CT and Lung Nodules
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Sandy, My inhaler is a corticosteroid not for asthma but for radiation induced pulmonary fibrosis. It is prescribed to stop the horrible cough caused by nerves exposed to air by the reticular remodeling of the interstitium. There's also the chance that it might prevent the fibrosis from advancing. Two different clinical trials were proposed (China and Mexico) but never ran due to lack of enrollment, not surprising since RIPF is so rare. The top two lobes of my right lung are shot; I'm hoping the current consolidation throughout the lung isn't a progression. Unfortunately this ILD gives me a 58% chance of getting lung cancer so my nodules are monitored.
Currently my inhaler is covered by part D but Anthem and three other insurance companies have pulled out of the state for next year and none of the seven plans left have it on the formulary. My pulmo will request an exemption but is also proactive. When I was hospitalized for several days at the end of July I ended up with inhalers for three months even though my other meds were given to me pill by pill. I really feel sorry for the many people on Advantage plans who will be kicked out of nursing homes if they can't find another plan to take them. Since NH is a state with an older population leaving is how health insurance companies can control their costs.
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Hi Ladies! I have been MIA the last couple of months, but I hope you all are doing well and had a good Thanksgiving with family if possible. Looking forward to a nice Christmas as well.
Maggie15,
The changes of the insurance this year is unreal! The Medicare advantage plans in my area are also very limited, and they have once again cancelled the type of plan I am on so I have to evaluate the options. It is a big old mess right now.
I wish everyone a blessed holiday season with as much love, laughter, and family as possible.
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Bookworm, It’s good to hear from you. Yesterday I signed up for the least bad Medicare prescription drug plan. At least my medigap plan is being continued next year. I hope you can find an Advantage plan that will work for you.
I’m glad you had a good Thanksgiving and have plans for Christmas with your family. We went to NYC to visit my son, daughter and their families at the end of September. They are all planning to come visit in January. I cooked a turkey for two of us on Thanksgiving and will do the same for Christmas since I like the leftovers.
Thank you for your well wishes. I hope you and your family have a wonderful holiday season.
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Hi there! I haven't posted in a while, and never on this thread. Unfortunately, I'm here with a solitary lung nodule that showed up on my CT scan. I requested the scan due to an occasional dry cough over the past couple months.
I just got the results on my portal today so I haven't heard from my MO yet. But it's a 12mm slightly lobulated soft tissue density nodule in my upper right lobe. I've been on verzenio for 9 months. I know it can cause lung issues. But of course my first concern is a met, especially with the size, location and not being well-defined.
A lot of what I've read show people with benign nodules. But not at the size of mine. I guess I'm just looking for support in general. And I'm hoping to hear about someone with a larger nodule like mine that turned out to be benign.
I feel like it's really bad news to get a lung met this fast (it apparently wasn't on my CT a year ago) when I'm on verzenio and lupron and anastrazole. But I'm trying not to go there. The report recommended short term follow-up, PET scan or biopsy. I'm going to push for biopsy if possible and just focus on not worrying until I need to. Thanks for "listening"!
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Hi @cmre00, I'm sorry that you have a lung nodule which is a concerning size. It could be a granuloma which is a benign clump of cells caused by inflammation of some sort (possibly from Verzenio.) Mets usually appear in groups but a singleton is possible. The other possibility would be a new lung cancer primary.
Lung biopsies can be very difficult which is why they are suggesting short term follow-up (usually 3 months) to look for growth first. I don't know how useful a PET scan would be since any kind of inflammation would light up with FDG contrast. Even FES which looks for E+ lights up my pulmonary fibrosis which is not cancer but has estrogen receptors. Also, it wouldn't identify lung cancer.
If you need a biopsy it might be worth getting a pulmonologist involved. Occasionally an IR can do a needle biopsy but more often bronchoscopy is needed to reach the tumor. Sometimes the nodule is impossible to get to that way and VATS (open surgical biopsy requiring hospitalization) is required. A specialist pulmonary radiologist or lung cancer pulmonologist might have useful input about whether it appears the nodule should be biopsied immediately or followed short term. In the grand scheme of things three months doesn't make a huge difference.
Most of the time a lone nodule under 3 cm is benign but any nodule over 1 cm should be closely monitored. Keep us posted. You are wise not to worry unless you have to.
