ColleenRae Posted March 4, 2019 Share Posted March 4, 2019 Hello all... I was scheduled to have my first post-op CT in Seattle this week but weather forecast is calling for snow (again) and I did not want to postpone the CT any longer (I had to cancel the first week of Feb due to weather as well... We don't get snow often here, but we just don't have the means to deal with it when it hits!) So.... I asked my surgeon's office for a local referral for the CT. He said fine and that we'd talk about the results later. I had the CT last Wednesday, 2/27. I tried calling him last Friday and left a message. I called again today and was told he's on vacation through this Wednesday. I did not want to wait anymore - my anxiety has been quite high. So I went to the imaging center with my son to pick up a copy of the radiology report. We opened it in the car... "Impression: Slowly enlarging nodule in the apex of the left upper lobe measures 5 mm and is predominant groundglass density. The persistence and slow growth is suspicious for another low-grade malignancy. The nodule is too small to biopsy and would be too small to expect increased PET activity. (Review of the recent PET CT 8/24/2018 with no activity in this area). Medical surveillance (6-12 month follow-up) versus surgical resection are both reasonable management options". Obviously, not the news I was hoping for. I'm terribly sad over this. In fact, pretty upset. I feel like every bit of energy I had inside of me just exited my body. I'm not sure when I'll see my surgeon now... and I just sent a note to my local pulmonologist to see if I can get in to see him sooner than the May appt. they've given me. I just had to get here on this site to share this news as I will welcome any thoughts / advice others might have as to what to pursue next. I know I had multiple nodules but this report does not mention anything about any of the other nodules... I really want / need to speak with someone who will tell me how many nodules we're looking at now. Obviously this one is standing out, but they did not mention this before the lobectomy. I feel like I'm probably full of nodules that are slowly growing and cancerous... so why should I subject myself to any treatments or additional surgery if one is just going to keep popping up to be a concern after another??? I really feel like I've lost all my will and excitement for life right now. It really sucks. Sorry to be such a downer. I just want to go curl up and cry but my son is gently urging me to go for a walk with him outside - it's cold but sunny. Maybe that will help. I just feel pretty hopeless right now. I've already lost my right upper lobe; are they going to have to remove the entire upper left lobe now? Can they? Will I even be able to breathe? I see a life ahead with an oxygen tank and I just don't think I can live that way... I've always been so active - except since the lobectomy. This has been hard and I think it's only going to get harder. I hate this. I feel like I'm in a really bad dream that I can't wake up from. Yes, I'm whining! Just bear with me! Link to comment Share on other sites More sharing options...
PaulaC Posted March 4, 2019 Share Posted March 4, 2019 Girl you have every right to whine. I don’t have answers but I know someone can help you with this. I really hope you see your doctor soon so he can help you understand the results and get a treatment an started. Take Care Paula Link to comment Share on other sites More sharing options...
Robert Macaulay Posted March 5, 2019 Share Posted March 5, 2019 Colleen You just got hit with Cancer curve ball it happens to us all.My thoughts are when you see the doc you might be in for some clean up chemo with some immunotherapy. Bob Link to comment Share on other sites More sharing options...
LexieCat Posted March 5, 2019 Share Posted March 5, 2019 Hi, Colleen, I'm sorry for your result--I can imagine how discouraging that is. All I can say is to try not to get ahead of yourself. You're already visualizing all these disastrous outcomes. It may be that this nodule can be zapped with precision radiation. It could be that you will have a few rounds of chemo. Plenty of people here have had one or more recurrences before they were NED for long periods of time. So the fact that you have another nodule that is potentially cancerous does not by any means indicate that you are never going to be free of this disease. See what your surgeon has to say about it. You can always get a second opinion, too. No matter what, you have the advantage of knowing it's there and keeping a close eye on it. Hang in there--sending a hug. Link to comment Share on other sites More sharing options...
Shelkay1 Posted March 5, 2019 Share Posted March 5, 2019 Colleen, It sounds like you and I are in the same boat except one of mine was big enough to biopsy & it is adinocarcinoma. They sent it off for biomarker testing & just told me today the sample was not big enough to test. Apparently they kept a hunk of the original tumor from the lobectomy & have sent it to try again. Biopsy was on 1/30; I'm told it will be at least another 2 weeks till I know anything. I think this waiting is as bad as knowing what is happening. Link to comment Share on other sites More sharing options...
