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Help deciding on whether to send tests to Mayo????
Hello, it is my general understanding that Mayo is for elevated cases, ones that aren't best addressed locally.
Background: I had back fusion surgery October 16, 2023 and then rotary cuff surgery Feb 1 2024. Then I went to my primary physician for an annual exam. During that visit I mentioned I thought my breathing was different. Normally I didn't think about breathing but now it seemed like I was more aware of it. Not struggling but aware. She decided to run blood tests. All normal except my D-dimer was highly elevated. She thought possible blood clot so sent me for a CT exam. CT showed a 12 mm nodule and swollen lymph nodes. Hence she ordered a PET scan. The PET lit up in these areas so I was sent for a Bronchology. This test's report on my portal said no malignancy found. I was ecstatic. During my follow up appointment about the Bronchology, it seemed that they felt malignancy was still on the table. Something was making the PET light up. The tests for fungus types that would light them up were negative but mold was found in my lung(s).
I was given 3 choices: wait- and hope, do a larger biopsy if the 12mm nodule/mass through the chest. They couldn't reach the actual nodule/mass during the Bronchology due to placement (upper right posterior lobe) or do a wedge section removal surgery, not a small surgery.
He explained that something is causing the areas to light up on the PET but they don't know what for sure. Doing the larger biopsy could result inconclusive too and the only way to know if I have lung cancer is the wedge surgery. Remove the mass/ nodule as well as see the path of lymph nodes and decide plan of action after based on the findings.
Dr recommended the surgery removal. I'm not going to wait and if surgery is probable then my questions are:
Advise on doing surgery or start with biopsy. Doing biopsy would slow down getting on schedule for surgery.
Sending test results etc to Mayo for their opinion. To me this seems like an "odd" case. This too, I think, would postpone getting on the schedule for surgery.
Any other questions I am not asking or thinking about????
I'd be happy to attach test results etc if beneficial but they are hard to understand.
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@skm101, you have many good questions that deserve answers. I encourage you to submit a request to Mayo Clinic and speak about the possibility of a second opinion with a coordinator. Click this link to get started http://mayocl.in/1mtmR63
You can either fill out the form and a coordinator will call you at your requested time or you can call Mayo Clinic directly today or on Monday.
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3 ReactionsColleen,
Thank you for your input. I will begin the process of speaking with the Mayo Clinic. I feel more settled on what to do and to hear you think my questions are valid.
SKM
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2 ReactionsFWIW I agree. But I offer one scenario that doesn’t seem to have been offered.
In my case - a 14mm module in lower left lobe - they also could not biopsy it during bronchoscopy- so we started surgery, they kept me under while they did a wedge with the nodule in it and sent that to Pathologist, who was expecting it. Pathology proved it was malignant and the surgeon proceeded to harvest nodes to test for any metastases and then to remove the left Lower lobe itself. If the pathologist had said not malignant the surgeon would have just stitched me up.
Biopsy from wedge and prepared
to roll into lobectomy if indicated.
I also think you should get Mayo second opinion and have treatment there as well. The appropriate experience of any specialist is very important in evaluating these situations and in avoiding unproductive and dangerous procedures for the patient. Specialists has subspecialties.
Back in 2021 I had abnormal CT scan and PET scan. My local Pulmonologist wanted to diagnose me and wanted to do a needle biopsy (which can have serious complications!). But I knew she lacked lung cancer experience, and I insisted my scans be sent to Mayo (Mayo wants actual scans not reports). The next morning, I was called by the Mayo Pulmonologist and given a next day appointment. I had VAT surgery (wedge resection) three weeks later (Stage 1b cancer). I never had a needle biopsy. They did bronchoscopy (robotic) biopsy followed by removal of the nodule all in one sitting, so I didn't have to come back. I was driving my car a week later.
While waiting to see the local Pulmonologist, I started to call around to see where I could get in sooner. I called Pulmonology Mayo, and they suggested I set up an account with my info and then send the actual scans when they were done. They also told me that doctors will move some things around when it is the case.
P.S. I only had wedge resection without removing the entire lobe. Each case is different, and it is about conserving lung function. Having multifocal lung cancer, I had a second video assisted thoracic surgery with wedge resection on my other lung, again not removing the entire lobe.