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LouT

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I've recently been told that I need to have an open-thoracic biopsy on my right lung lower lobe and that it is likely Stage 1 lung cancer.  This all came about very suddenly and by chance as I have no symptoms, but I assume that is better than if it is malignant and had advanced.  I'm likely (90%) looking at a lower right lung lobectomy on May 2nd.  I'm learning all that I can, but frankly my anxiety level is very high.  I had colorectal cancer in 2010 and after a resection was considered cured.  A recent PET Scan only shows this nodule in my lung at an SUV of 2.3 (mild hypermetabolism) but the fact that it has grown from Jan to Mar is the factor where the surgeon is saying that there is only a 10% chance of it being benign.  Aside from this I'm generally in good health and although I smoked for 25+ years and quit 16 years ago my recently tested lung function is pretty good (better than it looks on my CT).

I'll take some time to look over the forum so I can learn from others, but I look forward to hearing from you and (hopefully) being able to contribute back one day.

LouT

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Hi Lou.  Welcome.  Sorry you are here but glad you found this site.  I had an upper right lobe VATS lobectomy six weeks ago.  I went in for a wedge resection to remove an 8 mm nodule, they tested it while I was still under, determined it was Stage 1 Adenocarcinoma NSCLC and the doctor moved ahead with the lobectomy.  I don t require any follow up treatment, just periodic scans.  My nodule was found a year ago also by chance on an abdominal scan.  I am not a doctor but given the growth, previous history and the 2.3 SUV on the PET the course of action you describe seems appropriate.  Good news is that surgery can be a very effective treatment, even cure. Make sure it’s a VATS surgery if possible.  That will make recovery easier than an open surgery.  The recovery from the VATS surgery hasn’t been terrible and the quality of life changes have been minimal after just six weeks.  I expect to get back to 100% at some point.  

Cancer and anxiety go hand and hand.  The last year was one of the most stressful of my life.  You’ve found a good place to ask questions , lean on people with similar experiences and to contribute.  All three are welcome.  

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Hi, Lou, and welcome from me, too!

Has the doctor said why it's necessary to use an open thoracic incision for the surgery?  I'm with Curt--the VATS is WAY less intense and invasive--less pain and fewer complications.  There ARE sometimes situations (most often, the location of the nodule) where VATS isn't possible or practical or safe.  But most lobectomies--especially for early/small nodules/tumors--can be done by VATS.  Some hospitals and surgeons aren't equipped to do them--they do require significant skill and experience--but if that's the case I think I'd check around to see if there's somewhere you could have the less invasive surgery.

Glad you found us--this is a great place for knowledge and support.

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LexieCat and Curt,

Thanks so much for your responses.  They did try to do a CT Guided Needle Biopsy, but the small size and location of the nodule kept them from feeling confident that they could get the sample accurately so we are doing the open biopsy.  The doctor told me he will be doing this using Robotic approach which should reduce my hospital stay.  I'm not sure how that compares with VAT, but I believe it is similar. 

Curt, you mention the recovery time and that is of real interest to me.  You see, I'm the only caretaker for my wife (early stages of Alzheimer's) so, I really want to get back on my feet as quickly as possible.  In my case it is the lower lobe and I've been told that I will have a good recovery, but that when I workout (5-6 times a week aerobic and weights) that I will feel winded and that will take longer to accommodate to.  Is that your experience as well?  I do remember recovering from colorectal was a bear, but I've heard that lung surgery is tougher.  And the doctor is saying that as long as the nodule is primary lung cells and not migratory from my colon (which he doubts after 9 years and a clean PET Scan) then this could be a cure.  I'm praying that he is correct and encouraged to hear you say that your recovery wasn't terrible.

I'm also glad I found this group.  I know what I'm about to say will sound pretty strange, but when searching for info on the surgery I saw this group a week or so ago but avoided it because it would seem like an acceptance that I had lung cancer.  Now that I've read some of the thoughts and stories from others I'm truly happy I came back to the forum.

Thanks again,

LouT

Edited by LouT
left out a word.

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Robotic surgery is virtually identical to VATS--it's just that a robot is used.  The incisions are the same, and so should your recovery time--fast, in other words!  It was the "open thoracic" that threw me, but maybe that's what they call it when referring to a biopsy (as opposed to a needle biopsy).  

I was back to work (desk job) just a couple of weeks later, and after a couple of months was feeling almost completely back to the way I felt before the surgery.  The fact that you work out regularly should help a LOT.  I'm much more sedentary, but even so, I was walking a couple of miles a day, several days a week, only a few weeks afterward.  I notice no shortness of breath, either.  You might notice some difference, but it's not likely to be much.  