Rower Michelle Posted March 5, 2019 Share Posted March 5, 2019 Hi Colleen, I’m so sorry to hear about your news. We’re all in this sucky boat 🚣♂️ together. While it’s not what any of us were hoping for you- as Teri says- there’s lots of options ahead for you. That’s something to hope for. In the interim we will become your prayer warriors. Hugs to you. Michelle Link to comment Share on other sites More sharing options...
Curt Posted March 5, 2019 Share Posted March 5, 2019 I’m sorry to hear about the results Colleen. Those aren’t the results any of us want to hear but there are options and next steps. One foot in front of the next. I hope you went for that walk with your son. He sounds AMAZING! Link to comment Share on other sites More sharing options...
BridgetO Posted March 5, 2019 Share Posted March 5, 2019 Hi Colleen! Not the result you wanted, bfor sure. But, as Lexie Cat says, there are a lot of options. See what your doctors have to say and don't get ahead of yourself. Take it one day at time. Enjoy your life and your son's good company. Yep, cancer sucks, but your life doesn't have to, it can still be good. Hang in there! Bridget Link to comment Share on other sites More sharing options...
Lisa L Posted March 5, 2019 Share Posted March 5, 2019 Oh girl I’m sorry and I know you have reached out to me before and you did have some anxiety about your recent scan but as Terry and many others have said try and not freak out until you talk to your dr. Because I’m sure they probably have many options for you..When I finally met with my pulmonologist he said I had a 1mm nodule also which is first I heard .ofcourse you can whine ..we are all here and listening..hugs to you ..please be strong ❤️ Link to comment Share on other sites More sharing options...
Tom Galli Posted March 5, 2019 Share Posted March 5, 2019 Colleen, Yes there are many future treatment options on the table but, quite simply, this recurrence just sucks! It is typical of lung cancer and that sucks also! On reviewing the radiologist's impression, you are likely in for a watch and wait period and that just plain sucks squared! I wish it wasn't so but you've got to put on your battle rattle, lock and load, and proceed again to destroy the beast. I know you can do it. Stay the course. Tom Link to comment Share on other sites More sharing options...
ColleenRae Posted March 5, 2019 Author Share Posted March 5, 2019 Thank you - to each and every one of you - for taking the time to write your caring notes with encouraging words. I am grateful I can whine here! I'm grateful for the kindness, the prayers, the positivity. Thanks, also, for those reminding me not to completely give up and throw in the towel at this point... I appreciate what you are saying and hope I can work myself into that mindset. I'm pretty miserable right now. Rough sleep and having a very difficult time controlling the tears. It's such a wave of emotions. Tom - I really hope I can become the warrior I'll need to be! Terri - Thank you for reminding me to have hope and not think the worse (that will be a struggle for me!). I know there are options - I just hope I have the strength to choose them and can follow through on those options if they don't require a lot of support from others. I'm really fatigued - it's not just the cancer. Bridget - I need to find my joy in life and to not let cancer take that (or at least any more of it) away from me... Shelkay - We're certainly hitting this trail right behind each other, aren't we? I'm sorry you're getting similar news but have always / continue to admire your positive outlook. Thank you... it helps! Darn. I was hoping if my CT results were good that I might try to attend the conference. That was going to be my treat. I don't think I'd better now but sure wish I could have met a lot of you! I've rescheduled to meet with the surgeon next week, March 14th. Just hope to arm myself with my questions, research, etc. before I see him. I think my biggest problem right now is addressing what my will is in all of this... How much do I want to fight this and how much of an impact do I want this to have on my life / my son's life? Right now I'd really just like to put on the rose colored glasses and ignore this...! 😍 Thank you, again, for all of the support and for taking the time to write. Link to comment Share on other sites More sharing options...
LexieCat Posted March 5, 2019 Share Posted March 5, 2019 It may very well be that your doctor will recommend the watch and wait for now. So maybe you CAN be there for the conference--it might actually give you a real boost to meet up with so many others who know the drill, as well as to hear about some of the amazing advances in treatment. It really is an inspiring event. Link to comment Share on other sites More sharing options...
BridgetO Posted March 6, 2019 Share Posted March 6, 2019 Yes, do come to the conference! You will probabky find it really encouraging. Link to comment Share on other sites More sharing options...
