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Deb W

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  1. Thanks
    Deb W reacted to Tom Galli in 1st Scan Post Surgery on Wednesday   
    Debbie,
    Sometimes, I think about a medical insurance CEO diagnosed with lung cancer and being denied a scan. Now that might change things!
    Yes it is scanziety season for me. My scan is September 9th and I'll wait a week for results. I've had so many scans in 15+ years that I believe I'm radioactive! Since there is no cure for scanziety...
    Stay the course.
    Tom
  2. Thanks
    Deb W reacted to RonH in 1st Scan Post Surgery on Wednesday   
    Deb W -
    Does your insurance have an appeal process? I have been getting CT's about every three months during the post chemoradiation period, the again during the post Chemo period and every 3 months during my year of immunotherapy which I am nearing the end of. I've never had them deny coverage for a CT. I don't know but my employer is "self insured" and the insurance company just "manages" the health insurance for them, so they may be a little more lenient, but they still are a pain in the you know where to deal with. But I've had more than one initial denial overturned (usually by an insurance company representative who didn't bother to read our specific policy first and just gave a generic answer of no that is not covered). 
    Likewise, I can handle the CT's but truly hate being stuffed into that MRI. I am a very large guy so it is extremely claustrophobic in there. For the next one this next Friday where I have a CT w/wo contrast followed afterwards by an MRI w/wo contrast, the ONC suggested that I take a sedative / anti-anxiety med before hand, but to be sure to bring a driver to get me home. Although I rarely if ever take any anti-anxiety meds as I resist them whenever possible due to the tendency to become addictive to many people, I may take one Friday morning.
    My last MRI was over a year ago, and I truly believe the only way I managed so long in there was due to the classic rock playing rather loudly in the background. Luckily I do not have much of a wait to see and read the Radiologists findings online, usually within 24 hours but this time I made a mistake scheduling the scans on a Friday morning and the results likely won't be posted till Monday about the time I am scheduled to see the Onc. I am sure that the "Scanziety" will have its way with me over the weekend.
    Hang in there.
    -Ron
  3. Thanks
    Deb W reacted to Rower Michelle in 1st Scan Post Surgery on Wednesday   
    Hi Debbie-
    Yes, this is a very common situation with a silver lining. A MRI is an excellent diagnostic tool in this situation, I wouldn’t be concerned about the insurance coverage determination. 
    It seems the spinal MRI is part of this gig, ordered out of an abundance of caution.  My ALK peer mentor had one shortly after treatment started, I had one in February too. False alarm in both cases.  
    You’re very active & hopefully all this is will be a gentle message to dial back.  
    Keep us posted. 
    Michelle
  4. Thanks
    Deb W reacted to ColleenRae in 1st Scan Post Surgery on Wednesday   
    Hi Debbie,
    Completely share in your anxiety... My 2nd post-op CT is scheduled for 08/27 and I'm having a very difficult time containing my anxiety / fears.  Fortunately I will have the CT and meet with my surgeon an hour later for the results, so I am grateful I won't have to wait.  It will be a long day. Over a two hour drive there and then back again. I'm just hoping I don't cry while driving!
    I had my right upper lobe removed in October 2018; no chemo or radiation. First follow-up scan was in February. My surgeon and another cancer clinic both felt the scan looked fine but my local pulmonologist is certain there's been a change in a couple of nodules in the upper left lung and said he believes it's another slow growing malignancy... So, I am very anxious to find out what the consensus will be this time. I hate every minute of this, believe me - as I'm sure all of us do.  I have tried very hard to ignore my fear, but I've found this past month, as the CT date draws near, that I have been much crabbier, more negative in my thoughts (oh how I hate that!), restless, etc.
    I have not had a problem with my insurance and the CT's... My first one was only 4 months following surgery; this one we're waiting exactly 6 months.
    I don't blame you re: the MRI... I had one many years ago and did okay with it. Most recent one I had was very difficult... I had a serious panic attack and they had to stop. They wanted to reschedule with me being semi-medicated, but I insisted we try again, that I could handle it. I found that the trick for me was to keep my eyes closed the entire time and focus on the music... When I open my eyes I really freak out due to the tight, enclosed space.
    Good luck with this. Glad you can get your results soon and hoping you get good news. Will keep you in my thoughts / sending positive wishes your way...
     
