Daughter here trying not to drop her basket

[Alysia]

I never had positive biopsy. but I def have WG.

[marylz]

Same here Alysia. Sometimes the symptoms are overwhelmingly WGs and a biopsy is inadvisable.

[LindseyRN]

An update for everyone:

We just returned from my Dad's pulmonologist appt. a little bit ago. We are mostly happy with the news. It's the best case of a worst case scenario. The doctor said the 1.5cm nodule did light up on the PET scan, but just to be sure of what kind of nodule it is, he wants to biopsy it next Monday. The PET scan report said the small nodule is highly suspicious of malignancy but neither infection nor inflammation can be completely ruled out. The doctor said even if the biopsy comes back negative, he still wants to remove his left upper lobe to be cautious. The good news is that Dad's surgery can be done laparoscopically (VATS) and will be curative, because it was caught early and he has no other nodules or enlarged lymph nodes anywhere in his body. The pulmonologist said this is great news and my Dad will be fine. We hate that he has to go through all this, but once it's all over, he should be okay.

We are assuming further WG treatment will be on hold until after his biopsy and subsequent surgery. I called and left a detailed message with his rheumatologist's nurse.

I will post his PET scan results tonight so I can get any opinions you all my have on that.

[pberggren1]

I would think that the mtx would be on hold now til after the surgery. What did the pulmy feel about that?

[LindseyRN]

I would think that the mtx would be on hold now til after the surgery. What did the pulmy feel about that?

He didn't mention it. I called and left a message with the rheumatologist's nurse today regarding the plan for biopsy next Monday and surgery most likely week after next. I figured the thoracic surgeon would make the call on which meds he needs to stop. I do want to get all that straight ASAP so there won't be any delay with removing the nodule.

[LindseyRN]

Below is the significant part of my Dad's PET scan results. Basically, the entire report up to this portion states everything is normal and unremarkable.

PET portion of the study: The biodistribution of the radiotracer is unremarkable. Focal hypermetabolic activity is noted throughout the left upper lobe mass with maximal SUV uptake of 6.3. This is highly concerning for neoplastic change and not due to granulation or inflammatory tissue. Recommend biopsy. No abnormal focal high hypermetabolic activity elsewhere in the lung parenchyma, mediastinum, osseous structures, liver, adrenal glands, or retroperitoneum.

Impression: Abnormal PET CT with focal hypermetabolic activity throughout the oval spiculated 2.0 x 1.3 cm left apical lung nodule. No evidence of locoregional or distant metastatic disease. This is concerning for primary lung neoplasm. Recommend biopsy. Remotely, this may indicate focal inflammatory or infectious process.

So the radiologist says "...and not due to granulation or inflammatory tissue," but then closes his report with "...this may indicate focal inflammatory or infectious process." So which is it? The pulmonologist said it would be removed despite the biopsy result, so I guess it doesn't matter...but what if it is only inflammation or infection? A lobectomy is too a big surgery for uncertainty in my opinion...

[Alysia]

I would think that the mtx would be on hold now til after the surgery. What did the pulmy feel about that?

as far as I know, it is also better to be without pred if possible. I was told so.

[LindseyRN]

as far as I know, it is also better to be without pred if possible. I was told so.

Yes, I would think so too. Prednisone decreases healing time, increases risk for infection, etc. I'll make sure the surgeon looks over his current medications thoroughly.

[LindseyRN]

I'm not 100% convinced my Dad's nodule is a malignancy despite the PET scan. I'm neither in denial nor naïve. I just still feel like it could be Wegener's. Does that sound crazy?

[windchime]

I'm not 100% convinced my Dad's nodule is a malignancy despite the PET scan. I'm neither in denial nor naïve. I just still feel like it could be Wegener's. Does that sound crazy?

Not at all Lindsey. There are many here that have been misdiagnosed for years. In addition, he did have a positive ANCA and biopsy for granulomas if I remember correctly. You're just being realistic. Keep the faith and get some rest too.