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  1. Like
    ColleenRae got a reaction from Tom Galli in Surgery on Monday   
    I think it's amazing that you could even write an update this soon... That, to me, is encouraging in and of itself!  I still think it's weird that part of my lung is gone (2 yrs since lobectomy)! I think the positive points that Babs pointed out pre-surgery are good to hang onto. Keeping you in my thoughts and hope you continue to do well each day. 
  2. Like
    ColleenRae got a reaction from Roz in NED by Email....   
    Tom - You post so often helping others, I'm ashamed I did not even know you recently had a scan yourself. This IS excellent news.  Couldn't happen to a better guy! Very happy for you.
    Sorry your oncologist is retiring, but I'm sure he was happy to give you this, his final report, with such good news.
    Okay, now that you and Teri have your trademark sign-off, the rest of us are going to have to get creative...!
  3. Like
    ColleenRae got a reaction from Lisa Haines in Insurance Denials!   
    Excellent news, Lisa!  Very happy to hear this outcome. Will be sending positive thoughts your way for your surgery
  4. Like
    ColleenRae reacted to Babs in Surgery on Monday   
    In my opinion, it’s definitely worth it!  Look at the positives.  #1, no lymph node involvement.  #2, clear brain MRI. #3, 1 cm and can have surgery.   I know it’s hard, SO hard, but focus on the positives!  Good luck on Thursday.  You’ll have a lot of people thinking of you,
  5. Like
    ColleenRae reacted to Sheryl E in Surgery on Monday   
    You always speak the truth, and your words always give me hope and comfort.  I run around on these boards just looking for your comments, whether they apply to my type of cancer or not.  Thank you for being here.  You just have no idea how much it helps me.  
  6. Like
    ColleenRae reacted to Tom Galli in Surgery on Monday   
    You have limited stage SCLC and a single small tumor. Surgery is our best method of dealing with an early detection. Post surgical chemo will help police recurrence. 
    I well understand your concerns. All lung cancer has a recurrence risk and SCLC especially is noted for it. Last Saturday, I was paired with a lady at our ILCSC with 6 years of progression free SCLC survival after the same treatments you are having. 
    I do hope your surgery goes well. Let us know the results.
    Stay the course.
  7. Haha
    ColleenRae reacted to LexieCat in NED by Email....   
    GREAT news! Heck, I'll take good news if it comes by friggin' carrier pigeon. 
    Since you've co-opted "stay the course," I'm adopting "rock on." 😎
  8. Like
    ColleenRae reacted to Tom Galli in NED by Email....   
    I had my consultation at 1 pm with my oncologist today but the good news came by email this morning: "Tom, I just reviewed your CT scan from 8/31/2020 and there was nothing new on it. Everything appeared to be stable so no evidence for recurrent cancer. I thought you'd like to know."
    So we had a pro forma consultation that unfortunately included news that he's retiring from practice and we discussed who I'd like to see when he retires.
    A number of us were getting scans today and I hope everyone's news is as good as mine.
    Stay the course.
  9. Like
    ColleenRae got a reaction from LexieCat in Precision radiation for lung nodules   
    Thank you, Tom & Teri.  Your support helps me even more.  I have learned so much from both of you since discovering Lungevity two years ago.
  10. Haha
    ColleenRae reacted to Rower Michelle in Insurance Denials!   
    That is AWESOME news!   If it’s any consolation, three of our four parents have been hospitalized since the pandemic (my Mom was at the peak in NJ) all of them were discharged with no issues.  Hospitals seem to have finally gotten better infection control.  As Devo would say, go forward move ahead!!”  Whip it, whip it good! 
  11. Like
    ColleenRae reacted to Lisa Haines in Insurance Denials!   
       Just received the call and my surgery as now been APPROVED (as it should have been all along).   They still can't even explain why it was denied, which just goes to show how vital it is to be our own advocates.   Our medical care is vital and it's so important for us to fight for what we know is right and for the care that we deserve.
        Thank you all for your SUPPORT!    I'm so happy that I do not have to file a formal appeal and go through that long tedious process.   
    PS:  Now I can focus on the surgery and recovery and finally being able to walk with a cane again.  I'm still nervous about surgery (and it's risks, but I know that this is something I could not put off any longer, without potentially causing more damage to my hip).   It won't be easy, but it'll be worth it in the end.  And happily, we have NO new COVID cases here this week, meaning the timing is very good for safe surgery.  
