By Deborah Benton, 15 year lung cancer survivor.
15 year lung cancer survivor, Deborah Benton
It’s a new year! For me, it is the year of my 15th birthday. It is really the year of my 59th birthday, but thanks to lung cancer, my life has been divided into two parts, BC (before cancer) and AC (after cancer). I was diagnosed with stage IB adenocarcinoma, on July 27, 2000 (my 44th birthday) and it rocked my world to its core. Within a week of diagnosis I had a lobectomy. I had no chemo or radiation and I have been cancer-free since then. The physical healing was easy, the emotional healing still continues. After surgery, I was sent off to “live my life”, only I had no idea how to do that anymore. I quickly found there were no support groups and pink ribbons for lung cancer. Not only that, but there seemed to be no compassion either, until I met the people at Lung Cancer Alliance. They were my salvation and I credit at least part of my survival to them. Each year gets easier, but the fear of recurrence really never leaves me. There is always that little voice in my head saying “Don’t get too complacent.”
When I was diagnosed I could not find a single person who had survived lung cancer long term. The good news is now I know lots of them! One of my wishes is that my story of survival can provide hope to all those who have to hear the words “You have lung cancer.” My other wish is that people realize there is no one way to survive cancer. Some of us speak with unbridled optimism and some of us never speak of our experiences at all. My method of survival involved a more pragmatic approach and I was often accused of not being grateful and of being pessimistic. Believe me neither of those accusations is even close to the truth. Survival is personal and, as with other aspects of life, we all do it differently. And you know what, even though I was not the most optimistic survivor, I am still here—healthy and happy! While it is probably far easier for most of us to listen to the optimist, it may be far kinder to give 1, 2, or dare I say even 5 minutes, to the person still grappling with recovery from a life and death diagnosis.
I was diagnosed 7 mos. Ago with 1b adenocarcinoma. I had a lobectomy and I’m so scared . My mom died at age 57 with lung cancer who h was in 1987. I am 51 and it was found when I had a motorcycle accident. Everyone I tell gives me “that look”. I have a good attitude but just need to vent. Looking for encouragement.
I am 59 and was diagnosed (also an incidental finding) in November of 2016 with stage IIA NSC adenocarcinoma. I also had a lobectomy and then chemo and was also very scared at first. I had been a ‘stress smoker’ on and off during our kids’ teen and young adult years and knowing that my choices to smoke then may have caused my lung cancer has been hard for me to deal with. I wonder if people judge me, etc. I have had clean scans so far but am anxious about every little ache or pain in my body. I’m told by cancer survivors that this is the new normal and it will get easier, and I believe it will, if I survive… but I worry.
Stage IB is so early. I hope that reassures you a little. My oncologist told me something encouraging when I first met with him: that I shouldn’t even bother looking at the numbers because “the numbers are for the researchers… they really don’t tell you anything about how you’re going to do.” So I stopped looking after that. Are you going to have chemo? Mine was really not too bad. You are not alone! You are not alone! Be strong and courageous. (( ))
Jama
Same story here, except fell off my horse. 48 at diagnosis……i think we will be fine. i have no chemo or radiation ordered. My surgeon said “Best possible outcome after surgery” Gave me excellent prognosis. i have decided to agree and back riding my horse. I call him PET Scan now. ha ha.
janine
40, diagnosed 3a andenocarcinoma May 30 this year, lower left lobectomy May 17. Scared out of my mind. My body can’t handle chemo. Had 1 round. Waiting for my radiation to start in a week or so. It’s hard to only see all the bad stuff. And I hate when people give me that look like I did it to myself. I’ve never smoked. If you have lungs, you are at risk. I just wish I had a crystal ball to see one, five, ten years into the future. The hardest part for me: my daughter is 10.
Any positives would help.
diagnosis of cancer is a life-shattering thing and coming to terms with reality is so painful for the person and also the caretaker. Getting the right support system is crucial for surviving cancer
So glad to have found this. I am scheduled for lobectomy on 12/13. Incidental finding on CT. Never smoked. 46 years old.
