Living with lung cancer - Introduce yourself & come say hi

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!!

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 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?

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.

@blinken, This is hard news to handle, but it's good that you saw a change in your husband and were able to get him into a doctor. It sounds like his medical team is jumping right into action. The appointment with the oncologist will help you to understand what may be next. A biopsy is helpful to identify the type of cancer, which can be matched to specific treatments. The MRI and PET scans will show where the cancer has spread.
Lung cancer treatments have improved in recent years. All treatments come with challenges, some more than others. Many of us with metastatic lung cancer are living longer 'normal' lives. There are many types of lung cancer, and even more treatments or combinations of treatments.
Try to take one day at a time and try not to get ahead things. Focus on what you know, not what might be. Do you have others that may be able to help with the longer drives? You may want to mention the help that you may need with the oncologist's office too. They may have support resources that they can offer.

@lls8000
Hello Lisa, thank you for your thoughtful words. I am sure you know how hard it is to wait for tests to be done and results to be read and interpreted. I was a lab tech/medical assistant for most of my adult life so at least I have background in procedure and how things work in the medical world. Things have changed in that regard from how it was in the beginning of my career and it has been many years since I retired. I am 83 and fortunately I can still drive but hesitate now to tackle the freeway. My husband has Macular Degeneration so he no longer drives. His daughter has a summer home not far from us and is there for Christmas so will take us for the biopsy, some 60 miles away. The rest of the tests are much closer and I can manage those. My daughter lives about 40 miles away and will arrange to help us with any other distant travel that we might need. The oncologist we will be seeing tomorrow, Christmas Eve, for the initial visit is close and I hope that any treatment he advises can be done at that site. Again thanks for your concern. I will update as things go on.

I am new to this group. I was just diagnosed with lung cancer a week ago. I have my first appointment with the oncologist in January. I still have to tell my family. I am scared to death. I am 75yrs old and had a lung transplant 18yrs ago. On oxygen since I had Covid in 2020. Just looking thru the comments I think this group will give me some calming thoughts.
Thanks

Welcome @gen25, I'm know that the diagnosis feels overwhelming. We have all faced this diagnosis and have found a way to navigate the clinical pieces and the emotions. You will too! Take time to process things, but it may be helpful to have someone to talk to in your close family or friend circle, and helpful to have someone that might be able to go to these initial oncology appointments with you. What was the reason for your lung transplant? And is the current cancer in your original lung?

@lls8000
Hi my original transplant was in my right lung due to COPD. The cancer is in my left lung. I have two sisters and told them over Christmas. They are being very supportive and will attend appointments with me. I was thinking that next i want to contact my priest at church for some spiritual comfort.
Thanks for the welcoming message

Hi my name is Chris I recently had right lower lobe surgery after scans shored tumour. I had lobectomy I'm 6 months post op recently had scan showing no spread... Histology was Adenocarcinoma Mucinous early stage... I'm still having pain issues like burning sensation stabbing etc all normal apparently... I'm on pre gablin 200mg 2 times day... They stopped the oxcycodene meds due to it been an opiod.... This did help with pain anyone else had this operation and how did you manage the pain