New to adenocarcinoma lung cancer and have LOTS of questions

Posted by annallee @annallee, Jun 17 11:03am

I was recently diagnosed with adenocarcinoma lung cancer. Needless to say, I am extremely scared! Other than an obnoxious cough leading to the diagnosis, I do not know if I have had any other symptoms. I have, however, recently had new pains, or swelling in feet and ankles, that I am not sure if they are related or not and if I should be worried about them. I do not meet with the surgeon for two more days and curiosity is getting the better of me. Where can I find out more?

Interested in more discussions like this? Go to the Lung Cancer Support Group.

northoftheborder | @northoftheborder | Jun 17 11:26am

I had never been a hypochondriac, but I did a good imitation of one in the first 12–18 months after my stage-4 prostate cancer diagnosis. My doctor told me it's a natural reaction to the emotional shock, but she'd be worried if I was still acting that way in 5 years.

By all means, discuss *every* concern with your medical team — don't worry about overreacting — but in time you'll get used to your new normal, and know which aches and pains and swellings matter, and which ones don't.

Learning to live with cancer is a multi-year process, and there's no short-cut, so cut yourself slack. Even if you're worried they're rolling their eyes after you leave the clinic, keep on advocating for yourself.

My cancer centre here in Canada has a patient hotline I can call any time during working hours to talk over symptoms with a kind and patient oncology nurse. Does your medical team or HMO have something similar?

Good luck. It's going to be a bit of an emotional rollercoaster for a while, but it can settle down in a couple of years. ♥️

Lisa, Volunteer Mentor | @lls8000 | Jun 17 11:49am

Welcome to Mayo Connect @annallee. I'm glad that you found us and be sure to check out the discussions on the Lung Cancer group too. https://connect.mayoclinic.org/group/lung-cancer/
It's perfectly normal to be scared. Cancer is scary. There are many new treatments in the world of lung cancer. It's finally a hopeful place! I was diagnosed 4 years ago, stage IV.
We aren't doctors and can't give medical advice. Certainly, if the swelling continues, or you notice any increase in shortness of breath, you'll want to reach out to one of your health care providers, or even visit your local Emergency Room. Fluid can build up around your lungs, and the impact of that can be significant.
It sounds like you've already had a biopsy completed, so you are well into the diagnostic process. Have you started working on a list of questions for the surgeon? Was your cancer found from a CT screening?

dianemb | @dianemb | Jun 18 7:57am

I was diagnosed with same in September 2022. It’s been a long journey with different treatments but I feel well now and have most of my stamina back. I’ve been in this particular drug research trial since August 2023. I just want to tell you not to despair. I try to think of my cancer as a chronic illness. May your journey go well.

vic83 | @vic83 | Jun 19 8:26am

Talk with your doctor about swelling in feet and ankles.

Matthew K | @flusshund | Jun 19 10:24am

@annallee, the term 'adenocarcinoma' refers to cancer of glandular tissue that lines several different organs. You can have an adenocarcinoma in the breasts, lungs, stomach, prostate, and probably other organs as well. It is not a specific diagnosis.

Surgery is usually the first step, as your doctors want to get that out of your body as soon as possible. In addition, once they've removed it, they'll send it to a lab to find out exactly what type of cancer it is. The good news is that there have been amazing advances in lung cancer in the last 10 to 15 years. I was first diagnosed 6 years ago and am still working full-time with no cancer side effects.

Lisa, @lls8000 is right. You should start preparing a list of questions for your surgeon and your Oncologist. Now that the decision to do surgery has been made, things are going to move fast. Don't worry. The cancer moves a lot more slowly.

Feel free to brainstorm your questions with this group. There is a lot of experience here.

denzie | @denzie | Jun 19 11:18am

My stage 4 lung adenocarcinoma was diagnosed more than 13.5 years ago. There have been many improvements in treatment the last few years and people are living longer.

This link will help you find questions you need to ask. It covers getting a diagnosis to life after treatment.

https://amp.cancer.org/cancer/types/lung-cancer/detection-diagnosis-staging/talking-with-doctor.html

The Go2 Foundation, LiveLung Foundation, Lung Cancer Research Foundation, and Lungevity all have excellent educational materials about your cancer and treatment.

1socalgal | @1socalgal | Jun 19 12:28pm

I noticed that my ankles were swelling, too. Tagrisso might have played a part, but I figured it wouldn't hurt to get out the compression stockings I used for travel (15-20) and I got out the tape measure as well. The stockings really helped and my ankles in the evening looked a lot like my ankles in the morning. I wear them every day now and I do hand and finger strengthening exercises while watching tv. Pulling on compression stockings is a challenge, but my hands have gotten a lot stronger and get the job done.