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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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So sorry to hear you have to go through this. It sounds like the doctors are on the right track with ordering a PET scan, the PET scan is looking for cancer. That's not saying that that's what you have but they have to look and make sure whether it is or not! It could be something completely separate from that little lump that you're feeling, but it could be related. Keep in mind a CT report is going to mention anything that it sees. Even if it's something that's irrelevant or benign. The partial lung collapse must be somewhat minor for you not to be short and breath or have been in pain lately, however that bruised feeling was probably you feeling something was going on. It's amazing what our bodies will do.
I can tell you the PET scan is going to tell them an awful lot. It will tell if that's more than likely an infection or if they believe it's cancer. The biopsy will confirm anything the CT scan or PET scan shows. It sounds like is a small nodule? So hopefully it is contained to just that. And if it is that's why they would use radiation or chemo on it. My stepmom had a cancerous nodule and they performed six five minute radiation sessions. It was gone after that!
All these things take time unfortunately. Try not to panic, try not to think negatively even though that is extremely hard to do. Looking things up online might just drive you insane and scare you! I know from my own experience. In January I went in to the emergency room because I was coughing a blood. The CT scan at the hospital showed a very large mass on my right on lung which was over 3 in, the PET scan showed that it looked like cancer because it lit up like a Christmas tree but the PET scan report said that the uptake of the dye they use was more in line with an infection. The biopsy was the last thing they did and it confirmed that I had a
Lung infection called MAC but there was a long time where they thought it was cancer, almost every doctor thought that! So until you get all the results back, just take some breaths and remember there's a lot of things this could be!
You said you smoked but quit, sometimes you get nodules in your lungs just from having infections such as bronchitis or pneumonia. Especially if you live in a cold climate. They need to figure out why your lung collapsed in that area. It sounds like they're doing all they can and trying to do it quickly which is good for you. The longer we have to wait to find answers the harder it is.
This is a great place for support. And to get people's opinions and to hear other stories. I mentioned that I went to the hospital in January and they found that infection, but they also found cancer of my intesine when they did the PET scan. Not only did I know I had cancer in my intestine then but I also thought I had lung cancer. It was a horrible time in my life. This site helped me a lot. I had the cancer removed and the tumor was actually pretty large-they took 17 lymph nodes and all were clear for cancer so I was very fortunate. An extremely grateful that the mass on my lung turned out to be a large cavity, an abscess from the Mac lung infection. And when I say cavity, yes I mean a huge hole in my lung!
Just hang tight. Ask anything on here. People will be glad to help and to give you their support and answer any questions you may have. There is some really great stories on here, there is people from all walks of life that have been through all sorts of sicknesses and illnesses on here and they're still here pulling through.
I wish you all the best! And once again I'm sorry you have to go this, just stay proactive and positive. You'll get through this!
Angela
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3 ReactionsThere are no words for how grateful I am to wake up to your response. You just gave me a much needed broader perspective that it may not be the worst case scenario (my biggest immediate fear/concern is definitely around my drs urgency) and rather ‘could be’ a number of things that don’t have to equate to that worst case scenario.
Every word you shared is helpful! Thank you so much!
I am surprised at the partial lung collapse and the ER dr. said that often is the result from a mass pushing on it but it didn’t ‘seem’ to me from what he said that it was the same area where the 1.8cm nodule was seen or anything was seen so that confused me and I want to push getting the external bump removed and diagnosed asap vs holding off.
Question for you- On the PET Scan.. did they let you see it the day they perform the test or not share until they give results to dr? I am scared but at least know to look for anything lighting up or glowing.
By the way congrats on what seems like you came out the other side from multiple scares with best case scenarios.
Are you now still dealing with it or cleared and feeling well?
@sayitisntso, Welcome to Mayo Connect. I wish you were here under different circumstances. Waiting for health-related information can be the most stressful time of your life. Take a moment to pause and try to think about what you actually know. Try to avoid thinking about the worst-case scenarios. The doctors have identified something that requires more investigation, but we don't know that it's cancer. It sounds like they are taking the right steps to get the answers that you need. It's great that they are moving fast with your next appointments, it's less time to wait for answers.
Once you have the PET scan, a radiologist will read the results and write a report. That report will be sent to your doctors, and you may see it post to a patient portal. The report is a communication tool between the radiologist and your doctors, the language can be very clinical and confusing to us patients. So, talking to your doctor is the best way to interpret the meaning. It sounds like the report for your CT came back fairly quickly. You are fortunate, some wait longer for answers.
I wouldn't change any travel plans yet, as long as they don't conflict with the PET or follow up appointments. Your health needs to be prioritized before work, which I know, isn't always easy.
