Living with lung cancer - Introduce yourself & come say hi

Hi, I am Bob, a 76-year-old that is new here and a bit scared. Had my yearly CT scan back in early January. Found something they did not like. Scheduled a PAT scan which showed a hot spot. Had a Bronchoscope completed last week for a biopsy which showed positive for NSCLC. It has not spread and they said it was stage-1 and it was caught early. My Oncologist thinks surgery will take care of it and does not think I will need Chemo or Radiation. Had all kinds of tests including EKG, Blood Work, Lung Function testing, and have a few more scheduled. I am scared of hospitals and tests, but I have to get over that. My doctor is sending me to another hospital out of state for the surgery. I have my first meeting with that Surgeon on 2/25. This hospital specializes in lung cancer treatment which makes me comfortable, but I am less comfortable going out of state to a hospital I have never been to. This surgeon is trained to do robotic surgery which I have heard is better than VATS but really don't understand much about either of them. Anyway, that's my story and if anyone has similar experiences, I would love to know what to expect.

Welcome Diane, @dianelivingston47 , I’m sure your head is spinning and this point. It’s a tough diagnosis to wrap your head, and heart, around. Try to take one day at a time. Do you have someone that can go to appointments with you?, especially the oncology appointment?

@dianelivingston47 I’m newly diagnosed too. I found the PET Scan to be helpful and I got more info from that than any doctor. Finally when I saw my primary doctor I asked her to confirm or deny my own interpretation of the results. It can be confusing so just saying don’t be afraid to make followup appts and ask for honest interpretations of those results. But also, I’m learning those results don’t have to define your life as next step is treatments. So its step-by-step in the process.

@dunsmorej54 Hi. I’m newly dx’d with lung cancer and waiting to see oncologist. However, as a former medical social worker, I have thoughts. Consider getting 2nd opinion and/or different oncologist. The oncologist should be supportive, not derisive. It’s your boyfriend’s body and he has a right and duty to himself to do what he feels is right. The oncologist should be clear on expectations or rules if there are some. Like not going to Urgent Care? It’s ok to advocate for yourself and boyfriend. If it doesn’t feel right, it probably isn’t.

@dianelivingston47

Hello!
My name is Diane.
Just got a lung cancer diagnosis.
Still going through testing. Had bronchoscpy and will have PET and brain scan this week. Then on Friday willsee Dr for plan of attack.
It's all so overwhelming at this point.

Welcome Ann, @teal3127, I always feel that a consult with a specialist can't hurt. More info and more eyes on your case can only help! Have you found the NET group on Mayo Connect?
It will likely be helpful to you too: https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/

@dunsmorej54 , I just want to give you a hug. It's hard enough to manage this disease, without this type of additional pressure and confusion from his care team. Keep in mind, I'm a patient too, with no clinical training or credentials. 🙂
- Do you know if he had any biomarker testing completed when he was diagnosed? Looking for EGFR, ALK, KRAS, etc? I was diagnosed at the age of 49 and learned that many people that are diagnosed at a young-ish age may have mutations that are driving the cancer. This can impact treatment. I'm 55 now.
- Is he able to request a different doctor at the same cancer center? Having a doctor on your side that believes in you, and that you believe in, is not just important, it's your right. My guess is that you aren't the only ones that have had an issue with this doc.
- Is your BF open to a second opinion from a different cancer center altogether? When I've had potential progression, I've had other oncology teams look at my case, and I've never regretted it or felt like it was a waste. Information can be lifesaving and it's helpful to have another perspective. Here's a link that can help find a site designated as a national cancer institute: https://www.cancer.gov/research/infrastructure/cancer-centers/find

Hi, I am Ann. I have just been diagnosed with neuroendocrine carcinoma of the lung and completed MRI and PET scan this week. I think the thoracic surgeon is recommending a lobectomy of the right upper lobe and adjacent lymph node. I am asymptomatic. No one has suggested a NET specialist - should I ask for a consult with one at this early stage?

Hello! I'm Jess..my boyfriend was diagnosed with stage 4 lung cancer almost one year ago. He slipped and fell on a patch of ice in February of last year and in March after an X-ray for fractured ribs we were called in to be told he had a big mass in his right lung and that he had stage 4 lung cancer. He is 51 yrs old...his lungs are also completely full of inumerable amounts of nodules they said literally hundreds of them...the cancer has spread to the other lung and in his lymphnodes in the middle as well. So chemo and immunotherapy started quickly after we found out and it was going well through the summer into the fall the cancer had not grown or spread. He only has one kidneyand this winter the chemo was attacking his kidney and it had to stopped...so just continuing with immunotherapy I believe keytruda? He's sicker seems like he has pneumonia type symptoms all the time sweating nauseous uncontrollable cough and extreme amounts of phlegm. The oncologist is agitated because sometimes he doesn't want to do treatment and because when he gets really sick and other people in the house have bad colds or flu type symptoms palliative care says go to the ER...then he gets reprimanded for doing so...isn't it his decision about the treatments and what he wants to do? We see the lung Dr Thursday and he's already been seeing palliative care the entire time so he wants to stop treatments and just control symptoms for awhile and see how it goes. His oncologist threatened to kick him out of being seen there because we had gone to urgent care, the ER and took advice from palliative care......that just seems so weird to me....anyone have thoughts on this....sorry so long I'm just kinda going through this just him and I and it's a lot! Thanks for reading❤️