I'd suggest using the time between now and May 2nd to get whatever help you need lined up, as well as doing whatever needs doing for the next few weeks. Also suggest you pick up a wedge pillow--it will make sleeping more comfortable the first couple of weeks to be slightly elevated.  You might cough quite a bit for a few days.  Actually, the sore abs from coughing was the greatest pain I had after the first few days.  But the coughing is encouraged, to help keep your lungs clear.  They will give you breathing exercises--suggest doing those religiously, and also getting up and around as soon as you feel up to it.  My bet is you'll be able to do just about anything non-strenuous within a week or two--walking, driving, etc.  

 

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LexieCat,

Wow, you recovered very quickly.  I'm so glad to hear about the walking as well.  I do 5-6 miles/day about 6 days a week and do weights 5 days/week.  I've read some posts where people were runners and are working back to that.  The wedge pillow is a great idea, thanks for that.  I've been told (by surgeon's pre-op nurse) that he gets his patients up day of surgery to walk to and sit on a chair.  Sounds rough, but she echoes what you are saying, that it's all about keeping the lungs expanded and working.  The surgeon told me that I shouldn't drive for the first three weeks, but it is nice to hear you were able to do so a week or two afterward.  My wife goes for treatments and I wouldn't want to send her in an Uber.

I do have another question and it's about pain meds.  How long afterward did you find you needed them and how did you avoid digestive slowdown (something I had a problem with last time) while taking them?

Thanks again for the info.  Now, I just need to stop waking up all night long.  As Curt said this is the most stressful thing. 

LouT

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I had my surgery at 4 pm on a Tuesday.  I was up and walking slowly around the hospital wing the next morning.  They had me doing a mile of walking a day.  I went home on Thursday.  Going home will depend on when they can take your chest tube out.  I’ve heard of some people who went home with it in, I had to have it out before they would let me go home.  Walking and doing the breathing exercises speeds that up.   I continued walking in my house every day and doing breathing exercises.  I was told I could drive as soon as I stopped taking the pain meds.  I really needed the pain meds while I was in the hospital.  They helped with the pain but I felt like I was in the clouds and was also concerned about constipation.  I stopped taking oxy on the Saturday after surgery.  I switched to alternating Excedrin and Tylenol.  One side affect of the Tylenol and Excedrin was night sweats.  I would wake up drenched every morning.  I started to only take it as needed and tried to avoid it before bed.  They gave me nerve blocking medicine, Gabapentin, that was supposed to help with the nerve pain.  It looked like the northern lights in my head when I’d close my eyes.  My head also felt like I had a concussion.  I stopped taking that one on the Sunday after surgery.  The nerve pain bothered me, but I found the side affects of the meds worse.  They gave me  stool softeners. Between those, drinking a lot of water and moving around as much as possible I returned to normal bowel function in about a week.  I drove myself to get s haircut the Wednesday the following week after surgery and went into the office for a couple of hours on that Friday.  I was tired after doing almost anything.  I’d wake up, walk, take a shower, Eat breakfast then take a nap.  In the afternoon I’d wake up from my nap, walk, eat lunch, go do something like get a hair cut then take a nap.  It was a tired like I’ve never felt before. The kind of tired where I could fall asleep standing up.  The tired lasted three to four weeks.  The incisions under my arm hurt and had quite a bit of swelling.  I was not able to let my arm rest at my side for almost four weeks.  I carried a small pillow agains my hip and in my hand to keep the weight of my arm off my incision.  I was six weeks out this last Tuesday.  I still have some nerve discomfort, not pain.  I’m  told that could last a long time.  Internally I never experienced much pain with normal breathing.  I was really surprised by that.  It would only hurt if I coughed or sneezed   Sneezing was worse for me.  That small pillow I used under my arm doubled as something to squeeze when I had to cough or sneeze.  At this point I can do both without any pain.  There is a pulling sensation, but no pain.    

The fact that you exercise a lot will be very helpful with your recovery and ability to regain your lung capacity.  I’m 43 and in average physical health.  I’d call myself dad fit.  I have three young sons and they keep me going.  I was able to max out the spirometer before surgery, 4000ml of lung capacity   I’m back to 3250ml.  I’m laser focused on getting all the way back.  I’m able to do light exercise with no issue.  I walk at a fast pace on the treadmill for a mile and a half.  I play in the yard with the kids and coach their baseball teams.  I do get winded if I elevate my activity to medium/high.  It is harder right now to catch my breath but I expect that to go away soon.  

