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New Here and need to learn fast
Hi, I am in shock and don’t have much to share yet other than how I got here and really hoping I can get some guidance on what I need to ask and research quickly. I will likely share some stuff that isn’t even relevant but maybe someone will see a connection that can help me piece together next steps and/or questions so please bear with me.
Background:
For YEARS as far back as I can remember I’ve had GERD. Multiple drs have done various tests and have told me my cough when I sleep and wake in the morning is from Gerd/acid reflux. I mention this only because that’s been a concern of mine for many years. I cough up phlegm when I lay down and get up on the morning… totally fine the rest of the day. Never heart burn. There’s a name for it but basically silent Reflux. The coughing up phlegm has definitely increased in the past few years but again, 20 minutes after getting up in the am I am fine for rest of day.
I am a former many years smoker of 1/2-1 pack a day so I’ve always had an expressed interest whenever I had any testing done of ‘how are my lungs?!’
Not sure if this will ultimately prove to be relevant or not but On August 25th I was getting changed and noticed a pea sized bump on my rib just under my breast. I went to my primary dr. Who said this is a nothing burger.. soft, movable under your skin. No need to do anything BUT in the past 3 weeks it’s tripled in size and is now tender. I made an appt with a dermatologist. Just after I went to my primary I started getting this gnawing burning sensation in my upper left chest and for lack of a better way to explain it seems tender and that feels bruised or like a pulled muscle. No issue breathing but when I cough it hurts/burns so after 1.5 weeks I went to a pulmonologist. He is excellent and said I’m guessing you have a touch of bronchitis, here’s a slack and inhaler but let’s get a cat scan just to rule out pulmonary embolism. The very next day before my insurance approved the cat scan was my dermatologist appt for my bump… he really didn’t say much other than let’s make an appt, to take it out and see what it is. That appointment is not yet made. My pulmonologist said yesterday to maybe hold off on that because he doesn’t want to do anything to affect what seems like a quickly upcoming biopsy however I can’t help but want the results of what that is!
Fast forward to yesterday.. cat scan day.
Never did I expect this but here I am. I am told my middle lobe of right lung is partially collapsed. lesion on my sternum which seemed to be the biggest concerning marker both to ER Dr when he told me and separately my pulmonologist when we spoke later. There is something on the report about a 1.8 cm nodule near skin and I can’t help but wonder if that’s my bump mentioned above or inside the lung. I don’t know how to read this darn report. In short my pulmonologist wants an immediate PET Scan, wants me to see a thoracic surgeon for biopsy and was talking about likely chemo and radiation. It’s all a blur. I was scribbling notes but I they are jubberish to me today. I was in shock.
Obviously at this point the serious concern from my dr alone has scared the heck out of me.
Please if you folks can guide me with most important questions to ask.. what tests (if any) I should request, what plans I should make, what to expect .. really anything I would appreciate it.
I travel pretty frequently for work.. I obviously can still do that but have no idea what tomorrow, next week, next month or next year looks like for me now. That alone is overwhelming.
My kids are grown and live out of state. I live alone so really just trying to absorb this and don’t want to freak them out. I don’t want to over or under estimate the severity of this. I think for the moment I am doing both depending on the hour. I don’t know what I don’t know but my dr really sounded like we need to move fast.
PetScan is scheduled for next week.
Any and all advice is needed. If you have questions about the report findings I’d be more than happy to share more specifics because I don’t know what’s big and bad vs what really is not necessarily bad. Like I said lesion on sternum is what I repeatedly seemed to pick up from both docs as well as the partially collapsed mid lobe right lung and from what I can tell from the report it’s seems suspicious that a mass or nodule caused it but doesn’t seem like they actually saw one there?
Sorry for the long post! Happy to share my report if someone here is willing to decipher
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I wonder if they don't want to wait because they are worried about your lung collapsed and let's face it -They do this everyday, so if they are this concerned and want to get you in right away, something on the CT scan is concerning enough for them that they believe they can move forward or at least start planning prior to the PET scan. They are going to probably use the pet scan to confirm what they think... But I think they want to get you on the schedule and get the ball rolling in case it is whatever they're thinking this is. That is a little concerning what you wrote about the Lyric Lesion... But, this is why they want to see you right away and they are going to try to get things moving and taking care of as soon as possible!! It sounds like you have some good doctors. And your pet scan results could come back sooner, but usually they take a little bit, but it all depends on how quick the radiologist reads it. That's what it all depends on. I'm not sure where you live, but if it's in a smaller rural area, it might get red within 24 hours. I hope it does! I know what it feels like to be waiting for those results. It's horrible.
I know how you're feeling. I feel for you because it is so frightening. The unknown is worse than knowing.