  5. Like
    Deb W got a reaction from RonH in 1st Scan Post Surgery on Wednesday   
    Hi everyone,
    I had a few new  symptoms so my oncologist ordered a CT with contrast of my spine (surgery was in March so CT was moved up but still within the 4-6 month window). My insurance denied coverage and will only cover a MRI.  Is that common?  I really hate the MRI's, and  as many of you stated, keeping the anxiety at bay is a struggle.  I have the results appointment on Thursday so I don't have much of a wait.  I've read so many of your stories about the stress of scans and they are so helpful to me...thank you.
    Debbie
  6. Like
    Deb W got a reaction from Tom Galli in 1st Scan Post Surgery on Wednesday   
    Hi everyone,
    I had a few new  symptoms so my oncologist ordered a CT with contrast of my spine (surgery was in March so CT was moved up but still within the 4-6 month window). My insurance denied coverage and will only cover a MRI.  Is that common?  I really hate the MRI's, and  as many of you stated, keeping the anxiety at bay is a struggle.  I have the results appointment on Thursday so I don't have much of a wait.  I've read so many of your stories about the stress of scans and they are so helpful to me...thank you.
    Debbie
  7. Like
    Deb W got a reaction from Tom Galli in Post op   
    Fantastic news!
  8. Thanks
    Deb W got a reaction from Steff in Wedding bells   
    Congrats!
     
  9. Like
    Deb W got a reaction from Roz in Post op   
    Hi Kinsbourg,
    I had an upper left lobectomy March 22.  I had VATS robotic surgery.   I went for short walks the first week home and gradually increased them.  I started playing tennis again in June and play a couple of matches a week now combined with other exercise on alternate days.  After surgery, I never thought it would be possible to do all the things I did before.  The doctors told me I would, but I didn't really believe them!  Managing energy is still a challenge for me at times.  I can never seem to tell in the moment when I've overdone it and then I pay the consequences of feeling extremely fatigued later.  I am getting to know my limits a  little better as time goes by.  Wishing you all the best on your upcoming surgery.
  10. Like
    Deb W got a reaction from LouT in Got a call on my first scan result   
    That's great news Lou!
  11. Like
    Deb W got a reaction from LouT in The Results are in!   
    Great news Michelle!
     
  12. Like
    Deb W got a reaction from LouT in Post op   
    Hi Kinsbourg,
    I had an upper left lobectomy March 22.  I had VATS robotic surgery.   I went for short walks the first week home and gradually increased them.  I started playing tennis again in June and play a couple of matches a week now combined with other exercise on alternate days.  After surgery, I never thought it would be possible to do all the things I did before.  The doctors told me I would, but I didn't really believe them!  Managing energy is still a challenge for me at times.  I can never seem to tell in the moment when I've overdone it and then I pay the consequences of feeling extremely fatigued later.  I am getting to know my limits a  little better as time goes by.  Wishing you all the best on your upcoming surgery.
  13. Like
    Deb W reacted to Rower Michelle in White House Petition for Lung Cancer Funding   
    Hi All, 
    The ALK Positive Outreach Group has initiated a petition to the White House to support additional funds for lung cancer research.  Please consider signing and posting on your social media counts. 
    Thanks!  
    https://petitions.whitehouse.gov/petition/1-16-americans-will-be-diagnosed-lung-cancer-only-6-federal-research-dollars-used-lung-cancer-research-0
     
