Dina A Posted February 20 Share Posted February 20 Hi, I’m having surgery to remove an atypical carcinoid in my upper left lobe in 3 weeks. They may do a partial resection or have to take out the entire lobe. We won’t know until they get in. They plan to do this via VATS and this is my first surgery for this and I’m overwhelmed and terrified. I have lots of other chronic, autoimmune, genetic conditions having nothing to do with this so I’m not sure how my body will respond. Any information/suggestions/questions to ask the surgeon are welcome. While this isn’t my first surgery, this is my first lung surgery. Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
edivebuddy Posted February 20 Share Posted February 20 Sorry your facing this. Were any lymph nodes tested yet? I've had no experience with lung surgery but I've had plenty others and they were all not as bad as I had imagined. My nowel resection was probably the worse and brain surgery was the easiest and scariest by far. I'm sure you'll get a response from those that have had a wedge resection or lobectomy that can better guide any questions you may have. As far as the cancer. Lung cancer is not the death sentence it once seemed to be. Atypical carcinoid probably has the best prognosis as a type. With 5 and 10 year survival being so high, chemotherapy after surgery doesn't even have a consensus of the alphabet soups. Good luck to you. I'm sure it's not going to be a bad as you're imagining. tgif i guess 1 Quote Link to comment Share on other sites More sharing options...
BridgetO Posted February 20 Share Posted February 20 Hi Dina and welcome here! I had a lower right lobectomy by VATS about 8 years ago and it was pretty easy, as surgeries go. I was released from the hospital the next day. One suggestion I have is to get a firm foam wedge pillow to use during your recovery. This will help your breathing and make you more comfortable. Your whole upper body needs to be on the slope, not just your head. I tried to accomplish this position with a range of other pillows I had and succeeded only in getting a crick in my neck. The wedge helped me rest and sleep more comfortably. Hang in there! Bridget O tgif i guess, Tom Galli and C2Morrow 3 Quote Link to comment Share on other sites More sharing options...
LouT Posted February 21 Share Posted February 21 Hello Dina. Sorry you need to be here but glad you found us. In 2019 I had a resection that turned into a lower-right lobectomy. The surgery went better than I expected and here I am (almost 5 years later) and still NED (No Evidence of Disease). A while back I put together some "Thoracic Surgery Tips and Tricks" and it can be found here. It can help you prepare for your surgery, get you through the hospital stay and also provides information for the post-op period. I can understand how frightened you must be but know that many others (including me) have gone through it and almost universally you'll here us say that it was easier than we thought. I'm not saying it is fun or that rehab is easy, but it wasn't the tragic experience I once expected it to be. Please continue to come here and read, post any questions or updates and let us help support you through this part of your journey. Edivebuddy said it well, that LC is no longer the certain death sentence that it once was. Lou C2Morrow, tgif i guess, BridgetO and 1 other 4 Quote Link to comment Share on other sites More sharing options...
Mamma Om Posted February 21 Share Posted February 21 Hi Dina A. I want to share my carcinoid lobectomy experience with you. I also have immune system problems, like RA and Fibromyalgia and have COPD and asthma. I also had had lots of other surgeries, including 2x breast cancer and thyroid cancer. I was originally diagnosed with adenocarcinoma after a needle biopsy, in the right lower lobe. The cardiothoracic surgeon opted to remove the whole lobe. However, when sent to the pathologist, another small tumor was found that was initially diagnosed as small cell. Then, a few days before my 1st chemo/radiation, the Tumor Board took up my case and found that while the original tumor was adenocarcinoma, this 2nd one was neuroendocrine carcinoid. These tumors often appear in the digestive tract but are not unknown in the lungs. The good news was that removal of the entire lobe meant no need for chemo or radiation for either tumor. I have been cancer free for almost 6 years. However, there is a lesion or nodule now being seen in my (now called) right lower lobe so I have had chest X-rays, CT scan, and a recent PET scan. I don't know what happens next. I am seeing my oncologist soon. However, I had the surgery and was in hospital for 5 days. I had a chest tube, a heart monitor, a lung monitor to measure it fluid coming out of the chest and also in case of a partial lung collapse, and a catheter, but I was very comfortable and was getting respiratory therapy several times a day. I was told that removing the chest tube would be very painful, but it wasn't. Only took 5 seconds and done! I went home the next day. I took it easy for 5 or 6 weeks, and gradually got my strength back and my lung capacity up. I should mention that I was 74 at the time. I hope you can relax a little as going into this journey in fear will make it harder. Continue to ask questions of your Drs. and here. I have had worse surgical and worse chemo/radiations than with my lung cancer. Best wishes! tgif i guess, Tom Galli, TJM and 2 others 5 Quote Link to comment Share on other sites More sharing options...
