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Found 9 results

  1. Hi! I'm new here and soooo glad I found you all! Even though none of us really wants to have to be here. I am scheduled for a lobectomy in less than 2 weeks. Originally the surgeon thought he'd have to remove my entire right lung but after an MRI he now thinks he can save the inferior lobe. Quite honestly, I'm terrified of this surgery (open lobectomy with removal of tumor in mediastinum) because everything I've read talks about 1. how painful it is and 2. how long and difficult recovery is. I would appreciate if anyone would care to share their lobectomy recovery story. I just need to know the unvarnished truth - should I prepare myself for a lot of pain? Can I sleep on my back? Will coughing be horribly painful or mostly tolerable? How long did drain(s) stay in? How long were you in hospital? Any complications? When did you feel like your old self again? Are you out of breath all the time? Thank you for taking time to read this and, I hope, to answer. Elaine in CT (I go to Dana Farber in Boston so surgery will be at Brigham & Women's)
  2. Okay, your surgery is scheduled. This post is meant to provide you with information and tips to prepare for thoracic surgery, what to do in the hospital, and when you return home. I’m hoping that the information here will alleviate some of your anxiety and fears. You can do this; you will get through it! Be open to the support of family and friends as well as the folks here at Lungevity. We are here for you. Pre-Surgery o Eat healthily, get sleep, and also do some physical activity. It might just be walking, but the better your body works before surgery, the more quickly it can recover post-surgery. o Make sure you have someone to count on for your first few days at home. You'll be tired and likely in some discomfort, so having someone there to assist you when you need it can be a real help. If you live alone and have Medicare, you can ask your doctor for a home nurse to visit, check on your progress, and change dressings. In-home care also lets you ask questions about your recovery. o Get a wedge pillow. It will allow you to sleep in a more comfortable position, take the pressure off your back, and improve your ability to breathe comfortably. You may also want to keep a small pillow available to press against your body's surgery side when you cough. o Arrange the nightstand with things you may need, so you have them within easy reach. Remember stretching is something to avoid after surgery. o Make sure to fill your pain prescriptions and take them as recommended. Once you’re home, you'll need to be active, and it is harder to do to if you’re in pain. The meds are not a "forever thing," but are necessary to keep you comfortable enough to recover faster. o Have the numbers of your doctors readily available to call if you have questions or experience symptoms that concern you. o Pack your “hospital bag” bringing only the things you’ll need. Remember, a thoracic procedure requires a post-surgical stay of a few days before being discharged. In the Hospital o Show up on time. o On the day of surgery, after the surgery takes place, they will likely have you sit up, stand, or even have you walk to a chair to sit for a bit. It is important to get you moving and exercise your lungs. Remember the surgeon likely gave you a pain block, so it’s unlikely you’ll feel pain. o You should be given a Spirometer (if not, ask for one). Use it often; it will help to keep your lungs clear and rebuild lung capacity. o TAKE YOUR PAIN MEDS AS INSTRUCTED. The pain block will wear off within 12-20 hours after surgery, and without the additional pain meds, you will get uncomfortable quickly, so please take the pain meds as prescribed. o The day after surgery, you, your IV’s and chest tube/pump will go for a walk around the ward. Do not be an overachiever; do what is required and practice slow deep breathing when exercising. o If you miss bathing, the nurse can provide towelettes as a substitute. o Once you are stable, if your lung is not leaking air, and your body is properly absorbing post-surgery fluids, you’ll be set up for discharge. They’ll remove the chest tube, IV’s, and other paraphernalia they’ve attached, and you’ll be ready to go home. Home Post-Surgery o Have a plan to exercise. It should be walking; at first around your house and later outside (sunshine and fresh air are excellent tonics). But take it easy--this is not a sprint but a long race that you will win with each increasing step over time. o Continue to use your spirometer; it is your best friend for increasing lung strength and function. o You will be sent you home with pain meds. Take them as prescribed until pain is diminished. Pain restricts exercise and prolongs healing. o REST WHEN YOU FEEL TIRED. Sorry for the caps, but this is important. You've had major surgery and need time to heal, adjust to changes, and adapt to old activities. Be kind to yourself and give yourself grace until you’re strong enough to manage your new normal. o If you have any symptoms that concern you contact your doctor asap. For example, some people may hear/feel gurgling when breathing while it may be nothing it might be a condition (subcutaneous emphysema) that your doctor should be aware of. It can often resolve on its own, but keeping the doctor updated is a wise choice. o When you're feeling up to it, update us on our forum. Let us know how you're doing and ask any questions. We're here for you! Recovery differs for everyone; in my case it was about 6 weeks before I was almost back to routine activities after my Lobectomy. Please stop into the forum if you have questions. A good group of people will be there for you.
