Curt Posted January 8, 2019 Share Posted January 8, 2019 After a year of following an 8mm, spiculated nodule in my upper right lobe with no changes in physical appearance my doctor recommended a wedge lobectomy which will be tested at the time of the procedure. If it’s malignant they will do a full lobectomy at the same time. I got a second opinion with the same recommendation. Given my familial history of lung cancer I’ve decided to go ahead with it. It is scheduled for February 26th. I’m feeling a bit of relief that I’ll finally know. I’m also really nervous about being put under not knowing if I’ll wake up cancer free or with a cancer diagnosis and missing a large part of my lung. Not knowing how to plan for the recovery is difficult for me. Will I be back to work in a couple of weeks? A month? I won’t know until I wake up. I’m ok with either procedure (I’d obviously prefer the wedge and no cancer) but I’m having a lot of trouble getting my head around going in not knowing for sure what is going to happen and having to confront it when I wake up. I’m an optimist at heart, so planning for the worste while hoping for the best is tough. On a somewhat lighter note I scheduled the surgery with Memorial Sloan Kettering in NYC. When I went to sign up for their patient portal/app I was able to get the username “fcancer”. It just sort of came out as I was typing. I was shocked that fcancer was still available at one of the largest cancer hospitals in the world. It provided a bit of levity in an otherwise stressful day. Link to comment Share on other sites More sharing options...
Tom Galli Posted January 8, 2019 Share Posted January 8, 2019 Curt, I also longed for certainty with my uncertain disease. I am also plagued by engineer’s disease and we hate uncertainty. I’ve been in this spin cycle for nearly 15 years. I still dread scans; then hate waiting for results. My only comfort results from prayer. Planning for the worst is a good approach for two reasons: you’ll be ready for worst case and you’ll be delighted if results are better than worst case. Make a recovery checklist and prepare. Stay the course. Tom Link to comment Share on other sites More sharing options...
LexieCat Posted January 8, 2019 Share Posted January 8, 2019 Hi, Curt, I'm pretty sure that you'll feel, physically, pretty much the same whether you have a lobectomy or just the wedge resection. I had a lobectomy and noticed no real effect on my breathing once I'd healed from the surgery (4 weeks or so). I coughed a lot right after--which is good, because it clears your lungs--but as long as you do the breathing exercises, my bet is that you will bounce back quickly. I'm assuming your surgery will be VATS (laparoscopic)? Link to comment Share on other sites More sharing options...
Lisa L Posted January 22, 2019 Share Posted January 22, 2019 Curt I have been thinking about you..I know you are scared I am also scared and you are probably not getting on here trying not to think about all this until your surgery which I understand totally. If you need a sounding board I am here, I haven’t even got a diagnosis or seen my pulmonologist until feb 13 but yet I feel we are in the same boat so I am, just know I am listening my friend. Love and Light ❤️ Link to comment Share on other sites More sharing options...
Curt Posted January 26, 2019 Author Share Posted January 26, 2019 Hi Lisa. Thank you for the light and thoughts. I have been keeping myself distracted until the biopsy at the end of the month. I had a trip to New Orleans this last week for work and a vacation to Mexico in a few weeks. The distraction is good. I am looking forward to getting this either over with or knowing what the next steps are. I appreciate your thinking about me. The support on this site is amazing. Link to comment Share on other sites More sharing options...
Curt Posted January 26, 2019 Author Share Posted January 26, 2019 Hi Lexi. Yes it is going to be VATS. The doctor tells me the biopsy or the lobectomy are the same procedure. The only difference is how much of the lung is removed, a small nodule or an entire lobe. That actually created a lot of confusion for me with the first doctor. She didn’t do a very good job describing that and I left thinking the only option was the full lobectomy, not the smaller wedge resection. The second option cleared that up. I followed up with the first doctor and it turns out that was also her plan, it just wasn’t as clearly explained. Link to comment Share on other sites More sharing options...
Tom Galli Posted January 26, 2019 Share Posted January 26, 2019 Curt, Sorry about the surgical communication gap. I was lucky, my surgeons completely explained everything but I know people who get very little explanation. I also know lung cancer survivors who wanted very little explanation. Lung surgery is difficult to explain. Often surgeons only get a "pencil thin" view of the problem before and the situation vastly changes during surgery. Sometimes there is too much uncertainty. Your surgical condition typifies the uncertainty. Then there are the vocabulary challenge, the medical abbreviations used in surgery speak, and even concern about potential litigation that hinders communication. It is complicated but you have an approach and I do hope your VATS solves the problem. Nothing yields a better path to NED in our disease than surgery. Stay the course. Tom Link to comment Share on other sites More sharing options...
