Mally

Thanks so much for your responses. It really helps to know that there are others who really understand and I can talk to. I have felt bad the last week. The weather here has been windy & rainy. My allergies are all flared up & cough is worse. I just stayed in this weekend & rested. I have felt better today. Just trying to stay positive and be ready for surgery. My pulmonologist is going to do a referral to oncology so they will be on board if needed. I pray you all continue to do well & I appreciate your prayers.

Hello,
I am a 61 year old male, recently diagnosed with Non small cell carcinoma. I decided to join this forum because I have some questions after studying different sites regarding lung cancer.
This is my first question: What does Standardized Uptake Value of 6.5 with an average of 3.5 mean? How are the numbers defined?
Thank you!

Sandra,
I experienced all kinds of pain after infusions. Mostly in my joints, and it was a gnawing persistent pain that overwhelmed even Fentanyl patches. 
Three days of full immersion misery then I was fine. I had Taxol and Carboplatin as my chemo cocktail; a total of 18 infusions!  So pain was a problem and time was the only the only mitigation. 
Stay the course. 
Tom

Thank-you..

My goodness, I guess you are fed up. I hope all goes well and your recovery is Swift.

Welcome here and you will get some great answers from very knowledgeable people so just ask away

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Hi, I am visiting the forum for information . I am hoping to find some answers to questions that I have.. Thanks

Jeff,
I'd push the veterans choice by scheduling the surgery, giving the surgeon's business staff the paperwork problem. I was told there is no approval by the VA allowed. They are causing the problem. 
Find a local Tampa surgeon and get it done in a Tampa hospital. Fight the VA paperwork after the surgery. 
Stay the course. 
Tom

My husband also has V.A. coverage and was recently approved for Veterans Choice Program. So I know it's still available. If they can't get you in in a reasonable amount of time you can be treated at another hospital and V.A. will cover cost. And his condition wasn't nearly as time sensitive. Hope that helps
Judy M.

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Jeff,
Months ago, I got a card that allowed me to choose any physician I wanted if the VA medical system wait time was excessive. I didn't read the fine print details and filed the card away. Did you get one?
I know the card is still effective because I watched the new VA guy talk about it on a news conference. 
Many US congressional districts have established local professional staff positions to push the VA into acting. Contact your congressman's local office and tell this staffer about your delay. 
Google search Thoracic surgeons who practice at the Mayo Clinic in Florida (Jacksonville) and at hospitals in Tampa. Most have an email contact routine. Ask if one is willing to do a pro-bono surgery for you. I'd compose a email providing the details of your diagnosis and shotgun send it to every thoracic surgeon you turn up. I've heard of surgeons doing this for veterans in Texas, especially those exposed to agent orange. 
One thorasic surgeon for the two big VA hospitals is just plain stupid. Let me know if these approaches work.
Stay the course. 
Tom

It is to be whole lung. I have ordered wedge pillow from amazon , good idea. The VA is going to provide home health care. They have in the past with heart attack I had.
They installed handrails in the bathroom shower and toilet. 

Jeff,
OK - I understand now.  PET and MRI will clarify uncertainty.  
If your surgery is a pneumonectomy (whole lung removal), then use the remaining time this week to prepare your home for recovery.  You'll likely need to sleep with your head and back elevated for about 4 to 6 weeks.  Go to mattress stores and audition those triangle shaped pillows with about a 15 degree slope. Find the brand name and model number that fits you and order it on line for substantial savings.  I used two pillows to get enough elevation to be comfortable.  Sitting in a chair for about 2 weeks was difficult for me.  I spent most of my time on my left side (right lung removed) stretched out on the couch during the day.
Since you live alone, inquire about VA provided home health care.  Someone will need to change your dressing at least every other day and attend to your chest tube, if in fact you have one.  Your doctor may not send you home with a chest tube if you recover quickly in the hospital but with your fluid history, you are likely to have one.  Ask your doctor for a portable chest tube drain so you can sling the drain under your arm and move about easily. 
Keep me posted and stay the course.
Tom

Thank you

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Went for PET/CT scan and biopsy last month and finally saw the Doc this past Thursday as he was away in Africa. He said tests show stage 2 NSCLC. Tumor measured 5.2x3.0x6.0 cm. He scheduled a right lung lobectomy for May 30 and also wants to do a bronchoscopy and mediastinoscopy at the same time. Unrelated I have had 3 surgeries on my left leg and when I saw the surgeon for that last Tuesday she also wants to do surgery again because the graft is closing up causing extreme pain due to lack of blood flow. Both agreed lung surgery first then leg. I'm getting pretty fed up with all this.