Our thoughts are with you. Please know that you are not alone. If you have questions about what you are going through or just need someone to talk to, please contact our support staff at 1-800-298-2436 or email support@lungcanceralliance.org. We can also have one of our support staff reach out to you directly if you prefer to send your direct contact information. Sending positive vibes your way.
So happy to find this forum. Recently diagnosed with stage 1. Lobectomy scheduled for 12/18. I’m 50 y/o. Surgeon says I will not die from this disease. How could he possibly know? Hope he’s right. Trying to be optimistic. Hate this soooooo much!
Hi Steve, our thoughts are with you. Please know that you are not alone. If you have questions about what you are going through or just need someone to talk to, please contact our support staff at 1-800-298-2436 or email support@lungcanceralliance.org. We can also have one of our support staff reach out to you directly if you prefer to send your direct contact information. Sending positive vibes your way.
Iam recovering from my lobectomy as I write this comment
I was so scared but it really went easier than I thought
I hate this soooo much too
I am trying to be brave that it will not come back but I am terrified
Hi Teresa, our thoughts are with you. Please know that you are not alone. If you have questions about what you are going through or just need someone to talk to, please contact our support staff at 1-800-298-2436 or email support@lungcanceralliance.org. We can also have one of our support staff reach out to you directly if you prefer to send your direct contact information. Sending positive vibes your way.
Hi, I am mother of 3 boys and my early 50s, just diagnosed with Stage IV Non Small Cell Lung cancer. It was positive for EGFR mutation. Per my oncologist she will be starting me on Tagrisso ( targeted therapy) which is a daily pill. I am still very early and my emotions are very raw. All I want is to live long enough to see my boys ( 12 1/2 years old twins, and 20 1/2 years old in college at Rutgers) as grown-up men and grow older with my husband of 24 years. I am thankful that there is treatment but I know from my doctor that this is not curable. I will have to live with this treatment all my life to keep the cancer under control. Are there any lung cancer long term survivors that I can connect with? Many Thanks for all the support. I am so happy I found this site. with Life and Health to all . Thanks Basha
Hi Basha, our thoughts are with you and your family during this difficult time. Please know that you are not alone. Our Phone Buddy program is a great resource to help you connect with survivors who have been in your shoes. You can learn more about our Phone Buddy program here: https://go2.org/resources-and-support/emotional-support/phone-buddy/. One of our support staff members will reach out to you via email in the next 48 hours to help match you with a Phone Buddy.
If you have any immediate questions about the Phone Buddy program or what you are going through, please do not hesitate to contact us at support@lungcanceralliance.org or 1-800-298-2436. Sending positive vibes your way.
Diagnosed with stage 1a small cell on Dec. 10, scheduled robotic lobectomy for Jan. 22 2019. Former 40 yr smoker, age 57, quit 1 yr. Prior to diagnosis on my own. I’m maintaining a positive attitude, and while apprehensive, I know I can beat this. Again. In 2004 I was diagnosed with rare muscle carcinoma, surgically removed, no recurrance. Each and every one of you can beat cancer too just like I am going too Again! Keep us informed on how you are doing. Best wishes!
Keep up the strong fight, Ron! If you have questions about what you are going through or just need someone to talk to, please contact us at support@lungcanceralliance.org or call 1-800-298-2436. Sending positive vibes your way.
Bethany:
Happy New Year and thanks for the reply. Surgery was successful and I am now recovering. Because of the holidays It’s been difficult to contact my surgeon, however my general practitioner told me that the tumor was 2.9cm, it was completely removed and that they checked 11 lymph nodes, which were cancer free. No indication of any cancer anywhere else in my body! Good results but I’m scared and a little depressed. Thanks for the support.
