Radiation fibrosis

There are always people with wheelchairs at Mayo entrances, and they will accompany you to your appointment. Otherwise, Visiting Mayo thread has mentioned three different organizations that provide assistance at a cost.

Hi @meka, If you are coming to Rochester, the Mayo Clinic concierge service can provide you with information that will help you navigate your visit. Here is the website with information on how to contact them: https://www.mayoclinic.org/patient-visitor-guide/minnesota/concierge-services
This is a link to the discussion that vic83 was so kind to reference: https://connect.mayoclinic.org/discussion/need-help-getting-to-hotel-post-surgery/

Radiology scans are somewhat subjective, in that different radiologists will see and note different findings in their reports. It can be interesting and alarming. Usually, if you are not experiencing new symptoms, there is little reason for concern without the input of a physician that is familiar with your case. Your physician will be able to compare your scans for changes over time, and the radiologists will often do that as well.
Has a doctor confirmed that they believe you are now experiencing these additional complications, or are you experiencing new symptoms?

Regarding "After my latest every 3 months follow up CT for multi focal adenocarcinoma, added radiation fibrosis and emphysema. Known COPD, never seen either on my CT results."
I too have multifocal adenocarcinoma, and I have had about 10 CT scans in the last 2 years. I notice a significant difference in style between one Radiologist report and another when discussing my multiple nodules.
I know my doctors like to look at the actual scan on their monitors and not the report. But I only have these reports and I am amazed there is not a consistent format for discussing such nodules.
Regarding other lung issues, my CT scans report other lung issues such as interstitial disease, and pulmonary fibrosis. I had recent radiation-induced pneumonitis. Have you had recent radiation treatment to your lungs?

Since the scans pick up and report other things not related to my lungs, I have my PCP review, or I see a specialist in that area if I have concerns.

Hello, I was wondering if you could share your experience with the radiation one pneumonitis. I had that back in March of 2023 and had to be admitted to the hospital couple times because of that. Every time it would flare up when I get to the lower dose of prednisone. Since my last diagnosis in Sept of 2023, my pulmonologist decided to do longer tapering with antibiotics. I’m at the point where I’m tapering down by 1mg every month and I’m on 4 now. He plans to keep me longer on the antibiotics even after I’m done with prednisone.

Hi zeerj, happy to share my experience. About 6-7 weeks after three sittings of SBRT I had really increased breathing issue. I called in and they first prescribed antibiotics for 10 days which did nothing. Then they put me on Prednizone 40mg tapering every 2 weeks (40mg, 30mg, 20mg, 10mg). That helped immediately and I quite 59 days later. They also prescribed Bactrim to take with the Prednisone. Since I ended the Prednisone I have had a slowly increasing shortness of breath. Besides the multifocal lung cancer, I also have pulmonary fibrosis /interstitial disease. That has been reported as stable on my many CT scans. My last pulmonary function test showed a severe drop in diffusing capacity(DLCO). Not clear if this is due to fibrosis caused by SBRT or by the other fibrosis present in my lungs. I will repeat the PFT and if it is still down, I will need to start anti-fibrotic medication.

I provided my experience and would have a question for you. Pneumonitis is a serious complication. I see from your profile that you have breast cancer. I have read that radiation to the chest will cause pneumonitis. Have they mentioned any limit in treatment options because of the radiation-induced pneumonitis?

When you ask ‘limit in treatment’ are you referring to how many times they put me on prednisone? It was mentioned by my oncologist at one time that I might be on it for a longer period. Keeping my fingers crossed that the way my pulmonologist is tapering me off by 1mg every month and adding clarithromycin is going to do it. Before I was tapering down every week by 2.5mg and when I get to 5, inflammation comes back. I had 15courses of radiation over 3weeks period. They think mine was a result of the chemo I was on at the time as it had 2% chance of to cause pneumonitis.

The prednisone is to stop the inflammation and scarring in the lungs. I was thinking about how certain treatments can cause pneumonitis in the lungs. Pneumonitis is a serious complication because it causes scarring in the lungs and lung tissue is lost. That means reduced lung capacity. People with lung cancer must consider how to conserve lung tissue when looking at treatments. I have been told that I cannot do certain treatments because of my pneumonitis episode.