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Multiple Lung Nodules elevated D-Dimer: How do I stay calm?
A bit worried and now the wait happens to get further testing.
Went to the ER with chest pain. Which six days later remains. They did all the tests for a heart issue first EKG, then x-ray , then a d-dimer. The d-dimer was elevated above the normal range. Dr issued a CT scan to check for blood clots. Found a 6mm ground glass nodule in bottom left long and two more smaller nodules in the right lung. First Dr completely missed the nodules on the CT scan and said everything was fine no blood clot in the hear. And my d-dimer may be elevated from a bruise. (There is no bruises anywhere on my body) I then asked about the multiple nodules. He said he's sorry he missed it he was just skimming to look for a blood clot. Then informed me that it's no big deal they are tiny and lots of people have them. Gave me ibuprofen for possible inflammation for the chest pain. And a referral to a pulmonologist. So now I wait with complete fear, because of course we all do a bit of google. And that has led me here. Still having on and off chest pain three days since going to er. And now the looming thoughts of worry until I can get into a Dr apt for further testing. Any and all advice would be helpful. Besides I am doing breathing relaxing (as much as one can) and knowing there is nothing decided yet .
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Having a consult with a knowledgeable Pulmonologist is the thing to do. Just check their background to see that they have a subspecialty in lung nodules and lung cancer. Specialists have different subspecialties so a Pulmonologist not specialized in that area will not be the best help for you. I had that issue with my first one, so I quickly changed.
Surprising about cost of your PET scan. Your PET scan cost you over $10,000? Out of pocket?
What kind of insurance is that? I had a PET scan in January at Mayo Clinic and the "retail" price (charge first submitted by the medical provider) was about $8500, but Medicare sets it own price and then pays 80% of that so Medicare paid about $1500. I am responsible for the 20% of the amount set by Medicare (not the original charge submitted by the medical provider) and that was then only about $340. Insurance companies also agree on pricing with the provider. The only people paying full original "retail" price are people without insurance. It has been written about - no one knows where these prices leading to providers submitting extravagant charges come from and no insurance accepts and they all pay much less.
I have a type of lung cancer with multiple lung nodules which are all considered primary lung cancers (independent originated in the lung and not from somewhere else). Depending on how things are going I do CT scans every 3months sometimes 6 months. They watch to decide when it is time to treat one of the nodules.
I do periodic PET scans because they give a different type of information. The CT scan tells them if the nodules are increasing in size, the PET scan tells them if they are probably cancer by the amount of uptake.
Last year I had a situation where the CT scan was talking about one nodule in one lobe that was growing while the PET scan indicated a different nodule in a different lobe had more uptake. So they threated the one indicated by the PET scan first and months later treated the other nodule. PET also shows if there has been any metastasis to other parts of the body.
I have found that recommendations made by radiologist in scan reports are very informative as to the next step. And one wants the Specialist to decide on what and when and not a general doctor.
I am in year 2 of lung nodules and one ground glass. They are following up with them over periods of time to see if they grow. So far, the six month and eighteen month checks were fine--no increase in sizes. I've had repeat CTs and one Pet Scan at the beginning of the journey. I have to return in two years. I am going to an oncology pulmonologist.
Hi @liz77, Feeling anxious is perfectly acceptable when facing the unknown, especially after watching your mother go through treatment for a brain tumor. Was her tumor able to be treated?
You are right to want to watch these nodules, and hopefully the pulmonologist agrees. They may go away, but an increase in the number of findings is concerning. I would ask the pulmonologist if these other opacities may have been there before and only noted by the later radiologist. Different radiologists will often pick up on different findings. Having two CTs to compare side by side should show the differences.
In 2020, I had obvious cancerous lung masses. But in late 2023, I had a nodule and swollen lymph nodes that turned out to be fungal (no known source of birds or bats). A lot can happen to our bodies, and they try to protect us, and they can be very resilient with the appropriate treatments. It's good to be prepared but try to focus on the challenge in front of you, not the challenge down the road.
I'm also sorry that your insurance company is making this process more difficult. You sound like you're on top of this but be sure to work with the provider ordering the tests to make sure the reason for the tests is clear and coded appropriately. Will your insurance cover the repeat CT scans?
Hi Lisa, what size is your largest nodule? That is very important! I also have several lung nodules in both lungs. Any size over 5mm CAN be cancer. You are very wise to get a couple of opinions and carefully watch for growth. At UCLA I insisted on a biopsy of a left lung small nodule and it was cancer. That also meant that the nodule on the right lung, same size, was most likely cancer too.
I have learned to be my own doctor, get several opinions and be aggressive! I have been Stage 4 since 2020 and still kicking 😊
Lisa, what size are your nodules?
Blessings 🙏🏻
Janna
Hi,
Is there anyway you can receive some kind of medical insurance? Do you qualify for MediCal? Maybe discuss with your doctor or Hospital Social Worker for any of info. Ask questions because there may be a way for $$ help!
I had similar size nodules (7mm), and insisted on a biopsy at UCLA. Fortunately I did because it was cancer…..both lungs. I have learned during my cancer journey to be my own doctor, ask questions, be aggressive and hang on to HOPE!
Please don’t hesitate to ask me anything. 🙏🏻
Janna
You absolutely need to be your own patient advocate in today’s Medical Arena. I had to go as far as another State after I did due diligence & research! So sad!
Hi Janna, @jannam, I'm not sure if your comment was meant for me, or for @liz77. My nodules and lymph nodes have all been biopsied, I agree that the pathology of the nodule is important when determining if it is cancer and when determining what treatments may be most effective.
It's nice to hear that you are doing well. I was also diagnosed stage 4 in 2020, and I'm still here!