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atcrunner

wife diagnosed, don't know where to start

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Hello all!  My 34 y/o wife was just diagnosed with cancer in her lower right lobe (they visually saw the mass during a bronchoscopy).  We should be getting the pathology reports back any day now.  I don't even know what to say or where to start.  We live south of Atlanta and have 3 young children.

We've been referred to see a thoracic surgeon next Tuesday.  We're close to Atlanta and have been in contact with Emory and also Cancer Treatment Centers of America (currently working with Piedmont).  We have not seen anyone yet outside of her pulmonologist that found it.  We're praying for a good pathology report and that we make the right decision regarding her care.  Looking for all signs of hope anywhere we can find it (so far she's doing much better than I am).  I haven't even begun to dig through these forums yet, just wanted to say hey and get something out there.  You'll all be in our prayers on this journey.  Thanks for listening.

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HI there, and welcome.  

Sorry to hear about your wife's situation.  You will know a lot more once the pathology report comes back.

The good news is that cancer treatments have advanced significantly in recent years. The type of cancer and the stage will determine what kind of treatment she will need.  It's important to not get too far ahead of yourself until you have more info.  

Do you know the size of the mass?  She will probably be getting a PET/CT scan to evaluate the likelihood of any metastasis (spread).  That's part of staging.

Glad you found us--this is a great place for information and support.

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Hello and Welcome-

We all know how devastating this news is and we are here to support each other.  The next few weeks will be a bit of a blur with the upcoming scans followed by waiting, waiting & waiting.  The diagnostic process can take several weeks which is critical to the development of a treatment plan.   Check in with us for guidance along the way.  

As far as a treatment site, if there is a National Cancer Institute (Emory might be one) consider going there.  At a comprehensive cancer center, membership has its benefits.  There are many resources available PLUS a team of schedulers to coordinate all the appointments. 

You may want to look at the Cancer Center of America reviews and outcomes.  There has been some concern about “quackery” reported.  Ultimately you must have complete confidence in the oncologist you select.  For me, bedside manner is irrelevant.  I want the super smart science geek as my team captain.  

Check out Tom’s Blog on the Lung Cancer Top Ten.  Super valuable advice for getting started.  We went to Staples to purchase a good old fashion calendar planner which really helped to keep things organized.

Stay in close contact with your insurance to ensure necessary services are approved in orders to avoid any surprise bills.  

If your wife was working you’ll want to keep track of FMLA and short term disability benefits too.  

Its a whole lot to keep track of all at once.  It’s overwhelming.  This group knows how to take care of each other so no need to go it alone   Lots of experience here to assist in navigating the new normal.  

Prayers for you! 

Michelle

 

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Hi

Seeing a  thoracic surgeon next Tuesday is excellent should speed your wifes diagnosis looks as if the bronchoscopy put her in for candidate for surgery?.

Welcome aboard

Bob

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This is such bad news!  Ok, let's get to work.  Here are my thoughts on things you can and should be doing now.

First, find a thoracic surgeon. Use your general practitioner, family contacts, circle of friends, religious congregants as sources. You want a surgeon that specializes in removal of lung tumors and you are looking for a very well known surgical center that does thousands of lung cancer tumor resections in a year.  You want a hospital that has a pathology lab adjacent to the OR so in process path reports can be obtained in near-real-time during surgery. You want a hospital with an ICU that has deep experience in dealing with post surgical lung problems. You are not looking for a cancer hospital here, but a world class surgical center. Here are my thoughts on evaluating a thoracic surgeon.

Next, find a medical oncologist.  Use the same sources as the surgeon but the practice space should receive consideration.  If chemotherapy is in the cards as a treatment modality, and I think you should consider it in play for doctor search purposes, then you'll want an oncology practice that offers scans, radiation oncology, and chemotherapy in a small clinic. Lung cancer treatment is well defined by "National Standards of Care."  That means, almost everyone with the same type, sub type and stage of lung cancer will receive identical treatment that conforms to the National Standard of Care.  If medical oncology treatment is required, you don't need a world class center to administer it.  You want a place that is comfortable and convenient to your home.  Nevertheless, finding the right medical oncologist is extremely important because after first and second lines of treatment are administered, the national standard of care becomes the skill and intuition of the medical oncologist.  Here is my hint for a good medical oncologist: one who is chronically late to appointments because of the time they take to listen and explain to patients. 

Third, start casting the net to get help with caring for your children.  You will need help.  Mom will be out of the child lifting business recovering from the least intrusive means of lung surgery for quite a while.  If chemo is planned before or after surgery, figure about 3 days in every three weeks that Mom won't be able to care for children.  Dad will also need to care for Mom.  Talk to your company HR and see if they can arrange a flexible work schedule to help you care for your children and wife.

This is not the time to consult survival statistics.  Instead read this. And, here is my Ten Ways to Survive Lung Cancer suggestions that may help.

We understand what you are going though. We also know there is life after a lung cancer diagnosis, substantial life. I personally believe attitude towards treatment and outcomes is very important.  You'll need to coach your wife up in that regard. Questions? This is the place.

Stay the course.

Tom

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It’s always awful to hear this diagnosis in one so young. Hoping that the surgeon referral means all is needed is surgery which is wonderful. I’m north of Atlanta and considered Emory which is the best around here but went with Northside, also highly recommended, because they have outposts near me and my job. Didn’t think I could handle Atlanta traffic on top of it all. I researched Cancer Treatment Centers when this started in December-some of what I read sent up the red flags. Keep us posted. Ask questions here. This place has been great help and inspiration. 

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Hello atcrunnwr.  Welcome.  I’m sorry to hear of your wife’s diagnosis.   As others have mentioned there is still more to learn about the specifics.   The initial shock and the waiting for the specific answers you need was the hardest part for me.  The fact that she was able to have a bronchoscopy will give you sole answered quicker.  I’m 43, was diagnosed at 42, and also have three young kids.  It’s a lot to juggle but it can be done.  Check in here with your questions and for support.   As you can see there is a lot of experience, knowledge and caring on this forum.    

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Hi and welcome. You've been getting some excellent advice and suggestions from others here and I don't really have anything to add. My cancer was early stage and I needed only surgery, no other treatment. I'm well today: it's been 2 and a half years since my surgery. As you learn more about your wifes cancer, you'll have questions and these forums are a good place to ask them.

Bridget O

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Thank you all for the replies! My wife and I are ready to have a great weekend. The dr was not in Friday so we’ll be waiting at least til Monday to get more information on her specifics. 

Tom, thank you for the links, we’ll be going through all the information we can find anywhere we can find it. 

As sad as I am for anyone going through this, I’m glad to know we’re not alone (weird).  

 

Thank you all. We’re David and Kristen by the way. 

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