Living with lung cancer - Introduce yourself & come say hi

Welcome Denise @dmpstinson, You can start the process of requesting an appointment at Mayo Clinic here: http://mayocl.in/1mtmR63

Mayo Clinic Connect does have a NET group, where others with DIPNECH can be found: https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/
I wish you well with your recovery from surgery.

Hi Colleen, you might remember me from a few years ago in the Ostomy group. This time I'm joining the Lung Cancer group as my husband has had a CT scan which showed a large ( a bit smaller than a baseball) mass in his lung and also in his liver. This was done over 2 wks ago and have been waiting to get on the schedule for biopsy of the liver. Yesterday we were contacted by an oncologist who, fortunately will see him on Christmas Eve at a Hospital clinic only 12 miles from us. The MRI and PET scans will also be done there in the first week of January. The liver biopsy can't be done until 1/5/26 and 50-60 miles away. We are in our mid-eighties and freeway travel has become daunting for us. He also has macular degeneration so is unable to drive. The MRI is being done on his brain...the oncology scheduler told me they do these on all their cancer patients since the route of lung metastasis can take that route as well as to the liver. I had scheduled him to see our PCP because he was falling asleep on the sofa several times a day, sometimes sitting up. He had also complained about having to stop and rest several times walking through the woods during deer hunting. He has always been active and very strong. He has had a cough ever since I've known him in the 70's but in the last few months seemed to me to be much worse. He refused to see the doctor about it. I am scared beyond words that this is small-cell and has spread to the point of being untreatable. I am scared beyond words. This site has been a daily visit for me since my health issues in 2021/22. Has anyone on this site had positive outcomes with late stage treatment?

My name is Denise Stinson and and had surgery in September with MD Anderson to remove neural endocrine tumors for my lungs. The pathology report diagnosed me DIPNECH. I am looking for a specialist in this area. MD Anderson does not have anyone that specializes in DIPNECH . I was hoping to find a doctor at Mayo to help me with my diagnosis.

Hi Lisa - as long as the TAG works they plan to keep me on it. Side effects are minimal, and I don’t feel like I have cancer. Still working and trying to live life to the fullest!!

Hi Tina @tinae, I saw some of your other posts and wanted to welcome you to the group. I'm glad you found us. My oncologist likes to say that I'm boring. I'll take boring or behaving any day!
We are fortunate to have access to these targeted therapies. I'm on a different medication for ALK positive lung cancer. I believe it's the reason that I'm still here today (almost 5 years after diagnosis). I have some side effects, certainly more forgetful, but I'm doing well.
Is the plan to keep you on Tagrisso indefinitely? Are you still working?

Hi, my name is Tina. I am 58 years old and I was diagnosed last March on a random test and diagnosed with stage 3C non-small cell lung cancer.

Was not prepared for that!

After a biopsy of a lymph node in my chest, they determined that I had a mutation which allows me to take Tagrisso. I’ve been on that since last April things are behaving as my oncologist likes to call them.

Most days I forget that I have lung cancer and then every now and again your reminded of it.

I'm waiting to speak to my oncologist. It hasn't spread yet and I will be starting immunotherapy in a couple of weeks. I'm just not able to find enough data to support a decision yet

@tvichkon, I believe that @tymish17 and @vlpr have mentioned prophylactic brain radiation or prophylactic cranial irradiation (PCI).

I can imagine whether to have prophylactic brain radiation or not is a hard decision to make. Small cell lung cancer (SCLC) has a high risk for brain metastases, but what if you don't have metastasis? Age and other health factors also go into the decision making.

@tvichkon, what did you decide and what helped you make the decision?

Welcome @tvichkon, I'm glad you found us. Do you have a doctor that has suggested prophylactic brain radiation? I'm assuming that we're talking about whole brain radiation, or is there a specific area in the brain that is concerning?
Are you having radiation to the lungs, along with your chemo?

Going through chemoradition for ls 3 sclc. Has anyone had prophylactic brain radiation with success?