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New Here and need to learn fast
Lung Cancer | Last Active: Oct 31, 2023 | Replies (69)Comment receiving replies
Regarding various comments on posting of reports - yes Mayo is excellent about posting results as soon as they are available. But other places do it too. I have patient portals with two other clinics (large networks) and each posts test results immediately upon being done.
And one of my clinics links with Mayo so everything shows up on both sites immediately. The other one for some reason does not link to my Mayo portal which is something they choose to not do. So I have to go directly there.
The problem is with small groups of doctors. They do the minimum required by law. In one case the doctor ordered a CT scan by a local Radiology group. The Radiologist sent the report to my Specialist's group which posted it and I could see it. I expect the institution which did the PET scan sent it to the ordering doctor immediately and that should be posted on your doctor's patient portal. I expect these organizations to do what they are supposed to do.
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Hi Everyone,
The news couldn’t be worse. Confirmed Stage 4 lung cancer and has spread to at least several areas (hot spots)… long story short, PetScan report still not done so both drs read the pet scan with the disclaimer that the report will tell more. My middle lobe of my lung didn’t collapse, it’s actually a mass. That bump on my rib, is also confirmed, sternum too and random small hot spots on back and I think adrenal and either liver or kidney. No surgery, straight to Oncologist however Dr #1 is taking me into the hospital at 6:30 tomorrow morning to take off the lump on rib for biopsy. He was going to send me to a pathologist but he was concerned that a fine needle biopsy which is all the pathologist at the hospital would do wouldn’t get enough tissue for the genetic testing and was already scheduled for surgeries tomorrow so called me after I left his office and asked if I’d be willing to let him do it in the OR tomorrow. Their mutual concern I think is that this bump on rib grew so quickly over the last month so they want the type of cancer identified as soon as possible. It was a terrible day and my daughter just flew in, she will be here momentarily so I need to be quick… my other daughter is coming in the morning. I will have a brain MRI, I think Fri or Mon., first dr didn’t suggest it but 2nd dr said let’s get it done to ensure it hasn’t gone to brain.. he didn’t seem to think it has but it is protocol. Both drs said the same thing, looking at me they would not have expected this diagnosis or that it’s actually advanced.
Dr #2 told me to ensure Dr #1 orders Genome testing or NGS Next Gen Sequencing with the biopsy.
Guys I am all ears on anything else you recommend.
Has anyone been Stage 4 that spread and here to talk about it?
Both Drs spoke very highly of the miracles over the past few years of targeted immunotherapy and TKI so I pray my DNA or whatever it is will be a match for it.
They both spoke of Chemo and both said no radiation because it’s spread.
I’m sure I’ll think of more. I think I’m too in shock to even think and my kids are beyond devastated so I need to fight this with everything I have.
Again they don’t have the report yet which will tell more but were both confident in what they saw. I knew after Dr #1 I didn’t need appt with the second dr but went anyway and glad I did.
I asked what size the lung mass is… they need to wait for report.. Dr #1 estimated 4cm… Dr #2 estimated 2cm. Both said size doesn’t matter at this point, what matters is that it spread.
Please if there are questions I should be asking let me know.
I’ll read back through the previous responses later.
I think my adrenaline combined with both kids coming has me in a bit of denial. It’s just surreal.
I don’t look sick. I can breath, I’m not coughing. SMH