Steve
Hi Steve, Happy New Year to you as well! It is great to hear that your surgery was successful. Many people have feelings of anxiety and depression after going through a similar situation. Know that you are not alone and there are ways to manage these feelings. I would encourage you to check out our webinar about anxiety before, during and after lung cancer treatment, https://www.youtube.com/watch?v=K2loUaju2h4. Additionally, our support staff is a great resource to talk through management techniques and next steps. They can be reached via 1-800-298-2436 or by email at support@lungcanceralliance.org. If you prefer, I would be happy to have one of them reach out to you directly. Let me know! Sending positive vibes your way.
Steve glad to hear that your surgery went well. I was diagnosed in September of 2015 and had a lobectomy in October of 2015. Mine was 2.6 cm. There is not a lot of information out there for people with stage 1 lung cancer, but I just wanted to let you know that the advances made in the treatment of all stages of lung cancer has increased dramatically in the last 3+ years since I was diagnosed. It took me a while to fully recover from the surgery, but I was able to go back to work after 6 weeks and have minimal nerve damage. Do I still get nervous about it? Absolutely, especially right before a CT scan, but that is a normal reaction. Do I think more about my mortality? Yes, but it’s also opened me up to living more in the present and I actually enjoy doing things more because I’m not stressing about the little things now. I wish you a full and speedy recovery!
Hi Pat, thank you for sharing. Please know that we are here every step of the way in your lung cancer journey. If you ever have questions or just need someone to talk to, please contact our support staff at 1-800-298-2436 or email support@lungcanceralliance.org. Keep up the strong fight! Sending positive vibes your way.
Hi All, Diagnosed with Stage 1b, VATS done Jan 29, wedged out tumor. I still have 2 more nodules that they are watching in different lung areas. Feeling Lucky found by accident when I asked for Chest Xray, Dr then said clear but got a call later advising to come in for CT Scan which showed 3 nodules, 1 did not look good. It was Adenocarcinoma cancer. CT’s every 3 months. Lost my brother to Pancreatic last year and have another brother with Stage IV lung. I have learned that smoking causes Squamis Cell Cancer, We all grew up across from a factory at Zug Island with lots of chemicals. Recovery not so easy, was very active before surgery, was excited about starting to date after my girls have left the nest, Life has a whole new light! Anxiety level extremely high, finally got some help with MD Anderson Psychiatry Doctor. Trying to get my stamina back, any ideas out there? Reading these post gives me hope. Thanks All!
Hi Patricia, thank you for sharing. Please know that we are here every step of the way in your lung cancer journey. If you have questions about what you are going through or just need someone to talk to, please contact our support staff at 1-800-298-2436 or email support@lungcanceralliance.org. For tips on managing anxiety and fatigue, I’d encourage you to check out our educational webinars: https://go2.org/resources-and-support/webinars/. Sending positive vibes your way!
Steve glad to hear that your surgery went well. I was diagnosed in September of 2015 and had a lobectomy in October of 2015. Mine was 2.6 cm. There is not a lot of information out there for people with stage 1 lung cancer, but I just wanted to let you know that the advances made in the treatment of all stages of lung cancer has increased dramatically in the last 3+ years since I was diagnosed. It took me a while to fully recover from the surgery, but I was able to go back to work after 6 weeks and have minimal nerve damage. Do I still get nervous about it? Absolutely, especially right before a CT scan, but that is a normal reaction. Do I think more about my mortality? Yes, but it’s also opened me up to living more in the present and I actually enjoy doing things more because I’m not stressing about the little things now. I wish you a full and speedy recovery!
I had the upper right lobe of my lung removed in January 1993. I was 43 years old. I will be 70 this November. I still get the look when someone learns I had lung cancer. The 1st question is always, did you smoke? No,but thanks for asking. I am always aware of my good fortune for the early discovery and successful surgery. It was stage 1 encapsulated carcinoma, found during a pre deployment physical. The VA still does follow up testing as they acknowledge the possible cause was Agent Orange. My doctors had no idea why I had the disease.
Hi Jim, thank you for sharing a bit about your personal connection with lung cancer. If you have an interest in sharing your story with our broader audience, you can submit your story via our website form: https://go2.org/get-involved/share-your-story/. Sending positive vibes your way!
