Carrie5260 Posted May 16, 2021 Share Posted May 16, 2021 My name is Carrie. During a follow up CT scan for back pain, the radiologist found a mass in my left lung. I’ve had a CT scan of the chest/abdomen/pelvis, a PET scan, and an MRI of my brain. The mass is between 3 and 4 cm. It did light up on PET scan. I’ve seen two oncologists and one surgeon so far. The second oncologist was a second opinion. They disagree on my plan of care, but we’ve agreed to a repeat CT on June 7th. If the mass is same size or larger, I’ll be scheduled for surgery. There’s still a chance that this could be inflammation or infection, but the oncologist seems convinced it’s cancer. I’m terrified. I can’t get rid of the knot in my stomach and chest. Does this sound familiar to anyone else ? How do you deal with the anxiety ? Link to comment Share on other sites More sharing options...
LexieCat Posted May 16, 2021 Share Posted May 16, 2021 Hi, Carrie, and welcome! I'm in NJ, too. I think everyone feels a mix of similar emotions when they first hear they have (or may have) lung cancer. The good news is that lung cancer today is far more treatable (and sometimes even curable) than it was only a few years ago. I had surgery four years ago for what was then a very early cancer. Unfortunately, lung cancer can be tricky and mine recurred about three years later in the other lung, a few lymph nodes, and a small spot of bone. I went through the first-line treatment for my type of cancer and after an initial good response, the cancer started to progress. I've opted to start a very exciting clinical trial using a new immunotherapy technique. For me, the best way to cope with the anxiety was to stay engaged here. These folks have seen me through everything, from my initial diagnosis four years ago to now. We have members here who are 15-20 years out from an advanced cancer diagnosis. We also have quite a few folks who had that initial surgery and who have had no recurrence. So there's tons of reasons to be hopeful. I take it the mass (assuming it's cancer) is not in a position that will permit a biopsy? When I had my surgery, the nodule was too small to biopsy, but both my pulmonologist and my surgeon felt its appearance was suspicious enough that, even with a negative biopsy, they'd want to remove it. Believe it or not, most lobectomies these days (removal of the affected lobe, which is standard procedure to reduce the likelihood of cancer cells being left behind) is pretty simple and "easy" as surgeries go. For a VATS lobectomy (video-assisted thoracic surgery) three tiny incisions in your side and back are all you need. Most hospital stays are a couple-three days. I was out with friends to a concert and dinner a week or so after I got out of the hospital. My C-section hurt worse, and longer, than my lobectomy. After my recovery, I noticed very little change in my breathing capacity. Even now, an oximeter reading will show my oxygen level at 97 or 98 percent. Link to comment Share on other sites More sharing options...
Judy M2 Posted May 16, 2021 Share Posted May 16, 2021 Hi Carrie, everyone reacts the same as you have when they get a lung cancer diagnosis. When I started out at Stage IIIB in October 2019, I had a 6 cm mass in my left lung with spread to lymph nodes. My PCP called me in to her office at 5 pm on a Friday, so I knew the news was not going to be good. I was not a candidate for surgery. It's natural to be anxious at these beginning stages, especially when you have 2 differing opinions. Don't hesitate to go for a third. Whether you have surgery or a bronchoscopy, you should request biomarker testing to determine whether there is a genetic mutation in the cells. Several types of mutation (like the one I have) can be managed as a chronic illness and treated with a daily pill. This site is a valuable resource and there are many stories of perseverance and survival. I'm certainly one of those, being NED (No Evidence of Disease) today, 14 months after the start of treatment (chemo, radiation and targeted therapy). Once you have a treatment plan, whether surgery or not, and start moving forward, you'll feel like you're making progress. My best advice is to take one day at a time and stay away from Dr. Google. The GO2 Foundation is also a good resource. Come back here and ask questions. Hang in there, we're all on the same ride. Link to comment Share on other sites More sharing options...
