affenage Posted June 29 Share Posted June 29 Hi everyone! I am a breast and bladder cancer survivor, 2015 and 2016. Since they were 2 unrelated cancers, I have been very proactive about keeping watch for the next proverbial shoe to drop. I am a former smoker that quit almost 15 years ago. I started getting yearly LDCT done 3 years ago when a good friend was diagnosed with SCLC. I may have had the right intention, but I never really believed it would happen to me. Last week my CT showed a brand new, solid, 10mm (1cm) nodule in my right lower lobe. Multiple MDs have now expressed concern that this is highly suspicious for LC. It sits almost directly under the area of my breast that had a lumpectomy and radiation therapy. For the very first time in my life I found one benefit to having had previous cancer, and that was I was able to get immediate attention and direction by an oncologist that I am already used to and comfortable with. Thank dog for small favors! So, this week I have my Pet scan, and of course I am terrified. As I said, the location of this is in the area of my lung most likely to experience radiation from my breast cancer therapy, and although the stats have gotten much better, as a smoker I am at an even higher risk of LC from chest radiation. The fact this nodule went from zero to 1cm in a year is also quite concerning. i am an active single person, and I have always been completely independent. I worry about who to ask to drive me or stay with me or take care of my dog if I need procedures or therapies done that will make it hard for me. Has anyone else been through this? I really don’t have anyone conveniently local to me to lean on, most of my close friends are at least a couple of hours away, and the only primary family I have are my parents, who are both 88 and live a 13 hour drive from me. but, what I really came here for is some advice. The medical center I have used for my previous cancers has a cancer center but I wouldn’t call it better than average, and it specializes in breast cancer. I used to work at Sloan in NYC years ago (I am a retired research scientist) and I think there is value in seeking out the better places, at least to keep therapy plan options open. I live in fairly close proximity to Fox Chase, and can get to DC in just under 2 hours. So there is a lot available to me. But what I don’t know and I am hoping to find out, when is the best time to engage an outside team? I have my scan this week, and based on findings have my first consult with a thoracic surgeon the following week. Should I try and have a consult with someone before that? How long does it usually take to get in to see someone as a newly diagnosed person? As I said, I already have an oncologist in place who is directing my diagnosis and care. I am tempted to just go with it, as speed seems to be a good option. But I may just be suffering from depression over this and not energized to be more aggressive. Apologies over the length! And ty for reading this far! Quote Link to comment Share on other sites More sharing options...
LouT Posted July 2 Share Posted July 2 Hello and welcome to our forums. I'm sorry you need to be here, but glad that you found us. I'm delayed in responding to your post as I am in the midst of a family health crisis and haven't checked the forums for a couple of days. There are a great number of survivors on this forum who have had a wide spectrum of LC scenarios. Everything from a Stage, 1a surgery-only diagnosis and treatment to Stage 4 and numerous types of treatments up to and including trials. Having had a history of other than lung cancer (I had colon cancer in 2010). I appreciate that you come to the table with some experience, varied but still a worthy benefit going forward. As you know CAT scans are helpful when looking for uptake reactive cancer, but it can prove to be inconclusive. At least it was in my case. The CT Scan gets you started but the gold standard for diagnosing any malignancy is going to be a biopsy. Of course a nodule in a lower lung lobe can be problematic to take a sample from. In my case they tried for almost an hour before giving up and just waiting 3 more months and then did a resection, test the tissue and proceeded straight to the lobectomy. For me that was in May 2019 and I've been NED (No Evidence of Disease) since then. So please speak with your team about the possibility of a needle biopsy. In my case my tumor was rather small and even with a CT-guided CT Scan the doctor decided not to go ahead because of the small size and location of the nodule. So, after 90 days they did a rescan, saw growth and scheduled the