Susan Cornett

Good morning, Sherie! I started this adventure with a trip to the ER after coughing up blood. The ER sent my pulmonologist the CT and performed the bronchoscopy. Unfortunately, my first CT was one without contrast - I'm a very hard stick and the ER gave up after 6 attempts - but I'm guessing it would have been better with contrast and might have highlighted those pesky lymph nodes. My biggest question has been how the bronchoscopy missed cancer cells, but at this point, I have to let that go. The pulmonolgist performed several tests on the tissue sample to find out what it was and when those results were inconclusive, he referred me to the thoracic surgeon and the surgeon is the one who recommended the lobectomy due to the size of the mass. The mass made it difficult to breathe and I had started to have successive upper respiratory infections. As I understand it, the team did not know that the mass had spread to my lymph nodes and they didn't know it was cancer until surgery. I didn't fit the "norm" for a lung cancer patient (another reason why we need to throw out the stereotype). The fun part at this stage is wondering if every new pain/twitch/difference is the return of cancer. I don't want to be a hypochondriac but I don't want to ignore anything. In fact, I went to see oncologist this week because I was having pain in my central chest/sternum area, very near where the tumor was and my first thought was bone mets. But, as it turns out, my nerves are still regenerating from the February surgery and as I regain feeling in my left chest, I'm now able to feel the pain that has been there all along. It's an interesting ride, but I'm damn sure gonna make this ride last as long as I possibly can!

Fantastic news, Sherie!

Good morning. Yes, I am currently NED! I had a scan at the end of August and will do another scan in November. For better or worse, I had the surgery first and that is how I was diagnosed. My cancer had spread to 7 of 10 lymph nodes but the surgeon was able to get clear margins. We subsequently found that it had spread to my thyroid (prior to chemo) which is incredibly rare. I think my fabulous oncologist doesn't know what to think because I'm skewing stats and my cancer isn't following the "norm". I'm fortunate to have a great oncologist who has also done research on lung cancer. Don't even get him started on the "pretty cancers" that get all of the attention and a disproportionate amount of funding. Just know that we are all here to be a sounding board, share experiences or otherwise assist you. Had I not read Tom Galli's story and his book, I wouldn't have the outlook I have today. Keep the faith.

Good morning. I'm sorry that your mother is going through this (and you as well) but glad you found this site. It has been a lifeline for me and where I find the most hope. I had a mass in my upper left lung and had a lobectomy in February of this year. At that time, I was diagnosed as Stage IIIa adenocarcinoma. Within four weeks of surgery, I started the cisplatin/pemetrexed chemo and had four rounds of it. The chemo affects everyone differently but my side effects were manageable. I had nausea, neuropathy and fatigue. I also developed ringing in the ears and I find that to be the most troubling effect that just won't go away. I did not lose my hair (a frequent concern of cancer patients). I will you keep you all in my prayers as your mom starts down this path. Keep us posted on her progress.

Hi Liz. I had an upper left lobectomy in February of this year. I was told that it would take up to a year to fully recover from the surgery. I still have a bit of a pulling sensation on my left shoulder blade, but the bruised filing under my left arm and on my left shoulder blade has finally subsided. The numbness I experienced is also finally coming to an end. Be patient with the recovery process but definitely ask your surgeon about anything that doesn't feel right. Good luck to you and keep us posted.

Great analogy! I'm swinging for the fences every day....

Hi, Mary. As odd as this sounds, congratulations on your cancer being found early. So many of us diagnosed with lung caner are diagnosed in the later stages and it makes the battle that much more challenging. I also had adenocarcinoma; it was in my upper left lung and I underwent a lobectomy in February of this year. I wish I would have been a candidate for the minimally invasive procedure - recovery would have been so much easier! I followed surgery with four rounds of chemo and I'm currently NED (no evidence of disease). There are quite a few people on here who have walked in your shoes and I've found everyone to be incredibly nice and helpful. Good luck to you and keep us posted on your progress.

This book is a must read!! I finished "Scanziety: A Retrospection of a Lung Cancer Survivor" over the weekend. I highly recommend this book for patients, caregivers and friends of patients. I don't think that most people understand what our bodies go through during treatment, and Tom certainly had a tough time. I think the book also helps people understand that, while cancer patients do have a cloud of uncertainty that will follow us the rest of our days, we should live each of those days to the fullest. I enjoyed this book and I enjoy Tom's comments and support in this forum. His success story gave me hope when I had mentally started to give in to the dark place. Thank you, Tom.

Hi, Martin. I was diagnosed with Stage III adenocarcinoma in February after a lobectomy to remove a significant mass. Additional scans prior to chemo found mets in my thyroid and I was reclassified as Stage IV. I had four rounds of chemo (cisplatin, pemetrexed) and tolerated the side effects fairly well. For better or worse, my adeno cells did not have any genetic markers that would make me a candidate for targeted therapy. Apparenly I had plain old cancer cells. That said, it's my understanding that the targeted therapy, if you are a candidate, is successful for many people. I wish you luck on this journey.

