A question for the NSCLC Community

Imagine if you could travel back in time and meet the person you were when you or your loved one were first diagnosed. What advice would you give them? How would you describe to that person how you feel now?

Answers from the Community

I would have told my younger self to not move and to figure out a way to stay in New York, because that would have kept my psyche intact instead of me feeling as though I’ve lost my marbles. I would have been in my normal, or at least normal part somewhat of a life, and gone back to a normal life as opposed to being in a desolation that I am in now, because now it feels lonely. I’m depressed. I’m not moving on with my life, and I feel like I’ve lost four years of it since I was diagnosed.

Geez, I would go back and I would tell her that she’s doing everything correctly, taking it test by test, day by day, staying off the Google searches, and sticking to the medical terms only. And then I would give her advice to watch out for her mental and financial safety because her boyfriend at the time that she thought she was going to marry, took advantage of her illness and took advantage of her continuing to work at a very physical, full-time job and became a very mentally abusive person and stole her life savings without her realizing it was happening because she was more concerned with staying alive and staying at work and doing things that she loved. And comparing us, I’m very cautious now and I am more aware of my environment and the people that I allow in my life and I’m always in control of every decision. I get the final decision and I get to be in the decision process for anything that happens.

Very interesting question. If I could travel back in time. Probably I never would have smoked, and I had stopped smoking 10, 12 years before my diagnosis. So, the doctor, the oncologist, also said that that’s not what caused this. It was a mutation of a gene or something. So, I guess I would tell myself to take better care of your health because that’s all you have. And, that if you were faced with a difficult situation like cancer, that you would explore all the options possible to you, and not give up. And, that’s what I’m trying to do. If you’re given a choice between slim or nothing, always take the slim, because nothing is nothing and slim at least you have a chance. And, it’s better to light a candle than curse the darkness, that’s what I would say. And have a very positive attitude. Some days I don’t, but I try.

I would tell her that it was not a death sentence. With new treatments, it wouldn’t be nearly as bad as she feared. I’ve known several people in my family who have been diagnosed with lung cancer and all of them had died before I was diagnosed. So, the treatments wouldn’t be as bad as she feared and that statistics aren’t everything. And that I feel pretty great right now and expect to live much longer than I thought I would in the beginning.

Going back in time, what we would do is review more carefully the treatment plan and look more carefully at the chemotherapy and radiation combination. We may have decided to eliminate the chemotherapy entirely and possibly reduce the amount of radiation and look at some alternative treatments that might not be quite so damaging to the tissues of the body. At the beginning, of course, everyone is concerned with the disease and the seriousness of it, and you look quickly for the response that might be best to help it. More research would have been better and more information from other sources, especially people who have experienced the treatment other than just the medical staff, the oncologists and pulmonologists. And at this point, we’re accepting what’s happened and we’re continuing on with it. Some improvement is coming about, and we hope to keep that moving in the right direction.

I would tell them not to go by the statistics that you hear, because they are outdated and each case is individual, and it could be very frightening to hear about. I would also advise to always get a second opinion, and if two opinions don’t agree, to go for a third opinion because you can’t rewind. I would also tell them to relax, and take each day at a time and appreciate each day, because I worry so much with my scans for all these years, and if only I knew that I would be stable up until this point, I would’ve been able to enjoy a lot more on a daily basis, and I still think that’s how I would describe how I feel now.

The advice that I would give a person would be not to be overwhelmed by the diagnosis in the beginning. Right? Recognize the, or have confidence in your doctors and the medical folks that are helping you through this. And how I feel now is I’m grateful for everything that I’ve been given.

I would tell them to take every day at a time and remind them you’ll have good days and you’ll have bad days. And it’s okay to have good days and bad days. And just get through it however you can and lean on people that you love and love you.

If I knew now what I had known then, two and a half years ago, I was scared, I thought my life was over, I didn’t know if I was going to live five years, I was worried that I wouldn’t see my grandkids grow up, and I was young, 63 at the time. I am now living a full life. I exercise, I have lots of friends, I travel, except now with COVID, I don’t travel as much, but I see my grandkids, play with them. I’m able to do everything that I could do before diagnosis with a little bit more ease, because I can breathe better.

My advice would be that there is always hope. Do not pay attention to things that you read on the internet. A lot of the information is outdated, a lot of the statistics are very grim, but you are not a statistic. Take your time when trying to figure out treatment options. I know there’s a sense of urgency right in the beginning and you just want to take action, but sometimes it’s beneficial to take a step back to try to figure out the best strategy because you only have one chance to get your first line of treatment right. And also just try to educate yourself as much as you can about your disease and the treatments, that way you can make informed decisions and ask your doctors the right questions. I would say that now it’s definitely better. It gets better. I’m in a much better place emotionally. The beginning is really hard. Those first few months you feel like you’re just in a fog and you feel like a bomb exploded and you’re just walking around in the rubble. And now things have settled down, I can say that I live a relatively normal life now and sometimes I can even forget that I have cancer.

If I could go back in time, I would have told myself to never start smoking or quit as soon as possible. And, what I tell that person now is having lung cancer, having lung surgery, and three months of chemotherapy was certainly not worth smoking. Okay.

When I was first diagnosed, I was actually thunderstruck. I’d known two people with lung cancer, they had both lived no more than two years. And those two years were sheer hell, between surgery, chemo, radiation, more surgery, at all. When I was first diagnosed, I wanted no part of any of this. It was my husband and my doctor who convinced me that it wasn’t your grandfather’s lung cancer anymore. I still thought I was going to die very shortly thereafter. What I would tell that person now is, take a deep breath. It’s not at all as bad as you thought it was going to be. I would also tell that person to become a sponge and do a huge amount of research, because doctors never tell you everything. They don’t tell you about side effects until the side effect pops up and you’re figuring how the hell to deal with that. How would I describe to that person how I feel now? I feel very blessed. I’m here, it’ll be five years in September that I was diagnosed. We’ve traveled from Alaska to Russia on cruises. We’ve done a huge amount of things. Yes, it’s turned our lives upside down, because we’ve had to give up boating, we’ve had to give up the sun. But the glass is half full or half empty and I’m working on the half-full theory and it’s maybe even three quarters full.

I think I would certainly say “Don’t be afraid. Don’t be afraid. There are lots and lots of treatments out there, a lot of options. Try your best to understand what’s happening and do your own homework. Be your best advocate for yourself. Don’t be afraid. Just keep on going through it.” I think there was a second part to that question, I don’t remember it.

I would say insist on biomarker testing so you can learn upfront if you’ve got any genetic mutation or anything that is treatable by targeted or immunotherapy as opposed to just going the standard route and just getting the chemo not knowing what you’ve got. Get involved in a local support group, if you can. That’s one of the things I’ve not found locally that I really wish I had. Expect to be tired. I’m still tired. Also, that it’s okay to cry. Give into it if you need to.

I don’t think I would change much of anything, except maybe I would be a little bit more open to help from people. I tried to handle the whole thing myself. I was very stubborn and very independent. But I think I would probably handle it the same way again.