LexieCat Posted January 26, 2019 Share Posted January 26, 2019 Yeah, that was the plan with my surgery, too. Because there was no biopsy, they did the wedge resection first. I found out afterward that the resection did not show cancer, but my surgeon was sure enough that it was, that he proceeded with the lobectomy anyway. (It also turned out that the wedge resection did not get ALL of the nodule). Anyway, glad he did, because the pathological exam of the tissue removed in the lobectomy showed that it WAS cancer, and that it was "deep," with possible pleural invasion (according to the pathologist--my surgeon didn't think there was any pleural involvement). Actually, though, even if it had turned out not to be cancer, I would not have been upset. I feel just fine and don't miss the missing lobe at all. Link to comment Share on other sites More sharing options...
Lisa L Posted January 26, 2019 Share Posted January 26, 2019 Hi Curt, glad you are staying busy and going on a vaca sounds like a really good distraction. I was just wondering do you have any symptoms? After the nurse from the first pulmonologist called and said because nothing glowed they would see me in April I got a referral to another pulmonologist who still couldn’t get me in until feb 13 and now I am having back pain and chest pain all on the left side but I have no cough or wheezing. It will be 2 months since discovering the nodule by the time I see a pulmonologist. Link to comment Share on other sites More sharing options...
LexieCat Posted January 26, 2019 Share Posted January 26, 2019 Lisa, even cancerous nodules of the size yours is do not grow fast enough to cause back or chest pain after this amount of time. I'm not suggesting you don't have pain, just that the likelihood that it's attributable to the nodule, or to lung cancer, is extraordinarily remote. A week or so before my surgery I started feeling like it was hard to breathe. What I eventually realized, though, was that I was so conscious of my breathing I was taking each one deliberately, rather than breathing normally. It's really easy to focus so much on something we're worried about that we forget how many other things can cause the same symptoms. Hang in there--I hope your visit to the pulmonologist puts your mind at ease. It will be here soon. Link to comment Share on other sites More sharing options...
Lisa L Posted January 26, 2019 Share Posted January 26, 2019 Thanks Terry, sometimes I kinda feel embarrassed asking questions like this because I think am I over thinking my symptoms, so it does help getting your feedback. Link to comment Share on other sites More sharing options...
Curt Posted February 4, 2019 Author Share Posted February 4, 2019 Lisa I have been feeling pains on my rights side but as Lexi said it is highly unlikely it is a results of the nodules. Stress and tension can have amazingly negative affects on your body. I’m chalking it up to that. As my very wise father said, “at a certain point in life if I wake up without any discomfort I’ll start to worry”. Link to comment Share on other sites More sharing options...
Lisa L Posted February 4, 2019 Share Posted February 4, 2019 Curt I’m glad you will be getting answers in a few weeks and I’m sure it will be fine. Like I said I finally see the pulmonologist on the 13th and I’m sure he will have me wait another month for the ct scan. Hope you enjoy your trip to Mexico, after I find out what doc says I’m going to Hawaii for 12 days. Keep us posted. lisa Link to comment Share on other sites More sharing options...
Rower Michelle Posted February 20, 2019 Share Posted February 20, 2019 Hi Curt Just checking in to see how things are going in advance of the surgery next week? I’m thinking about you! Michelle Link to comment Share on other sites More sharing options...
Curt Posted February 20, 2019 Author Share Posted February 20, 2019 Thank you for checking in Michelle. I’m on a family vacation this week so that’s a nice distraction. I’m ready to get the surgery over with and confront what’s next. Link to comment Share on other sites More sharing options...
Lisa L Posted February 26, 2019 Share Posted February 26, 2019 Curt, sending you a prayer and hug for tomorrow, please let us know how you are doing. Love and light ❤️ Link to comment Share on other sites More sharing options...
Rower Michelle Posted February 26, 2019 Share Posted February 26, 2019 Prayers for you Curt! Hoping all goes as planned. Michelle Link to comment Share on other sites More sharing options...
Curt Posted February 26, 2019 Author Share Posted February 26, 2019 Thank you for checking in. It’s at 2:30 tomorrow. I’m nervous as hell but ready to get it over with. I’ll post an update when I can. Link to comment Share on other sites More sharing options...
LisaA Posted February 26, 2019 Share Posted February 26, 2019 Curt, prayers for tomorrow for a great outcome and fast healing to begin. Link to comment Share on other sites More sharing options...