Tom, I'm so sorry you won't be at the DFW event but think that your other plans are much more exciting. Congratulations on your first grandchild. By the way, I started your book yesterday and it is wonderful. Thank you for writing it.

Good morning! I am always lifted by the good news and positive outcomes on this site so I'm here to share mine. Last week's pet scan is clear. We reset the clock and do this all again in 90 days. Tom - I wanted to clarify my comment about my staging. Oncologist didn't change my staging because he later found mets; they didn't know it was there at the initial staging. I was diagnosed after surgery as IIIa, before the team knew about the metastisis to my thyroid. Had they known about that, they would have staged my cancer as IV. So, for statistical purposes, oncologist considers me a IV. He told me yesterday, though, that there weren't really any statistics to evaluate my case because it was unusual - mets to the thyroid is so rare and it was a distant mets site and tumors were removed at both the primary and mets sites. He said my 5 year number is 30 to 40%. I laughed and told him his numbers mean nothing to me - and he agrees - because I've already skewed the stats with the thyroid issue. I'm looking forward to walking in the Breathe Deep DFW event and have hopefully inspired my family and friends to dip into their wallets.

Hi, Mike. I started my journey with the pulmonologist. I had a nagging cough and, as an asthma patient, already had a pulmonologist. I had been to the ER, though, and had a CT that showed my mass. He referred me to a wonderful surgeon who in turn referred me to an even better oncologist following my surgery. Here's hoping that it is anything but lung cancer.

As usual, your post is enlightening for me. I'm flying next month for the first time since my lobectomy and wondered about cabin pressure. I usually drive to this particular destination but due to lingering fatigue (lovingly referred to as my chemo hangover), my docs thought it best that I not make the long drive. That said, I'll be prepared for the flight after reading your post. Three of my physicians have said that it can take a full year to recover from a lobectomy, but I'll take that discomfort over the alternative every day. Thank you, Tom, for being a light in this otherwise dark tunnel.

Hi, Lisa. I was diagnosed with the same cancer in my upper left lung (also at age 46) in February of this year. Following surgery, I had four rounds of cisplatin/alimta. The side effects, for me, were tolerable. My oncologist managed my nausea by piggybacking two different anti-nausea meds and an anti-reflux med. I had my treatments on Fridays and found that Mondays were my worst days. The lasting side effects for me are ringing in the ears, some fatigue and a little neuropathy in my hands and feet. I hope this helps. Please keep us posted on your progress.

Hi RicKoehn. I understand your concerns with keeping the books; I also have a time sensitive job. But as someone who was very concerned about missing work, let me be the first to tell you that work should move down your list of priorities. There is a lot to process and understand with a cancer diagnosis and it can be an overwhelming amount of information and emotions. I had a lobectomy in February and was in the hospital for 6 days and off work for 4 weeks, but if you are Stage 1, I'm guessing your procedure would be less invasive. That said, I agree with Katie and Tom that your personal recovery will be based on your current health and smooth sailing (we hope!) after surgery.

By nature, I'm an anxious person so I often just clear my mind by writing or speaking all of those random, whirly thoughts going through my mind. I've posted a couple of times before and some circumstances have changed. So here's my story that I just have to get out of my head: I had an unidentified mass in my upper left lobe and a bronchoscopy indicated it wasn't cancer. Pulmonologist recommended surgery so in February of this year, the left upper lobe was removed and I was diagnosed with Stage IIIa adenocarcinoma. Seven of ten lymph nodes were affected. I had an MRI and CT of chest, abdomen and pelvis before I started chemo and the only thing noted was a nodule on my thyroid. I completed four rounds of Cisplatin/Alimta and side effects were/are manageable. I had my first post-chemo CT on July 1st and it showed no new areas of concern, since we already knew about they thyroid. After chemo, I went to see an ENT about my thyroid. Biopsy results were inconclusive so surgery was scheduled. I had a thyroidectomy two weeks ago and last week received my results. I had papillary carcinoma and metastatic lung cancer in my thyroid. I blew the oncologist's statistics out of the water. Less than 5% of thyroid nodules are cancerous and both of mine were. It is very rare for lung cancer to go the thyroid (ENT has seen it 3 times in 40+ years, oncologist has seen it twice in 20+ years) but numbers mean nothing. Fortunately there was no lymph node involvement but it does change my staging to Stage IV since those sneaky cancer cells left the lung. When my oncologist told me that the lung cancer staging changed from three to four, I panicked. My brain immediately went to the darkest of places. I couldn't stop crying. I'm an only child and my husband and I don't have kids, so my first thought was him and then my parents. What would happen to my parents? But then clarity stepped in. He was changing a number, not changing my attitude or my desire to fight this disease with all of my might or the progress I've made thus far. I remind myself that the July CT was good and the nodule was the only issue noted when my baseline scans were done prior to chemo. I have a pet scan in two weeks. I'm praying that the chemo did its job and killed the rest of those cancer cells and that this scan is also good. I come to this site every couple of days to see if I can contribute and to read stories of people diagnosed with late stage NSCLC who are still alive, still fighting, still living. Those stories give me hope and renew my energy to fight with everything I have.

