New Here and need to learn fast

The PET scan will indicate places on your body that are suspected cancer but it is no replacement for a biopsy. Sounds like your doctors are going straight to surgery? So I would ask them why they aren't doing a bronchoscopy or a needle biopsy before surgery. How are they sure it is cancer before invasive surgery?

Oh I don’t know that they plan to go straight to surgery, I only know that I have these 2 appts with Thoracic surgeons and from what I recall of the blur of the phone call with my Pulmonologist he talked about getting me into Thoracic surgeon as soon as possible for Biopsies/ staging and the PetScan asap. He even said something about chemo/ radiation and an Oncologist but I can’t remember detail. Mind you I was completely in shock as this call from him was as soon as I got home from the ER/CT Scan - it’s all a blur 🙁

When they did my biopsy on my lung it took about a month for them to schedule it! That's not the usual though. I'm not sure why it took so long because I had had a PET scan right away and it showed that there was something on my lung, and they knew I had cancer on my intestine at the time. It all depends. I think on how quick they can get you in for a biopsy, but if they think that's cancer they're going to probably try to move quickly. I also am so happy when I hear stories like the above person that messaged you and told you that they've been living for 23 years after they were found to have lung cancer. It's amazing what they can do now. In the last 3 years they've come leaps and bounds. Lung cancer is not a death sentence anymore. It certainly isn't good, but it's not the death sentence it used to be. I think anyone on here will tell you that!
I would not blame yourself for not pushing things because the doctors thought it was GERD. I mean you're just a person. How are you? To know, you're telling them what's going on come on the symptoms you're having. They should have probably been more proactive since this is what they are paid for. There's nothing you can do about it now, but don't blame yourself for sure. If you feel uncomfortable with any doctor you see, I recommend moving on to someone else as soon as possible. Sometimes you want to wait until they get things under control to make a switch, but I always think it's important to like your doctor and feel that you can ask them things without feeling like your being talked to in a condescending way, or that you cant ask questions. I hope the results will come today, but I don't like that they put a stat on the results of the PET scan. That usually means that they're seeing something that they want someone to look at as soon as possible. Like the person said above though, have someone around when you get the results and try not to panic. Because I'm telling you that there is many options now along with immunotherapy. That's why it's really important that you do find out which strain of cancer it is. If it turns out to be that. And it's very important that you get genetic testing done because that will tell them how well immunotherapy is going to work on you, etc. I have had numerous rounds of genetic testing done. Fortunately, my genetic testing has always been free, they are interested in the mutations that I have in my DNA because I have Lynch syndrome and I have some things going on that they've never seen before with the lynch syndrome in DNA, so that makes them very interested... 😞. Your doctors will probably recommend that if this turns out to be a cancer. But let's cross our fingers it's not!
Keep us updated. I'm hoping you'll get the results back today or tomorrow. We are all thinking about you here!
Angela

@sayitisntso- Good morning. A PET scan is a technique that uses radioactive substances known as radiotracers to visualize and measure changes in metabolic processes and other physiological activities, including blood flow, regional chemical composition, and absorption. It is also used to evaluate organs and/or tissues for the presence of disease or other conditions. The most common use of PET is in the detection of cancer and the evaluation of cancer treatment. PET scans show hot spots where a lot of blood is moving, indicating various situations. It doesn't diagnose but gives lots of information so your doctor can, along with a CT scan and biopsy.

When I told my husband I didn't like my surgeon, he said it didn't matter. Surgeons aren't supposed to have personalities. They are supposed to be surgeons. lol. And he was right and 26 years ago he's my friend and one of the funniest people I know.

However long it takes for your test results to take, is the time that you need to wait. I think that it's in your best interest to find a way to calm down, either with long walks or medication. I could feel my breathing increase as I read this post. WOW! You will probably need your family around you for support and care, so there's a good chance that they will pick up your anxiety. A support system is imperative during a cancer journey.

Your anxiety is palpable as it should be. Cancer sucks and is frightening. Waiting makes things seem worse. But until you have your results, and results that you understand, you have what I say is "free-floating anxiety".

Lung cancer is not a death sentence. There are many advances that have occurred over the past several years, many of which are considered more chronic than fatal. My cancer, Multi-focal adenocarcinoma is considered a chronic cancer, at least in my case.

The next time you go to the doctor, any doctor concerning cancer or possible new tests, bring someone with you 1`to take notes. I doubt that anyone can remember explanations alone, even with copies of test results.

I love your use of feeling like you are in a hurricane that's going very fast. You are, but you can control the speed by researching every term that you don't understand. You can reduce your feeling of being out of control by making a list of priorities. These will probably change as each test result comes back.

Keep a journal of your feelings and necessary tasks as they come up. By writing things down and setting priorities, you will be taking control of your personal life, your self-care, and anything else that you consider important.

Next, log things that you will need to do for each test result. If it's a biopsy, the time and date and any need for transportation and/or home care.

