Kidney transplant recipient: Worried about monitoring of lung nodules

It’s very common for nodules to appear in the lungs, they don’t always indicate that they’re cancer, they can arise from other factors such as infections or perhaps if you’re a smoker or ex smoker. When you have had lung cancer then the anxiety goes up but having said that, they are normally monitored with routine ct scan. I noticed that you had a kidney transplant, was this due to cancer or something else? It’s always a nerve wracking feeling when they find anything because we always fear the worst outcome, myself included, there’s many discussions here about scanxiety so you’re definitely not alone, it’s also something of a comfort when the nodules are small because they are keeping a close watch and early detection is a very powerful thing.

My Kidney Transplant was due to block artery going to left kidney. It had gone none detected for ten years and finally a dr did a doppler scan and found the blockage. I went straight to Mayo and they put a stent in but like they said prior the blood flow had been blocked so long that the procedure might not work. It did not work so I went onto a transplant list and in only six months I received kidney. The kidney I received was a match that just doesn’t happen often. It had been 42 years since the last match of this kind at Mayo. I was number three to receive such a match. Mayo dr’s filled my room high five g each other saying see I knew it would happen again and there she is!
It’s like as if the Deceased Donor and I were twins.

Sorry you needed a transplant but glad your guardian angel was watching out for you!

Yes, lung nodules can be scary, but the nodules growing slowly sounds like me. My guess is you may have DIPNECH and typical carcinoids. Do you have any respiratory symptoms like chronic coughing, clear mucus or shortness of breath upon exertion?

I had 50 lung nodules found in 2008 and heard many wrong guesses for 12 years as they doubled in size during that time. Very slow growing. The largest one could now be biopsied in 2020. I never believed doctors that suggested the nodules were from a past illness because if it’s past they shouldn’t be growing.

Mayo has a neuroendocrine tumor team and is very familiar with DIPNECH and carcinoids but most doctors and even hospitals haven’t heard of DIPNECH and know little about treat that or carcinoids. Ask them to consider those as possibilities. If that’s what you have, it’s treatable, manageable and you’ll be around for the long long time. ❤️

Thank you so much for the information. I will bring it up at next appointment.
Have a great day!

@kfn57, I moved your question to the Lung Health support group and the Transplants support group. I notice that you first posed your situation in the Cancer support group.

I can understand your concern about monitoring lung nodules, especially since you are a transplant recipient. You want to protect your kidney and not invite further health complications. It's easy in our fear of the unknown to leap to the worst case scenario, like cancer. Most lung nodules are not cancerous. See this article from Mayo Clinic:
- Lung nodules: Can they be cancerous? https://www.mayoclinic.org/diseases-conditions/lung-cancer/expert-answers/lung-nodules/faq-20058445

I encourage you to ask questions and remain diligent in your health with your doctor. Are you being monitored at Mayo Clinic or with your local physician?

@colleenyoung
I am bing seen at KU cancer center in kansas city. Mayo is onboard watching the CT scans and in Nov when I go for kidney check up appointments they are going over the scans with me.

@kfn57, it sounds like you are in good hands. Your team is doing the right thing to monitor. It can be so hard to wait. What helps keep your mind off the worry?

I worry all the time, wish I knew how to control that.

@kfn57 , When you find out the answer for this please let us know, all kidding aside, I think you’re very blessed after reading about your kidney transplant, I do believe that your guardian angel is on top of your health care, what a wonderful story.

Thank you and I will keep you all updated. Today I to go to skin cancer dr due to a suspicious raised spot. I have had several MOHS surgery to remove the skin cancer’s cause my anti rejections meds cause akin cancer so I knew it needed check . Soooo today i had biopsy on the spot as I suspected would happen. Next week we will have results.
Have a blessed day,

Karen