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cmre- my MO set me up with a Thorasic surgeon when multiple nodules were found. Long story short, monitor via lung ct.
One was at apex of left lung; he described going in from my back, between ribs, etc… and even said a biopsy in that area is hard to get.
We’ve been monitoring them for at least 2 years; 3 months, then 6 months. No growth progress, still monitoring, now yearly. Best of luck to you.0 -
@maggie15 Thank you so much for the great info! I always appreciate your knowledge! It's good to hear about other things it could possibly be. My MO is referring me to a pulmonary nodule clinic for follow-up and next steps. Hopefully I can get into them soon. The thought of waiting 3 months for follow up feels daunting but you are right, a few months isn't going to matter much. I'm still hoping for a quick easy biopsy though. Lol. I have never had a PET/CT so I'm wondering if it might be worth getting one anyway just for the information and chance that my insurance may approve it now. I guess we'll see what the clinic says.
@cindyny Thank you for responding! May I ask how big your nodules are? That's great that they haven't grown in 2 years! Do they feel it's not cancerous since they aren't growing? Will they eventually quit monitoring or just continue yearly for the foreseeable future?
Thanks you guys. It's so good to have people to talk to who understand what it's like to go through all of this and are willing to share their knowledge and experiences.
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cmre - my largest is 6 mm, others are smaller. CT scan lists them as stable.
Long story short, I thought they were from scatter radiation. At my last appointment he pulls up the CT (as he always does) and goes over each one, showing them on his computer.
I said there are more in my right lung than my left; rads were left side so I thought more in right lung ruled out my theory.
He explained it could be from inflammation, infection, scar tissue, and being I have GERD it could be scars from acid reflux.
I told him the night before I slept sitting up after eating lasagna, to avoid burning me from eating the red sauce. It was killing me.
He said I could easily have aspirated stomach acid; and they could be from scars; he put me on famotidine 40 mg at night; it’s added to my omeprazole 20 mg in the morning.
So anything is possible. By the sounds of it he doesn’t think cancerous at this point. I’m not sure how many years he’ll monitor me.I also have nodules in my thyroid. The largest has been biopsied, benign. DX Hashimoto’s thyroiditis. I’ll get ultrasounds yearly to monitor them as well.
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@cmre00, It’s good you have an appointment at a pulmonary nodule clinic. I had awful SEs from radiation. My pulmo told me that I never should have had rads because of my medical history (severe upper GI bleed, Barrett’s esophagus, silent GERD) which were warnings of subclinical ILD from gastric acid/pepcid inhalation. It’s something that lung cancer doctors know but has never been shown in a clinical trial. Having an expert treat your nodule should give you confidence.
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My MO scheduled me for a PET CT in a couple weeks. And I'm seeing a pulmonologist on Monday. Unfortunately my MO didn't refer me to the nodule clinic like I thought she was. She referred me to a pulmonologist though. So I'm going to give this pulmonologist a try and see what he thinks.
@cindyny My rads was also on the left side and my nodule is on the right. I figured that ruled out it being rads related too. I have been sick off and on this winter. I guess it could be related to that too. I'm hoping that's what it is. Do you know the shape of yours?
@maggie15 I'm so sorry to hear you got rads when you shouldn't have. That's incredibly frustrating and disheartening. It's so hard to feel like we are trusting our team and doing everything we can to fight, then it turns out to be wrong.
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cmre - I went back to look at the report but I didn’t see where it said anything about the shape.
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@cindyny It's so interesting how different the reports can be as far as what they comment on. I hope that since they didn't notate the shape of yours then they don't have concerns about it!
I was looking at my prior CTs. I had one last Dec that was done at my medical group, but at a different location. I can't see the nodule. But, I had some CTs done at Mayo a year ago for rads. They are not diagnostic quality but I think I see the nodule. I can't read CTs but the spot that they said the nodule is visible on, there's a blob in that same spot on the two CTs I had at Mayo.
I'm going to point this out to the pulmonologist I see on Monday and see what he thinks. I'm trying to get the imaging from Mayo sent to my pulmonologist. If it is the same spot I'm taking a lot of comfort in that because it looks stable. I could be wrong but I'm going to think good thoughts about it.
On the plus side I had an MRI for an abdominal lymph node they were watching because it was a little enlarged. They believed it to be reactive, not malignant. Well, my results yesterday said it's back to normal size and no longer needs to be monitored. Yay!