Susan Cornett Posted March 10, 2019 Share Posted March 10, 2019 Colleen, I played the wait and watch game from January 2018 until August 2018. It stunk - it was my second recurrence. I had 3 rounds of SBRT in September and it zapped my recurrence. Just think of lung cancer as the whack-a-mole game: just whack it back down each time it pops up. Hang in there - we're all here for you. Link to comment Share on other sites More sharing options...
ColleenRae Posted March 10, 2019 Author Share Posted March 10, 2019 Whack-A-Mole... Love it! That's a great way to look at this, Susan. Thank you for sharing that bit of humor! I'm calming down a bit, but I really hate this *&%#!!! waiting as well. I did receive a note from my surgeon - I "guess" I should feel better for now after reading what his opinion was... He said that yes, there is a 5 mm nodule that has been present since a 2017 scan. He said it has grown little, if at all. He thought everything looked great on the recent CT scan and would recommend a 12 month follow-up. We will be discussing this more this coming week - I have an appointment with him. Looking forward to it as I have lots of questions and am not sure how I feel about a 12 month follow-up. When the radiologist says this looks like another malignancy... I'm finding it hard to really trust any provider I guess I'm just really going to have to work on my patience and my reactions to scans... I don't know why I get so freaked out. I tried not to, but I was really, really upset. Now just trying to put it out of my mind for a bit until I see the surgeon. It just feels like deja vu...The tumor I just had removed via lobectomy was the same thing - a watch 'n wait for almost two years. I really don't like living life like this. I know - none of us do. Some of you - most of you - sound much better at doing this dance with cancer than I am! Thanks again for the support! Link to comment Share on other sites More sharing options...
LexieCat Posted March 10, 2019 Share Posted March 10, 2019 Remember, the experts on lung cancer are the oncologists/surgeons/pulmonologists. A radiologist's opinion isn't worthless, but I'd take the opinion of one of the specialists over that of the radiologist any day. I think I'd ask about a six-month scan rather than waiting 12 months. You don't want to overdo the scanning. Six months is enough time to get a good sense of whether there's been any significant change without anything having a chance to get too out of hand. I've had scans every six months up till now. If my next one in June is good, then they will drop back to annual because it's been two years with no changes. Link to comment Share on other sites More sharing options...
ColleenRae Posted March 11, 2019 Author Share Posted March 11, 2019 Thanks for those words of wisdom LexieCat! Yes, I don't want to say the radiologist's opinion is worthless, but I've been here before (with this particular imaging firm/radiologist). Last year I learned I have thyroid nodules. The radiologist said they "looked" malignant and he was the one who performed a biopsy - he came into the room, looked at the ultrasound and said " that certainly doesn't look like a benign nodule"... Not very encouraging to my frightened self at the time! His biopsy ended up being viewed as NOT malignant but inconclusive due to his not obtaining enough samples. I was advised to wait another six months for another biopsy. I was, understandably, upset over this as I had the lung nodules as well. I ended up contacting another clinic through a university, had a repeat biopsy 4 months later (benign). This same imaging / radiologist advised I wait another 12 months when they did my last Lung CT prior to surgery... I ended up going elsewhere three months later, and that is when they advised that the tumor was growing more dense and should be removed / biopsied. So, yes, I do feel more confident in what my surgeon has said - but will learn more this week. I have a feeling he will agree that it probably is another malignancy, but that due to the size there is not going to be a huge rush to jump on this. Hopefully I'll be wrong - hopefully it's just one of those benign nodules that likes to give us grief. I agree with you - I think I'd feel better with a six month scan at least this next time around... just in case. Wow. That must feel really good to be heading into your home run in June... You've done great with this. Moving on to annual scans would definitely be a plus and encouraging. You know I'll be hoping for that for you... Link to comment Share on other sites More sharing options...
Tom Galli Posted March 11, 2019 Share Posted March 11, 2019 Colleen, I’m not one of those good cancer dancers. I absolutely made the nightmare of lung cancer worse by malcontentment. Like engineering, medicine is an applied science and application depends on intuition and experience. Scan interpretation is an art form. It is hard to do. I’ve found surgeons particularly adept at scan interpretation because they get to compare the scan view to actual tissue. So I hope your forthcoming consultation eases your mind. But, my experience tells me to not expect a definitive characterization of your troubling nodule. I never really came to grips with the uncertainty of lung cancer. I’m still unnerved before semiannual oncology consultations, and this frequency will likely continue for the rest of my life. So I understand what you are going through. I can’t offer solutions, just empathy or perhaps an alternative way of thinking. I manage uncertainty of my disease by focusing on what I can influence — my attitude towards enjoying life. My wife and I spent our grey-day Sunday preparing packing lists for our forthcoming April Transatlantic Cruise. The day flew past. Tomorrow I need to restock my bird feeder and hope to catch another look at the Red-cockaded Woodpecker, a rare endangered species, that strangely developed an appetite for sunflower seed! Maybe another encounter tomorrow! Your uncertain recurrence sucks oxygen out of the air. You are parked in unknown unknown land (unk-unk: a technical engineering term). Importantly, you can choose to drive on and ignore unk-unk land. Just leave it behind till the consult with your surgeon. Then, plan a rapid departure after the session. “Always look on the bright side of life” is “As Good As It Gets.” Stay the course. Tom Link to comment Share on other sites More sharing options...