It is interesting that you're not suffering more from the collapsed lobe, did the pulmonologist give any additional info about the collapse?
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1 ReactionI audio tape all my Dr appointments. That way I can go back to listen to what they said
Good luck and there is hope. Stay as positive as possible. It’s difficult but helps
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1 ReactionThank you and I will be. I did record the ER dr but when my Pulomonologist called it was unplanned and on my mobile. I totally plan to record going forward.
Thanks for your response, it’s truly appreciated.
Actually no, I think my pulmonologist was scratching his head on that and also the burning pain that brought me to him is on the left side which doesn’t immediately make sense. By the way, I still have the burning and oddly.. One Tylenol w/ advil thankfully relieves it for a while.. I’ve only taken the combo twice a day Since Monday. I just don’t know what to make of that.
That’s the only symptom I have at this time.. along with the growing bump on my rib 🙁
So the pet scan results won't come back for a few days, 2 to 4 days probably. A radiologist has to go through the results and then it also gets read by special software. They use a special dye containing radioactive sugar FDG and it depends on how quickly that sugar binds to the area of cancer or infection because cancer cells or an infection consume more energy than healthy cells or non-infected cells so it makes them light up. The more they light up and the brighter they light up the more damaged the cells are. When the results are in, they will schedule an appointment with you and go over the results. And yes they will show you the PET scan. My doctor pulled it off right on his computer and we're showing me the areas of your body that light up automatically, like your head. Don't be alarmed if you see your head lit up, it's the major organs that they're really going to be focusing on. And for you, you're lungs. On my PET scan I could see the area of my lung that was lit up and the area of my pelvis that was lit up, both were bright but there was more intensity to the one that was in my pelvis because that one was cancer. It was really subtle though. . And that's why they use a computer to analyze the results of the pet scan because it's not only that something is bright. It is how quickly those cells uptake the FDG that really matters. Cancer will have a much with it at a higher uptake than an infection.
I think it's strange that that nodule is nowhere near where the lung collapsed. They didn't say they saw anything where that lung collapsed? They don't like to see a lot either until they have something they can tell you. And they certainly don't like speculate.
I'm really hoping that it's going to turn out to be something that is not that serious. But even if it's serious, let's say it's the worst case scenario..
Please know that there is so much they can do now that it is honestly amazing!!!
I just had a CT scan about 10 days ago and actually it showed the infection has completely cleared which is really surprising because I haven't been on the antibiotics for that many months. These lung infections like I have are very rare and hard to get rid of. I have to take antibiotics everyday, strong antibiotics and I also use a nebulizer with antibiotics in it. I won't know what that all means until I see my infectious disease doctor next month. But things have gotten far better from me since they were last January. And they will for you too!! All this stuff takes time. Even when they find out what this is, every step they do takes time, and it's traumatizing and hard emotionally. But you can always turn to people here, you can always get support and ask questions. I can't tell you how much being on the site helped me!!!
I hope you're feeling a little bit more hopeful today and trying that to worry too much. Whatever is going on in your body has been there so now it's just a matter of letting the doctors figure out what it is, and then fixing it. It's just one day at a time so be gentle to yourself!
Angela
Thank you so much for your thoughtful response and more information. I had no idea that the PET Scan results would take more than 24 hours max. Very helpful to know.
Congrats that antibiotics appear to be helping you!
I was hopeful this morning after seeing your response and then my phone rang. My Pulmonary Dr called the Thoracic surgeon and they called and want to see me even before the pet scan. That scares me.
I figured out what they are most concerned with.. and now completely freaked out.
Here are what the summary impression says:
1. No evidence of pulmonary embolism.
2. Partial lobar collapse of the right middle lobe is suspicious for underlying endobronchial lesion.
3. This is the scary one! Lyric lesion within the sternum which is suspicious for metastatic disease particularly given the above finding
4. Small right pleural effusion
5. Non specific subcutaneous nodule in right inframammary region.
Above this where it says bones/soft tissues: lyric lesion involving the sternum with a suspected soft tissue component extending into the anterior mediastinum. 1.8 cm subcutaneous nodule in right inframammary region with surrounding inflammatory change appears to abut the skin surface. —- this is what I wonder if it could be my bump on ribs because it says skin surface but I don't know what I’m reading.. I could be way off base
My pulmonary called in another antibiotic for me called cefpodoxime Pro. I googled and doesn’t seem like anything out of the norm.. not great reviews either.
One more thing.. Thank you for all the detail on the PET Scan and what lights up and what they will be looking for! Very Helpful!!
If there are any questions you’d recommend I ask please share. I have no idea what to ask. I’m just stunned that the surgeon doesn’t want to wait for the Pet Scan results so he has more info.