Could be Leiomyosarcoma: I don't even know what questions to ask.

Did you have surgery for a mass removal? Then lung nodules appeared 2 years ago? Any other treatment? Have faith and please don’t be afraid to ask questions of your doctors. Keep a notebook and perhaps take someone with you to appts to help listen. It helps me to ask questions.

Hi @jmw8, I'd like to add my welcome to @rrlady's. I know that state of bewilderment where you know you should have questions, but you don't even know what you need to know. That's a great time to reach out. Allow me to bring in a few members who have mentioned leiomyosarcoma in the past like @kathythornjohnson @allsmiles @ventibug and @rred. While they don't have leiomyosarcoma, I think @naturegirl5 and @hopeful33250 might have some suggestions about questions to ask or what to expect.

JMW, let's take one step at a time. Leiomyosarcoma is a rare type of cancer that begins in smooth muscle tissue. Smooth muscle tissue is found in many areas of the body, such as the digestive system, urinary system, blood vessels and uterus. What has led your doctor to suspect that the lung nodules may be leiomyosarcoma?

Hello, @jmw8 I'd also like to add my welcome to Mayo Clinic Connect. Here is a link about leiomysarcoma from Mayo Clinic:
https://www.mayoclinic.org/diseases-conditions/leiomyosarcoma/cdc-20387733
As @colleenyoung mentioned I do not have leiomyosarcoma but I am a cancer survivor. I am currently in the midst of a recurrence that is being treated. We can help you come up with ideas of questions to ask and how to ask them.

I have a few questions for you to help us help you. I'm echoing @colleenyoung who asked what led your doctor to diagnose the lung nodules as leiomyosarcoma? Is your doctor a specialist in lung diseases?

Like you I get very scared and anxious when I ask the big questions. So, I write questions down ahead of time in a notebook and take my partner with me to my appointments. It's very important to have someone with you as we don't "hear" very well when we are scared. Take notes on what your doctor tells you and ask your accompanying person to also take notes.

Here are some questions that come to my mind to ask your doctor.

1. Please explain to me what leiomyosarcaroma is. How and why did this develop in my lungs?
2. Do I need tests to confirm this diagnosis? If yes, what are those tests and how will they be scheduled?

I would recommend not asking about survival rates or "how long do I have"? Everyone is different . With cancer research coming up with amazing new information all the time it's unlikely that your doctor can answer that question with any certainty right now. If you do have leiomyosarcoma and it cannot be cured it is possible that it can be managed and give you a good quality of life for some time.

The following has helped me: I'm a survivor. I'm not a victim. I'm a warrior and each step I take forward shines a light on the next step. Courage as a warrior means I do not avoid my fear. I take my fear with me and I use it.

Please come back to us with concerns or any other questions you have.

Blessings,

Helen

Hi @jmw8,
It's a long story but when my tumor was diagnosed as a leiomyosarcoma I didn't know what a sarcoma was let alone a leiomyosarcoma. That was in March 2008. My tumor occured in my retropirotoneum. So, I didn't know what a leiomyosarcoma was and I didn't know where my retropirotoneum was. My tumor was surgically removed in March 2008. My oncologist (Mayo) asked me what I knew about my cancer and I told him what's important is what he knows and I trusted him completely.
Follow-up CT scans, quarterly, then semi-annually , then annually and then no more were causes for anxiety and, for me, faith was the antidote.
Several months after surgery, I was pretty much back to normal--playing tennis, etc.
I am very grateful for no recurrence after 13 years.
I wish you good fortune whatever your diagnosis. And, if there is any way I can help please let me know.

Hello @jmw8

I can certainly understand your fear. While I've never had lung nodules, I have had three surgeries for a rare type of carcinoid cancer and I do understand that it is a process that is always scary and that you never get used to thinking about it. You said that 2 years ago you had a biopsy and it was inconclusive. Have you had a recent biopsy now that the nodules have begun to grow? If not, is that being planned by your doctor?

Being frightened is understandable, but being informed and asking good questions is vital to your well-being. You have been given some good ideas about taking notes and listing your questions. Also, @naturegirl5, Helen, gave you a good idea about taking someone with you to help you remember the answers to questions and instructions that the doctor will give you. When we are stressed it is very easy to forget details that might be important later on.

When do you have your next appointment to follow up?

@jmw8, how are you doing today?