  3. I convinced my wife to hike up Diamond Head Volcano in Oahu yesterday. First I didn’t see any diamonds. Second it has been dormant for 150,000 years. Can you call a lake a lake if it hasn’t had any water in it for 150,000 years? What about a volcano that doesn’t have any lava? Anyway that’s not the point. The point is 358 days after I had my upper right lobe removed via lobectomy I hiked to the top of a volcano. It’s not a big volcano, but it’s a volcano. 760’ at the highest peak. We were told it would be about a half hour to get to the top. My brain said we’d be there in 20 minutes. 45 minutes later we made it to the top. About 15 minutes in I got scared. The feeling that maybe I shouldn’t be doing this, maybe I couldn’t, set in. My brain isn’t use to telling my body to pace itself. It just runs off up a volcano without a thought in the world. But then my body tells my brain that I need to slow down and pace myself. There were some spots that added to my concern. I got short of breath and had to stop a few times. About two thirds of the way up there is a 225’ long walking tunnel. The air felt kind of tight in there. Maybe it was just Claustrophobia. As soon as I got out of the tunnel I was confronted with 99 steps, felt more like a ladder. After that a few flights of spiral stairs in an old military concrete building. Then the final 76 steps to the top. Most people say the view at the top is worth the effort. For me the view was secondary to the accomplishment I felt getting up there at all. If I can do it so can you. Mahalo!
  4. I have been reading a lot of older posts (better than watching endless impeachment coverage) and it looks to me like post surgery chemo seems to be more normal now. My going in position was surgery was da cure and no need for toxic chemicals ( spent most of my career around them so why more?) Question for those who had surgery with early detection.....Chemo or no Chemo? Want to ask now, before surgery, when my head is clear. Surgeon said we would meet with an on oncologist soon after it is done. Thanks in advance to all. Keep up the great work. So helpful Peace Tom
  5. Hello everyone - I am very glad to have found this forum. My husband was diagnosed on 4/1/19 with adenocarcinoma in his right lung. They caught it early and he is scheduled to have his right upper lobe removed on 4/23/19. We found an amazing cardio-thoracic surgeon who can use VATS. My husband is 61 and extremely active - he has never smoked. Needless to say, we are both a bit overwhelmed and scared. You go from normal life to being handed this diagnosis and it is a bit hard to wrap our heads around it. We are both as positive as we can be - but I know that he is afraid he will turn into this frail person who won't be able to walk across the room without resting. I would love to hear from people who are willing to share their experiences from VATS and what we can expect for recovery. I want to find a way to give him some hope. Also, I want to learn how I can be the most helpful to him as we go through this. I am 50 years old with a full time job...our boys are 23 and 24 and both out on their own with good jobs after they finished college. This is how empty nest is going for us! Sorry, but I use humor a lot We laugh, talk, cry, feel strong, get scared rinse and repeat. Both of our sons will come be with us for surgery and recovery. I look forward to reading your posts and getting to know you all better. Life is so much better when we reach out - as we are all connected. God Bless you all ❤️ ~ Stacey
  6. I'm a 37 year old mother of 1 living in Florida. I have had a cough since August 2017. I ignored it for a long time, got antibiotics once, steroids another time..then was told I have silent reflux and was prescribed protonix. This made sense kind of since chest xray looked good and the fact i have ulcerative colitis. On Saturday Nov 17th I felt horrible. The whole week leading up to this I was coughing and wheezing so bad it scared the crap out of me. I could not believe the noises coming out of me. It kept me up at night because it was so loud and it scared me. I figured it was because I have smoked on and off for the better part of 20 years. But anyways on Saturday Nov. 17 2018, I worked half day, feeling worse by the hour, by the time I got home I just told my fiance , I need a nap and if I don't feel better we are going to the ER tonight. (For me to say this he knew it was bad because I NEVER go to the doctor unless forced , let alone the ER) To make a longer story a little less long, I was told I had pneumonia and they would give me antibiotics and let me go home. Before they would let me go they said I had to walk around the hall with the oxygen thing on my finger, well my oxygen got as low as 84 but stayed at 88 most of the time. Needless to say they admitted me....for 9 days! Multiple CT scans, MRI'S , blood draws, xrays and 2 bronchoscopies later...I was diagnosed with adenoid