Wow, what an share!!!! Thank you for sharing with us and showing us hope!
Had a lobotomy of my upper right lung on May 3, 2019, for stage 1 cancer which became stage 3 when it was found to have spread to 12 nodes. Surgeon said he got it out 100%, but my oncologist started chemo that lasted for only one treatment because the reactions were so negative. Finished with 30 days of radiation last week as a precaution in the event that even a speck of cancer remained. PET scan prior to radiation showed absolutely no cancer. My question is whether or not to start immunotherapy. Two oncologists have opposing views and of course I’m confused and anxious. Where should I go for answers please? A very knowledgeable nurse told me that often an oncologist will push immunotherapy only because they have it to offer when it’s not really necessary and only serves to lower the quality of life. I’m a healthy, active 70 year old with a history of smoking. Thank you.
Hi Susan, thank you for reaching out to us with your questions. It sounds like our LungMATCH program would be a great resource for you, and can help provide some guidance. If you have more general questions or just would like someone to talk to, you can contact our HelpLine at 800-298-2436 or by emailing support@go2.org. Sending positive vibes your way.
I was diagnosed with Stage IV NSC EGFR Positive lung cancer 2.5 months ago. It was found via a brain tumor…Was prescribed Tagrisso, took for one month with very little side effects. Been back at work 3 weeks, going thru radiation right now. Monday i will be halve way done. The PET scan found only one tumor in my right lung, no lymph nodes involved. I feel very lucky that it went to my brain or I wouldn’t have had a clue there was anything wrong. My Dr seems to think we may can get rid of it!!! Anyone else have the EGFR gene?
Hi Wendy, thank you for sharing. Please know that we are here to support you every step of the way. If you or your loved ones have questions or just would like someone to talk to, please reach out to our HelpLine at 1-800-298-2436 or support@go2.org. We will keep you and your family in our thoughts.
I fell over and broke a couple of ribs which led me to ask for an xray due to the pain. The results showed a mass in the middle of my right lung and its small about 22mm by 33 mm . I quit smoking for thr the 7th time but i am so anxious as im in a small town and the surgeon comes up once a month . Ive had the PET , ct contrast and brain. Apparently the PET scan showed it glowing son the drs rexcommended a lobe ectomy but now im told a wedgeectomy , after all the resukts came in. Im told biopsy is too difficult because of the position. So the dr is going by the scans that its cancer abd im being pushed to go to surgery in the city 5 hours away as it contained and hasnt spread . Im really anxious and scared as im finding it hard to a accept . I live alone so hat doesnt help . Im 61 and have been a lap swimmer abd can do 20 laps though slow . In one breath im told its a cure then in another im told it might come back. I need to make up my mind this week to push for a biopsy and maybe make it worse in time taken but know what it is exacty or go with the surgey based on the scans . Now its getting into autumn. we have the carona virus so its not easy to know what to do with any peace of mind . Im hoping it isnt malignant but the dr feeks it is .
Hi Lia, thank you for sharing your experience, we are so sorry that you have to go through this. Please know that you are not alone. If you need someone to talk to during this difficult time, please feel free to reach out to our HelpLine by calling 1-800-298-2436, or by emailing support@go2.org. We’re sending positivity your way.
Hi Lia, something like this is never easy to hear or accept. I almost fainted when they told me, as a matter of fact even 6 months after lobectomy for stage 1a, I still find it hard to believe. My surgeon told me, only way we’ll know what we are dealing with and how to best approach was through surgery. He started with a wedge, if that showed signs of cancer then lobectomy. I had a lobectomy. I stayed in the hospital 3 days, and only did 4 days of pain meds once I got home. Just remember to take it very easy on yourself, do your breathing exercise and you will be fine. No lifting for about 2 months. You will have tenderness, especially around incision for 4 months. Wear loose clothing. And please please keep yourself warm at all times by layering clothes for a while. Do your best to avoid a cough, it will stick like glue and linger. So be very gentle to your lungs. Hope this helps!