Carrie5260 Posted May 16, 2021 Author Share Posted May 16, 2021 I’m still trying to find my way around this forum. I don’t know how to respond to my replies individually, so I’m going to respond to both of you (Lexiecat and Judy M2). Thank you so much for taking the time to respond. I really appreciate the information and encouragement. My mass is in my left lower lobe. Initially there was some discussion of a needle biopsy or a bronchoscope biopsy). My mass is positioned near the wall of my lung, right between two ribs. The needle biopsy seemed to be the appropriate route, however there seemed to be some concern that they wouldn’t be able to obtain a sufficient sample. The oncologist consulted a surgeon and he suggested a wedge biopsy. They felt it was the best way to obtain a biopsy and perform curative surgery at the same time. If the mass is not found to be malignant, they’d close me up after just the wedge resection. If malignant, the surgeon would do a segmentectomy. This opinion comes from a surgeon at Inspira, in NJ. I’m going for a second opinion at the University of Pennsylvania this Wednesday. I met with his PA two weeks ago (she felt strongly that it was scar tissue from an old pneumonia) and scheduled a repeat CT scan in 4 weeks. We’re hoping the mass will be smaller... if not, they would also recommend a wedge resection. She said that at Penn, they do a lobectomy (rather than a segmentectomy) if cancer is found. The Inspira surgeon said that he hasn’t seen improved outcome with lobectomy vs segemtectomy. He also said that in all cases where he’s removed the mass while at stage 1, he hasn’t had any recurrence ! Depending on size, they do a short course of chemotherapy post op. Lexiecat, I live in Franklin Twp (Newfield) NJ. (Gloucester county). We’re practically neighbors. Thank you for your information about the VATS surgery - I was expecting a more painful post op course than you’ve described, so that’s encouraging. Judy M2, my doc talked to me about the biomarkers and mutations that can be utilized to treat cancer. Your experience with immunotherapy is very encouraging ! I’m very happy for you - for both of you. I will keep both of you in my prayers. I pray that I get lucky and my mass shrinks. If this turns out to be cancer, my greatest concern is for my son. He’s 25, so clearly an adult, lol. He’s currently living in CA, attending graduate school at UC Irvine, pursuing his PhD in physics. I haven’t told him about the mass, because I’m still hoping it will turn out to be an infection or inflammation. Why have him worry about the possibility of cancer when I don’t have my answer yet ? He’ll be home for a visit the week after my repeat CT scan. If surgery becomes necessary, I’ll be able to discuss it with him then. My doctor thinks I should give him some information before he comes home - that he’ll be blindsided otherwise ... but I as far as I’m concerned, there’s no definitive information to tell him at this point. I’m really concerned that his concern for me could derail everything he’s worked so hard for. What do you folks think ? I apologize to all for the long post. I promise not to make it a habit ! ❤️ Link to comment Share on other sites More sharing options...
LexieCat Posted May 17, 2021 Share Posted May 17, 2021 I'm in Camden County (Gloucester Township) but RIGHT next to Washington Tp. in Gloucester County. Ever since my Stage IV diagnosis, I've been treated at Penn--they are FANTASTIC. The trial I'm doing right now is at MD Anderson at Cooper--which is where I had my original diagnosis, surgery, and followup (until the recurrence). Cooper was great for the original surgery, but once things became more complicated, I decided I preferred Penn. Unfortunately, my oncologist at Penn is leaving in July, so I'll have to find a new one anyway. Penn is an NIH/NCI Comprehensive Cancer Center--highly rated. The only reason I'm doing the trial at Cooper is that's where they are doing this particular trial. You know your kiddo better than any of us do, so you're in the best position to know how he'd react to news like this. You can reassure him that if you have to have the surgery it should be simple and with a speedy recovery. Depending on what they find when they do the pathology and testing, you might have adjuvant chemo, and you will be followed with scans every few months for a few years to make sure the cancer stays gone and, if there is a recurrence, to jump on it as soon as possible. As far as the surgery goes, unless I had other breathing/lung problems, I'd go with the lobectomy. Every expert I've ever heard has said it's far safer than removing only a portion of the lobe. Link to comment Share on other sites More sharing options...
Carrie5260 Posted May 17, 2021 Author Share Posted May 17, 2021 Thank you Lexiecat !! My two big decisions are Penn vs Inspira and lobectomy vs segmentectomy. I expected that Penn would be my obvious choice, but when I met the Inspira surgeon I really liked him and couldn’t argue with his success rate, statistically speaking (if I understood correctly). It also seems logical that the lobectomy would be safer than a segmentectomy. It’s all so confusing ! Thank you so much for your advice. Link to comment Share on other sites More sharing options...
Susan Cornett Posted May 17, 2021 Share Posted May 17, 2021 Hi Carrie - It's a lot to process. It's scary. It sucks. But the great people in these forums are absolutely incredible. Someone here has endured whatever treatment, side effect or oddity that you'll come across should it be cancer. My first suggestion to you is this: don't Google statistics. So much has changed in the last 2-3 years and we're living longer and better after this diagnosis. Let us know how we can help you. Link to comment Share on other sites More sharing options...
