affenage Posted July 9 Share Posted July 9 So, I am Sue, I posted in the new member forum a little while ago. I am 63, live alone with my best friend Chester, my Jack Russell Terrier, and have had 2 separate cancers (breast and bladder) about 8 and 9 years ago. Today I had my first visit with a thoracic surgeon who I was referred to in order to have my 10mm SUV+ nodule removed by bronchoscopy and biopsied. I had gotten my head wrapped around that procedure and had started feeling positive.. But today I have to realign my mind and wrap it around a lobe removal and a hospital stay.. and a longer recovery. I know how lucky I am that it was found early. I know how thrilled I should be that I don’t need chemo and I should be close to as good as new in some months down the road. And actually, this should be great news to me since this will remove all the other pesky small nodules that we have been monitoring. But all in all, today was pretty sucky. Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
edivebuddy Posted July 9 Share Posted July 9 I'll be thrilled for you. I guess the surgeon really did call back on independence day. assume they did a ROSE? Have you received a full histology back yet? Others here will have great advice on your recuperation. Mine is only to follow the doctors orders. Stay hydrated and keep moving. Quote Link to comment Share on other sites More sharing options...
affenage Posted July 9 Author Share Posted July 9 19 minutes ago, edivebuddy said: I'll be thrilled for you. I guess the surgeon really did call back on independence day. assume they did a ROSE? Have you received a full histology back yet? Others here will have great advice on your recuperation. Mine is only to follow the doctors orders. Stay hydrated and keep moving. No, the decision to do a resection was not based on any cytology, just purely location and access to it. Centrally located with too many blood vessels and bronchi I believe. They have a great record with them, but this just wasn’t a candidate they wanted to try. Plus, the smattering of other small nodules that would concern him over time and that is a big plus. I understand his reasoning, and in fact when my oncologist was telling me it would just be a bronchoscopy removal, I was concerned that wasn’t good enough. So I really should be ashamed to be complaining now, lol. Looks like pre op tests next week and surgery maybe in 3 weeks. Based on morphology and growth, and past CT scans, he 90% believes it is a slow growing cancer and a 10% chance it’s a fluke PET positive granuloma. I told him I would be really pissed if they took out a chunk of me for nothing, but 100% happy that it wasn’t what they think it is. I really hope this one is going to earn me more than 9 years away from cancer centers. Oh, and Chester (the dog) was thrilled to hear they want me walking as much as possible ASAP afterwards. I do about 3 miles a day now with him, Doc tells me he wants me to be back up to that within 2 months. Quote Link to comment Share on other sites More sharing options...
LouT Posted July 9 Share Posted July 9 Affenage, Welcome to our forums…sorry you need to be here but glad you found us. Well it sounds like you are moving along in treatment and for most of us that’s where life got a bit easier (not the surgery, just the stress of the diagnostic process). From what you said you are lucky to have found it so early, that puts you in a better prognosis off the bat. There are a couple of things I’d like you to look at that might help you deal with your journey better prepared. The first is a blog titled, “10 Steps to Surviving Lung Cancer; from a Survivor”. It was written by a member who was originally diagnosed at Stage 3, then 4, went through multiple treatments and recurrences and 18 years later was declared “cured”. It’s inspiring and can be found here. The second is a blog I wrote titled “Thoracic Surgery; Tips and Tricks”. It was built on my own (and others’) experience with resection/lobectomy surgeries. You can find it on this page. In the meantime, ask any questions you may have, read others’ stories and posts and relax knowing that “you’ve got this”. Lou Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted July 10 Share Posted July 10 Well, dangit. Just what you were NOT hoping for. And yet, I have to share my very unofficial & completely anecdotal observation that surgical interventions seem to provide longterm excellent cancer-free time. Celebrate? Yeah, no thanks. Who wants to celebrate surgery? But celebrate the possibility of a longterm stable physical condition? You betcha! I'm sure you're starting to investigate at-home support services. Maybe ask on this forum what kind of help people found they needed after their lobe removal? That could help you prepare for afterwards. Keep us posted! LouT 1 Quote Link to comment Share on other sites More sharing options...
Livin Life Posted July 13 Share Posted July 13 Want to wish you well, Sue. Honestly, that is one of the reasons I did not want a biopsy in the spring and asked for a July rescan. Just made 4 trips to Ohio for other medical appointments and couldn't afford more time off or more travel (sooo exhausting). Was afraid if I went for a biopsy it would turn into resection with longer recoup time, time off work, etc. Sounds like your procedures are working out for you tho as far as timing so keep this in mind too. The same will be true for me now IF I biopsy is recommended at some point. I had to laugh at Chester and the walks. When you first mentioned Jack Russell I could only think about how much walking (or running) they need - hilarious dogs and very sweet though crazy energetic..... the walking will be so great for you and Chester. Glad you have him for companionship too - he'll come in extra handy : ) Wishing you well with all this!!! Please keep us updated.... affenage and LouT 2 Quote Link to comment Share on other sites More sharing options...
