bjacksontex

Hi Everybody,
I made it and am back home today. So here is how it went.
When I first got there the doctor told me me they were going to anesthetize me the first do a CME, where they make a incision in your neck and scope to biopsy my mediastinal lymph nodes. If they had been positive for cancer that was as far as they would go, no lobectomy.
When I woke up my family relayed to me what the doctor said.
All lymph nodes were negative.
He did a complete upper lobectomy.
He also did a lower wedge resection because the PET showed a suspicious nodule, it was benign, so no cancer there either.
The 3.6cm cancer was removed in the upper lobe.
He told my family that I will not need follow up chemo because they got all the margins.
Just going to be honest, I had a really bad day yesterday. They did not give me a morphine drip so I was taking Norco by mouth and Toradol by IV, in a lot of pain (to be expected) I had a reverse reaction to the narcotics, I was very wired and had been awake for 40 hrs, it was only late last night that I could get 4 hrs sleep sitting up (after asking for Xanax) this morning I refused more narcotics and went to Tylenol.
Yesterday I was throwing everything up, even water, they thought I had a Ileus, did a stomach xray, didn't get the report but it resolved overnight and today ok.
Still having a lot of reflux figure it is from the scope, got lots of Halls lemon cough drops for throat.
They sent me home with Tramadol which I will tolerate better. Doesn't get rid of the pain but after major surgery nothing but time will help.
They removed my chest tube yesterday and no it sure wasn't pleasant but afterward felt much better.
I feel pretty good considering, the worst pain is my neck, chest, where they scoped me.
They also told me they had to use a larger intubation tube for my procedure so I'm sure that is also why it's pretty painful.
Before I had my surgery my oxygen levels were 97/98 during the day without oxygen, today they are 95/96 without oxygen so all my worries about being on oxygen 24/7 because of getting the lobectomy with COPD were unfounded.
I want to thank you all for your prayers, support and encouragement.
I will do everything they told me to post op so hopefully will heal quickly.
Blessings to you all!!!
Rhonda

Kerry,
 
Welcome here.
 
It is hard to read about survivor statistics.  But, cancer survivor statistics are a very imprecise predictor.  Consider, the statistical inputs for each person newly diagnosed are: type, stage, age, sex and race.  No information is captured on a person's general health.  Moreover, when someone in this pool dies, there is rarely an autopsy to determine cause of death.  Indeed, one might be hit by a bus.  So there is a lack of precision on both ends of the statistical cycle: input and output data.  This explanation is not to criticize the medical community for their adherence to statistical principles, but rather to point out the difference from a statistical prediction and reality.  You are one of hundreds of thousands in the US who were diagnosed with stage IV adenocarcinoma.  A statisticians job is to aggregate (combine) and explain.  But the output, a prediction, may not necessarily apply to you because you are one of the variables being statistically analyzed and the prediction applies to all of the variables.  There could be a vast difference between your outcome and your statistically predicted outcome.  There was with mine.  Check my profile for my survivor story.  Also, listen to Stephen Jay Gould's essay The Median is not the Message - here:  http://www.youtube.com/watch?v=cH6XuiOBbkc 
 
My Tarceva rash made me look like a zombie with terminal acne.  I took it in combination with Taxol Carboplatin which claimed my hair so my head, face and neck looked like a creature who crawled out of a swamp.  I led a multibillion dollar proposal team while on Tarceva and had to "suit up" and make many customer presentations.  We won the competition so my appearance didn't matter.  People get cancer.  They undergo treatment.  I think my customers knew of my malady (bald with no eyebrows or eye lashes were a big tell) and respected my attitude to soldier on.  That indeed is the point - your attitude toward treatment and outcomes - not what other people think about your appearance.  In my day, physicians didn't realize that Tarceva didn't work on my type of NSCL squamous cell lung cancer.  So I was burdened by all the side effects without any benefit.  But, I am still here!  And I am here for a reason!  Two influential people convinced me that my attitude towards treatment and outcome was essential in arresting my disease.  Consider, the most important side effect of cancer treatment is extended life.  I believe the length of extension is directly proportional to the firmness of belief.  Focus on the most important side effect - extended life.  Believe, strongly believe, tenaciously believe your treatment will achieve extended life.
 
Stay the course.
 
Tom 

Barb,
I love your humor!!! I try to keep mine too, it helps the family cope better, especially my 38 yr old son who was just devastated. My dad died @ 65 with LC and my mom @ 59 with LC, so that has been the only experience my son has had and all he could see was losing his mom.
No, it don't sound like you breezed through your surgery at all, OUCH!! I am so thankful you were a candidate like me for surgery, so many are not able to have surgery, also that your surgery was a cure for you, what a blessing!!! I am also very blessed in mine being found early.
I am sure going to take your advice about texting while on those heavy drugs Mine is upper left lobectomy and I'm left handed so thinking I might not be too comfortable texting for at least for a couple of days.
Thank you for your encouragement Barb!!!
Will update as soon as I'm able.
Blessings,
Rhonda

Barb,
 
I second the emotion - texting on pain meds can be embarrassing. I can hardly hit those small keys when wide awake.  Imagine my impaired text.
 