resection. We have a very helpful section where you can find out most anything you want about LC (lung cancer) and it can be found here it has information for all stages of our journey (how tumors form, diagnosis, treatments, etc. Please look it over as knowledge is a real requirement for this disease. Arrangements can be hard. When my cancer struck I was living with my wife who had Alzheimer's Disease and she was not able to care for me. I still had two dogs and (at least for the first month) I sure couldn't drive anymore or do much for myself. In my case (through Medicare) I got a visiting nurse to help me out post-op while regained my strength. I can't say she walked the dogs, but having her help and check up on me was a step toward be being strong enough to take back my responsibilities. Think over what you believe you can and cannot do and perhaps some sort of part-time support or a visiting nurse may be right for you as well. Regarding treatment locations; it is always a good idea to find a place that has some specialty for your type of cancer. Mine occurred in a small town near Charlotte so for me, Levine Cancer Center was a good choice and it served me well. Sloan has an excellent reputation but since you're now in PA see what is there and work with your Oncologist to decide on what is right for you. considered If it does turn out that you are diagnosed with LC there are some varied sources of data I can share with you regarding surgery, recover, etc. In the meantime that is a great blog written by a long-time member who was originally diagnosed with Stage 3, then Stage 4 LC and 18 years later was considered cured. It is titled "10 Steps to Surviving Lung Cancer; from a Survivor" and it is found on this page. So please stick around, read some of the stories, look at the articles and ask questions as you have them we'll be here for you. Lou BridgetO, Tom Galli, Livin Life and 1 other 3 1 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted July 2 Share Posted July 2 Affenage, Welcome. On seeking sophisticated cancer centers, consider these points: lung cancer diagnosis is straightforward, tools and techniques are widely available at almost any hospital, and first-line treatments (first treatments after diagnosis including surgery) are standard of care (recipe-like). That said, our disease can only be diagnosed with a tissue biopsy, and one point to stress about that biopsy. Ensure your surgeon submits a sample for biomarker testing to assess the suitability of targeted therapy and immunotherapy. These new treatments are a game-changing difference in our disease. Here is a link to biomarker testing. Stay the course. Tom LouT, Livin Life, affenage and 1 other 3 1 Quote Link to comment Share on other sites More sharing options...
edivebuddy Posted July 2 Share Posted July 2 God you've gone through a lot. Sorry you're at it once again. I'd get the second opinions but do treatments locally. I'm being treated at home where I was diagnosed. I had originally planned on Moffitt or MD Anderson. But I know the doc at Moffitt and he pointed out how many times I would need to go back and forth. And even with the things we could do here it would still be a pain to myself and those helping me out. I ended up going back and forth over 150 times in the first 3 years. Infusions every 3 weeks. 2 scans ever 2 or 3 months. Biopsies, surgeries , neurology, dermatology, Ophthalmology and every other doc they send you to when something happens. Maybe see if you can get a doc at chase and get treatments locally. Still have to go to Chase every now and then but cuts down on the trip. And 2 to 5 hours each way would still suck after chemotherapy. If you don't already have it get access to the NCCN . It's free but requires registration. https://www.nccn.org/home SEER data is also available. You need to register and install their software. https://seer.cancer.gov/seerstat/started.html Getting cancer for a third time has to truly just suck. And the fact that you probably already understand the grim statistics of lung cancer may be a challenge for you mentally. But you were dillagant and caught it fairly early. I know we are not the general population so malignancy is always more likely, but it doesn't have to be. If 90% of lung lesions in the general population are benign yours has a chance too. If it is lung cancer you caught it early and sould have a great prognosis. But treatments truly have come such a long way quickly. My 2 year prognosis ZERO percent. I'm coming up on 4 in complete remission. LouT, affenage and Livin Life 2 1 Quote Link to comment Share on other sites More sharing options...