LexieCat Posted March 11, 2019 Share Posted March 11, 2019 21 minutes ago, Tom Galli said: I’ve found surgeons particularly adept at scan interpretation because they get to compare the scan view to actual tissue. Excellent point. Link to comment Share on other sites More sharing options...
Rower Michelle Posted March 11, 2019 Share Posted March 11, 2019 Hi Colleen, There are some days when I wake up and still wonder what the heck happened. So I can't say that I'm good at this dance either. I did hear a Tom Petty song for the first time with new ears a few weeks ago- Learning to Fly but I ain't got wings, it's the hardest thing. It's my new mantra, I wake up each morning say today I'm going to fly. In some respects the cancer was a gift, I was living a life where I chose not to slow down- it was go-go-go. Much to my surprise I don't miss that life at all. This morning I got my hair done and went to the gym. I read these posts every day and find inspiration that keeps me going forward. Prayers are with you doing this waiting time! Michelle Link to comment Share on other sites More sharing options...
ColleenRae Posted March 13, 2019 Author Share Posted March 13, 2019 On 3/10/2019 at 7:57 PM, Tom Galli said: I never really came to grips with the uncertainty of lung cancer. I’m still unnerved before semiannual oncology consultations, and this frequency will likely continue for the rest of my life. So I understand what you are going through. I can’t offer solutions, just empathy or perhaps an alternative way of thinking. I manage uncertainty of my disease by focusing on what I can influence — my attitude towards enjoying life. My wife and I spent our grey-day Sunday preparing packing lists for our forthcoming April Transatlantic Cruise. The day flew past. Tomorrow I need to restock my bird feeder and hope to catch another look at the Red-cockaded Woodpecker, a rare endangered species, that strangely developed an appetite for sunflower seed! Maybe another encounter tomorrow! Your uncertain recurrence sucks oxygen out of the air. You are parked in unknown unknown land (unk-unk: a technical engineering term). Importantly, you can choose to drive on and ignore unk-unk land. Just leave it behind till the consult with your surgeon. Then, plan a rapid departure after the session. “Always look on the bright side of life” is “As Good As It Gets.” Stay the course. Tom Tom... As always, thank you for your sage advice and for sharing your own personal experience(s) and heartfelt opinions / suggestions. I DO need to focus and work on my attitude. Trying to recapture / find my joie de vivre. I actually perked up when I read what your plans are (packing/cruise) and could vicariously feel the anticipation you two must be feeling... Good for you and your wife! That gives me hope as well! Seeing the surgeon tomorrow. I am feeling calmer or maybe just more accepting. If nothing else, a better place to be in when we have our discussion. Thank you, again. BTW... My son will be incredibly envious when he hears you've seen a Red-cockaded woodpecker... He's a huge woodpecker fan and has been able to photograph them (mostly pileated) in the woods where we walk daily. He just changed his educational plan from computer science to biology with ultimate goal of ornithology On 3/11/2019 at 9:51 AM, Rower Michelle said: There are some days when I wake up and still wonder what the heck happened. So I can't say that I'm good at this dance either. I did hear a Tom Petty song for the first time with new ears a few weeks ago- Learning to Fly but I ain't got wings, it's the hardest thing. It's my new mantra, I wake up each morning say today I'm going to fly. In some respects the cancer was a gift, I was living a life where I chose not to slow down- it was go-go-go. Much to my surprise I don't miss that life at all. This morning I got my hair done and went to the gym. I read these posts every day and find inspiration that keeps me going forward. Prayers are with you doing this waiting time! Michelle Thank you, too, Michelle... Yes, I've seen the "blessings" that are emerging out of this as well - especially the kindness and support of "strangers" such as all of you on this site... Now you know I'll never be able to hear this Tom Petty song again without thinking of you...! ☺️ Link to comment Share on other sites More sharing options...