Hi Vicky,
I was diagnosed with Stage IA on January 30th of this year. I also started with a wedge then had a lobectomy.
No chemo or radiation for now. Just watch and wait which as you know is difficult to say the least. Do you know what grade your tumor was? Did your onconlogist recommend getting the biomarker testing done? Just reaching out to see what others were advised in the same situation as myself.
My tumor was a grade 2 and had lepidic and micropapillary growth features.
I would love some feedback.
All the best! Stay safe and healthy!
Diagnosed early March (2020) this year with non small cell in the tight upper lobe. Removal is not an option because the tumor is at the opening Just completed 5 of 6 weeks chemo & radiation at the same time. Next up is imunotherapy. (sorry for the spelling) I’m 66 years old and in generally good health.
I’m wondering what life will be like after I recover from the treatments.
Can I return to the gym? Can I back to cutting my own grass one day? I enjoy playing guitar in music groups, will I be able to return?
I know everybody is different. I am really wondering how much do you recover back to “normal”
Hi sir,
How are you now?
My father had same diagnosis and we are done with the treatment. The doctor had called us after 3 months for follow up,what does that exactly means?
My 44th birthday,I was diagnosed with stage 1 b adenocarcinoma..I had one lobe removed in my left lung and I had chemotherapy for 5 months ..I am now 48yrs old and as my next scan is in a few weeks,I have become extremely nervous,although; i always do when it is time again..I seem to be doing okay physically, other than I still have alot of tingling and numbness in my chest area,not so much pain as just discomfort..I still have hard time eating very often as I have had nausea since surgery, so much nausea..I try to stay busy as I possibly can to not think much..the mental part of everything has brought so much darkness and I have felt so alone since that day..I keep a smile and appear happy and confident always,but I am absolutely not..I do not know of any support groups near me,but wish I did..alot of you guys stories have honestly helped me through many days..today is my first post..thanks to all of the ones sharing their positivity..
Hi Christy, thank you for sharing your story with us. I am so sorry to hear about the difficulties of your lung cancer journey. Our patient support staff members are a wonderful resource to go to when things are hard. Please feel free to contact them either by calling 1-800-298-2436 or emailing support@go2.org. Please know we are all thinking of you during this difficult time.
Looking to talk to others that have had a lobectomy. Cancer has been after me. I had endometrial cancer and had a complete hysterectomy about 7 years ago. 3 years ago I was diagnosed with Esophageal cancer and had an Esophagectomy. Now I have lung cancer. I’m scheduled to have surgery Dec 2nd. How did/ do you cope with it? Do you have trouble breathing? How long was your recovery?
Thanks.
Hi Jane, thank you for sharing your story with us. If you’re interested in speaking to someone who’s been through a similar path I’d highly recommend looking into our Phone Buddy program at the below link. Our support staff will work to pair you with someone who’s had a similar experience or diagnosis, and although we can’t guarantee that there is someone who’s had your exact experience we will find the closest match we can. Sending positivity to you. https://go2.org/resources-and-support/emotional-support/phone-buddy/
I was diagnosed with non small cell lung cancer. Stage 1b. Had my lower right lobe removed. The following week had to have another surgery as the lung didn’t seal. The drainage tube was rubbing against something. Anyway 2 major surgeries and more pain meds than one could imagine. I have healed physically but emotionally I’m broken. I struggle everyday. I was a strong woman where have I gone, will I be back.
Thank you for sharing your story, Cindy. If you need someone to talk to our support team is a wonderful resource. For more information on how to contact them please visit: https://go2.org/resources-and-support/general-support/helpline/ Sending positivity your way during this difficult time.
Recently was found to have a mass located in or on my right upper lobe. The surgeon wants to do a lobectomy of my upper lobe to remove the mass. 3 years ago I had a heart attack and was also diagnosed with emphysema so I’m a little concerned I am currently on oxygen and not sure what to do
They tell me it’s not cancerous and it’s routine surgery. Anyone else deal with this.
Any input would be appreciated.