But, because we get stuck in scanning loops, I now have a cyst in my pancreatic head that they want to check again in a year. Lol. Two steps forward, one step back.
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cmre, good luck with your pulmonary appointment tomorrow. Keep us posted.
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Finally getting around to giving an update on my pulmonologist appointment. I really liked him. He said we will know more after the PET/CT. If it lights up a lot then he wants to biopsy it. He gives it a 70-80% chance that he can reach it for biopsy. If it doesn't light up much he thinks we should just keep an eye on it, scan it again in a few months to see if it grows.
But he said that spot on my Mayo CT from last year is the spot and generally looking at it, it looks stable which is a very good sign. He said there are a lot of things it could be that isn't cancer. He thinks it looks more inflammatory than cancerous but obviously we cannot know that for sure until we biopsy it. He also said it could be fungal due to my time in the Southwest.
He thinks my cough is unrelated. Yay! If it is an inflammatory response from verzenio he doesn't think it's big enough to cause me to need to come off my meds at this time. Since it's likely that I had the nodule prior to starting verzenio though, it's probably not that.
He has me on the schedule for the multi disciplinary team to discuss my case and look at the images together with the thoracic radiologists.
My PET/CT is next week. I'm feeling pretty good going into it. Very hopeful. I'll update again after that.
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I’m glad you were referred to a good pulmonologist. His plan sounds solid and while he thinks the nodule is probably inflammatory he is taking the appropriate steps to make sure. I hope your PET scan goes well.
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Here for an update. I saw my oncologist today. We went over my PET CT results. Everything was good overall. There was slight uptake on the nodule SUV 1.5. The pulmonologist was able to look at my images from Mayo. They all agree the nodule is there a year ago and it's stable. They feel like we could just watch the nodule but they are willing to do a biopsy if that is what I want, and I do! They don't think it's cancer due to the low uptake and the fact that it's been there a while. So that gives me a big relief.
The rest of my PET CT was good. There was no uptake in my abdomen so they will check on the pancreatic cyst in a year. No uptake in my bones. There was a mild uptake in my cervical lymph nodes but it's likely reactive. I have a stuffy nose and scratchy throat right now so I'm not surprised.
Now I'm waiting for the pulmonologist to get back to me to schedule the biopsy. I'm feeling really good about everything. Except my amazing oncologist is moving so I am going to find a new one. I'm heartbroken. I trust her completely. I hate to have to find someone new.
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I’m glad you’re relieved! The biopsy sounds like it will be scheduled soon too. Keep us posted.
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It’s good that your PET results found nothing concerning and the pulmonologist will do the biopsy so you can be sure of the nodule status.
My MO whom I really liked moved after three years. I, too, was heartbroken but ended out with a new oncologist I am very happy with. Hopefully that will also be your experience.
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My CT scan from Oct. 2025 showed a thyroid goiter. Apparently, it appeared on a previous scan but no one thought to record it.
I've had 2 TSH tests since then and was told to follow up with my primary. It's been frustrating as no one can tell me if it's caused by hyper or hypothyroidism.
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chocomousse, I’m not sure but if you know the TSH score, you could look it up online.
My aunt had a goiter, 50+ years ago, it was removed and she took a daily thyroid medication for years. Good luck at your PCP follow-up.0 -
@chocomousse, Thyroid goiters can be caused by many things but often the cause can’t be determined. Many people with goiters have normal TSH levels.. If your TSH is high (hypothyroidism) you should be checked for Hashimoto’s, if low (hyperthyroidism)for Grave’s disease. Generally with a goiter you should have an annual thyroid ultrasound to check for suspicious nodules and a yearly TSH done. A PCP can monitor a goiter if they know what they are doing.
I developed a goiter during my first pregnancy and it slowly grew for many years. After a thyroid ultrasound my PCP ignored a radiologist’s advice to order a CT because of its size and I needed an emergency thyroidectomy when my airway became obstructed. After bc treatment my goiter grew back quickly from embryonic cells due to radiation scatter once again deviating my trachea. Last year I had radiofrequency ablation to shrink the offending nodule. After my thyroidectomy an endocrinologist took over my thyroid management,
Hopefully your goiter won’t grow much and cause any problems.
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