Carrie5260 Posted May 17, 2021 Author Share Posted May 17, 2021 Thank you Susan ! You’re right, I’m quickly learning that too much information is not helpful. I’m a nurse, so I guess heading to the Internet was an automatic response ... but I’m finding it’s only made me more anxious. Thank you for your reply and your advice, I really appreciate it ! Link to comment Share on other sites More sharing options...
TJM Posted May 17, 2021 Share Posted May 17, 2021 Welcome Carrie. Since you asked for advice I'll give you my 2 cents. Lobectomy would be an easy call for me, assuming your lungs are otherwise healthy. Its clean, quick and comprehensive. My pathologists opinion was the difference between a biobsy and full removal were so small that it didnt make sense to add an invasive procedure. My mass was 4.2 cm round. Her opinion was to remove it regardless whether it was malignant or benign. I would give your son a heads up. He sounds like a very intelligent lad. Guessing he could probably help you out with interpreting test results and treatment plans. Close call tho. Peace Tom Link to comment Share on other sites More sharing options...
Rower Michelle Posted May 17, 2021 Share Posted May 17, 2021 Hello from another Jersey gal. I grew up in Essex County, live in the KC metro now. I was 51 at the time of my diagnosis in 2018. My biggest concern was how to communicate this to my parents. They know I had been hospitalized with pneumonia however I didn’t tell them about the biopsy. When the results came in 48 hours later we were is such a state of shock. We told some close friends right away to get some “practice” in answering questions. I decided to let me parents know very early on. I made sure they were both going to be home with no major commitments for the day. For me, it worked out for the best to let people know what was happening because we needed all the assistance we could get. From my experience, given the complexity of this disease, I’m an advocate for sharing this news sooner rather than later. Welcome to the family. Michelle Link to comment Share on other sites More sharing options...
Judy M2 Posted May 17, 2021 Share Posted May 17, 2021 Like Michelle, I told everyone as soon as I knew, even my father who was 97 at the time. I started a Caring Bridge site that I still use today, through which I've also tried to raise awareness for lung cancer research funding. My hairdresser was the only one who had a devastated reaction, probably because so many of her clients go through cancer. Everyone has been very supportive and they are all amazed at the progress I've made. Link to comment Share on other sites More sharing options...
Dona Posted July 17, 2021 Share Posted July 17, 2021 On 5/16/2021 at 7:17 AM, Judy M2 said: Hi Carrie, everyone reacts the same as you have when they get a lung cancer diagnosis. When I started out at Stage IIIB in October 2019, I had a 6 cm mass in my left lung with spread to lymph nodes. My PCP called me in to her office at 5 pm on a Friday, so I knew the news was not going to be good. I was not a candidate for surgery. It's natural to be anxious at these beginning stages, especially when you have 2 differing opinions. Don't hesitate to go for a third. Whether you have surgery or a bronchoscopy, you should request biomarker testing to determine whether there is a genetic mutation in the cells. Several types of mutation (like the one I have) can be managed as a chronic illness and treated with a daily pill. This site is a valuable resource and there are many stories of perseverance and survival. I'm certainly one of those, being NED (No Evidence of Disease) today, 14 months after the start of treatment (chemo, radiation and targeted therapy). Once you have a treatment plan, whether surgery or not, and start moving forward, you'll feel like you're making progress. My best advice is to take one day at a time and stay away from Dr. Google. The GO2 Foundation is also a good resource. Come back here and ask questions. Hang in there, we're all on the same ride. Judy, what treatment did u have if not eligible for surgery? Was it bc of the mass location or the size? My mass is 5.2cm Link to comment Share on other sites More sharing options...
Judy M2 Posted July 17, 2021 Share Posted July 17, 2021 I think it was a combination of location (lower left lung) plus lymph node involvement. Link to comment Share on other sites More sharing options...
Dona Posted July 17, 2021 Share Posted July 17, 2021 Thx for the info, Judy! Link to comment Share on other sites More sharing options...
Dona Posted July 19, 2021 Share Posted July 19, 2021 Carrie, pls provide an update on your diagnosis. I am new to.this forum and it's a gamechanger for my attitude and future hope. A 5.2cm mass was found on my rlung several days ago, and I am currently waiting to make contact with an oncologist for PET and possible MRI. Because u posted 2 months ago, Im anxious to hear how you're faring. Pls check in and let us know how you're doing! Link to comment Share on other sites More sharing options...
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