ColleenRae Posted March 16, 2019 Author Share Posted March 16, 2019 Hello! Well, what a roller coaster this constantly seems to be... and I, personally, don't really enjoy roller coasters! I saw my surgeon in Seattle this past week. I was very anxious to discuss my first post-op CT scan / radiology report re: the "new" nodule found. The following are excerpts from the surgeon's appointment notes: 10/01/2018 VATS right upper lobectomy. pT1aN0M0R0 adenocarcinoma ( papillary, 8 mm, G2, 0/10 LN involved) 5 months S Depressed since resection (True!) Some DOE but has not been as active (Not really true - probably more active with regards to the daily exercise I do now so not sure why he wrote this) Weight gain (Unfortunately, yes, and I complained about this! Probably from stopping smoking over a year ago) Otherwise, NED (He reiterated this several times during our visit) O new systolic murmur over AV II-III/VI (Now this was concerning... He asked if I'd ever been told I had a heart murmur... No; never!) CT chest in Bellingham on 2/27/2019 reported interval growth of LUL 5 mm GGO I reviewed all of her films and disagree with that interpretation: the GGO remains stable and a pure GGO I'm still feeling a little stunned by the visit. The surgeon was about 45 minutes late for our appointment. I had a lot of questions and I felt that he was feeling very rushed. When I asked him about the CT report he said he did not agree with the radiologist. He does not feel the nodule in question is a problem. He said he could be wrong - that in time it could change - but that for now he feels it has been stable for over two years and he is not worried. I asked him what I'm supposed to say now with regards to questions of cancer (i.e. Do I say I have or had cancer? Someone suggested I say I'm in "remission"). The surgeon looked me right in the eye and said "No. You do not have cancer. You say you've been cured." Wow. That sounded really good - but maybe too good? Can he REALLY say that this early / this soon after the lobectomy? He said he would not get another scan for 12 months; he just doesn't feel it is necessary. This is all so opposite of how I thought my follow-up would be... He did not look at my incisions - which I was surprised by as well. Upon examination he asked if I'd ever been told I had a heart murmur. No. So now I have to look into that. That kind of bothered me as I had asked a few times prior to surgery if I should have any heart-related tests prior to the lobectomy and everyone said no / not necessary... Has anyone had a heart murmur discovered after a lobectomy? So... I guess I should be feeling really good about seeing "NED" and hearing the word "cured"... But I'm still in shock, I believe, from hearing I even had cancer to begin with... Link to comment Share on other sites More sharing options...
LexieCat Posted March 16, 2019 Share Posted March 16, 2019 This sounds to me like ALL good news. I doubt any slight heart murmur you have is related to your surgery--I've never heard of that being a result of this kind of surgery. You probably want to consult a cardiologist, but many heart murmurs are harmless. I don't think "remission" is the correct term, exactly. Your cancer has been removed. If you had a cancerous mole removed you wouldn't say you were "in remission" from skin cancer. Surgery is considered a curative treatment, so there's a good chance you ARE cured. I tell people I HAD lung cancer, but that it was surgically removed at an early stage, and so far, I'm fine. As far as I know, I'll continue to be fine. I'd suggest maybe consulting with either a medical oncologist (since you don't feel like your surgeon was very responsive) or a pulmonologist in terms of getting another opinion about following up on the nodule. As I said before, I'd take the opinion of a cancer surgeon, oncologist, or pulmonologist over that of a radiologist. Link to comment Share on other sites More sharing options...
Curt Posted March 16, 2019 Share Posted March 16, 2019 Those sound like positive results. I had the same procedure three weeks ago. My surgeon DID say that a heart murmur was a possible side affect. He said it’s rare but it does happen. I was told they often clear up on their own and if they didn’t they could prescribe medication for it. Link to comment Share on other sites More sharing options...
Tom Galli Posted March 16, 2019 Share Posted March 16, 2019 Colleen, I like Lexie’s chacterization: nodule, removed, done, cured. In my case with 4 recurrences, NED is a more precise term. So grab good news anytime you can. To your new heart murmur, why delve into a cause and effect analysis. If you have one, see a cardiologist to confirm and if necessary treat. I see nothing but good news from your consultation. Celebrate! Stay the course. Tom Link to comment Share on other sites More sharing options...
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