I hope that you will keep us up-to-date on your test results.

Merry

PS.
The PET scan is going to show any cancer or infectious areas, and they do use it to help with staging. Biopsy will confirm, and tissue samples will be taken to find out what sort of cancer, etc. If it is cancer they are going to want you to make an appointment with an oncologist. You may have to make an appointment with the special oncologist the deals with the sort of cancer that you have. All this is a process, and it all takes time. It's enough to make you go crazy when you're going through it. We all understand! It sounds like you're really learning a lot on here and reading all the posts which is great. The more information you have when you talk to your doctors and understand the process the better.

As far as seeing that doctor that you read was condescending, a lot of times. People only post reviews when they are disappointed. You don't see the good reviews. If your doctor recommended him I would go see him and if you don't like him, you can always change. Some questions that I would ask would be anything that you are questioning in your head now, time frame for a bronchoscopy, time frames to get back the biopsy, if they are going to do surgery, how long are you going to be out? Are you going to need help at home and if so, how long. How long will you be in the hospital? Is there any other options that you may have besides surgery? Are they going to do chemo if it's cancer, and are you a candidate for immunotherapy? Some of these questions are probably for your oncologist (if you need one) but they can definitely be asked of your surgeon also. All the doctors work together. They're all sharing information about you and what they're going to do.
Please let us know if you hear anything. Thinking of you!

"Are there any top 5 or 10 questions I should ask the Thoracic Surgeons that I’m meeting with on Tues. that you did or wished you had asked?"

After the PET scan they will have a good idea of where the suspicious areas are located. At that point they should be able to tell you how they plan to get a biopsy of the area. Needle biopsy and bronchoscopy biopsy are least invasive methods, but depending on where the tumor is, they may not be able to reach it easily. If the doctors can't collect the biopsy any other way, they will suggest surgery to collect the biopsy and then if it tests positive for cancer they will continue on while you are under to remove the tumor. So I would want to know their plan for getting the the biopsy. I would ask;

1. Is it possible to do a needle biopsy to diagnose the cancer?
2. Is it possible to do a bronchoscopy to diagnose the the cancer?
3. If they are planning to do surgery to collect the biopsy then I would ask why they can't do a needle biopsy or a bronchoscopy (both less invasive) to collect the biopsy.
4. After they collect the biopsy will they send it away for a complete genomic work up? (You will need genomic testing of the biopsy to see if targeted cancer therapy is an option.)

5. Is it possible to avoid surgery and use SBRT (radiation therapy) to kill the cancer instead of surgery? What are the advantages of radiation to surgery? (if you have other health issues, you may not be strong or healthy enough for surgery and radiation might be a better option.)

If it is decided that you are going to need surgery to the chest, then I would ask;

1. Is there going to be pain while you are in the hospital? What happens if your pain is not managed at the hospital? Is there someone on duty 24/7 at the hospital who can increase your pain medication in the middle of the night when your surgeon is off duty? How do you contact that person if you need them?

2. What will this surgery do to your breathing? Are you going to be short of breath for the rest of your life? Slightly short of breath or severely short of breath? Will you still be able to go up a flight of stairs without stopping?

3. Is there going to be long term pain in your chest area years after surgery? (I still have pain in my chest scar and it has been 23 years since surgery! I can't take pain meds so I just had to learn to live with it.)

After surgery and they remove the tumor you will get a pathology report with more details of your surgery. It will also discuss any nearby nodes that were removed and biopsied. Depending on the pathology report, you may need chemo or radiation following surgery. It just depends on what they find when they open up your chest.

I hope this gives you some idea of the process. There's much more but I don't want to clutter things up with too much detail.

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.

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!

You don't say where you are located but if you are in the US your reports should be posted online without waiting for your doctor to tell you what is in them. That is the law.
To see them you should create an account with the providers. A small provider will send you a link and temporary password. Larger clinics have much better sites and include everything.
Have you talked to them about posting reports online? I see ALL my reports (and test results) as soon as they have been written. I read them so I know what to ask the doctor and have some idea of what he/she is talking about. Also read the Doctor's visit notes which should be posted as well. Many of us have noted that there are mistakes in Doctor's notes.
Also most places will send your scans electronically or fax to the next provider for you. You don't need a CD.

US LAW:
The 21st Century Cures Act became law in 2016 to improve access, exchange and use of electronic health information. The information-blocking exceptions, which went into effect in April 2021, codified provisions that required nearly all electronic health information – including medical test results – be made immediately available to patients once the results are ready.

Thank you. Yes Im in NJ and look at test results online in patient portals all the time and didn’t realize they will be loaded immediately to the patient portal. As mentioned, the woman in the dr office yesterday said she couldn’t share with me until reviewed by the dr. Hopefully the hospital where I had the PetScan loads it or fax’s to dr right away. Interesting though, I did look at the hospital portal where I had the CT Scan done last week to see if there were any notes and it’s not loaded there yet or on my Pulmonarys patient portal yet.