affenage Posted July 3 Author Share Posted July 3 Well, the PetScan could have been better, could have been worse. Solitary nodule suspicious for primary lung cancer with an SUV max of 5.9. Nothing else lit up, no lymph’s, no other small nodules. So if it’s NSCLC this is good news. But I am fearful it is not, it is in direct line with where I had radiation done for my breast cancer, and it grew fast (10mm in a year or less). Both of those lean towards SCLC. Also, in a lower lobe. None of that is good. Will have to wait and see. The oncologist put a note on my results saying he will call me to detail the next steps as soon as possible. I am still very thankful that I have an oncologist that is extremely responsive. My scan and report was up at 2:16 at a different medical center and he personally reviewed it by 2:20, I am incredibly lucky to have him. Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
affenage Posted July 3 Author Share Posted July 3 On 7/2/2024 at 10:39 AM, Tom Galli said: Affenage, Welcome. On seeking sophisticated cancer centers, consider these points: lung cancer diagnosis is straightforward, tools and techniques are widely available at almost any hospital, and first-line treatments (first treatments after diagnosis including surgery) are standard of care (recipe-like). That said, our disease can only be diagnosed with a tissue biopsy, and one point to stress about that biopsy. Ensure your surgeon submits a sample for biomarker testing to assess the suitability of targeted therapy and immunotherapy. These new treatments are a game-changing difference in our disease. Here is a link to biomarker testing. Stay the course. Tom Hi Tom - ironically, most of what I know (a fair amount) about LC is because my cousin named Tom was diagnosed 4 years ago with SCLC and died last year of a combo with Covid, fibrosis and Whatever else. During his illness I did read up on all the targeted therapies, although most, if not all are pretty useless for SCLC. So, my question to you since I am about 3 years out of date, have there been any new breakthroughs on SCLC? I know I caught whatever type I have early, but the statistics say early is not always good enough for SC. So I am hoping there are some newer things out there for this type (in case I have it). Thanks Quote Link to comment Share on other sites More sharing options...
edivebuddy Posted July 3 Share Posted July 3 10 mm in a year would not be anywhere near close to the most aggressive NSCLC I've seen. Would be slower than the slowest, most well behaved tumor I personally had. I watched one grow 80 mm in a few weeks and another over 170 mm in a month. I personally doubt it's small cell. Even with your former smoking status nothing but fear points towards it. I also doubt it's metastatic spread from breast cancer. The location for me would point more towards radiation induced fibrosis or a second cancer caused by radiation. Spread from breast cancer would be a huge coincidence for it to travel up and over to the lung then down to the same location as the primary. The SUV is not good and I'm certain they're going to recommend a biopsy. Get one with a Rapid on site evaluation. That way in case it is malignancy they can take it out right then. And if it's fibrosis you'll go home knowing that. Hopefully it's fibrosis or something similar. Radiation damage can happen super late even well after a decade. Good luck. LouT 1 Quote Link to comment Share on other sites More sharing options...
affenage Posted July 3 Author Share Posted July 3 1 hour ago, edivebuddy said: 10 mm in a year would not be anywhere near close to the most aggressive NSCLC I've seen. Would be slower than the slowest, most well behaved tumor I personally had. I watched one grow 80 mm in a few weeks and another over 170 mm in a month. I personally doubt it's small cell. Even with your former smoking status nothing but fear points towards it. I also doubt it's metastatic spread from breast cancer. The location for me would point more towards radiation induced fibrosis or a second cancer caused by radiation. Spread from breast cancer would be a huge coincidence for it to travel up and over to the lung then down to the same location as the primary. The SUV is not good and I'm certain they're going to recommend a biopsy. Get one with a Rapid on site evaluation. That way in case it is malignancy they can take it out right then. And if it's fibrosis you'll go home knowing that. Hopefully it's fibrosis or something similar. Radiation damage can happen super late even well after a decade. Good luck. Thank you! I hope you are right that it isn’t SC. I am pretty darn certain it isn’t metastatic from breast, that was very early, entirely contained and considered non-invasive. I did speak to oncologist and he is telling me that at this size, the likelihood is that the entire 10mm will be removed by biopsy, and depending on the cell types, I may get off easy with no further treatment. I am convinced (only because I am a stubborn opinionated person, lol) that this was a combination result of past smoking history and of radiation, since the location is just right in the exact spot. When I had my lumpectomy I questioned having radiation, and now I am second guessing myself for doing it. It only gave me a few better % chances of no reoccurrence. And honestly, breast cancer reoccurrence is less scary to me than this. As for fibrosis, I have some small scattered nodules in the same area that don’t ping on the PET, not growing and preexisting to this one, so I think that is what caused those. But this one seemed to make everyone looking at it very twitchy, leading me to believe, especially after the PET that this is the real McCoy. I am half pissed and half amused tonite. Three times a charm? Three strikes you’re out? Well, I am just hopeful to have three notches soon on my belt for having survived. I think I am going to go chew up some gummies, and get a good night’s sleep. I have a two year old Jack Russell that needs his 3 mile hike in the AM. I am told that the thoracic surgeon will call me tomorrow (July 4th?) to make my appt for my biopsy, but I won’t be disappointed if they call on Friday instead. Thanks again, you have been more than kind Quote Link to comment Share on other sites More sharing options...