Dina A Posted February 24 Author Share Posted February 24 On 2/20/2024 at 1:00 PM, edivebuddy said: Sorry your facing this. Were any lymph nodes tested yet? I've had no experience with lung surgery but I've had plenty others and they were all not as bad as I had imagined. My nowel resection was probably the worse and brain surgery was the easiest and scariest by far. I'm sure you'll get a response from those that have had a wedge resection or lobectomy that can better guide any questions you may have. As far as the cancer. Lung cancer is not the death sentence it once seemed to be. Atypical carcinoid probably has the best prognosis as a type. With 5 and 10 year survival being so high, chemotherapy after surgery doesn't even have a consensus of the alphabet soups. Good luck to you. I'm sure it's not going to be a bad as you're imagining. Edivebuddy, thank you so much for your response. As far as I know it isn’t looking like there’s lymph involvement. I’ll confirm this with my surgeon though. Is that something they can see when they’re in there during surgery? LouT 1 Quote Link to comment Share on other sites More sharing options...
Dina A Posted February 24 Author Share Posted February 24 On 2/20/2024 at 3:11 PM, BridgetO said: Hi Dina and welcome here! I had a lower right lobectomy by VATS about 8 years ago and it was pretty easy, as surgeries go. I was released from the hospital the next day. One suggestion I have is to get a firm foam wedge pillow to use during your recovery. This will help your breathing and make you more comfortable. Your whole upper body needs to be on the slope, not just your head. I tried to accomplish this position with a range of other pillows I had and succeeded only in getting a crick in my neck. The wedge helped me rest and sleep more comfortably. Hang in there! Bridget O Bridget O, this is so encouraging to hear! I’m glad your surgery went smoothly and I appreciate the suggestion of the wedge pillow. I had spinal surgery 2 years ago so I will break out the slew of different pillows I used during that recovery. I also just purchased a recliner so I’m hoping that will help too. LouT 1 Quote Link to comment Share on other sites More sharing options...
Dina A Posted February 24 Author Share Posted February 24 On 2/21/2024 at 10:12 AM, LouT said: Hello Dina. Sorry you need to be here but glad you found us. In 2019 I had a resection that turned into a lower-right lobectomy. The surgery went better than I expected and here I am (almost 5 years later) and still NED (No Evidence of Disease). A while back I put together some "Thoracic Surgery Tips and Tricks" and it can be found here. It can help you prepare for your surgery, get you through the hospital stay and also provides information for the post-op period. I can understand how frightened you must be but know that many others (including me) have gone through it and almost universally you'll here us say that it was easier than we thought. I'm not saying it is fun or that rehab is easy, but it wasn't the tragic experience I once expected it to be. Please continue to come here and read, post any questions or updates and let us help support you through this part of your journey. Edivebuddy said it well, that LC is no longer the certain death sentence that it once was. Lou Lou! That “tips & tricks” post is AMAZING!! Thank you so much for sharing. It’s been really comforting to read and I’m definitely going to make sure I implement your suggestions. I greatly appreciate your reassuring words LouT 1 Quote Link to comment Share on other sites More sharing options...
Dina A Posted February 24 Author Share Posted February 24 On 2/21/2024 at 12:12 PM, Mamma Om said: Hi Dina A. I want to share my carcinoid lobectomy experience with you. I also have immune system problems, like RA and Fibromyalgia and have COPD and asthma. I also had had lots of other surgeries, including 2x breast cancer and thyroid cancer. I was originally diagnosed with adenocarcinoma after a needle biopsy, in the right lower lobe. The cardiothoracic surgeon opted to remove the whole lobe. However, when sent to the pathologist, another small tumor was found that was initially diagnosed as small cell. Then, a few days before my 1st chemo/radiation, the Tumor Board took up my case and found that while the original tumor was adenocarcinoma, this 2nd one was neuroendocrine carcinoid. These tumors often appear in the digestive tract but are not unknown in the lungs. The good news was that removal of the entire lobe meant no need for chemo or radiation for either tumor. I have been cancer free for almost 6 years. However, there is a lesion or nodule now being seen in my (now called) right lower lobe so I have had chest X-rays, CT scan, and a recent PET scan. I don't know what happens next. I am seeing my oncologist soon. However, I had the surgery and was in hospital for 5 days. I had a chest tube, a heart monitor, a lung monitor to measure it fluid coming out of the chest and also in case of a partial lung collapse, and a catheter, but I was very comfortable and was getting respiratory therapy several times a day. I was told that removing the chest tube would be very painful, but it wasn't. Only took 5 seconds and done! I went home the next day. I took it easy for 5 or 6 weeks, and gradually got my strength back and my lung capacity up. I should mention that I was 74 at the time. I hope you can relax a little as going into this journey in fear will make it harder. Continue to ask questions of your Drs. and here. I have had worse surgical and worse chemo/radiations than with my lung cancer. Best wishes! Mamma Om, thank you so much for sharing your story. That’s quite a lot that you’ve gone through! Thank you for the details of your experience, it helps hearing it from the perspective of someone who has other heath issues. I wish you the best in your upcoming journey Mamma Om and LouT 1 1 Quote Link to comment Share on other sites More sharing options...