Curt Posted February 28, 2019 Author Share Posted February 28, 2019 I had the surgery on Tuesday and the initial results are Stage 1 NSCLC adenocarcinoma. They went ahead with the full upper right lobectomy and removed the surrounding lymph nodes. Initial indications are that the cancer did not spread beyond the 1 CM primary tumor and will not require any additional treatment, just periodic scans. I will get more definitive results next week when the pathology report comes back. They are also doing genetic testing that will take a bit longer and give more specific information on the characteristics of my tumor. The surgery was was not awful. They have gotten so good at managing pain. I still have my chest tube in. They clamped it off yesterday and have been doing XRays. There is a bit of an air pocket that they would like to see either not get bigger or go away before removing the tube. They are going to do anothEr XRay this afternoon. There is a chance that I can go home tonight, or tomorrow at the latest. I can’t say I’m shocked, but I’m surprised. I was really holding out hope that it was nothing. I’m struggling with who to tell and how to tell them. What do I tell my kids? They are 6, 8 amd 10 year old boys. What about my employees, friends, etc? I don’t even know how to or if yo broach the topic with some of them. Link to comment Share on other sites More sharing options...
Shelkay1 Posted February 28, 2019 Share Posted February 28, 2019 "You have cancer" is never something we ever want to hear; but yours sounds like it was caught early. Hopefully you won't need chemo or radiation. Telling people, especially your children that you have cancer can be a challenge. Our children are all adults (6 daughters); since they don't all live in the area, I told them via a text message. I was up front and open with everyone at work about my diagnosis. Since I work in a retirement community where everyone talks, I'd rather them to know the truth rather than someone's mixed up version. In addition, they I now have them as prayer warriors. Link to comment Share on other sites More sharing options...
Rower Michelle Posted February 28, 2019 Share Posted February 28, 2019 Hi Curt, I’m so sorry to hear about your diagnosis. I’ve been following your posts and hoping this was nothing too. I’m glad the surgery went well & very relieved this got caught at Stage I. I had the same dilemma about how to communicate my diagnosis to my family, friends & employees too. Initially I wanted to keep this news to a small circle of friends & family. I got some advice from my Dad’s nurse to head in the opposite direction. She said support comes from the people you least expect it. I worked in a small field with a big gossip chain so it wasn’t going to be possible to keep my professional life out of this. For me, Dad’s nurse was spot on. I reversed course & told everybody over the course of a few weeks. As a former sales executive, I developed my own version of “the elevator pitch” short & simple. The first few discussions were really hard for me however I somehow found the strength that I didn’t know I had. It somehow got “easier” as I moved down the list. Trust your instincts & focus on your recovery as a top priority. My thoughts and prayers are with you. Michelle Link to comment Share on other sites More sharing options...
PaulaC Posted February 28, 2019 Share Posted February 28, 2019 Good morning Curt, I’m sorry to here about your diagnosis but relieved they caught it early. I think what Michelle said about getting it out is a simpler way then I did it. I had just retired but thankfully my husband was still working. He personally wanted to keep it quiet and just our immediate family. I have to say it’s not the easiest or best way to do it because you need support from all directions. Also, I think some that found out about it later were hurt because they felt I kept it from them. I think you’ll do what you need to do and it’ll be the right thing. Take care and try not to worry about it. Link to comment Share on other sites More sharing options...
Tom Galli Posted February 28, 2019 Share Posted February 28, 2019 Curt, Good news on your surgery. I do hope you recover and get discharged quickly. Unfortunately, chest tubes are not uncommon in either a VATs or conventional thoracotomy. They are however a minor inconvenience. I remember my first removal. My surgeon "short counted me". "On three", and pulled it at the count of two! I think your routine of continuing scans and followups, likely for at least the next 10 years will be hard to hide. I told friends and family of my condition and that turned out to be the best decision for me. Get better and stay the course. Tom Link to comment Share on other sites More sharing options...
Laurel Posted February 28, 2019 Share Posted February 28, 2019 I'm sorry about your cancer diagnosis but Stage 1 and no lymph nodes involved is nice. I went into VATS last February as stage 1. After surgery, we were celebrating they got all the cancer. 10 days later, I was told stage 3 due to increase in size and lymph nodes involved. I went through chemo and radiation. I shared with everyone. I wanted the support. I would be surprised that your young ones don't realize something about your illness. They don't need all details, but answering their questions might be of help. Link to comment Share on other sites More sharing options...
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