I went into my surgery not knowing if I had cancer and if it was going to be a wedge resection (what your are having) or a full lobectomy (what you will have if it is cancer).  I would figure after two weeks I was 60% recovered, four weeks 80% and after six weeks I’m 95%.  Lexi gave some great advice about planning ahead.  Hope for the best results but plan for the worst.  If you aren’t able to drive yourself you may be able to take an Uber with your wife.  Meal prep now so you have a lot of meals ready.  Order in.  Get your bed set up.  Have a chair set up you can sit in when you are tired.  Pay all your bills for May before hand and put yourself in the best position to have time to heal.  

I completely understand not wanting to concede it’s cancer.  You should hold out hope it’s not.  I came to this site six months before knowing what it was.  It was the only place I could find answers.  If it is benign everyone here will be thrilled for you, if it is cancer everyone here will support you.  It sounds like you are in good health and will breeze through this.  Hopefully it’s just a biopsy.  

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I needed the narcotic pain meds only for the first day or two after I got home.  They make me nauseous, so I always work to get off them as soon as I can.  High-dose ibuprofen did the job just fine after that.  I did have some constipation, which happens after almost any kind of surgery, especially with the heavy-duty pain meds.  I drank a lot of high-fiber mix and it didn't last too long.  

I didn't have extreme tiredness.  Nor was the pain especially bothersome after the first couple of weeks--I'd describe it more as soreness, like a pulled muscle.  Everyone is different--as Curt said, prepare for the worst, but hope for the best.  My bet is it will be a lot less daunting than you think it will.  

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Hi, Lou,

Welcome to LCSC. My name is Lauren and I'm the Digital Community Manager for LUNGevity Foundation.

I'm glad to see that you've already connected with a few of our members. This community is a great place to find information and support. Please feel free to explore the message boards and blogs, ask questions, and join the ongoing conversations.

In addition to these forums, LUNGevity also has a robust Lung Cancer 101 website, free patient educational materials, a Survivor and Caregiver Resource Center, peer-to-peer support programs,  a toll-free Lung Cancer Helpline, survivorship conferences, and lunch and learn events. You can explore more here: https://lungevity.org/for-patients-caregivers Please let me know if you'd like any additional information about LUNGevity's Support & Survivorship Programs.

We are here for you!

With gratitude,

Lauren
--
Lauren Humphries
Digital Community Manager
LUNGevity Foundation

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Hi Lou and welome. Curt and LexieCat have given you great info and suggestions, so I'll  just briefly add my own experience. I am 73 and active but not athletic at all.  I had a right lower lobectomy by VATS  in November 2016. I was released from the hosppital the day after surgery with the chest tube in place. I was able to be waliking around the neighborhood  in a couple of days with my tube and bag hidden under a big raincoat.  I was told not to drive until the tube was out and I was off he oxycodone. The tube was in for 10 days and after it was out I got off the oxy quickly. I didn't/don't have any lingering pain. My recovery was pretty fast. I hope your surgery will be as easy.

Bridget O

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Hi Lou and welome. Curt and LexieCat have given you great info and suggestions, so I'll  just briefly add my own experience. I am 73 and active but not athletic at all.  I had a right lower lobectomy by VATS  in November 2016. I was released from the hosppital the day after surgery with the chest tube in place. I was able to be waliking around the neighborhood  in a couple of days with my tube and bag hidden under a big raincoat.  I was told not to drive until the tube was out and I was off he oxycodone. The tube was in for 10 days and after it was out I got off the oxy quickly. I didn't/don't have any lingering pain. My recovery was pretty fast. I hope your surgery will be as easy.

Bridget O

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Wow, you folks are great.  Hearing your experiences is so much better than just reading a brochure telling me what to expect.  I do get that everyone is different, but I must admit that my anxiety level has definitely gone down a bit since reading your experiences and hearing so many hopeful and positive things.  I'm also struck by the strength and courage I hear in your stories.  I couldn't be happier that I found this forum and I hope one day to pay it forward.

