← Return to New Here and need to learn fast

Discussion

New Here and need to learn fast

Lung Cancer | Last Active: Oct 31, 2023 | Replies (69)

Comment receiving replies
@vic83

Tests will give specialists a better idea of your situation.
Questions to ask:
Is there a Tumor Board at the Clinic where various specialists discuss your treatment options?
One should be given a choice of treatment options - which will depend on the characteristics of the cancer.
Ask the surgeons if they provide latest surgical options - like video assisted thoracic surgery vs. open chest. Ask Radiation Oncologist is they offer both Proton and Photon. Only some 40+ places in the US offer Proton radiation - a place that does is obviously very advanced - even if one doesn't need it. Ask Medical Oncologist what therapies they offer.
What is the volume of cancer patients and the volume of surgeries they do. Experience matters!!!
For example, my local Pulmonologist wanted to do a needle biopsy, but her own Radiologist refused to do it because it was too risky, and he could not get a sufficient sample to warrant such risk. Fortunately, my insurance allowed me to self-refer to Mayo. They knew what I had from the CT and PET scans and proposed a combined bronchoscopy with tumor removal wedge resection at same time. Then I went back and did a second nodule different lung, no biopsy. I then had SBRT on a third nodule, no biopsy. They know what I have and PET /CT scans direct things. So far it is all stage 1, so I do not require chemotherapy.
Basically, one is looking for a high-volume center specializing in the area you need.
I agree with Merry, the Surgeon is not supposed to be my friend. I want someone very experienced, and knowledgeable.

Jump to this post


Replies to "Tests will give specialists a better idea of your situation. Questions to ask: Is there a..."

Hi and thank you! I’m responding to all in one response because today wiped me out and needless to say I’m extremely nervous.

In short, I called my Pulmonologist to see if he received the report and learned he’s on vacation this week. I think my heart stopped because they also told me they can’t send it to me until the dr reviews when he gets back next week. No, they hadn’t received the report and would call me when it came in, and would fax to the other drs. then stating that they’ve seen them take up to 5 or 6 days. Moments later Dr #2’s office called me and told me I must bring the PetScan disk with me. I was working, so called the hospital and by some small miracle got a live person who promised to get the disks made but told me the report still wasn’t ready so to give it a few hours. I went at 3:30 to pick them up and was told the report still wasn’t ready and that they have up to 72 business hours, excluding weekends. Had to rush back for a meeting when my pulmonologists office called me and shared that they hadn’t received the report (I knew this) and that the girl is out of the office tomorrow morning and no one else has access to the system that receives reports.

I am grateful that I have the PetScan and CT Scan disks for each dr and assuming they will know what they are looking at with the PetScan without a report.

The questions you guys posted are so appreciated… I honestly can’t thank you enough! I’ve taken snapshots of them so they are neatly in my file on my phone.

Please if you’re so inclined say a prayer for me.

Will hopefully be up to sharing what happens tomorrow in the evening.

Thank you ALL!