I want you to be very confident in knowing that no matter what this is, they have things they can do now that are so remarkable! They have come leaps and bounds even in the last 3 years. I want you to know that there are so many people on here that are going to have had the same exact thing you do, when you find out what this is! They are going to be here for you and you are going to be able to lean on them and learn from them.
Try not to think too negatively though even though the surgeon wants to see you right away. They just might want to be planning what they're going to do because of that collapsed lung. They have to take that seriously, and regardless of what this is, that may require surgery on its own.
I am thinking about you. If you want to talk at all, just send me a message. Please keep us updated.
Angela
Thank you again, you have been amazing for taking the time to respond and provide insight and so much encouragement. I’m in NJ so not exactly rural 😉 Will update as I learn more.
Just chiming in to say I moved my PetScan up to tomorrow and found by accident another Thoracic surgeon with excellent reviews for a second opinion who I will call today.
Also, in further googling… looks like the 1.8 cm nodule is the bump I developed under my skin. I literally had to google where the region was and it is clear that this bump location and subcutaneous definition means under the skin .. I’m telling you all these words are new to me so need to decipher word by word.
@sayitisntso, I'm so glad to hear that appointments are falling into place for you. I'm over three years into this process, and I'm still looking up terms and trying to decipher reports. It isn't easy, but the more you learn the better! Best of luck with your PET scan tomorrow, try to relax. Deep breaths.
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1 ReactionThank you!
I recommend reading all reports and not depending on the doctor to provide full picture.
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1 ReactionGlad you have sooner PET scan. We all know what waiting is... you will find that a PET scan gives a different perspective than a CT scan. I have multiple nodules that are cancer. In my case one CT scan said one lung was stable and the other had a growing nodule. The PET scan said the "stable " nodule was much more concerning with higher uptick than the other nodule. So I had surgery on that one immediately and later had radiation on the other. There are reasons when one treatment is better choice than another - like location, how solid etc.
I just googled and googled to understand things. Medical speech is its own language also. Using medical terms in searching can give better results also. But I feel more in control when I understand what is going on.
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1 ReactionHeading out now for PetScan, thanks for your post and yes I need to do two things.. record the drs and rely on google to be ask it down. Im definitely trying to find any sign of hope with all my googling but this is scary 🙁
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1 ReactionAs a Stage 4 lung cancer survivor, I'm starting to give talks on Lung Cancer Awareness and Prevention. Based on my experience, I'll offer a couple of points.
1. Don't do research. Or, if you do, don't take your understanding too seriously. You're not going to replace a medical degree with a Google search.
2. Probably the most useful questions are those that ask your doctor what he/she is thinking, planning, believes is a possible explanation of what's going on, etc.
3. If or when you get a cancer diagnosis, be ready for the whirlwind, as I call it in my presentation. Once they know you have cancer, they want to get it out!
4. Don't overreact to words like "suspected metastatic ...". I had that in late July. I've been getting a CAT scan, brain MRI, MUGA scan (heart), and blood tests for 2 or 3 doctors every 3 months for the last 3 years. Two successive CAT scans showed lymph nodes that had grown by 50%. I had another blood test, specifically looking for tumor markers and a PET scan. Then I went on vacation! I told my wife, "Until I'm diagnosed with lung cancer again, I'm still cancer-free." I enjoyed my vacation, came back, met with my Oncologist, and all tests came back negative. Don't worry until you know you have something to worry about! Negative emotions harm the physical body.
5. A PET scan shows where the body is sucking up sugar. There are three reasons a body does that: inflammation, infection, and metastasis. When I was first diagnosed in 2018, my Pulmonologist said he had seen an infection absorb more sugar than my nodule was. Nonetheless, the biopsy showed my nodule was cancerous. In your case, you're being prescribed antibiotics. Maybe infection is causing all of your problems. Realize that statement is complete speculation and should be valued accordingly.
It's important to remember that in these circumstances, we're not in control. We're just along for the ride. Trust your doctors. I agree that waiting is the hardest part, but we certainly don't want a rushed judgment. Look on the bright side. You didn't know you had a partially collapsed lobe, and now it's being addressed!
Best of luck, and hoping for a positive outcome!
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6 ReactionsThank you so much for this response. I read your response while in the room for 1 hour waiting for my radioactivity to be ready while waiting for the PetScan and needed this in that very moment.
I’m so glad you are a stage 4 survivor!
What’s concerning me a bit is I know there is inflammation in my chest, it’s still burning and tender on the left side. I have to pray that whoever is analyzing the scan can differentiate between inflammation and anything else. I peeked at the scan images on the monitor on my way out, I saw bright yellow areas but of course I have no idea what I was looking at, it was just a quick glance. I just have to pray that’s inflammation.
Thank you again!!
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