Thanks guys! Tom, my collar bone is not fractured, it isn't that kind of pain. It feels more like a pulled muscle but not, I really cant explain it. I will keep you posted.

Teresa, 
And I Third Susan & Judy's wish. But, do get to a doctor. Your collarbone pain and the way it is displaced suggests a possible fracture. People with broken collarbones also have difficulty breathing. 
Let us know about the outcome. 
Stay the course. 
Tom
 

I second Susan's hope that you don't have lung cancer. It's a pain. And also her request that you keep us posted. I'm new here but as far as I know venting is allowed. Lol.
Judy M.

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Hi, Teresa.  I sincerely hope you don't have lung cancer, either: it stinks!  Regardless of the outcome, please come back and tell us how you are doing.  

Female, 43 years old. I have been having issues since the start of the year and getting worse. I am exhausted, not just tired but like bone tired, constant dry cough, heavy chest at times, I have to take constant deep breaths, like I am never getting enough air, out of breath very easy (prob because I am fat and out of shape), collar bone pain, my collar bone has even pushed up sticking out, while the other side is flat, feel like my food gets caught in my throat while swallowing ( feels like a pill that gets stuck and you have to drink to get it down) and I may or may not have a swollen lymph node in my neck under my jaw ( I cant really tell). I have been a pack a day smoker for about 20 years.  No fever, no infections, no blood. I have an appointment with my doctor next Tuesday May 9th, but I am really dreading going, I really don't want to deal with it, but the only reason I am going is because I am tired of feeling like I do. Sick and tired of feeling sick and tired.  I high doubt I have lung cancer so it will prob just be a waste of time.  I am sure I will get to hear, stop smoking, lose weight, exercise. But go I shall. Thanks for letting me vent.

What a great idea! You go girl!


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I think we can all agree that chemo stinks.  I had four rounds of cisplatin/pemexetred last year and I'm 3 weeks into 6 weeks of carboplatin/taxol for a recurrence.  Last year, my girlfriends and I decided to have themes for chemo. One session was 80s and the last session was Mardi Gras.  We had beads and boas for everyone.  We're doing the same thing again this year.  We had spring fling, beach fun, and today's pajama party.  For some reason, my husband wants no part of the costume concept!  
I'm sharing this in the hopes that it will inspire you to find a way to get through chemo with a smile.  If we don't laugh, we cry.  

My tumor was a false negative on the PET scan-- it didn't light up at all. Repeat CT showed it was growing, but very slowly.  Due to location, it couldn't be biopsied without taking it out. I had VATs lobectomy and it was adenocarcinoma stage 1A. As I understand it, PET scans show metabolic activity, and small slow-growing cancers don't metabolize a lot, so they sometimes don't show up.  If you do have lung cancer, it seems likely it would be very early stage and curable with surgery.  
Waiting is a big drag, I know. I focused on living my life a day at a time. I do have some moments (and occasionally longer than moments) of anxiety, but mostly I'm just keeping on keeping on. I just came back from the Lungevity Hope Summit. It was really inspiring to see so many LC survivors having a good time!
Hang in there!

Thats great news !!

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So, Still waiting on the repeat CT.  My PET san was negative, which gave me a better feeling about all this.
While waiting, several medical friends told me I should get a second opinion. I got a second opinion and the 2nd Doc said that  PET has a lot of false negatives on 9 mm nodules. He cited several relatively recent cases he's working with patients similar to my situation that tested negative on PET, but positive on aspiration and VATS. He also said that since it is non-calcified, speculated and lobulatedi, thats not a good sign at all. 
Anybody else have similar experience? I ask because the information available on the net is confusing. in this case, google is not my friend. 

Oh the eternal waiting game. Would love a black and white answer too. Until then, live life to the fullest, be happy and do what you need to deal w anxiety! Hugs Julie