cystic carcinoma of the lung. The small tumor is located on the lower left lobe of my lung. Even though results kept coming back saying something about the salivary glands, they just don't see it. I went for a PET scan and PFT on Thursday Dec. 13th then I have an echocardiogram the 17th and and the thoracic surgeon the 18th. My oncologist says he's pretty confident that having a robotic lobectomy will be all I need. I've been trying to trust him, but this week has been rough. All of a sudden all of the what ifs are getting to me. Reality of surgery is getting to me. The hours and hours of phone calls everyday , getting nothing accomplished...feeling so defeated! Only a few people know what is going on because I don't want pity, or to be treated differently but at the same time I feel I need to talk about it! But so many things are starting to make sense now....no wonder I've been coughing and wheezing and getting so easily tired and short of breath....my frickin lung was collapsed for god knows how long.....as the docs keep saying....the pneumonia was a blessing in disguise. **Sorry for for rambling and thanks for letting me share** 💕 If anyone has any experience with ACCL or robotic lobectomies I would love to hear your stories!
  7. I have had my second ct scan (6 mo interval). Nodule has increased from 7mm to 11mm. I am 71 years old. I quit smoking 5 years ago. The nodule is in the upper left lobe. Next week i am sched for pulmonary function test and pet scan. Following week biopsy. I am BEYOND anxious. Any encourging words would be soooo appreciated. Is the size of this mass considered largw?
  8. Hi all, I've been a member for a few months but haven't done a "full" post about my mom as I felt I would jinx the possibility of good news (desperate times call for desperate measures!) I want to write this post to share my mom's journey and possibly relieve someone else's anxiety, while gaining hope and info from all of you. So, here's her story: Overall health: 63 years old, obese, diabetes controlled with diet, sleep apnea, rheumatoid arthritis November 2015 - initial lung cancer diagnosis - NSCLC, stage IIIA. She had shortness of breath which lead to the discovery of a few small nodules. January 2016 - upper right lobe removal - we had to wait so long because my mom has Rheumatoid Arthritis and the meds she was taking at the time had to be out of her system. Surgeon found a few lymph nodes that were involved as well, unable to remove it all. She recovered from surgery quite well. She continues to have pain at the incision site, which we are told is normal. Overall breathing was better than it had been in years (she had a lot of emphysema in the lobe that was removed). February 2016 - 6 weeks of weekly chemo (can't remember which kind) and daily radiation - lost hair, pretty bad acid reflux which became controlled with meds. Some fatigue. Scans & more scans - she received the 1 year "all clear" in April 2017. We thought everything was going well. My mom's pulmonary specialist left, so she met with a newly established specialist. He was looking over her old scans because she was having trouble breathing. He suggested he scope her bronchi and he saw a concerning area he wanted to biopsy. Long story short, she has cancer on the back of her trachea that is hard to see in chest x-rays and CT's. We are thankful someone actually saw it, but frustrated it wasn't found sooner. They are calling it a recurrence, but several doctors aren't convinced it wasn't there the whole time and just did not respond to treatment. Possibility of repeat radiation??? This was an important question I wanted answered because I had seen differing answers during my research. About half of the new mass on her trachea is in the original radiation area. The radiologist says that he can do radiation again in the same area since enough of it is out of the original radiation zone but the likelihood of having severe side effects is very high. I asked about radiation seeds and internal vs. external beam therapy - he said they can all have the same result of increased side effects. He is one who believes the mass was there the whole time and did not respond to treatment in the first place. So he suggested radiation as a last resort if other treatments did not work. July 2017 - trachea stent put in to open airway (mass had airway closed 70%). Surgery was a breeze, she can breathe well. Mom was in and out of hospital after surgery with severe mucus build up. Still has mucus build up. July 2017 - Treatment plan - 8 rounds of Keytruda (she has the PD-L1 mutation), the first 4 with chemo - alimta carboplatin, every 3 weeks. New treatment info: Adding chemo to the Keytruda at the beginning of treatment is having better results than Keytruda alone. This information was released in June 2017 at a national cancer conference. It supposedly brings the effectiveness from 30-50% up to a flat 55%. We will take every small piece of help we can