     
  14. Like
    Deb W reacted to Curt in Post op   
    Hi Kinsbourgh.  I had a right upper lobe lobectomy on February 26.  It was done via VATS.  They get you up and walking in the hospital the day of or the day after.  The big milestone is getting your chest tube removed.  That provided a lot of relief for me and was when I was allowed to go home.  One thing I learned the hard way is to keep up with your pain medication.  I felt pretty good after my surgery and let my pain medication wear off without saying anything to the nurses.  Turns out I was feeling pretty good because the pain medication works.  It took a little while to get the pain back under control.  The nurses were not happy with me.  Mine was removed and I was discharged from the hospital after three days.  Once home I spent three or four days going from my bed to an arm chair next to my bed.  I found that a wedge pillow was helpful while I was in bed and that carrying a small pillow under my arm was helpful with keeping my arm off my incisions on my right side.  It also helped to squeeze it when I had to cough, sneeze or hiccup.  All three of those hurt, coughing is good for recuperation though.  I walked a lot before and after surgery.  I used the spirometer breathing device a lot as well.  It was a week before I stopped pain meds and just used Tylenol, two weeks before I was up and moving around, three before I went back to work for a few hours a day and four before going back full time.  Fatigue was a big thing for me.  I was really surprised with how tired I was.  I’d never felt that level of fatigue before.  I had a lump/tickle in my throat that made me cough for a few months.  I thought it would never go away but it did.  Ricola helped while I had it.  I do still have some muscular pain in my right chest when I cough, but it’s not bad and aim sure it will go away.  Generally I had visions of being handicapped by this surgery.  Always being out of breath and not being able to do the things I’d done before.  It takes a while but I’ve gotten back to it all.  I coach my kids baseball teams, play sports with them, swim laps in the pool, run, bike all without issues.  My lung capacity is back to where it was prior to surgery.  It is a slow recovery, takes time and some effort but you do recover.  What I imagined and the reality were very different.  It is not as bad as you are imagining.  If you work at it you will recover and be back doing the things you do now within a few months, unless you run marathons.  You may not run any marathons for a while.  Hang in there.  You’ll get through it.  Post any questions or concerns here.  
  15. Like
    Deb W reacted to BridgetO in Post op   
    hi Kinsbrough,  Curt and Deb have given you some very good information. My experience was not too different. I had VATS lower right lobectomy in November 2016. My surgeon told me that I probably wouldn't notice a difference in my abilities, unless I was planning to run a marathon, which I wasn't. He was right. 
    I was released from the hospital the day after my surgery with the chest tube in place. It seems like  hospitals have different policies- it used to be that they would always keep you in until the tube came out. My tube was in for 10 days because of an ongoing air leak. I did fine at home. I was able to walk around the neighborhood with the tube and its bag and valve covered by a big raincoat. The tube was uncomfortable and could be really painful if I moved the wrong way. I was relieved to have it out and I didn't need any opiate pain meds after i was out.
    One thing I would recommend is that you get a wedge pillow-- Sleeping with your upper body elevated makes it easier to breath after surgery. I tried at first propping myself up with regular pillows but ended up with a stiff neck. The wedge pillow solved the problem. I got mine from a store that sells medical devices, but you can also find them online.
    As surgeries go, the VATs lobectomy is fairly easy. I wish you all the best. Let us know if you have any specific questions.
    Bridget O.
  16. Like
    Deb W reacted to LouT in Post op   
    Kinsborough,
    Welcome to the forum.  Sorry you need to be here, but glad you found us.  My situation is not too different from Curt's (including not taking my pain meds, so be vigilant and take them as prescribed).  In my case I had a lobectomy (VAT's) of the lower-right lung on May 2nd of this year.  Well, it's almost three months now and I am back to doing 5 miles/day on my treadmill along with a pretty good weight workout afterward.  I do notice some changes, but I had already been diagnosed with mild COPD (Gold, Level A, which indicates small impact and little chance of worsening) so I do sometimes feel a difference, but that seems to be diminishing over time.  I will say that for the first 5-6 weeks I had times when I needed to lay down and take a nap or just rest after doing anything strenuous.  I don't feel that need anymore and the most lingering thing I have is areas around my rib cage where I have numbness, occasional burning feeling, pain and/or some combination of the three.  My doctor had already told me to expect some of that and that it would take extra time (up to months) for all of that to go away.  Otherwise I feel very good.  I go for my first follow up scan in August (fingers crossed) and then a scan every six months for the first two years.  If no recurrence then it will move to an annual scan. 
    Hang in there and you may be surprised that the surgery is not as terrible as you expect it to be (that was my case).  Take your time recovering and stay as active as you can without overdoing it.  
    Let us know how it goes once you are able and I'll keep you in my prayers.
  17. Thanks
    Deb W got a reaction from Rower Michelle in The Results are in!   
    Great news Michelle!
     
