygen in the water).  She has found ways to deal with the complications of COPD and then lung cancer.  My mom is not the epitome of health and is obese.  She gets frustrated that she cannot move at a pace she once did, but her slower pace has enabled her to enjoy things more.  The most important thing to her is to be alive, to live her life, to do the things she loves.  And she does all of that, just with oxygen on her back. When you ask her if she would have surgery again, she says "absolutely".  Her life did not end because she has had to be on oxygen, it just looks different, which is not a bad thing.
    When my mom was initially diagnosed with lung cancer, we did not know how persistent lung cancer was.  Although we never considered not doing the lobectomy, knowing what I know now about lung cancer, I know my mom made the right choice for herself.  Despite having a recurrence, we are still thankful for the surgery because the recurrence may have been much worse without the surgery.
    I'm not trying to sway you either way.  I just wanted to give you the perspective of a daughter of someone who is and has been on oxygen off and on for awhile.  I know this decision is not easy for you, but I am confident you will make the right decision for yourself.
    Take Care,
    Steff
  16. Like
    LisaA got a reaction from Tom Galli in First visit with oncologist today   
    Thank you, Tom for a different point of view and the article. It's so hard to know which is the better choice
  17. Like
    LisaA got a reaction from LexieCat in First visit with oncologist today   
    Lexie I am 16 miles from the MSK Basking Ridge center and  1.5 hours from UPenn. If surgery is my choice the UPenn surgeon is one of the best in the U S.   If I choose chemo radiation Philly is too much of a drive for me daily.  The reason I went to UPenn as my first visit is because I will drive to Philly but never to Manhatten for surgery
  18. Like
    LisaA reacted to Lisa L in Pep talk needed   
    Lisa and Barb I am thinking of you both ..I am just starting this journey watching the dreaded nodule , hoping and praying that it is nothing, no uptake on the nodule or anything on the Pet Scan  gives me hope but the word spiculated scares the crap out of me. I’m not going to lie I am so anxious over this that I cannot give up my wine at this moment, I am sure at some point I will be forced too but I will cheers to you ladies and just know you are strong wonderful women and I think of all of you often.  Love and light ❤️
    Lisa
  19. Sad
    LisaA got a reaction from Tom Galli in First visit with oncologist today   
    Lexie, the surgeon's initial plan was to remove the upper lobe with larger mass followed by both chemo and radiation that would take care of the small nodule as well.   
    The need for future o2 was based on my low fev1 and the surgeon's prior experience with such cases.  My fev1 is lower than any other lobectomy patient he has done so while he is willing to do the surgery he explained that I would most likely need o2 due to lost tissue. 
  20. Like
    LisaA got a reaction from Tom Galli in Pep talk needed   
    As I am likely starting chemo and radiation next week, I too, am really scared.  So I understand what you are going through right now. Here is what I've been saying to myself today.... "Eye on the prize". Trying to stay focused and thinking of when this is all mere history.    I asked my oncologist today if I could have wine with dinner during the course of treatment and she said no.  Probably the most disappointing thing I heard today.
    You got this!  It will be over before we start planting our spring planters with flowers!
  21. Like
    LisaA reacted to Rower Michelle in First visit with oncologist today   
    Hi Lisa 
    I’ll pray for you tonight to find peace & guidance in your decision. Either way,  you’re  fortunate to have access to great medical resources.  Lexie has given terrific advice: Once you’ve made your decision- then have confidence in yourself to go forward.  
    There is progress being made with the development of targeted therapies in clinical trials now. With hope there could be an even better option for you in the future.  Hugs to you! 
    Michelle
  22. Like
    LisaA reacted to LexieCat in First visit with oncologist today   
    OK, thanks for explaining that.  
    I'm sorry it's such a complicated decision.  The only thing I can suggest is that when you DO make the decision, try your best to make up your mind that you will be OK with however it turns out.  It sounds as if there are pros and cons to both approaches, and given the fact that nothing is a sure thing (for better or for worse) either decision could be reasonable.  Choose whichever approach makes you the most comfortable, and then put your energy into your recovery efforts.  
    Sending a hug of encouragement!
     
  23. Like
    LisaA got a reaction from LexieCat in First visit with oncologist today   
    Lexie, the surgeon's initial plan was to remove the upper lobe with larger mass followed by both chemo and radiation that would take care of the small nodule as well.   
    The need for future o2 was based on my low fev1 and the surgeon's prior experience with such cases.  My fev1 is lower than any other lobectomy patient he has done so while he is willing to do the surgery he explained that I would most likely need o2 due to lost tissue. 
  24. Like
    LisaA reacted to LexieCat in Oxygen needed after lobectomy?   
    Have you discussed with your surgeon the possibility of a resection that doesn't remove the entire lobe?  You could still follow up with adjuvant chemo, I assume.  While lobectomy is usually regarded as the most effective type of surgery, from what I understand, more limited surgery can sometimes be done when there's a need to preserve as much lung tissue as possible.
     
  25. Like
    LisaA reacted to Tom Galli in First visit with oncologist today   
    Lisa,
    I think the important thing is both Stage 3A and 1B can be treated with surgery.  I understand why surgery is problematic after radiation -- radiation complicates tissue healing.  I had surgery after radiation and also had complications with healing so surgeons are moving away from that treatment.
    Let's look at your O2 concern from a different prospective.  Surgery is the most effective treatment for lung cancer.  Adjuvant chemotherapy often follows to clear the bloodstream.  These two treatments have high probabilities of yielding no evidence of disease (NED).  Chemo/radiation can be effective but note I say can be rather than is effective.  Prior to surgery, my pulmonologist projected I'd have enough lung function to live a normal life without supplemental O2.  But, after surgery and metastasis to my remaining lung, he projected I might need O2 after treatment.  I now live with about 38-percent total lung function and my life is near normal.  No marathon runs or mountain climbing in the Rockies, but I'm fine.  The pulmonology assessment is a projection not a certainty. Most importantly, with surgery being the best path to NED, you'll have life to enjoy even if it includes the burden of O2.
    Your KRAS mutation means your adenocarcinoma will not respond to targeted therapy.  Here is some information on KRAS.
    Of course I'll pray for you as you make this decision.
    Stay the course.
    Tom
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