I'd like to suggest a couple of additional ideas. Most states have a program to guide Medicare-eligible individuals and provide counseling. I would suggest contacting this group in Alabama. They can give give you information regarding Medicare Part D drug plans in your state. Alabama Dept. Of Senior Services (For Insurance Counseling, Legal Assistance, Nutrition Sites, Other SHIP Activities)www.adss.alabama.gov Phone(877)425-2243Write770 Washington Ave RSA Plaza Ste. 570P.O. Box 301851Montgomery, AL 36130 It also looks like there are 3 companies currently providing Part D plans- here is a link to the DOI's web page with additional links for Medicare information: http://www.aldoi.gov/Consumers/SeniorHealthInsurance.aspx Hope this helps.

Thanks, Katie. I was a little surprised it was thyroid cancer. First, we don't have a good thyroid anywhere in the family so I was hopeful it was just a nodule and second, less than 5% of nodules are cancerous. Both my oncologist and my ENT said it was extremely rare for the AC cells to be in the thyroid, so I'm hitting that statistical sample as well. I may need to buy some lotto tickets given those odds. The actual surgery wasn't bad - had it last Wednesday and was back at work yesterday. Other than an allergic reaction to the tape and glue, I feel good. I'll go tomorrow to discuss radioactive iodine therapy and then will meet with oncologist to see if he wants to add anything to the treatments. One day at a time.

So it turns out the thyroid, much like my lung, has betrayed me! I had a total thyroidectomy last week and got those biopsy results yesterday. One side of my thyroid had papillary carcinoma which is quite common but the other side of the thyroid had a nodule made up of the adenocarcinoma cells that were in my lung. Those AC cells do not play nice. The surgeon feels that they were able to get all of it and there was NO lymph node involvement so that is very good news. We discuss treatment options tomorrow. I'm not going to lie - I'm tired and scared - but I am gearing up for another fight. Thank you all for reading my posts and responding. I have an incredible support system of family and friends, but you all know the fear because you've lived it. Bless you!

I agree with all of those statements. Another to add: Do you/did you smoke? I am continually surprised as I travel this path at the number of medical professionals (radiation techs, nurses, etc.) who ask this. The answer to both is no, but it really doesn't matter at this point, does it? What I would love is a way to make more physicians realize that they should be considering lung cancer as a possibility for more patients, not just those who fit the "typical" demographics for diagnosis. Had my prior pulmonologist asked for an x-ray when (what we thought was) my asthma took a turn, he would have likely found my cancer. But as a 45 year old non-smoker with a history of asthma, cancer apparently didn't cross his mind. We have a long way to go to get this disease the attention it needs in order for more people to survive. That's my soap box rant for today!

Got my CT results - and a high five from my oncologist - yesterday. There are "no areas of concern" in my first post-chemo CT. He'll scan me every 3-4 months for the next two years and then a little less frequently after that. I still have the small issue with my thyroid to deal with but both the ENT and the oncologist said it is highly unlikely that, if it is cancer, that it is metastatic lung cancer. Reading all of the survivor stories on this site have really buoyed my spirits. Thank you for your kind words and support!

Thank you LaurenH and Tom for your replies. In the midst of waiting for my first CT, I got to have a bonus biopsy on my thyroid (get those results tomorrow). I'm trying to stay focused on how far I've come and how many incredible survivor stories I read. I'm awestruck by the sheer number of people who have been victorious over lung cancer, especially the Stage IV folks. Tom, I hope you enjoyed a wonderful vacation. LaurenH - I've been enjoying our new swimming pool as a way to relax.

I finished my chemo last Friday and got to ring the bell! But now the hardest part starts for me - waiting for the first post-treatment CT scheduled for July 1st. I'm an anxious person on a good day, so I would love to hear how any of you survive the period between scans. My wonderful oncologist said that if the CT is clear, I won't have to have another one for 6 months.

Earlier this year, NBC News had a story that MD Anderson Cancer Center is researching a possible link between a high glycemic index diet and lung cancer, but it was in the very early stages of testing in lab animals. I haven't heard anything further on this, nor have I had a chance to do any further research.

Karen, I've had a good experience with cisplatin and alimta, but that's not to say I haven't had some side effects. My fabulous oncologist has kept my nausea under control with a combination of meds. The most aggravating side effect thus far has been ringing in my ears. I've also had some neuropathy. My fourth and final treatment is Friday and I'm guessing the side effects will be a little worse the next couple of weeks. Fatigue has been an issue, too, but I've quickly discovered that laundry can wait for a day or two until I feel good enough to deal with it. My advice to you is this: keep your provider in the loop on your side effects. Chemo side effects can be managed so much better than in the past. Good luck to you and I'll keep you in my thoughts.