  18. Like
    Deb W reacted to Rower Michelle in The Results are in!   
    All good news to report, before the doc closed the door, he said, everything is looking good.  My brain MRI is normal, the CT shows continued shrinkage, the spinal mets are healing quite nicely.  Docs literal words were "so we stay the course".  
    Next scan in three months, this time, my scheduler has the scan the day before the appointment, so NO WAITING.  Thanks for helping me get through this one.  I still have this ridiculous headache, so Flonase can finally get going.   
    Rowing for me this afternoon!  Woo hoo!   
  19. Like
    Deb W got a reaction from BridgetO in Post op   
    Hi Kinsbourg,
    I had an upper left lobectomy March 22.  I had VATS robotic surgery.   I went for short walks the first week home and gradually increased them.  I started playing tennis again in June and play a couple of matches a week now combined with other exercise on alternate days.  After surgery, I never thought it would be possible to do all the things I did before.  The doctors told me I would, but I didn't really believe them!  Managing energy is still a challenge for me at times.  I can never seem to tell in the moment when I've overdone it and then I pay the consequences of feeling extremely fatigued later.  I am getting to know my limits a  little better as time goes by.  Wishing you all the best on your upcoming surgery.
  20. Like
    Deb W got a reaction from Curt in Post op   
    Hi Kinsbourg,
    I had an upper left lobectomy March 22.  I had VATS robotic surgery.   I went for short walks the first week home and gradually increased them.  I started playing tennis again in June and play a couple of matches a week now combined with other exercise on alternate days.  After surgery, I never thought it would be possible to do all the things I did before.  The doctors told me I would, but I didn't really believe them!  Managing energy is still a challenge for me at times.  I can never seem to tell in the moment when I've overdone it and then I pay the consequences of feeling extremely fatigued later.  I am getting to know my limits a  little better as time goes by.  Wishing you all the best on your upcoming surgery.
  21. Like
    Deb W got a reaction from Rower Michelle in Post op   
    Hi Kinsbourg,
    I had an upper left lobectomy March 22.  I had VATS robotic surgery.   I went for short walks the first week home and gradually increased them.  I started playing tennis again in June and play a couple of matches a week now combined with other exercise on alternate days.  After surgery, I never thought it would be possible to do all the things I did before.  The doctors told me I would, but I didn't really believe them!  Managing energy is still a challenge for me at times.  I can never seem to tell in the moment when I've overdone it and then I pay the consequences of feeling extremely fatigued later.  I am getting to know my limits a  little better as time goes by.  Wishing you all the best on your upcoming surgery.
  22. Like
    Deb W got a reaction from Claudia in Diagnosis by surprise   
    I had my annual check-up and told my PCP that I had pulled a muscle in my mid-back.  She ordered an x-ray and then a CT....bronchoscopy....PET.  Diagnosed with Stage 1B.  Had absolutely no symptoms.
  23. Like
    Deb W got a reaction from Tom Galli in New Symptoms That Feel Like the Old Ones   
    Thank you.  I'll see what the oncologist says.  My thoracic surgeon doesn't have the best personality, but very skilled.  So, I am hoping to find an oncologist with some level of compassion and warmth.  
    I do think this mid back muscle pain is probably caused by exercise or over use.  I think I'm so sensitive to it because that back pain is what prompted my PCP to order a x-ray and then came the cancer diagnosis.  The fact that the pain went away after surgery made me think that the mid back pain on the right was somehow related to  cancer.  So, when the pain came back I immediately thought of a possible recurrence.  By the way, I used to be a regular user of lidocaine patches prior to surgery and I'm back on them again!
    I've gone from a person who used to be very unconcerned about aches or pains and now I seem to be noticing every little thing.   I really hope I like the oncologist and feel comfortable with him.
     
     
  24. Thanks
    Deb W got a reaction from Rower Michelle in Hoping for a false alarm....   
    Sounds like you have a good doc Michelle.  Hoping all goes well with the scans.  🙏
  25. Like
    Deb W reacted to Rower Michelle in Hoping for a false alarm....   
    Yeah that’s right!  My brother in law is visiting this week. He inspected my trike tires and said the tires are too low- duh. I just thought I was slow.  After that adjustment I’m pretty close to my pre cancer speed!  Row camp is next weekend, it’s going to be quality over quantity! 
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