Livin Life Posted July 4 Share Posted July 4 Just want to send support, affenage! Interesting on the fibrosis. 4 of the ground glass nodules they've been following just were deemed atelectasis. I have Sjogren's and this will likely be deemed Sjogren's lung disease. Report said contraction atelectasis/scarring. They are still following three other nodules, one of which they've been concerned about since the get-go. Wishing you well with process moving forward. I'm still waiting to hear on next step... may be a few weeks.... LouT 1 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted July 4 Share Posted July 4 Affenage, Only a tissue biopsy can confirm the type of LC. Growth over time is not a deciding factor. Mine grew from nothing visible on an x-ray to a tumor 4.5 x .75 inches in a month and my type is nonsmall cell Squamous cell lung cancer. Yes, there are new and effective therapies for SC that involve immunotherapy and sometimes immunotherapy in combination with conventional chemotherapy. In May I attended LUNGevity's annual summit, a gathering of lung cancer survivors to celebrate life and learn about the disease. Many SC survivors were there. There was a panel of SC survivors, diagnosed at both limited and extensive stages, who spoke about the new therapies. Contact Kristi Griffith here: kgriffith@lungevity.org. She is LUNGevitiy's nurse navigator and is very well connected with the treatment community and survivors. She can offer insight into the diagnosis process, treatments, and connections with survivors. Stay the course. Tom LouT and Livin Life 2 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted July 6 Share Posted July 6 Affenage, I'm glad you found us. Radiation was the thing that disintegrated my lung tumor, so while I understand your concerns and have fleeting worries about radiation myself, I also know it helps so many LC people in different ways. It's generally good to consult with a lung cancer specialist because lung cancer is so complex. I know folks from communities with only general oncology services will do a consult with a lung cancer person, who can devise a treatment plan that can be delivered at the cancer center closer to home. The diagnostic process can take a while with LC. Lungevity has some good basic info about the process from early diagnosis on. That may help you in deciding on where to seek initial diagnosis. I wish you luck, and patience. I don't know what the diagnostic process is for anything besides lung cancer, and I found waiting for the definitive diagnosis so difficult. In terms of support during treatment, I have had help with a recent family medical emergency with Care.com. Locally here there is also something called Home Instead. Maybe researching options for in-home care near you would help ease that worry. LouT and Livin Life 2 Quote Link to comment Share on other sites More sharing options...
Shay Posted July 9 Share Posted July 9 Hello Everyone May I get some advice. Has anyone struggled with radiation poisoning or sickness? I've had about 15 CT's in 4 years and I believe my body is now reacting negatively to all of the radiation. Thank you Quote Link to comment Share on other sites More sharing options...
Livin Life Posted July 13 Share Posted July 13 I know people can develop neuropathy with radiation treatment. I've not heard of (one way or the other) about issues from radiation via testing. What kinds of symptoms are you having, Shay? Have you mentioned these to any of your docs? If so, what have they said? LouT 1 Quote Link to comment Share on other sites More sharing options...
LouT Posted July 14 Share Posted July 14 Shay, I’m not sure how to answer your question. After a bout of colon cancer (2010), and surgery, my doctors elected not to do adjuvant chemo so every three months I went for scans and a host of other tests. That went on for 3 years and then the frequency was reduced to every six months, and then a year later reduced to annually. I’m now on a check every three years. So, I was a bit short of your 15 after 4 years (14 actually) but I don’t recall feeling any ill effects. I did ask once if all of these scans might not be dangerous and was told that they were low-dose CT (which is what I get annually for my LC checks) and that they would not be likely to cause any side effects. In my case that was true. Livin’ life has some good advice, please speak with your medical team, explain any symptoms, then have them check you out. Lou Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
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