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Well today is the day!  We have our biopsy at Baylor Hospital this afternoon.  I'm very nervous but staying hopeful.  We were supposed to have our PET scan yesterday but the darn machine broke down so we are now scheduled for Monday.  I'm so ready for a game plan but from reading this forum I understand its going to take a little time.  My husband is staying very positive and just wants to get back to his normal life :)

Wish us luck!

T

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Welcome and Best of luck on the tests. Guessing you next challenge will be waiting for the results! But one step at a time!

I am getting a head MRI tomorrow to confirm not Mets...so I too will be thinking about results over the weekend! Waiting.....🤒

Peace

Tom

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Ok, just got home from Baylor and the doctor let us know it is Non small cell lung cancer.  At this point he needs the PET scan and brain MRI before the doctor can finish staging it.  Our doctor said the best start is surgery to remove the lung but because of where it is and size he is not positive we can do surgery.  But he said that is the goal.  He's going to talk to his thoracic surgeon and then possibly do another biopsy to get a clearer picture..I forget why but he was having difficulty seeing the whole lung and such...because of where it was or something?  I am sure I'll be better prepared to listen on our next visit.  So I'm new to this forum thing...I think I'm still on the introduction page...where do I go to post things in future now??

Thank you

T

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Hi there

Welcome to the Lungevity Family.  Feel free to post anywhere, most typically use the Member Updates or General tabs.  There’s quite a few regulars here so not to worry we’ll find you.  
 

You’re getting closer to a treatment plan as these complicated diagnostics are moving forward.  Baylor is a sophisticated health system, be sure to ask about comprehensive biomarker testing as there are many sub types of NSCLC.  It’s important to know if there is any further treatment required.  
 

Lung cancer is like being abandoned in a foreign country, the learning curve is steep and in the beginning four ears aren’t enough to take it all in.  Most physicians will allow the visit to be recorded.  I’ve found it helpful to email questions to my doctor in advance of the appointment. As the old saying goes the only stupid question is the one that doesn’t get asked. 
 

Allow yourselves time to adjust to the new normal, once the treatment plan gets going then things will settle down. 
 

Nice to meet you- we spent some time living in Flower Mound- pretty soon the blue bells will be out.  
Michelle

 

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TMC,

I had all my thoracic surgeries at Baylor (Downtown); eight in all in the course of three years. It is a great hospital.

I had my entire lung removed and recall my surgeon being unspecific as to the extent of how much lung would be removed until he saw the situation. He was also uncertain if he could remove the lung and tumor at all and couldn’t make that determination till he saw the situation. Scans in soft tissue often don’t convey enough information for complex surgical decisions. 

It sounds like you may be facing a complete pneumonectomy as opposed to a one or several lobe resections. I had a pneumonectomy which went well till I was discharged and recovering at home. Well intended neighbors visited with a school aged child and I was re-admitted with a fever of 105 and one lung pneumonia. So if you go that route, I encourage no visits till well recovered. 

I was also to have post surgical chemotherapy but missed that treatment due to my surgical complications. That likely resulted in 3 metastatic tumors in my remaining lung. If post surgical chemo is suggested, I recommend you have it. It is designed to sweep the blood and lymphatic systems of cancer cells that may (are likely) present. Lung cancer is so difficult to eradicate because it frequently recurs.  So hit it with every tool in the arsenal. 

Many of us have faced surgery. We have lots of recovery tips and tricks. Let’s hope for cooperating PET and brain scan results. 

You might ask the surgeon if you could record future consultations to facilitate understanding. 

Stay the course. 

Tom

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Yes, we are being treated at Baylor downtown also!  We are really happy with the care we got there. Thank you for the advice about recording, I'll be sure to ask if I can do that next time.  My husband had a lot of coughing after the bronchoscope or however you spell it so he just went to bed when we got home. But hopefully tomorrow he will feel better. He has been in GREAT health with no symptoms other than the cough up to now.  So far we have been happy with the team our regular internist has referred us  to. Our Pulm. doctor seems to be top notch and said he has 4 thorisic surgeons (my spelling sucks) he uses and was hoping to get his results over to one this weekend to look over.  Right now our biggest prayer is that it has not spread and they can find a way to do the lung removal.  The doc does say the whole right lung needs to go.  He did say if it can't come out right away it might be possible to do some chemo or radiation to reduce the tumor so they could do a surgery later...is that common?  Oh lord I'm going to have a million questions on here?  Is that gonna be alright?  I just want to be on top of things and I have no idea how to be an advocate for my husband.

 

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TMC,

I had chemo and radiation before surgery to reduce the size of my tumor and allow surgery. I wouldn't know how common this treatment is. If the PET and brain scans show a single mass in the right lung, then surgery represents the best way of dealing with it. But there are risks, predominantly radiation effect on suture healing. I'm not trying to market my book but it sounds like your husband's lung cancer is similar to mine. You might want to read "Scanziety--Retrospective of a Lung Cancer Survivor" to understand the best and worst case of surgery after chemo and radiation. It is in the Amazon Kindle Store.  

At this juncture, having a pulmonologist in the lead makes sense. Both the pulmonologist and thoracic surgeon will need to weigh the pros and cons of surgery but I'd also use this time to audition a medical oncologist.  Pre-surgical chemo will fall in the medical oncologist's rhelm while radiation will require a radiation oncologist. Fortunately, these two disciplines are often colocated in a practice. This pre-surgical routine is easily administered at a local oncology clinic and you might find clinic treatment easier than a large hospital setting. When you see your radiation oncologist, ask if precision radiation (Stereotactic Body Radiation Therapy) might substitute for surgery if the surgeon and pulmonologist decide conventional surgery is too risky.

As for questions, fire away. Few medical practitioners have actually had lung cancer or its treatments, but we've had them in spades. We'll help you every step of the way. Here are a collection of my suggestions for coping with lung cancer treatment.

How do you advocate for your husband? Prepare him for the long game; his cancer won't be "one and done." He's facing a slog of treatments and surgery that will be difficult to endure and will require your engagement to physically and emotionally help. This may give you insight into your role.

I'd address bronchoscope irritation with Halls cough drops. Get several very large bags and encourage him to use them frequently.

Now, let's focus on some positive aspects. I was diagnosed in February 2004. I've had every form of lung cancer treatment except immunotherapy and my treatment spanned nearly four years. I'm still here!  If I can live, so can your husband.

Stay the course.

Tom

 

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Welcome to our little corner of the world. The beginning is so difficult - so much information and so many tests and hurrying up and waiting. You'll think of 100 things before you get to the doctors' appointments. My recommendation is to write them down as you think of them so you won't forget anything. Michele and Tom have both given you a lot of great information.

Keep us posted and let us know how we can support you and your husband.

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Tom,  thank you for the info you have shared.  I don't think this has truly sunk in for either of us yet.  But I am sure it won't be long before it does!  Tomorrow is the PET and I'm am anxious for that ...praying it hasn't spread!

Thank you again,

t

 

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Hi TMC ... I'm sorry that you and your husband are having to deal with cancer. This forum is great. Don't be bashful about posting ... I was bashful for a little while but got over it. I soon learned that there is a lot of knowledge here. I'm typically posting in the Small Cell subgroup and may not have the best info for you. I guess you will be posting in the Non-small Cell subgroup. 

My limited advice is to stay positive which is what I have been doing for my wife.

Steve

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