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What should we be asking?

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Old 02-21-2010, 08:10 AM   #1
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Betsypup HB User
What should we be asking?

Well, I'm back and we're still in limbo.

My 71 year old Dad was having mild chest pains and a dry cough in late December. Between then and now, here is what has happened:

X-ray---large mass in upper left lobe/highly suspicious
PET scan--showed a "flash" in the mass and inflammed lymph but no spread
CT assisted biopsy--negative

He has a mediastinocopy (sp?) scheduled for tomorrow. the pain comes and goes, he never has spit up blood and he never smoked. The thoracic surgeon says if the media. comes back negative, they might just wait and see and revisit in 6 months. Aside from the fact that this makes me nervous (and I would urge Dad to get a 2nd opinion), he isn't feeling well, otherwise. He is pale, has a nagging dry cough and is extremely tired. The doctors don't want to do surgery if they are not sure what they are delaing with but what the heck could be going on? Is there a possibility that this could be Sarcoidosis or an infection? I just don't know what we should be asking when we meet with the doctors next week??!!

Thanks so much.

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Old 02-23-2010, 08:59 PM   #2
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goldyfm HB Usergoldyfm HB Usergoldyfm HB User
Re: What should we be asking?

Betsy, I am so sorry that you have not received a concrete answer in your father's case. I know the not-knowing is so hard to accept and I know that you feel helpless at this time. I am praying that it may be something that can be explained and treated properly. I do hope you keep us posted of your findings. Take care.

Old 02-25-2010, 10:34 AM   #3
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Re: What should we be asking?

Sorry to hear you are still in limbo, I know how frustrating that can be. I would not take a wait and see approach if this next biopsy comes back negative. I would urge your dad to get a second opinion. I have been reading anything and everything on lung cancer over the last month and have read stories where patients were told the same (wait and see) and meanwhile the cancer spreads. The mass in your dad’s case sounds localized, and if that is the case he could have an excellent prognosis. When do you get the biopsy results back? Either way, you might want to get a 2nd opinion. If it is cancer, you will want to deal with it asap.

To update you on what is going on with my mom, we got a second opinion at an extremely reputable cancer center and she feels that my moms spot is not cancer, and is Bronchiectasis. She has a follow up CT today and we meet again next week, but I am feeling more hopeful. Here is my mom’s story in case you are curious.

Dec 2009 - mom went to the Dr with pneumonia like symptoms (coughing and fatigue) and was put on antibiotics
January 2010 -follow up X-ray revealed pneumonia had not cleared despite her feeling 100% better
January 2010 - CT was ordered which revealed a tumor located in her upper right lobe blocking the airway- her right upper lobe is partially collapsed as a result of the obstruction.
February 2010 - bronchospcopy and biopsy a few weeks ago came back inconclusive. Referred to UW for an EBUS (endobronchial ultrasound) .
February 23, 2010 - opinion of thoracic surgeon is that this isn’t cancer, and is Bronchiectasis . CT is being done today and we meet to discuss the scan next week.

Good luck to you and keep us posted -

Last edited by lynn91970; 02-25-2010 at 10:40 AM.

Old 02-25-2010, 07:39 PM   #4
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Re: What should we be asking?

Lynn, I'm so happy that you are getting good news about your Mom. Please keep me posted.

My Dad has his mediastinoscopy on Tuesday. He go the results back and everything is normal. They are going to one more deep needle biopsy next week. The surgeon did order the pre-surgical blood work-up for the clotting disorders so I can only assume that they are getting him ready for surgery. The thoracic surgeon still feels it is cancer.

I'm incredibly frustrated because my Dad seems very tired and I just want him to feel better.

I'll keep you and your mom in my thoughts and prayers and I'll definitely report back with news.

Old 02-26-2010, 01:14 PM   #5
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Re: What should we be asking?

I am so sorry you dont have answers yet. I know exactly how you feel. It is extremely frusterating. Hang in there and let me know what happens next week.

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