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Dad's biopsy--even more confused.


luvmydad

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First, I just wanted to say thanks to all for their prayers. We felt them like angels wings wrapped around us as we sat in the hospital yesterday.

Second, I must say I am even more confused now, than I was before yesterday. (if thats even possible)

From the beginning. Dad started to notice blood when he coughed in the mornings when he came back from vacation this June. He went to the doctor for a physical at the end of July. (Mad at him because he didn't go sooner, but he didn't tell me anything until Sept.) The doctor did a chest x-ray and found absolutely nothing. Dad had to ask to take it another step. A CT scan was ordered the first of Aug. Came back and showed two areas that were suspcious for cancer in his right lung. Dad went back to doctor and was told, "Sorry, you have lung cancer. Here is a name of a cancer doctor." Went to her, and was told that she was 90% sure he had lc and that there is only a 15% chance of living a year. Surgery is not an option...too risky. She ordered a PET scan. This confirmed the 2 areas that were on the CT. (I don't have the paper with the exact size of the areas, but approx. 3cm x 3.4cm, and 2.5cm x 3cm. The PET scan also showed a shadowing over a lymph node. All this is contained to the right lung. PET scan showed nothing anywhere else. Dad was sent to a radiologist. First nice person he came in contact with. Said that cancer cannot be confirmed without a biopsy. Yesterday, he had the biopsy. The doctor showed us the films of his lungs as they did the procedure. The first area they came to all the lung tissue they tested showed no signs of cancer cells. They went on down to the next area and again, all the tissue they tested was negative for cancer cells. He said he got samples of both areas and that the second area was really hard and hard to get samples from. These samples will be sent to pathology and we will know the results in a week. Doc said that if these samples came back negative, then they would have to do a needle biopsy thru the side of the lung. (Dad turned white as a sheet when he heard that one!!!) Other than suspicious for cancer areas coming back on CT & PET we have not had a positive dx yet. However; this morning he is at the radiologist office to schedule his treatements??? I am confused. Does he have cancer or not? Kept asking the Doc questions yesterday, and the only answers I got was ...We will talk about that when we get to it.

Dad wants a second opinion at John Hopkins in Maryland, but they won't schedule an appointment without a positive dx for lc. My problem with all this is the amount of time it is taking to get answers. Seems awful drawn out to me.

While we were relieved that they didn't find anything yesterday, we still don't know where we stand. Dad is being so strong and so brave. Poor nurses yesterday were probably glad to see him leave with all the flirting he was doing. Any insight would be appreciated.

Teresa

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Hi Teresa,

I was going through the exact same thing with my mum. They did a biopsy with a fine needle the first two times. No malign cells were detected.

3rd time they did af biopsy with a greater needle, and mum said they were a strange crushing sound she didn't hear the first two times.

And the answer was: no malign cells again. Still a shadow though. They decided to open her up to see what was hiding in there; And it was cancer afterall. A 7 cm big tumor - how can you miss that three times :evil:

Later on i saw an article describing the problem. A adenokarcinom can often be left with a necrotic center without cells in the middle. So that could be the case...

On the other hand: Maybe it isn't cancer afterall? Also maske sure that both nodes are cancer. If only theres one cancer node, it oculd be an early lungecancer, which have great survivalodds

Good luck to you and your father.

Brdgs,

Bettina

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maybe you can push to get an appt at Hopkins or somewhere else. At least it might help if all the doctors were at the same hospital to coordinate all the results.

Sometimes people when they go do a cancer center they get a "tumor board" (Doctors with different specialties that discuss the case).

Or at least go to the Doctor that is most helpful (perhaps the radiologist) and get some of your questions answered.

Good luck. Hope it is not cancer.

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From what you describe of the biopsy, it sounds like he had a bronchoscopy to gather tissue samples. These biopsies are often inconclusive. If they don't find cancer, it is considered inconclusive. Lung needle biopsies are also often inconclusive. I have had 2 bronchoscopys, and 3 fine needle aspiration biopsies and they were all inconclusive. The only way they could tell for sure what my first 2 cancers were was to cut them out. For my third cancer, I never had a biopsy because it was considered too risky. They assumed it was a third adenocarcinoma. All of my cancers lit up on the PET scam. The problem the docs may have for your dad is that maybe they won't get a conclusive biopsy and may not know for sure what kind of cancer your dad has. Did they say why surgery is not an option? They might have to do a wedge resection if they really want to figure out which cancer it is.

Don M

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I have to echo everything Don said. They never got reliable samples from my husband's bronchoscopy and he had cancer everywhere in his lungs. I couldn't imagine how they could miss, but it's pretty typical. The scope only can go a little bit into the lung beyond the bronchial tubes. My husband eventually had a VAT's wedge section for the conclusive diagnosis.

Sarcoid is known to light up on PET scans.

Good luck getting this handled so some type of treatment can begin, one way or another.

Regards,

Welthy

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A PET scan shows any metabolized live cancer cells. It is one of the best ways to measure the cancer. My mom has had CAT scans that looked okay and then the PET scan showed what was really going on. You need to push. The second thing is any good doctor wants and encourages you to get a second opinion. Sometimes with doctors you have to be persistant. If they still refuse you have a right to all of your medical charts. You can contact medical records and get a copy of everything, which you should regardless of anything. I get a copy of everything. Then you can send this copy to the doctor(s)that you want to. They make disks now of all x-rays. Have them put everything with pictures on a disc so you can send those also. Make sure you get two copies of everything so you have your own copies. On more than one occasion I have had to take matters in my own hands. Doctors sometimes refuse to listen to patients because of self diagnosing on the internet. You know your body the best and you need to push. I had a problem last spring, no where near the seriousness as this,and no doctor would listen to me. It came to be three months later that I could not walk and persisted that my doctor see me. I only got in because someone cancelled. Come to find out I had a ruptured disc that fractured a vertebrae that pressed on my spinal cord and bruised it. The doctors tell me if I did not persist and come in that day I would have been paralyzed. Fight for yourself. Good luck, I will be praying for you!! Stephanie

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