  12. Like
    ColleenRae reacted to Tom Galli in Precision radiation for lung nodules   
    My CyberKnife treatments totaled 3--once per day for 3 days, 30 minutes per session. Fiducial placement for me was a significant emotional event because I had one lung but it was a very short day surgery procedure (in at 7 and out at 11).
    Sadly, medicine is not immune to "up selling". Your course of action is absolutely the right thing in my mind.
    Stay the course.
  13. Like
    ColleenRae reacted to LexieCat in Precision radiation for lung nodules   
    Sounds like a GREAT outcome, Colleen. You've come a very long way, yourself, in handling the uncertainty that's inherent in this stuff. Glad you went for that second opinion--the local clinic would not have inspired a lot of confidence in me, either!
  14. Like
    ColleenRae got a reaction from Judy M2 in Precision radiation for lung nodules   
    Just an update...
    I had my second consult with a Radiation Oncologist in Seattle - same hospital network where I had my lobectomy in 2018. I am so glad I got a second opinion.  Loved the R.O. I spoke with. The second sentence out of his mouth was that he was really surprised that our local cancer center was wanting to treat this suspicious spot so soon. He actually laughed and said how tiny it was. He did not talk at me - he talked with me. He did not dictate what the course of action would be but rather what route he believes is warranted - as long as I am comfortable with the plan. 
    In a nutshell - He agrees with my surgeon that this can wait. They do not want to over treat. He is very comfortable in waiting another 12 months for my next CT scan and stressed this is not life threatening. He said the bigger risk is in a recurrence in the right lung where I had my lobectomy, and scans have fortunately been showing NED. In 12 months, we'll see what changes have taken place. He said I will likely need to treat this with radiation, but they'd like to hold off for as long as possible. I will likely require fiducile markers. He will treat it with their Cyberknife equipment, probably 3x over a 3 day period. I asked him why my local clinic told me 5 sessions over 2 weeks (and the local clinic told me Cyberknife would not work as well; but they don't have Cyberknife)... He was quite blunt and said "Because they can get the maximum revenue by scheduling five treatments".  That summed up a lot for me. He also said he has seen three patients from my city in the past week (who are not going to our local cancer clinic for treatment). I told him how I received a call last week from the nurse navigator from our local cancer clinic, "reminding" me that I have cancer and being very pushy about my scheduling and starting my radiation treatments...  I was really taken aback by that call. Left me angry and in tears. I did not need to be "reminded" that I had/have cancer. I felt threatened and bullied because I said I wanted a second opinion.  After that phone call I had no desire to seek medical care for this locally. I am very grateful I can still access care in Seattle.
    The Seattle R.O. did not sugarcoat anything for me. He would not use the word "cure" (another point in my book!) either. We did talk about the likely possibility of treating lung cancer long term with spot welding treatments. He was optimistic that there may be new treatments in the not so distant future. What he helped instill in me was that they will not over treat; they will continue to watch and assess in order to help maintain my breathing and quality of life. I did not feel like this was a death sentence nor did I feel alone in this. He will let my surgeon know what we discussed and said he would like BOTH of them to follow me at this point. Am I nervous about waiting? Heck yes... especially when life has revolved around CT scans every few months for the past four years. To go one year will require a mindset adjustment. I'd like to have a year off from this, if possible, and even live a little bit in denial if I can
    I know there are no guarantees and this can all change, but I felt very grateful today. I know I will never be "cured" but there is also a very good chance that I might be able to live many more years with this. I am very glad I got a second opinion. It helps enormously to "connect" with your doctors.
  15. Sad
    ColleenRae reacted to Lisa Haines in Insurance Denials!   
    Thanks Tom -
      I will absolutely need his help if this gets denied -- I've run out of time to reach him or the surgeon today, but did talk to the surgical office again and told them if they need info from my Oncologist to let me know.   The surgeon and PA's were all in surgery today, I also left message for them to call me so I could provide them more medical history to justify this, but no one called back.  I do not think they are in the office at all on Monday.  Maybe I'll hear in the AM?  It is frustrating to not be able to talk to the Surgeon or PA prior to the review.  I've left two message, but I do not have a long term history with this office or surgeon.  I wish I did because I'd have more confidence in them.  Right now I've only been there twice.  Definitely not like the relationship I have with my Onc or my PCP.
