What should every newly diagnosed person know about lung cancer?

What do you think is most important for someone newly diagnosed to know? What do you wish you would have known at your diagnosis?


Community Answers
  • edydede
    1 month ago

    It’s probably going to take up to 2 years after treatment to feel a little better. There is a light at the end of this horrible disease. I had my surgery st the very end of 2016. I had a wonderful team at St. John’s hospital. My doctor was Dr. Robert McCenner Jr. He’s the head director of thoracic surgery. He did a great job with me. He removed my right lower lobe and remove a nodule plus my lymph nodes. He found 4 cells in my lymph nodes. Everything came out beautifully.

  • edydede
    2 months ago

    I was very lucky to have a nurse with me not only after surgery, Chemo and Radiation. She was everything to me. She made sure that I napped. I developed Neuropathy and I could barely walk. I immediately went for acupuncture. The doctor told me up front that he couldn’t cure me, just help me with my symptoms. He actually helped me walk again. I’m so grateful to him for that. My nurse took me to all of the Doctors appointments and tests because I couldn’t drive. She made me healthy breakfasts and snacks.
    I don’t know what I would’ve done if I were alone. My husband couldn’t take care of me nor my son. She was an absolute angel from heaven. I’m so glad I was able to pay her. You must make care set up when you come home.

  • Margot moderator
    2 months ago

    Thanks so much for sharing @edydede – I’m so glad you had this nurse there and that she was so helpful, as was your doctor. Thinking of you. – Margot, LungCancer.net Team Member

  • edydede
    2 months ago

    You will look older than you are. The chemo is deadly poison which I went through. After I finished my treatments I went to my Dermatologist and had Botox treatments. What ever wrinkles I had got much werse. My facial lines were deeper than ever. I’m young 68 and looked pretty good before Chemo. I couldn’t look at myself. So, that’s what I did. I’m much happier today.

  • Moira Cistola moderator
    2 months ago

    Hi there,
    Wow, good question but so very difficult to answer. Each experience is incredibly unique. A few things come to mind that I will share from my experience…
    1) The pain is manageable! I had GREAT post op pain management. There will be pain no doubt, but PLEASE get Palliative care involved from the beginning…it makes a huge difference.
    2) Fatique (for me) was and remains a problem even now, 2 years post op.
    3) I choose to just be completely open with people regarding my diagnosis. It is hard to look completely “normal” to the outside world, but continue to struggle with pain, fatique, nausea and other issues in your daily life. So when I am forgetful, or just tired I have no problem with saying I am dealing with the effects of lung cancer treatment. It really doesn’t seem to freak anybody out…I don’t make a point of bringing the subject up, but I am not ashamed of my diagnosis, and don’t find it some huge secret to keep.
    4) Chemo brain is a real thing!
    Hang in there! Thoughts and prayers for you.
    Moira

  • edydede
    1 month ago

    Believe me I feel the same way!

  • Rosi
    5 months ago

    I know the pain and feeling following surgery when everyone goes home and especially the nerve pain. Reach out through surgeon and hospital’s cancer center to oncology social services. Blessings @notme

  • Christina
    5 months ago

    I believe one big rule is to NOT believe everything you read on the Internet about lung cancer survival. There are so many advances in treatment happening everyday that most of what you are reading today applied to diagnosis that were established 5 years or more ago. I made my self more depressed and crazy by going to every site I could find trying to find a better answer than what I was reading. My oncologist would not give me his opinion as he said everyone is unique and different. I am thankful I am two years in now with now evidence of disease after being diagnosed as stage2B but resected as 3A.

    Christina

  • edydede
    1 month ago

    I have/had Small Cell Lung Cancer and still today more research is being done to people who have Non Small Cell Cancer. Apparently I’m in the minority. Nothing new for my type of cancer. I went through the whole regimen of surgery, Chemo and radiation. I’m into the illness going on 2 years, too. I’m being watched very carefully every 3 months I go for a Pet Scan and Brain MRI’s. The only thing they know is that this cancer is very active and could metastasis to the Brain. I too went on the internet to seek more information, but the only thing they have are clinical trials.

