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CT and Lung Nodules
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Hi Marge,
It’s good to hear from you. Having the surgery that will give you peace of mind is a positive decision. I’m sorry that you are having healing issues, one more complication of radiation. As you know, I’m not a fan of rads. It would seem that the mastectomy would remove any atypical cells that were present. That’s something you should ask your MO about.
I had a bad bout of flu at the new year and the CT done when I recovered showed some RIPF progression. I have another scan the first week in May to make sure it has restabilized. My pulmo prescribed an inhaler with an additional ingredient which has improved my breathing and sent me to voice therapy because I can’t do a pulmonary function test without getting into horrible coughing fits. I tried to bargain with him: a calculus exam, a five mile walk, 3 hours in a closed MRI machine instead of the PFT but he just laughed. At least he has a good sense of humor.
I hope your incisions heal soon and you end up with a good cosmetic result.
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Hi @margecandoit ! I'm sorry to hear your healing has been rough. What does your surgeon think about your wounds not healing? I'm glad you are at peace with your decision. That definitely helps. But it's very frustrating when recovery isn't going as smooth as we would like. How has your abdominal healing going from the DIEP flap? I hear that can be tough too. I am scheduled for a delayed DIEP flap and lymph node transfer in August. May I ask your experience with your DIEP. You had a delayed DIEP too, correct?
My biopsy went well. I had no issues. I didn't get any definitive answers though. There was a blood vessel that ran through it, so the pathology showed normal lung tissue with a bloody background. The cultures didn't grow anything. They cannot say for certain that there is no cancer present so they want to watch it. If it changes then they will likely decide to remove it. I am supposed to get another chest CT in June. My pulmonologist thinks if it remains unchanged for the next 2 years then they can stop monitoring it. He said we could also do a percutaneous biopsy but he's concerned about that blood vessel so he thinks monitoring is better for the time being. On one hand I am disappointed that we have no clear answer. On the other hand, we didn't find cancer cells in the bite we got so that's a win. Your doctor only did one CT a year after your biopsy, correct?
My lovely MO did leave. She moved out of the country. I was able to find a new MO who I love. I've seen her once so far. I cried happy tears in my first appointment with her. I am so glad to have another MO who I trust! I was referred to a plastic surgeon for options for my lymphedema. I thought it would just be a lymphovenous bypass, but she said I'm a good candidate for a lymph node transfer. I will be having that done in conjunction with the DIEP flap, as she said it has better results when done with the DIEP.
I hope your wounds heal up very soon!
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CMRE- glad your biopsy went ok. I think there was problems with mine cause when I had my I bleed and cought up a lot of bleed. 1 and a half of the plastic throw up bags and the dr was super scared and put me in ICU for 4 hours and the nurses were talking how they never seen him act like that but it came back benign but I remember it said something in there that I thought was weird and my oncologist was like your good. I wonder if I would have got more info if I had a pulmonarist.
my deip was delayed by my choice. I went it lumpectomy and radation and breast reduction but never had piece about it but wasn’t ready to make the double mastectomy choice and my breast surgeon said she could do it later if I choose to but she can’t put them back on. So I went with that and after 2 years of verzenio I felt like I wasn’t protected anymore. So I found out about deip that I didn’t know about at first and I didn’t want implants so that gave me piece about it. My healing problem is due to radation in left breast and I believe that it hit the right breast closes to my left breast so that half isn’t healing well either. I also I feel my plastic surgeon waited to long for me to seek wound care and I had to suggest it and I only knew about it from my aunt needing it. My abdomen took a little bit longer then I normally heal but nothing like my breasts. It’s been 10 weeks and it’s finally all healed. I can show you picture of my breast if you want. They can be a little scary but I think it’s not the normal bit my flaps are doing well so that’s good. Wound care has me on a wound vac and hyperbaric chamber 3 times a week.Maggie- I am so sorry you are having issues. That always sucks when you have a set back. Hope for things to be stable.
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@margecandoit I had radiation too so that makes me nervous. I'll be sure to talk to my doctor about wound care early if I have the same issues. I would love to see your results if you don't mind sharing!
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crme sent message with picture. I am not healed yet but I can keep you updated.
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Hi everyone, hope all reading this are having a good week!
I had a chest CT this week, this is a 1-yr follow up after incidental 5mm module found June 2025 and unchanged as of Sept 2025. I'm not an expert at reading the reports but the 5mm module and all the other scattered nodules are unchanged. So, yay for that.
There are other comments on the report that I don't totally understand but with some googling I've concluded aren't anything to lose sleep over unless / until a provider tells me to. They are "Punctate calcified granulomas" and "Subtle subpleural reticulation along the anterior lung." I did have left side radiation in Sept-Oct 2025 so this is the first CT since that time.
Meeting with oncology in a couple weeks. I imagine she'll explain everything but if there are specific questions you feel I should be asking, I'd welcome the input. It's possible this will be my last CT to follow the 5mm module. Interestingly, I also get abdominal MRIs (every 2 years, in the off-years I get an esophageal ultrasound) for pancreatic cancer screening -- related to my BRCA1+ status -- on the last MRI they commented on the lung nodule too. So even if I get no more CTs maybe the nodule will still be coincidentally followed on those MRIs.