      Hoping for the best...
  16. Thanks
    ColleenRae reacted to Jennedy in Radiation oncologist #1   
    @ColleenRae my best friend is a nurse (charge nurse neuro) at a local hospital and talks about how patient satisfaction drives their income. You need to make a point to call out the snarky nurse. I understand that we all have bad days but that is unexceptable. I hope your second opinion goes well.
  17. Like
    ColleenRae reacted to Rower Michelle in Insurance Denials!   
    My company was an international self insured organization.  I called the  HR Insurance Liaison who had the reputation of a pit bull.   The pulmonologist was able to do a peer to peer to get the PET scan approved (was denied by a CLERK) who didn’t review all the medical records.  
    My employer demanded the triplet be authorized without a peer to peer. 
    The biomarker studies were also denied after exhausting all the appeal options (final decision made by a doc board certified only in Internal Medicine).   Foundation One wanted me to pay & I refused (first an administrative denial for provider “failing” to pre-certify then a medical necessity denial!!).  I refused to pay the bill and never heard about it again. 
    Ultimately my employer fired Cigna & Evicore for such bad service, evidently my experience wasn’t isolated.  
    Lock and load.   
  18. Like
    ColleenRae reacted to Lisa Haines in Insurance Denials!   
    Oh NO, that is not happy news.   How in the world do they get away with this?    Now I am more concerned that this may be easy since I'm dealing with EviCore!   In the past they had denied a few of my CT Scans (non chest scans, but my Oncologist was very quick in getting them to overturn these decisions.
        Hopefully the surgical office will be as effective.   Unfortunately, I do not have a long term relationship with the Surgeon like I do with my Oncologist, so I can ONLY hope that are as stubborn and determined as I am and will make sure they have whatever data they need to quickly win this review. 
       I will fight this and make all kinds of noise about it, until they approve it, but right now, I ONLY have DAYS to get this overturned and IF they make me postpone my surgery, I will be even more upset and then will being sure that they will not forget me.  I'm also contacting my husband's Company Aetna Liason and she's helped me with past issues.   Aetna can be a real pain, but in the end, I always have won my appeals with them and they've covered everything that was in question, but it takes a lot of work and energy and I swear they make it as difficult as possible, HOPING the patient/insured will give up.   I took me almost a year to get all my Port Flush claims resolved, and I'm not about to let this go a year.
       I will also contact that State Insurance Commissioner,  if needed and have LUNGevity and the other LC Groups support me, in any way they can, especially if there is ANY sign that this is being denied because of my cancer diagnosis.     I worked in Patient Accounts for many years and used hand the "pre-certs" for surgeries - I'm quite familiar with some of these tactics and do believe in some cases, they are trying to intimidate the patients to give up, but that will NOT happen with me.  They picked the wrong person.   Unfortunately, as of now, they hold all the cards, so I'm trying to give them a chance???   
      Thanks for you input, I assume they overturned that decision for you?    Geesh!!
  19. Like
    ColleenRae reacted to LouT in Radiation oncologist #1   
     This oncologist sounds like a keeper to me.  He seems to have checked all the boxes and even looks forward to input from other opinions.  I know we should expect this from our doctors, but we don’t always get it.  I’m glad you did.  
  20. Like
    ColleenRae reacted to catlady91 in Radiation oncologist #1   
    The doctor sounds really positive and confident. It's always important having the right doctor. It's fantastic he wants to treat you with curative intent! There's always a silver lining. You sound like a super positive and strong person. 
  21. Like
    ColleenRae reacted to LexieCat in Radiation oncologist #1   
    Today I met for a consult with radiation oncologist #1, at my primary treatment center (MD Anderson-Cooper). I liked him VERY much. He looked so darned YOUNG in his pictures, but much more mature with a mask on, lol (I like to think I look younger with the mask on, but my COVID gray roots give me away).
    He was immediately fine with my recording the visit--and also offered to do a conference call (which I'll probably do once my daughter is here). I liked his manner--he started off by asking me to tell him about myself and what I was thinking about in terms of what I was hoping to achieve. I explained my understanding of what's possible and what we hope will happen and that I understood there were no guarantees and my hope was to have as many good years of my life as I could. He said, "Oh, wow, you're the IDEAL patient!" 