LouT

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Hi Lou,welcome to LCSC,I live in Scotland and had a upper right lobectomy in January 2009,your descriptions of your surgery experience does bring back memories to me.I had a drain port placed in my back post surgery which was removed prior to leaving hospital.I didnt have the benefit of key hole surgery ,which incidentally was pioneered by a surgical team in Scotland.I did have some aches with my scar for some weeks post surgery,pain is too strong a word,this ache disapeared imperceptively over the weeks.In Scotland we dont do post surgery CT scans,just a X-ray and check up every six months for 5 years post surgery.At my last visit 5 years post surgery,my oncologist told me he had every confidence that I was  cured,now go away I dont expect to see you again.Now over 10 years later I have a full and active life,I enjoy every minute,now have  a grandson someone at one time never thought I would never have met.I have a new partner in my life Liz,we have been together for 5 years,she has two grandchildren,a boy and a girl,all the grandchildren visit regularly with their parents of course,although we are often used as babysitters including the children staying with us overnight.I have bought a holiday home in Albir Spain a couple of years ago,so Liz and I can jet off to the sun whenever to escape the worst of Scotlands weather.We are off shortly to Spain this May/June,granddaughter Alba and parents are coming out with us for a week (Alba means Scotland in Gaelic) Alba is just a lovely person (16months old) the other grandkids are Parker 4 years old and my grandkid Orion 2 and a bit.Yes strange names,seems Scottish parents dont go in for John or Mary anymore.I do hope you forgive my rambling I just wanted to share with you there is life post cancer,I celebrate my 70th birthday this May and have much in life to look forward to.I do wish you a complete recovery from your surgery and can enjoy many years ahead.

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Eric

Thanks for sharing your story. Along with the others I've heard, it gives me hope for the future. I'll admit I'm very concerned about recovery, post-op limitations, and recurrence. I just retired 2 years ago and had an optimistic picture of how my wife and I would spend time in this part of our lives.  When I read a story like yours,Lexie and others  it brings a spark of that optimism back.  I'm working hard on staying positive and do better some days more than others. 

Finding this forum is a blessing to me at this time.  Thanks again for the words of hope. 

Lou

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Thanks for the reply Lou,I would like share with you a experience I had post surgery.Following my surgery in Jan 2009,like you I was still feeling uneasy about my future,will my cancer come back?if so how long would I have left,type of anxieties.One day I picked up a popular Glasgow newspaper called the Evening Times,glancing through it I came across a a feature about a guy called Robert Lowe,he is a lung cancer survivor who was setting up a lung cancer support group with a lung cancer nurse called Penny Downer.I smiled at the irony,imagine two people called Lowe and Downer starting up a lung cancer support group,however I read on.Robert was dxd with SCLC in 1993,which you may appreciate is a particularly nasty type to get.His doctors told Robert that they considered he had only months left to live.Robert pleaded with the doctors to give him a fighting chance,that he would consider any type of treatment that could extend his life.The doctors considered his request and put to him a chemo regime what would be extremely severe on his body and he would have to remain in hospital for the duration of the cycles.Robert agreed,however he was having such a hard time with the treatment,one day the doctors invited his family to visit him as they thought he would not see tomorrow,but Robert recovered much to the amazement of his doctors.Robert made a full recovery and took up a normal life.Then in 2006,he was then dxd with NSCLC,had treatment and made a full recovery.Well you can imagine my amazement in reading this in Feb 2009,I just have to meet this guy,so I joined his lung cancer support group in Glasgows Stobhill Hospital.I was amazed further when I met Robert and exchanged our life stories,he was 10 years my senior,we were both brought up in the same district of Glasgow called Springburn,which at one time was the worlds biggest manufacturers of stream trains exporting them all over the world,sorry I digress,Robert and I went to the same schools,we even shared many of the same teachers.Each time we met up it was all fun and laughter,we shared so many anecdotes  of our lives.Through Roberts encouragement I became like him a advocate for the Roy Castle Lung Cancer Foundation and we were very active in supporting fund raising adventures.I enjoyed a certain amount of fame if you like,I was invited to share my story on BBC radio,other radio stations followed.I was invited by Scotlands first minister to share opening a new health centre in my hometown Springburn,gosh it was amazing,all the press were there,i felt like a movie star,nxt day my story and pics were in the newspapers,think I bought a copy of every newspaper in Scotland.Later I was invited to the Scottish Assembly Buildings with Dr Jesme Fox who was presenting a paper about the regional variations of Lung Cancer survivability within Scotland.I was there to appeal to the politicans (MSPs) to focus on giving Lung Cancer Research more funding.