BridgetO Posted July 22 Share Posted July 22 Hi and welcome! I haven't been on the Forums in a while and just now saw your post. We have a lot in common. I also had 2 previous cancers when I started my lung nodule diagnostic journey. I had a nodule about the same size as yours and mine couldn't be biopsied short of lobectomy either. Mine didn't light up at all on the PET scan, but I was told that small, slow-growing cancers often don't. I went ahead with a lower right lobectomy and the diagnosis was NSCLC, adenocarcinoma, Stage 1a. I was released from the hospital the day after my surgery with a chest drain tube in place. Fortunately, my wife was a good caregiver. I was able to be up and around pretty quickly. but I needed help changing bandages around my chest tube. My recovery was pretty fast. My surgery was almost 8 years ago (when I was 71). I needed no further treatment, just regular CT surveillance. I've been NED since the surgery. I think being optimistic about being "as good as new" after your surgery is very realistic! I wish you all the best. Bridget O LouT, Tom Galli, tgif i guess and 1 other 4 Quote Link to comment Share on other sites More sharing options...
affenage Posted August 22 Author Share Posted August 22 So here it is, an update to my update, 6 days out from my VATS right lower lobe partial resection and now positive adenocarcinoma diagnosis. The road to get here has been extremely bumpy, and it doesn’t look like it is getting better any time soon. Originally this was detected as a growing nodule of 10mm, which lit up on a PEt scan and I was told that the only was to definitely diagnose it was to surgically remove it, so that is what landed me here. The VATS on 8/15 seemed to go well, and on the second day I was told to prepare for release the next day. Unfortunately, my clear low flow chest drain output changed abruptly to something resembling a banana milkshake and the flow rate increased to around a half a liter a day. Initially seeing it I was fearful I had developed a raging infection, but I was quickly taught all about chyme and chylothorax, a part of human anatomy and physiology that I had escaped learning previously. Suffice it to say, it is a leak of digestive products and lymph into the chest and due to a trauma to the duct it normally uses to enter the bloodstream. The first way they attempted to fix it was to shut down my digestive system in the hopes it would seal up by itself. So, I was taken off all food and water by mouth for two days. The color did start to change back, but the flow rate was still very high, and now my blood tests were showing the start of malnutrition and dehydration. I was then given a lactated ringers drip - to keep me hydrated. After another day or so, I was in protein deficiency, my RBC and HgB were down etc etc, so they finally put in a picc line and put me on IV nutrition. So now I wasn’t eating but not wasting away either. I was evaluated for a more aggressive repair, which at first was turned down and now is back in contention. That would involve threading a coil into the main lymphatic causing the issue. But today, just as they were getting on board with the idea, my final pathology report came back and turned everyone on their ear. My original data was a small nodule that had been monitored for 3 years and started growing since the last yearly ct scan, and seen at 10mm on the 3rd year ct scan. I was sent for a Pet scan, where it lit up I think with a 5-600 uptake (forgive me, too lazy to go look this up). And nothing else lit up at all on the Pet. Pathology found 5 out of 22 lymph nodes assessed were positive for cancer. I haven’t processed this yet, so I will just tell you that it takes all of the little breath I have away that I suddenly went from Stage 1A to stage 3A. The margins all seem very good, and the surgeon assured me that everything that was there was removed. But, Stage 3A is still Stage 3A, and having to do follow up chemo is an admittance that at this stage, you never really know what is where anymore. Also, a very curious one liner in the report that is greatly disturbing me and I have a message in to my surgeon to discuss with me tomorrow. It says, under Additional Findings: Chemodectoma was identified in slide A4 So the update to the update isn’t very good, and I am still no food by mouth. I am missing my two biggest comforts, Chester, my JRT and food.. so I have been spending most of today staring into space and crying. I hope I can pick myself back up tomorrow. Today was not a good day and I just want to go home, but I don’t think that is going to happen until sometime next week. Livin Life, Gingy22 and Tom Galli 3 Quote Link to comment Share on other sites More sharing options...
edivebuddy Posted August 22 Share Posted August 22 So sorry you're going through even more. I did total parenteral nutrition for weeks while they made me well enough to take half my colon then waiting for it to heal. I feel your pain. I don't think I lost any additional weight after being hospitalized. Chyle and chyme are very similar but you probably do not have chyme surrounding your lungs. That would be beyond a medical emergency. Chyme is in your small intestine full of acids enzymes and partially Digested food. while chyle is is the lipid rich fluids absorbed by the lymph system in the small intestine. The chyle works it's Way through the lymph system into the blood stream. Systemic treatments should wait until you get genetic profiling back. When do they expect them? Today's treatments can lead to treatment of the disease more as a chronic condition than a terminal illness. I'm 4b over 4 years Chemodectoma? My brother in-law had one on his neck. They said they're not cancerous but needed to be cut out . There is one good thing I read. It's not small cell Livin Life, LouT, Gingy22 and 1 other 4 Quote Link to comment Share on other sites More sharing options...