    I told him I believed the molecular studies were back but that I hadn't seen them. He looked them up and told me I have no mutations (boo) and a PD-L1 level of 5%. 
    He thought I was a great candidate for radiation therapy and that he thought we could go at this with curative intent. He discussed with me the possibility of doing chemo/immunotherapy concurrently with radiation, but he said his thought was to do the chemo/immunotherapy first and when chemo was done, start radiation. His rationale was that chemo might reduce the tumor and lymph nodes to the point where there would not be so much radiation to the esophagus. He put up the PET scan so I could see where the tumor and lymph nodes were in relation to the esophagus and explained that doing the chemo first might reduce the likelihood of a large portion of the esophagus being hit with radiation. He said the sacrum would be separately radiated with SBRT.
    I told him I was going for a consult with RO #2 (Penn Medicine) next week because I wanted to see if there were any benefit to proton therapy and also just to get another opinion. He said he'd be very interested to hear what they have to say--no defensiveness whatsoever. He said he tended to think proton therapy might not reduce the risk of side effects much but he encouraged me to find out. He also said he'd be happy to discuss my case with RO #2. 
    I mentioned that I had been offered chemo after surgery but turned it down. He said he thought he would have made the same decision. He also said he thought there was a good chance this wasn't a recurrence of the original cancer but an entirely new one.
    So I have to re-listen to the recording and make some notes, but I think that was most of what we talked about. I'd feel very comfortable with being treated by him. He talked about the results of various studies and trials and spoke to me as a well-educated patient. I felt like we had good "chemistry"--which really helps. 
    Next week I meet with my oncologist on Tuesday (can probably plan to start chemo/immunotherapy, schedule procedure to insert the port) and then with RO #2 on Friday.
    Now that all the testing's done, I'm anxious to get going with this.
  22. Like
    ColleenRae reacted to Sabacat in Insurance Denials!   
    Really strange!!! Is it possible they’re saying that you didn’t have a long enough or well-documented enough period of failed conservative therapy?  Have run into that occasionally, but that wouldn’t address the ‘it wouldn’t help your condition’ comment.  OR, are they saying that because of fibromyalgia, which I know they can be pissy about.  Sounds clear that you have well documented osteoarthritis, so the dobro should be a moot point.  Sigh.  This must be horribly frustrating. Please let us know what you learn tomorrow.  If they persist in denial, I’d get an attorney involved.
  23. Like
    ColleenRae reacted to Tom Galli in Insurance Denials!   
    Yes unfortunately. I have a herniation of the C-3/C-4 disk that is painful and causing numbness down my right arm and loss of strength in my thumb and right finger. I had a diagnosing MRI in February before COVID shut down our medical system. Since then, I've had telemedicine consultations with my surgeon and although some surgeries are taking place, we decided my situation is not as bad as exposing myself to COVID.
    So I have kind of a joint denial. In the meantime, I have to tolerate the pain and discomfort that I know you are feeling. But, at least I can walk around without pain. My wife is starting to get upset at my dropping our china when I unload the dishwasher (weakness in right thumb) so I've had to retrain to use my left hand/arm.
    In my case, this was a decision between my surgeon and I. I have Medicare and Tricare for Life as a secondary. Insurance denial was not a factor. I think I'd write the Mass insurance commission. The chemo excuse seems weak to me.
    Stay the course.
  24. Like
    ColleenRae reacted to Rower Michelle in Insurance Denials!   
    I hate insurance companies.... Tom and I wrote a blog (in this Forum) about how to fight insurance denials.  Break out the big guns and fight.   
    @Tom Galli I seem to remember Katie telling me about a resource Lungevity hooked Linnea Olson up with a few years ago??  Lisa don’t give up hope...
  25. Sad
    ColleenRae reacted to Lisa Haines in Insurance Denials!   
    My R hip replacement surgery was just denied and it makes no sense as I have severe degeneration and the same insurer paid and approved my L hip surgery back in 2015 -- Only difference is that then I did not have cancer??  My surgery is only 15 days away and desperately needed.  I've waited months and now is the perfect time with Covid numbers down.  I've already had all my pre op tests and visits all that I needed was my Covid test currently schedule for 3 days before surgery!
    The denial states non medically necessary and can't improve my condition.  That's CRAZY!  I'm fighting but time is a huge issue....!   Not to mention added stress and upset.  My husband already booked time off and my family made changes to help me...
    WISH me luck!!
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