  • Margot moderator
    1 month ago

    Thinking of you @edydede – please do keep us updated if you’d like to. Some research is currently being done for small cell in addition to non-small cell lung cancer, like with targeted therapy, researchers are studying new drugs to act on molecular targets, such as DNA damage response inhibitors, immune checkpoint modulators, and antibody-drug conjugates, all of which are showing promise in SCLC. (https://lungcancer.net/research/) we will continue to post further research as it emerges! Thank you for being here and sharing with us. Glad to hear they are watching everything. Warmly, Margot, LungCancer.net Team Member

  • notme
    7 months ago

    Lung cancer surgery is the most horrific pain You will ever experience. You have to fight with every part of your being, mind, body, soul, every breath and you will be i”n the moment” fighting like that for a long time to make it through. Have more than one advocate for You in case one caves on you. One of your advocates should be outside the circle of your family and friends, a professional. Be very CERTAIN you have an in house care provider set up and I’m place before You return home. You will need this trust me. Stock up on protein drinks before surgery so when you return home they will be at your reach. You need this protein for healing. Not much will bring You pleasure or relief. If you can escape through music, prayer, essential oil therapy. Use these. For myself, I needed something to compress/hold my back, I had terrible neuropathy. What I found worked best for me was wearing tight undersized tank tops. Ones that were 1 or 2 sizes too small that would compress my skin, fat, muscle, nerves from irradicating, hold and settle the neuropathy down. Being large breasted did not help. So being braless and weighted down in front probably caused more nerve pain. The tight tank tops helped in supporting my breasts also. Palliative care is extremely important in your healing. Even after surgery. It may help to have some one simply hold a foot in their hand. This will have a calming effect. Positive touch overides pain. I am not saying massage your feet just yet. You will be in too much pain to have anyone messing with you, but simply hold your feet. Later, much later, maybe weeks later palliative care will be beneficial. You will know when you are ready, and where you want it. Definitely throughout post operative care. Drink tremendous amounts of water. Keep your face neck hands arms sponge bathed and moisturized well. You will Be very busy with in house care appointments, visiting nurse, physical therapist, caregiver etc.. After that you will be very busy with lots and lots of medical appointments for the next 5 years. I stayed in a nursing home about 2 weeks post surgery before returning home, it was awful there. Nursing homes are not set up or knowledgeable for this kind of care. They do not know how to move, transfer, a person with this kind of surgery, so have all your based covered. When I returned home there was supposed to be care providers in place. I played in bed for over 2 weeks before I could even call to find out why I was alone. Have everything prepared before you go in for surgery. If you are a single, a senior and alone, these things are very important. It is not uncommon for care provider agencies to be behind in what they are doing or say they are doing. This can go on for weeks and weeks as it did and has with me. Cover all your basis ahead of time. Call up “Ageing and Disability ” pre surgery. Them believe you will see better days, and you will. Just know you have to fight for yourself, he your own advocate. Of You are reading this here now pre surgery and on this site pre surgery, you will be getting the “REAL” and well directed. I did not know this site existed pre surgery, so you are well on your way to much success having all this information. Best of wishes and God’s love to you. There is hope after cancer.

  • Margot moderator
    7 months ago

    Thank you so much for this wonderful response @notme I know this information will really help many here! Thinking of you. How are you feeling this week? Best, Margot, LungCancer.net Team Member

  • notme
    7 months ago

    I sure do wish there were edit buttons so I could edit my text. I apologize for the typos folks.

  • Margot moderator
    9 months ago

    There are many important things to know about lung cancer upon diagnosis. This article has a lot of useful information on what comes next after diagnosis: https://lungcancer.net/living/diagnosed-whats-next/ and it can be important to make sure you are making medical decisions that work for you: https://lungcancer.net/living/making-decisions/ and communicating well with your healthcare team: https://lungcancer.net/living/communicating-care-team/ . An oncology social worker can also be a great help in navigating your journey: https://lungcancer.net/living/find-your-advocate-oncology-social-work/ And, always reach out here with any questions! Best, Margot, LungCancer.net Team

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