Thinking back to when the nodule was first identified... I was terrified! I'm so thankful this group was here when I needed it most. Thank you 🩷
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Hi @kks_11, Great news on the stable chest CT. A granuloma is a group of immune cells formed when your body is trying to ward off an infection or other immune system threat. They are almost always benign. Subpleural reticulation is a net like pattern in your lungs caused by scarring in the tissue between the air sacs. That can be caused by any type of pulmonary inflammation like an infection, radiation or something else. It can be progressive (as in the case of idiopathic pulmonary fibrosis which has a honeycomb scarring pattern) but otherwise it's just leftover damage. Subtle means it's not too serious.
The reticulation happens when your immune system is fighting pulmonary inflammation and continues the healing process after it should stop leading to scar tissue formation. The driver of this immune dysregulation is transforming growth factor beta 1 (TGFB1), a protein that controls cell growth and tissue repair. It performs a very necessary biological function but is damaging if it does not turn off when the healing is complete. My pulmo told me that I probably have an undiscovered genetic mutation when he looked at all my unexplained medical diagnoses: continuously growing large benign thyroid goiter, Barrett's esophagus, radiation induced pulmonary fibrosis, sudden regrowth of excised thyroid post rads, scarring in the radiation field and scatter area including my brachial plexus and larynx, and even breast cancer. I had numerous radial scars (benign) in my tumor margins. My pulmo hypothesized my immune system was fighting cancer cells but TGFB1 (a double edged sword) switched from destroying the cancer cells to supporting their growth. Well, earlier this year scientists at MD Anderson found such a mutation on chromosome 19. Phase 1 clinical trials are underway to see if people with this mutation getting radiation for head and neck / breast cancer develop skin fibrosis. The goal is to identify those who might be at risk for excessive radiation damage. It's too late for me but I feel better knowing that there is an explanation for what seemed random.
When my youngest brother told me during chest surgery doctors found a large thyroid goiter growing inward and compressing his trachea I figured that was another indication of a genetic mutation. I could be tested for it but the test is very expensive and not covered by insurance. Also, there is currently no treatment but someday maybe there will be. I'm also dealing with recurrent immune-mediated neuropathy where in rats TGFB1 is alternately helpful and harmful.
It's interesting how your pancreas US screening allows you to keep an eye on the lung nodule. My chest CT lets my endocrinologist monitor tracheal deviation from growing thyroid nodules. The scans I get seem like overload at times but I figure nothing will happen since I'm being monitored.
Hi to everyone who posts here. I hope y'all are doing well.
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@maggie15 I always learn so much from you! Fascinating stuff. Thank you for taking the time to explain all this to me.
When I was reading up on the immune-related items I kind of found myself thinking "that tracks." I can't articulate all the reasons why like you, but for example, I've had unexplained hives and things like keloids. I'm so glad to hear they're starting to learn more about such things. May I ask how your immune-mediated neuropathy was uncovered? I know there are various nerve testing and skin/muscle biopsy things they can pursue.
In any case, I am ending the week happy to be "status quo" with this aspect of my post-treatment care. I'm grateful for the monitoring… grateful you are monitored too. Best to all on this thread.
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@kks_11 , You have hit on something there. Keloids are caused by overproduction of collagen thanks to TGFB1 dysfunction. From what I have read TGFB1 is helpful or harmful depending on whether the correct signaling pathway is operational at the right time. Since it’s the master regulator of cell growth, tissue repair and immune function, figuring out how it works and how to control it will revolutionize medicine.
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@kks_11, Forgot to answer your question about the immune-mediated neuropathy. I had numerous neurological evaluations along with MRIs of the brachial plexus, entire spine and brain. My PT and a neurosurgeon thought it was possibly Parsonage Turner Syndrome but the EMG ruled that out when the results showed it was systemic. I then had blood/spinal fluid tests whose results matched no diagnosis except possible paraneoplastic syndrome. A new MRI of my hip tumor showed stability, there was thecal sac but no spinal cord compression and thoracic outlet syndrome was ruled out. They ended out basing the diagnosis on symptoms, disease progression and blood/CSF results. The numbness is a bit patchy rather than true glove/stocking so they didn't do a peripheral nerve biopsy. I lucked out since the hospital where I had cancer treatment has a nationally top ranked neurosurgery department and the parent institution of my local rural hospital has one of only eight peripheral neurosurgery fellowship programs in the country.
When I see my neurologist in a few weeks she'll decide whether to do another EMG. My MO regrets she and my PCP didn't thoroughly investigate my six months of extreme fatigue/insomnia which started two years ago, was eventually diagnosed as statin induced liver injury on a routine CMP blood test, and is the likely trigger for the neuropathy not due to radiation damage. She has referred me to another neuromuscular neurologist at the big city hospital so I'll see them in January for a second opinion even though I had several neurosurgical consults there. It's a bit frustrating since my neuro says they can't stop the inflammation if they don't know its root cause (my liver enzymes are back to normal.) I paid for a functional medicine test for platelet-poor plasma TGFB1 level and it was three times the upper limit on their scale. I'm leaning toward having that genetic mutation (which my ILD pulmonologist hypothesized I had five years ago) for which the treatment is supportive care. I can't complain about the rigor of the medical workup. Also, the doctors seem just as disappointed as I am that they can't fix things. C'est la vie.
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