Jeffrey N

Brand New

63 posts in this topic

So I am Jeff , x smoker 10 years ago. VERY scared for my old dog. She's a rescue 3 years ago and was very abused. She is all I have. some 10 years old and 105 pounds of mean.

So= 3.6x2.1 cm mass within the inferior segment of rt lower lobe.  there is shotty mediastinal lymphadenopathy of the largest lymph node in the paratracheal region measuring 1.2cm.

This is highly concerning for malignancy.  (end of report) whatever all that means but two Dr's , one VA and one private say bad news.

So how good is the Tampa VA with this , anyone know ? It follows the other medical problems I have from agent orange. Yep veteran.   

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Jeff,

Welcome here.  I'm also a vet but live in Texas and can't comment on the Tampa VA hospital.  My experience with the VA suggests once one reaches a hospital, the care is superb.  The problem is navigating all of the administration to get an admission and get in line for treatment.  

As a Vietnam veteran, especially exposed to agent orange, you ought to have one of the highest priorities for treatment.  So, perhaps your wait won't be long and the process won't be so involved.

You'll likely have many more questions.  From your description of tumors, I note right lung, lower lobe and one paratracheal lymph node.  Next step will likely be a biopsy to determine the type of cancer.  From your description, you might stage at IIIA.  Here is information on lung cancer staging. If so, your cancer is very treatable.  I was staged as IIIB thirteen years ago and I'm still around.

You'll likely have more questions and this is a good place to ask, so fire away.  Good job in rescuing your dog!

Stay the course.

Tom

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Tampa VA on the 20th to see specialist . I was in copters and moved agent orange (did not spray) around Da Nang. Among other things.

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Jeff,

Happy you have a quick appointment at the VA.  I assume you are aware of the disability implications of a agent orange related condition.  You should do a little on line research to see if you qualify for a monthly disability check from the VA.

Let is know about the results from your appointment and your treatment plan.  Of course, if you have questions, this is a good place to ask.

Stay the course.

Tom

bigheart.fg and Mally like this

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On 40% now for neuropathy and heart attacks . VA dr said the bright side is I will go to 100-% now. some bright side.

Wonder if its normal for my chest to hurt some.?

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Appointment was not good or good however you look at it.  Going to remove whole RT lung. Do pet scan and biopsy on large lymph node.

Seems half of lung has collapsed. And look into bad headaches.  

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Jeff,

Ok, I understand.  I had my whole right lung removed.  More troubling is the lung collapse.  Is it your right lung?  Are you experiencing fluid buildup between your lung and chest wall and is this causing pain.  Most importantly, do your doctors know about these symptoms.

I can't connect headaches with lung cancer save for stress.  I had them after periods of extended stress, like my body was reacting to living without adrenaline.

Stay connected and stay the course.

Tom

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Seems to be fluid , it is painful to breath deep. Right lung. No biopsy Dr wants to proceed with just a PET scan. Says no point. Headache can be the cancer has already spread to brain or hopefully psychosomatic. PET scan Monday 1st with surgery immediately after. 

They also rushed me through a C&R evaluation and said 100% disability no problem.  TAMPA VA has been great so far.

life goes on

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Jeff,

Let us know how things go. 

Do hope headaches are indeed psychosomatic. 

Stay the course. 

Tom

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Life does go on, thank goodness! I'm glad to hear that the VA is coming through for you. Best of luck to you and your big ol' dog. Hang in there.

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Jeff,

You are no longer alone. You have us. Your fear might be dialed back by knowing I faced the same procedure you will and have survived 13 years. If I can live, so can you. 

Stay the course. 

Tom

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Tampa called , been moved to Bay Pines in St Pete. Seems that is where the Dr is they want me to see because this kind of cancer also goes for the brain (still have headaches)   Small Cell Extensive Stage

Just gets better every day. Still on for PET scan Monday but added back a biopsy to check to see if it is the type of cancer he thinks it is. ? Surgery is still a go for next week.

does that make sense ?

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Jeff,

How was Small Cell Extensive Stage determined?  Biopsy?  Or is that an assumed diagnosis.  Re-reading I didn't see any biopsies in your treatment history.  How are they evaluating the headaches?  Are you having an MRI or brain scan along with the PET of the chest and abdominal area on Monday?

Stay the course.

Tom

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When interviewed by the Dr he noticed speech problems , combined with headache and weakness he assumes the worse. I have asked him to be perfectly frank being all alone.

Pet scan , MRI on monday now. Cardio ekg and such tomorrow to evaluate heart for surgery next week. (they say)

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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

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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. 

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So , PET scan shows 1  2x3 cm right posterior perihilar mass = two parenchymal densities measuring 4cm and 2.7cm. and 2 lymph glands suspicious. 

Brain MRI is scheduled for 5/23 , consul with surgeon for June 1 Surgery sometime towards the end of June.

so lump found 3/9 , some 4 months later surgery. I am now upset.  TURNS out there is 1  ONE  surgeon for all of Tampa VA and Bay Pines. You are talking BIG hospitals.

I have now changed my tune to V.A. = not good.

 

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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

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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.

Sent from my SAMSUNG-SGH-I337 using Tapatalk

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Thank you for the post. The VA here offered Veterans Choice but it seems that will take up to 60 days for the paper work. I am up to = May 9th bay pines with Dr Hong , consul , May 23 for MRI of brain. No date for surgery as he goes on vacation. DAMM. I wrote to my congressman AND pres Trump.

[ President Trump you have a problem with the V.A.
     March 9 I have x ray shows lump and Cat scan is requested same day. April 22  get Cat Scan and I have a real problem. April 24 I have consult with thoracic Dr. and decide it needs removed but need a pet scan and MRI.  May 1 have PET scan still have cancer. MRI is scheduled for May 23. A consult is scheduled for JUNE 1 , No surgery date yet.
  If you could see the cardiology report for surgery it says MAY 8 for  surgery and make arangments for my brother to come and stay. Its canceled.
   SO I get asking whats up and am told there is ONE , 1 , thoracic surgeon for all of James A Haley AND Bay Pines.
  Nurse says they have been waiting for over a year for the VA to hire one.
In the mean time myself and I am sure others are dying waiting for surgery.
When my stepmother was diagnosed with lung cancer she dyed 3 months later.
Get us a doctor , please. ]

I posted it on face book and it is getting reposted lots. Maby it will help someone.

Jeff  And it does hurt to take a deep breath.

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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

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Jeffery,

Thinking about you today.  My dad was a vietnam vet too.  You deserve better than what you've had.  Hoping things go smoother from here on out.

Keeping you in my best hopes.  Please post an update when you can.

KatieB

 

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Today met with Dr Hong in bay pines , he is in fact a top surgeon in his field. Surgery is set for the 12th , IF the brain mri is clear on the 23. If not no surgery and it will be considered inoperable. I am hoping for the best but headaches persist and it is not a good sign. Any way here is me !  Jeffrey Noyes   (face book)

https://www.facebook.com/jeffrey.noyes.3

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Jeffrey,

Well, at least we have a schedule!

I hope your headaches resolve before your MRI. Be sure to tell the MRI technician about your headaches before the test. 

Keep in touch and let us know how you feel. 

Stay the course. 

Tom

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