Living with lung cancer - Introduce yourself & come say hi

@carrington- Welcome to Mayo Connect. Pulmonary Carcinoid cancer is a different kind of lung cancer and more unusual than carcinomas and multifocal adenos. The levels of markers in your blood that you mention have risen and I am very glad that your have a CT scan rescheduled for an earlier time.
It's very very difficult not to worry when we have an unexpected test result. No one can tell you not to be concerned or worried. But what I see is your doctors responding very timely for you so that they can respond as quickly as needed. when is your new CT scan scheduled for?
https://www.cancer.org/cancer/lung-carcinoid-tumor/about/what-is-lung-carcinoid-tumor.html. They tend to show up in more than one place in your body too.

Thank you for the feed back and the link. I am waiting for them to call me for the date of the CT Scan. I am assuming it will probably be after Christmas.

@carrington- Hopefully they will call soon.

Merry, going to my Senator's office today, will sign release, and share story. Yesterday, Oncologist at VA said we could just radiate it. Asked for second opinion outside of our area. Said he can't refer me to Mayo, because they seem to think a second opinion locally, but would see about a referral to Minneapolis VA, which I know is not a cancer treatment VA. Trying not to be crazy, thanks!!!

@meka good for you! Taking positive steps! you can have someone else make the referral? What about telling your senator this?

@meka, this is the perfect place to vent and yes, your message remains posted. This is exactly what Connect is for. Cancer sucks and sometimes we just have to say it. It is also a place to get and give support, find hope and take small steps to cope better. I love the advice you got from @sakota and @merpreb. I can see that you have held on to their virtual hands and gathered strength from them. One day at a time.

@carrington, I add my welcome to you as well. I'm so glad you found the courage to post. As @merpreb points out, carcinoid cancers are a different beast. We actually have a group dedicated to carcinoid cancers and neuroendocrine tumors here:
- Neuroendocrine Tumors (NETs) https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/

In addition to following the Lung Cancer group, I encourage to also follow the NETs group. You may wish to take part in this discussion:
- Typical Carcinoid Tumor in Lungs https://connect.mayoclinic.org/discussion/typical-carcinoid-tumor-in-lungs/

I can imagine that having the CT scan appointment moved sooner starts the wheels of anxiety spinning. But I would see it as Merry suggests. The sooner you get results, the sooner you know what you're dealing with and you and your cancer team can take action. Please keep us posted and feel free to share your worries here. How does the saying go? A worry shared is a worry halved.

Hi, I kind of stumbled onto this site. I had a recent CT scan that showed a nodule in my lung and 3 spots on my liver. I am 69 and a smoker. I have a PET scan this Friday. Supposed to get a lung biopsy but not scheduled yet. I am terrified. My Pulmonologist is not the most compassionate person and said this is aggressive and gave me a couple of pamphlets.

I am so upset and angry!! I have had other issues going on for some time they never coukd figure out. I started having a chronic cough, maybe in Sept. I mentioned it to my PCP and Pulmonologist who said to quit smoking. The cough continued and I about insisted on a chest X-Ray, which showed some interstitial disease and narrowing. The cough continued. I saw the ads on TV about LDCT and contacted the doctors again and was told Sutter Gould does not offer it and does not follow those guidelines. Cough continued
and I wanted this test done. Nothing available within 50-100 miles from me. Contacted my Pulmonologist again. He finally said he would order a CT, if it woukd make me feel better, but it would probably not show anything. Into December, had the CT, and got a message to call the office ASAP. I saw him yesterday and got the results. Now, it has spread! I am angry, scared, depressed and have no idea where to turn. Closest, large treatment centers near me are Stanford and UCSF, neither of which are the top places to go. There is Mayo in AZ and MD Anderson in Texas. It would be difficult to travel and I have no support except my husband who is no support. I just do not know what to do. Sorry this is so long. Anyone have any successful treatment for this? Not staged yet but not looking good.

You are so brave to speak up and share your story. I understand your anger, frustration and fears...I had a similar story 11 years ago!
The unfair stigma is horrible even for those of us Who Never Smoked! We all know smoking is very bad, right? But how many people know nicotine is the most addictive substance on the planet? I learned that in Nicotine rehab, even though I never smoked...just
days after surgery to remove a 3cm tumor, all of my upper left lung lobe and a wedge in my lower left lung lobe. 11 years ago there
was only 15% chance of living after lung cancer diagnosis. Two years before my diagnosis, I had a chocking cough and local doctors would not listen to me or give me chest X-ray! I thought I had SARS or TB due to my career and international traveling.

There is hope...because research has come such a long way and people are living after proper diagnosis and proper treatment.

Honestly, traveling to a facility like MD Anderson or Mayo Clinic is worthwhile, a second opinion maybe saving your life and your quality of life and mental sanity. It sounds like you have spunk! What are you waiting for?

I traveled to Mayo Clinic in Rochester MN. A team of doctors and staff listened with care and compassion and my thorasic team follows me to this day, with great care and respect. The cost in comparison to private practice where we live is triple the price and to this day the care where we live is very poor for lung cancer. I have seen friends who refuse to "get out of Dodge" and die a horrible death. The people I have convinced to go to a medical research hospital like Mayo Clinic are living and thriving, like me!

So pack up the husband and drive...you may be able to find discounted hotel on HOTWIRE.com. Purchase a parking pass all to save money. If you decide to fly Delta has a Mayo Clinic special flight fare and you can change the dates. Also, there are often facilities who will provide free housing as well.
Let's stay connected. I know you can do this...but find a medical team who live for lungs and are compassionate. My favorite question to surgeons is: "So, how many of these procedures have you done?" At Mayo Clinic my favorite answer was "We have done 2,500 VATS procedures and 5,000 lung transplants!": The best news is with the brilliant medical minds and loving support, I am alive and thriving today. Lung Cancer Became My Blessing! Take that anger to the best facility you can find.If they won't give you an appointment, drive to their medical hospital and ask for a lung health specialist. While in the waiting rooms think about reading the book: Stress Free Living by Dr Amit Sood and then pass the book onto your loved ones and friends. Look at this as an amazing lesson. Be kind.

Sincerely,

Take care and Cyber Hugs,

Talked to a retired Sgt MJ at Senators office, know he has been a great help to other veterans. Very patient, took copies of things and issues I had. Stated that other vets have been referred mainly due to lack of decent diagnosis, etc around here. Did not hear today, but my counselor helped with new action plan if needed. Also reminded me that I have survived way too much already to stop now. Will stay in touch.