What to do? Lung nodules with End Stage Cirrhosis

Jeanne, when it rains for you it pours, doesn’t it. I’m sorry to learn about this new development. I hope that you learn something more definite with the PET scan. Will the results be sent to your Mayo Liver team before your next visit?

Yes..it does! And yes they will be getting the results.
The PET is scheduled on the 17th...never soon enough! May have a phone consult depending on the outcome. Also sending results to Tampa General which shares my records with Mayo but is 45 min away as opposed to 5 hrs.
I had a pulmonologist but he has retired and I do not have any lung connections yet.
Good news is that I feel pretty good and I have had no CoVid.
How are you doing?
Still trying to figure out this Connect website..lol

@jeanne5009
I am doing well. I had labs yesterday, and have proof that my liver and kidney are happy! I have also avoided the Covid and am fully vaccinated per my transplant team directions. I have found a comfortable level of normal by being selective, and am back to enjoying some of my favorite regular activities.

I want to help you to figure out the website changes. This can be as 'simple' as updating your preferences like the groups that you follow and notification options. It does take a little while to get used to it. You can find more information in this link to "Get Started on Mayo Connect" and be sure to scroll down the page to the section of "More useful tips" . Let you get stuck!
https://connect.mayoclinic.org/get-started-on-connect/
I'll be thinking of you as you under go PET scan.

@jeanne5009, I'm bringing @merpreb into this discussion. While she doesn't have experience with transplant, she does have experience with lung nodules and lung issues. She will likely have questions for you or can help you to know what questions you might wish to ask your health care team.

In the meantime, you might be interested in this related discussion in the Lung Health group:
- Video chat for first visit about lung nodule https://connect.mayoclinic.org/discussion/video-chat-for-first-visit-about-lung-nodule/
- Small lung nodules: How often should they be monitored? https://connect.mayoclinic.org/discussion/lungs/

How did the PET scan go?

@jeanne5009- Thank you Colleen and good morning Jeanne. I briefly looked at your history and it looks like you have been very challenged in the healthcare department. How are you holding up?

The first question I would like to ask is if the results of the PET scan have been given to you? What was the reason for them? That's a darn good question, "what do I do?" You wait for the results and give your doctors time to talk this all over and to see what treatment is best for you. A 1 cm ( a little over an inch) jump in size is a sizable jump. The doctors will probably also see if there is immunotherapy suitable. Maybe they will discuss a biopsy.

Are there any questions that you would like to ask me? Are you under any treatment for the lung lesion prior to the PET scan?

Have had cirrhosis for 6 years Meld 8. Lung nodule discovered 1 year ago. The last scan showed it tripled in size. Had PET it is now 1.8 cm with no lymph node involvement showing anywhere. They are suggesting 8 to 10 wk scan and biopsy. I am not comfortable waiting that long so I set appt. with Dr in Tampa that my hep there referred. Anyone have this scenerio?

@jeanne5009, thanks for the added information and results of the recent PET scan. I know it can be confusing sometimes to navigate the website. I hope you don't that I moved your message to the previous post you made to keep your story in one place here: https://connect.mayoclinic.org/discussion/lung-nodules-and-transplant-ststus/

Did you see @merpreb's response to you? Click the link to see her response.

That's good news that there is no lymph node involvement. I'm glad you have possible options to be seen sooner for a biopsy.

Not sure about immunotherapy...don't know much about that yet. And...not even sure if they can do a biopsy because of the location. It's near the heart.
The Director of Pulmonology should have the disc tomorrow so I may hear more this week. Plus the docs at Mayo will be able to read it too. Meanwhile, I wait. God gave me a lot of patience but lung nodules growing this fast make me nervous.

Good morning Jeanne- What relief you must feel that there isn't any node involvement. An 8-10 wk follow-up is very quick for a CT scan but then your lesion grew quite fast too. Do you have a description of the lesion? If any part of it is solid, I agree that I would also seek another opinion to see if I could get action sooner. If the CT showed pure ground glass that could be another story for the wait.

Merry

Jeanne- Of course you are nervous! Biopsies can be tricky and not always recommended. Did you get a report of the PET scan also? I hope that you hear back sooner than you anticipate. Have you had lung nodules prior to this one?

If you don't mind, I would like to stay with you in this conversation.