Rhonda,
 
Stay the course.  Let us know how you are as soon as you are able. 
 
Tom

Rhonda, I didn't exactly breeze through. I had some complications. LOL! And I had my sister take pictures so I'd never be tempted to smoke again. I got something called Sub Cutaneous Air. So, was in the hospital a tad longer. 7 days in all. The Path report takes 14 days for results. So at least I only had a week after surgery for my results. IAN0M0. Stage one a, cured. I see them again for CT in May. They took so many dang lymph nodes, it's a wonder I have any left in my bronch area.
The docs get a feel for these things but are so careful. Oh, and for me, having the chest tubes removed was a weird but not painful thing. The second one I remember better. No pain. Just "whoosh." One guy did it and then took a stitch or two at the area.

Rhonda, I had a bunch of people praying for me. In fact, it was kinda a miracle it was found so early stage. I'll be praying for you tomorrow. Careful. Don't text on heavy duty pain pills. I did and I'm still blushing from embarrassment.
Hugs, Barb Jackson

Hi Rhonda! Are you having the surgery at Clements? Part of UT Southwestern. Mine was there on a Tuesday also. I didn't have VATS. I had robotic and there is a difference. Since they told me they do the robotics on Tuesday, maybe that's what you are having. My doctor is Kent Kernstine. The whole staff there is great. In fact, I had a doctor who did a couple of skin biopsies on me for a clinical trial. Turns out he's going to be one of the guest speakers at the Hope Summit. I'm going. You might feel up to going. I know I was much better by my 2nd week home.
Good luck this Tuesday. I'll be praying for you. Barb Jackson

Ralph, I too had never had any kind of surgery ( not counting my Vasectomy) or spent an overnight in the hospital. I was scared, which is a normal reaction. before the surgery i had Chemo and Radiation. To me those were worst than the surgery. I had the top lobe of my right lung removed and they took out a lot of lymph nodes. I was in the hospital for 5 days. I had 2 chest tubes and the catheter. They had to cut and move 1 rib. I was 65 years old at the time of the surgery. I had to take a stress test and some respiratory testing. I was lucky that I was a candidate for the surgery. Everyone told me to stay ahead of the pain. Don't be concerned  about taking too much of the morphine that they will have you hooked up to. There was no pain when the removed the chest tubes and the catheter. Believe me you will overcome any type of shyness that come with the care. The nurses have seen it all. they will have you up and walking the next day and every day that you are there. I had a visitor that couldn't believe that i did not have any type of breathing tubes. I was lucky that I had my wife help me with any type of washing up and other types of care. They use dissolving stitches so you don't have them removed. Again, don't try and be a hero. If you need medication then take them. (within reason). I would be glad to answer any questions that you have.
 
I am now 15 months cancer free. So far so good.
 
GOOD LUCK AND STAY POSITIVE.

Hi Ralph, this is a message that one of our LUNGevity friends was trying to send to you but her computer logged her out before she got a chance to post it. So she kindly asked that I post it for her. 
 
 
Hi Ralph,
 
After reading all of the comments, I have to say that you have gotten some top notch advise.
I love that most of them had little to no pain. Even after hearing that, it seems that you still have not scheduled your surgery.
​Maybe my tale will help. I had what is called a Pancoast tumor. Basically that means that it was way up in the tippy top of my lung.
​This actually helped me to find it relatively early, as it was compressing some nerves coming out of my spine, causing pain.
​Unfortunately, it was also growing up in between the vertebrae in my neck. I had to have chemo and radiation in order to shrink
it enough that it could be surgically removed. After I finished the treatments, the doctors needed me to wait 4 week
​before they could do a new CT scan that would show if the tumor had shrunk enough for surgery. All of the swelling had to have
a chance to go down for accurate pictures.
 
​I took that time to get away and planned a sort of "bucket list trip". Being a bird lover from NJ with not a lot of money
​but some pretty expensive wishes I decided that the closest "new bird" around that I could almost guarantee seeing
​would be a Puffin. They spend some time on rocky "islands" off the coast of Maine. I also had gotten a passport
​several years prior ~ ​shortly after moving in with my husband. I was determined that I "Would NOT die without ever
​having used my passport! So, since I knew that you must now have a passport to enter Canada, and Maine was
​MUCH closer to Canada than it is to NJ, we would also go there for 2-3 days.
 
​Just as we were approaching Canada my surgeon called my cell. The team had been looking at my various prior CT and
​PET scans and felt good about my being a good surgical candidate and wanted me to meet with a neuro/ortho 
​surgeon that they sometimes brought in from a nearby hospital. Could I come in Tomorrow?! No, I am 3 miles from
​the 2nd half of what may be my last vacation!! This is when they told me that he would be going on HIS annual
​vacation in a few days and they didn't want to wait the extra week because surgery always is done in the 3-5 week
​range and it could be very bad to delay much beyond that!!
 