edivebuddy Posted February 24 Share Posted February 24 They may have already took biopsies of lymph nodes. During surgery they typically take lymph nodes and biopsy then. Treatment is usually dependant on those results. It's something you can discuss with the surgeon or oncologist if you have one LouT and Dina A 1 1 Quote Link to comment Share on other sites More sharing options...
BridgetO Posted February 25 Share Posted February 25 Hi Dina. Your recliner should be helpful during your recovery. And Lou's Tips and Tricks are great. LouT and Tom Galli 2 Quote Link to comment Share on other sites More sharing options...
KenHorse Posted February 26 Share Posted February 26 There's not really much I can add to the numerous excellent responses by others but I'll add that I also had a lobe removed last April (right lower), done VATS and the process was much easier to go through than my overly active imagination allowed me to believe. I never needed any pain meds stronger than acetaminophen and ibuprofen and even those, only for a few days after getting home (I was in hospital 1 night). Aside from some complications I experienced that I'm a now past (I'm part of the lucky 3% who do!), I've been doing fine So far, NED. You'll do great, I just know it Tom Galli and LouT 2 Quote Link to comment Share on other sites More sharing options...
Dina A Posted March 24 Author Share Posted March 24 On 2/20/2024 at 11:44 AM, Dina A said: Hi, I’m having surgery to remove an atypical carcinoid in my upper left lobe in 3 weeks. They may do a partial resection or have to take out the entire lobe. We won’t know until they get in. They plan to do this via VATS and this is my first surgery for this and I’m overwhelmed and terrified. I have lots of other chronic, autoimmune, genetic conditions having nothing to do with this so I’m not sure how my body will respond. Any information/suggestions/questions to ask the surgeon are welcome. While this isn’t my first surgery, this is my first lung surgery. Hey everyone, I had my surgery on the 12th and I’m doing ok! They went in via thoracoscopy and saw that my upper lobe was significantly smaller than it should be (likely just a structural anomaly). So they had to go ahead and perform a mini thoracotomy and take out the entire lobe. It was really tough at the beginning but I was still able to get up and move around in the hospital and I went home after 3 days. Each day gets better and I’m thankful to have my brother in town to help. Thank you also to everyone who posted with encouragement and resources, it was all very helpful. Does anyone have any suggestions on how to deal with sharp diaphragm spasms/pains? Is there anything to be done to lessen the pain and/or spasms or will they ease up with time? They were really bad in the beginning then subsided and have now started up again since increasing my amount of movement/time walking. -Dina Livin Life, tgif i guess, edivebuddy and 2 others 5 Quote Link to comment Share on other sites More sharing options...
LouT Posted March 24 Share Posted March 24 Dina, I'm so glad to hear that your surgery went well and that your recovery is going well. The spasms and pains are truly a pain in the butt. Some of that really has to do with muscles and nerves healing after the surgery. You may even have some ongoing nerve pain (itching and burning) at the sites of incisions. For those I recommend asking your doctor for Gabapentin. On the other side the more you can use the spirometer that more you do it the more benefits you'll see. Doing the exercises multiple times a day will help; clear your lungs for better breathing, strengthen your muscles to reduce spasms and increase blood flow for healing. Also move as much as you can comfortably do. I found that the more I moved (uncomfortable as it was) the better I felt. Try to keep your pain levels down as well. When you have less pain you're more apt to move and regain strength and flexibility. Please continue to keep us updated and I'm very happy you are doing well. Lou Tom Galli and Livin Life 2 Quote Link to comment Share on other sites More sharing options...
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