LouT Posted August 22 Share Posted August 22 What a rough time you've had. This journey is a tough one and many of us here surely understand your reactions and anxiety. I won't suggest "calming down" as that wouldn't do, but please do all you can to speak with your doctors and come to understand all you can. In my case the more questions I asked the better I processed things. In most cases our recoveries from lobectomy are pretty uneventful, so I can only imagine how upsetting this was to you (as well as uncomfortable and frightening). I agree with Edivebuddy that you need to inquire about any biomarker testing done so that the chemo can be targeted to be as effective as possible. Of course the spread to lymph nodes drove the difference in your stage (1a to 3a) but there are still solid treatments to ensure that any "wandering cancer cells" can be destroyed. If you want to learn more about the staging protocol you can find information here under "Lung Cancer Staging". Please do all you can to get rest, and update us as you can regarding further treatment. You can get through this. Lou Tom Galli, Livin Life and Gingy22 3 Quote Link to comment Share on other sites More sharing options...
tgif i guess Posted August 22 Share Posted August 22 i don't know much about the surgery and its complications you are experiencing. edive's post is encouraging. my cancer was in my lymph nodes. stage 4 something. chemo (and immuno) has my pet scans coming back clean for about 18 months. my chemo might have been junior league. i'm not sure where my chemo lands on the harshness scale. but i have had minimal side effects. if they say the chemo word, your experience might be like mine. i don't look at staging numbers as a scale of how long i have to live. the numbers have their purpose but some of us in the 4 club are doing pretty good. i'm one more voice hoping you can focus on healing from surgery. i hate to pile on bad news, but you know chester has destroyed the recliner and is eying the sofa. the sooner you get home, the more furniture you can save. LouT, Livin Life, affenage and 1 other 4 Quote Link to comment Share on other sites More sharing options...
Livin Life Posted August 22 Share Posted August 22 Affenage - be where you are emotionally.... you can only be where you are right now and any reasonable human would be where you are after all you have gone through, are going through and with recent news on the lymph nodes. Try to also keep in your other hand what those who have been in somewhat similar shoes are saying - Stage 3 or 4 and treatments have been effective - treatments have come a long ways.... You'll need time to get there though-you can't be where you're not YET. To tgif - omg your comments about Chester and the furniture were hysterical. hope that's a motivator for you and your docs to get you better and home as soon as possible, affenage.... those JRT's are feisty critters.... you'll be together soon and loving on each other....he's missing you as much as you are missing and needing him. LouT and Gingy22 2 Quote Link to comment Share on other sites More sharing options...
BridgetO Posted August 23 Share Posted August 23 Hi affenage. You've really been through a lot! And it sounds like it's not over yet. Someone else on these forums had an ongoing problem with a chyle leak (or chyme?- but probably chyle- I can't keep them straight). I remember his posts and his longing for a cheeseburger, but I can't remember his name. Does anybody else remember? His experience might be of interest to affenage. In any event, hang in there affenage. I hope things start looking up soon. Keep us posted. You're in my thoughts. Livin Life and LouT 2 Quote Link to comment Share on other sites More sharing options...
edivebuddy Posted August 23 Share Posted August 23 @KenHorse @BridgetO BridgetO 1 Quote Link to comment Share on other sites More sharing options...
affenage Posted August 25 Author Share Posted August 25 Maybe… maybe.. tomorrow I go home! My leak has stopped itself just at the last minute before we were going to do a procedure and we are food testing it now to see if it holds. I cannot express just how excited I am, and talking about it makes me turn all mushy and emotional. Home! Chester! Thanks to all of you, you have made the journey a little easier, and NO, my Chester is an ANGEL, he would never eat my couch. Of course he is staying at my cousins house, and her couch is fair game, lol tgif i guess, Livin Life, LouT and 1 other 4 Quote Link to comment Share on other sites More sharing options...
edivebuddy Posted August 26 Share Posted August 26 https://youtu.be/R4EnErMCKrI?si=4MBjmZActHpu_KB_ LouT, BridgetO and Livin Life 3 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted August 26 Share Posted August 26 Fingers triple crossed for you! LouT 1 Quote Link to comment Share on other sites More sharing options...
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