get!!! CT scan will be after the first 4 treatments to see how things are going. Keytruda and Rheumatoid Arthritis: her oncologist is unsure how her RA will react. Her RA has never been under control, so she deals with a lot of pain anyway. They are assuming she will have major flair ups. We will deal with those when they happen. Large doses of steroids and all RA meds can reduce the effectiveness of Keytruda, so we will have to get creative. July and August 2017- My mom is on her 2nd treatment. The biggest side effect is total exhaustion. However, she began her 1st treatment 1 day after spending nearly 3 weeks straight in the hospital. Her oncologist feels that the extreme fatigue is more likely due to recovering from her stent surgery and all of the hospital visits. She still has a lot of mucus and her pulmonary specialist is keeping it "sucked out". She coughs a lot and does not have a voice. We will learn more as we go but so far she's surviving and we feel things will get better with her breathing and fatigue. August 4, 2017 (a day we can (mostly) breathe) - PET scan results show that cancer has not spread (cue happy dance!!). So what now??? We live day by day. I take part in these forums to find support and to give support. After finally receiving the first bit of good news in several months (the cancer had not spread), yesterday was the first day I didn't break down bawling. We are finding our new "normal". She is being silly and laughing more. And in October, we are going to see Jimmy Buffett for the millionth time! I plan to update this post periodically with information that I think is important to share for those looking for information and when I need some advice or a bit of support. I appreciate each and every one of you for your kind words to all that reach out and for fighting to live so we all can have a little more hope at the end of the day.
  9. Hello all, I am 25, and had part of my left lower lung removed last year in June. They told me they removed a baseball sized mass from my lung, and I was diagnosed with bronchiectasis. I have reacurrent (multiple times a year) pnemonia which affects my entire left side from the neck/left shoulder down. I know this is a forum for cancer, but finding help for my condition always brings me to lung cancer sites and I don't have anyone to talk to about this around me. I am currently in the military, and my pulmonologist says I am his youngest patient with this issue. I am very active and work almost 12 hour days, and I am an avid runner/hiker. I still have pain in my left side from shoulder down, and I've noticed some changes lately. My sternum is constantly popping, to the point its sharp pain takes my breath away. I started running a lot more and am trying for 100 miles this month. I'm on week two and I can't seem to stay awake. For lack of better description, I feel like I could sleep for weeks. I sleep about 8 hours a night, not on purpose, I try to stay awake but I start getting out of touch with reality a bit. Everything just seems to take a major toll on me. My lung function test recently was taken and I am at 71%. I do breathing exercises and use inhalers every day. No one around me really knows what to do with me since I am being medically separated from the military, so I'm often finding work out plans to do by myself to stay fit and healthy. I have been doing biofeedback and when I am hooked up to the moniters before anything starts, they read that my body is in 'fight' mode every time. The doctors here are always understaffed so they don't have time to sit down and figure everything out with me, so they gave me anxiety meds to help me 'calm down'. To better paint a picture of the medical I have here, when I had my surgery, on morning of day 2 they pulled the chest tube out and because they didn't have enough beds I was checked out and I literally got up from the bed on my own, packed my bags, and walked to the elevators and out to the parking lot until a friend picked me up. I was then on my own for several days and didn't eat for 3 days until someone checked on me and brought me soup. I then got enough strength to drive 5 hours to my mom's place so I had someone to watch me. I ended up in the ER with a high fever because the on base hospital here does not perscribe antibiotics after surgery unless they are needed. Does any one have any pointers that is actively doing fitness? Specifially cardio? I'm scared I'll do something to make myself worse, I'm only 25 and don't want to be hooked up to a breathing machine before I'm out of the military and free to be me again. I don't want to give the impression that I'm an idiot, its hard to explain how much my hands are tied when it comes to military medical. I'm honestly just very lost and alone through all this and want to talk to people who have been through this to see how they are handling it. Google only helps so much.
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