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Fighting the good fight for my little brother


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Posted

My little brother has just been diagnosed with  IIB NSCLC, and I'm joining here to get a crash course on the disease, how we can fight it, and how best to support him through this battle.

My brother is 45 years old and has never smoked. He was a high school and college athlete who stayed active in his adulthood, with generally great health. He had a hip replacement 8 years ago to repair the damage done during sports, and he  was a trooper through what ended up being a tough surgery and recovery. We are a family of redheads so aenesthesia & medicines work a bit differently in our systems. My brother has an awful tendency to wake up mid procedure. He got through it though. We come from a tough background, and have learned to survive just about anything that get thrown our way. 

This winter he had what the docs thought at first was pneumonia, or even valley fever as he lives in Phoenix.

Thankfully he has a stubborn Doctor, who in April decided to look at bit deeper, and came back with suspicions of cancer. A biopsy followed with a definite NSCLC diagnosis on May 1. And being my hard headed strong willed brother, he woke up midway during the biopsy. 

Essentially he has 3 tumours in his right lung, and is scheduled to meet the surgeon on May 16th. My brother said as long as his brain scans were clear they are suggesting a lobectomy and segmental resection? He said something briefly about one of the tumours being close to his heart/artery?  something I need to clarify. I'm still learning about the tests he has had so far- so forgive my ignorance of correct terms....I've got a lot of learning to do in a very short period of time.

His brain MRI came back clear yesterday, which we are celebrating that small good news.

So now we have a 2 week window of waiting., and we're all trying to get ready. My brother's been signed out of work for up to 26 weeks and is organising his life as best he can, so he can be prepared for surgery and recovery. He recently reunited with his college sweetheart, they dated for several years in school, but ended up going different directions once they left school and started their careers. 20 years later they ran into each other by chance, and now they've been living together for 18 months now. She's a wonderful woman, and I always knew she was 'The One' for him. I know she'll be a huge support to him through this tough time.

I'm a 2x cancer survivor, (just melanoma) and recently won an 8 yr battle with RA and am in full remission. Now I'm thankful to have gone through this as it will help to understand a little bit what my brother is facing.

time to put on my battle gear.

i would trade spots with him in a second.

 

 

Posted

Hi, and welcome!  Are all of his tumors in the same lobe?  I'm wondering, because of the mention of lobectomy AND segmented resection.  Have they discussed whether he is a candidate for VATS surgery (less invasive--done laparoscopically)?  It could be that because of the location of the tumors that it wouldn't be possible, but if he is, it's not a bad surgery to recover from.  The "open" surgery is a little more daunting physically, but there are lots of folks here who have done just fine with it.  

With Stage II, he will get a course of chemo and/or other therapy, depending on whether his tumors have specific markers.  Do you know if they've checked for markers?  

Others here will be along shortly who have more knowledge about non-surgical treatments.  I was fortunate enough to be Stage Ib, so surgery is the only treatment I needed.  I go for scans twice a year to make sure everything stays happy.  

 

Posted

 Hi Kim and welcome,

I'm sorry to hear about your brother's diagnosis and glad you found us. He's lucky to have you in his court for this since you've been through cancer and you're learning about lung cancer so you can support him better. Lung Cancer 101 on the Lungevity main website is a good place to start, if you haven't already.Here's a link: https://lungevity.org/for-patients-caregivers/lung-cancer-101. Let us know if you have specific questions and how we can support you.

Bridget O

Posted

Kim,

So, let's take stock of your brother's situation.  He's young.  He has an early discovery, and his tumors are confined to one lung (perhaps one lobe of one lung -- not sure from your description).  He's also had a biopsy but you do not report the type of NSCLC he has (could be adenocarcinoma, squamous cell, large cell).  He is on track for the most effective tool we have for dealing with lung cancer -- surgical resection.  Here are some things you can get started on to assist with his treatment.

  • Audition a large, firm angular pillow that will allow him to sleep elevated in a flat bed. (find at mattress store but buy online)
  • He may be discharged with a chest tube attached to a drain mechanism. (he'll need help changing dressings and the like)
  • A swimming pool deep enough to allow immersion up to his neck may help with post surgical incision pain (after chest tube removed)
  • Be prepared for chemotherapy after surgery (here is a primer)
  • Avoid flying in commercial aircraft till incisions well healed (maybe longer)

I do hope and pray your brother's surgery is "one and done".  But, be mindful that lung cancer has a nasty track record of recurrence.  After 14 years of surviving a multitude of treatments and eleven of those years with no evidence of disease (NED), I still see an oncologist twice a year.  So, after surgery and chemotherapy, he'll likely have frequent diagnostic scans (one per quarter) to check for recurrence.  And, abide by rule number 1 for oncology consultations: never go alone.

Questions?  This is the place.

Stay the course.

Tom

Posted

Kim,

So glad you found us.  This forum is a great place to get answers and experience.  Someone here has certainly walked in your brother's shoes.  First, if VATs surgery is an option, select it.  I had the traditional lobectomy more than 2 years ago and I still have numbness on my left side (nerves were cut on that side).  Second, an early diagnosis is worthy of celebration in my opinion.  Many of us are diagnosed later when the damn disease has spread.  We're still here but our fight is a little more grueling.Third, a clean brain MRI is definitely great news.  

So, you've received lots of good advice from everyone so far so there isn't much I can add.  Ask questions until you get answers.  Keep asking.  Don't even bother researching stats.  We've had so many advances in the last few years that the stats are horribly outdated.

Let us know how we can help you and your brother.

Posted

So sorry to hear about your brother's recent diagnosis. Please know that each and every case is different! Listen to what the doc's say but also become as informed as you can on what's out there for treatment. If you have any questions, this is a great place for support and answers based on each person's unique situation. Where are you located? Your brother is so lucky to have your support. Be sure to go with to his appointments and take copious notes. Stay strong and positive throughout and do not look at statistics on the internet. Please have your brother connect with this website or others for support! It really does help!!

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