Robert and I shared in many adventures,too many to decribe here,however,one day I forget the year, 2012? Robert shared with me that he has now been dxd with stomach and throat cancer.He had already discussed treatment with his docs,he was given a lung function test which was not good,his doctors said to operate on him would entail temporarily deflating his good lung to provide access to the tumour.Well Robert suggested to them going to the Gym,improving his diet,losing some weight,they agreed but were not really convinced.Amazingly Robert retook the lung function test,and the results were 30% improvement,sufficient for the doctors to agree to carry out the surgery,one team would concern themselves with the stomach whilst the other worked on his throat.The surgeries were successful,in fact,Doctors from around different hospital in Glasgow just had to come and visit Robert who by now was christened Lazarus.One day whilst Robert was still in hospital recovering,his son phoned me.He told me he had entered Roberts room in the hospital to see him dressing himself to leave the hospital,turns out it was by only Roberts volution,his son pleaded with Robert to go back to bed until his Doctors gave him permission to go home.Sadly Robert took a serious chest infection which in his weakened state was unable to shake off.Robert passed away,it was my heartfelt pleasure to be invited by his family to give the eulogy at his furneral service.I said Robert died cancer free,he had become the longest surviving dual lung cancer patient in the UK,having surviving both SCLC and NSCLC for almost 20 years.

I joined LUNGevity soon after I completed my LC treatments and have enjoyed writing here,although not as often as I once did.You see Lou,lung cancer treatments have advanced so much since I was dxd in 2008 I am now a bit of a dinosaur to supporting new arrivals to LCSC with regards to treatments,but it does give me some pleasure in being able to support people like yourself with some of my experiences.Robert is my hero,by his spirit he lifted me out of my anxieties about my cancer all these years ago and I hope his life with cancer will inspire you. 

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Hi Lou,

Its a pleasure to meet you,I am happy to chat with you anytime it suits you.I did travel around the USA on Amtrak in 2011 for 7 weeks,with the encouragement Of our dear friend Katie here, I kept a daily diary of my adventures,you can still find my diary on my website Travelling Eric.I have also a couple of films in You Tube, one of my LUNGevity charity walk around Lincoln Park Seattle,where at the end of it a microphone was pushed into my hand and asked to give a little talk about myself, it comes under the heading Eric Byrne Lung Cancer Survivor. Another film was Eric Byrne Stop Smoking where some students in the college I taught in were filming something called Healthy Working Lives,they asked me if I would agree to be filmed for the series,well we must support our students,so i guessed it would take the form of a Q&A interview but no,they just set up their camera  and a microphone and said,Eric,tell us about your cancer journey.Well,its unprepared,unscripted but I did my best to encourage the viewers who do not smoke not to start and those who do smoke to stop.Its really been my mission as well as speak up where ever I can in appeal for better LC research funding.

Best Wishes,

Eric

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Eric,

I saw your YouTube video (the Stop Smoking one...the other didn't come up in search) and what a story!   I can't even imagine having so many things thrown at you all at once and how you still managed to keep it together.  I see something in you and people like Robert Lowe, LexieCat, Bridget, Curt and others whose postings I've been reading, and that is COURAGE!  I don't mean to say that folks weren't nervous or scared, but how each of you went through your journey (and I believe we go through much of this journey internally) with determination, hope and strength.  It's very inspiring to me.  Even though I went through colorectal cancer and a resection in 2010, cancer of the lung just has a whole different meaning and set of emotions it evokes.  Prior to joining this site I seemed to obsess about who will care for my wife, I won't see my youngest daughter marry and just wondering when the next "shoe would fall".  Now I'm focusing more on prepping for surgery (thanks for the pillow tip Lexie), how I'm going to workout post-op and getting my head on straight.  Like you, I just wanted to be the father, grandfather and (in my case) husband my family deserves.  

Thanks so much for the great stories and testimony.  BTW, when I read your writing I feel like I'm reading a well-written book.

Lou

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Let me start by saying Happy Easter, Happy Passover or just Happy Day to my new friends here.

I just want to let you all know how much your posts (here and in other chains) have helped to keep me focused and calmer during this time.  I'm now 11 days away from my surgery (wedge and likely lobectomy) and, as you all surely know, it can be a trying time.  But all the stories I've seen here have really helped.  I have a Pulmonologist appointment tomorrow and pre-op testing next Tuesday.  I've written out a number of questions for the appointment and what I've read here has helped me to form many of them.

Once I have the surgery I'll get an update to everyone here.

LouT

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Thanks Michelle. I've been reading some of your posts on recovery.  I'm not a runner or a rower but I do 4-6 miles 6 days/week and weights 4-5 days/week to try to stay in shape. My years of smoking (I quit over 15 years ago) have stolen some of my capacity (although I have pretty good capacity now) and I'm concerned about how much more I'll lose from a lobectomy, so I'll be watching how you and the others are doing for motivation. I'll also add my progress (when I make some).  😊

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It sure isn't offensive to me, thanks.  I pray for the folks I've met here as well.

Lou

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