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Deb514

Proper Introduction

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Want to say hello to everyone. I have read everyone's  posts. My name is Debbie and I was diagnosed with sclc mid March. My story starts in January when I was admitted to the hospital for a critical sodium level. I had labs in December and it  was normal. I then begged for a chest CT as well as a brain scan.  I am a ICU nurse at that same hospital.  I was in SIADH which causes you to deplete your sodium. My tumor was making ADH which caused me to urinate  more frequently and loose my sodium. I stayed in the hospital  3 days and was released on sodium pills and 1000 cc fluid restriction.  I made appointments  with  my PCP, my hematologist (was seeing for iron deficiency) and my Pulmonologist who I saw once a year for mild COPD. None of them  saw any need to do a Chest CT. In December  they found  a small nodule in my R lower lung thought  to be infection or inflammation. In December I had a stomach virus and they thought  I  aspirated  while vomiting.  I had to fire my PCP and found another one who did MRI of brain and CT chest.  My tumor  on CT March 7th was 7.5 x 5 cm.  I couldn't  see the Pulmonologist  until the 15. I was extremely  sick and O2 sats would fall to low 80s. On March 12 I went  to the emergency room and paged our hospital  Pulmonologist.  She immediately  came to me in the ER waiting  room. I had bronchscopy on March 13, saw oncology  plus had bone scan and abdominal  pelvic ultrasound and a port placed on 14th and chemo cisplatin and VP 16 on 15th to 17th. I certainly  had the right person  on my side and I so wish I had called her in January.  She took such good care of me. It is limited to right lung.  I am  having 3rd chemo today and have had 15 radiation treatments with  20 more to go. I am pleased to have found this site. 

 

 

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Hi Deb,
Glad you found the site.  I'm new here as well and scheduled for a wedge biopsy and (90% probability) lobectomy on Thursday, May 2nd.  But I can tell you that this site has helped me more than I could expect.  There are so many experiences and stories of recovery here that it has helped me to face this disease differently than I could have hoped for.  I pray you'll find the same kind of support here.  While I'm just beginning my tale I can already say that your situation reinforces the fact that we have to be our best advocates and keep tabs on what is being done for and to us at all times.  I look forward to watching a successful outcome unfold for you.

Lou

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Hi Deb.  Welcome.  That’s quite a journey you’ve had so far.  Unfortunately it’s not uncommon, especially with something as elusive as lung cancer and the other ailments you’ve mentioned.  It is a surprisingly difficult disease to diagnose given where it is in the body.  It took me almost a year and surgery to get a def diagnosis.  As Lou said and you’ve done, advocating for yourself or having someone who will advocate for you makes a big difference.  Good luck with your treatments and check in here to give us updates.   

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Absolutely  we all need to either have an advocate or try as I did to advocate for my self. I just kept trying till I finally got someone to listen. SCLC is so fast spreading that often isn't  found till it is extensive. 

Kinda bummed  today no chemo this week. My counts were down. Hopefully  they will be up next week.  

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Hi Debbie-

Just wanted to say hello and let you know I’m also a member of the misdiagnosis club. By the time we got to the biopsy (after 9 PCP visits for allergies that didn’t exist) the radiology interventionist thought I had aspirated something into my right lung.  My PCP was following the Harvard cough protocol.  She had also wanted to try GERD meds.  Yes, I fired my PCP too.  It was a very smart nurse practitioner that ordered a CT scan. 

I receive treatment at a major academic center where now the young medical students are taught to be far more aggressive in evaluating persistent coughs.   I’ve been interviewed by two medical students.  I really hope some of these “best practice protocols” change more quickly.  

I hope your counts come up quickly.  Glad to have you here! 

Michelle

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Yes that needs to happen. I do intend to meet the hospital  doctor who saw me in January. Not to be visious or mean. I want  her to  know  what she missed. It might save someone else's  life. My SCLC is limited but had I not pushed on it could  of spread. So very thankful. 

Once to meet you,

Debbie 

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