Since we had driven and it turned out that they couldn't move the doc, ORs and several other things fast enough the
surgery was set for after the visiting surgeon returned from his trip. I had conveniently "blocked" the neuro IE spinal
​involvement and associated fears from my mind at some point during treatment and was in an unimaginable state
​of terror for the next several days. All I could imagine was that if I somehow didn't die on the table, I would be a
paraplegic for the rest of my soon to be miserable life!! Nightmares woke me every few hours, A/K/A any time I
managed to doze off for more than a minute.  
 
​One day my dear hubby was deep in thought and looking Very Sad ~ more sad than had become usual since this started. 
He didn't think I caught it when he wiped a tear​ away. When I finally got him to admit that he was upset and "demanded"
to know what it was about, he told me that he was very worried about the new surgeon. I admitted that I was too and asked
him to explain further. He said that he was terrified that the surgeon would examine me and the new CT scan that he was
having done just before our "get to know ya" appointment, and decide that I was not a good candidate for him to operate on.
WOW!! My mind did the fastest 180 in the history of surgery!! Now I not only Wanted the surgery, I was also terrified that I would
be turned down for it!! My head was spinning! So to speak 0_o
 
​Thank God he took me on! It wound up being what was basically a "two for the price of one" surgery. The ortho/neuro
​doc came in first and removed approximately half of three of my cervical vertebrae in order to free the remains of the
parts of the tumor that had woven its way in between the bones but had not yet actually touched the spinal cord. Once
he placed a rod in my neck to keep the vertebrae in place, he tagged in my oncologist surgeon and left. This guy removed
the top lobe of my right lung along with 2.5 ribs that the tumor was up against. It seems that anything the tumor touches
must go or it could have that one tiny little cancer cell on it that will grow into it making new roots and all sorts of bad
things could happen. It turned out that I had to have another surgery a year later to replace that little rod with 2 big rods,
one on each side of the spine. I joke that the kyphosis was due to my fat head being too heavy, but basically my head
started to tilt at a very bad angle and I needed stronger rods. That second surgery added about 2 inches to my scar.  
The original scar started on my upper back right down the center, starting at the point that would sort of be even with
​an imaginary line if you drew a line from where the neck meets shoulder on one side and went straight across to the
​other side. It goes down to a couple of inches before the bottom of my shoulder blades and begins to angle off to
​the right so that it goes under the shoulder blade and around the side to just below the outer side of my right breast.
​The second surgery added a half inch at the top and extended the straight part of the first scar down a little more
​than an inch. I don't remember the total number of inches that the first scar was, but the visiting nurse that they sent
​to my house to make sure the wound was healing well, measured it with a paper tape measure on her first visit. I know
​that it was over 20 inches ~ 26? 28? whatever, it doesn't matter.
 
I am not telling you all of this, and bringing too much of it back to the surface for myself, to scare you!! It is to prove 
a point. As terrified as I was of each of the parts of that first surgery, there was NO CHANCE in a scary, fiery place,
that I would wait a minute longer than I had to in order to get that Blankety-blank-BLANK tumor out of me while the
doctors said that they could and would do it as safely as possible!!!!
 
This coming March will be FIVE years since my diagnosis and August 15th 2016 will (God willing!!) be 5 years that
​I will be CANCER FREE!!! After each scan ~~ I still go twice per year ~~ I announce to anyone who is a "friend" on
​Facebook that I am still N.E.D. a/k/a No Evidence of Disease. As soon as the oncologist tells me that the scan
​"looks good" I breathe the deepest sigh of relief in my life! Yes, each scan is a bigger sigh. Each scan that comes
​up NED gives me a feeling of not just relief, but of joy and hope that I will now survive until the next scan with NO
​cancer in my body!!
 
I  told you all of this because I believe that if the doctor feels that you are lucky enough that he/she can remove
​those hideous cells growing one atop the next, and that it sounds like you feel she/he is telling you the truth, and you
trust him/her to do this well, that you should HAVE  IT DONE. And done sooner rather than later. As I found out,
sometimes the window in which the surgery can be successfully done is small, and postponing can be dangerous,
sometimes even deadly.
 
I will tell you that I did have pain, I did have two chest tubes that stayed in for a couple of days, and I did have the
wonderful pump that will give you as much pain meds as you want as long as you don't exceed the limits programmed
​into the computer on the pump. Because my surgeries took nearly 18 hours, you could say that I wasn't up and
​walking until the day after surgery, but it felt like the same day to me!! LOL! I was in there for a week and I hated
it! But I would do all of it again!! I hope that I didn't cross any lines or go "too far" in spilling my story in so much
"gross detail" for you or anyone reading. I have just seen so many great people stolen from us far too soon by this
​horrible cancer!! Too often it is found too late and there is nothing left to do but to "make them comfortable" and I
just can't stand that so many people are robbed of some beautiful things in life by cancer that might not have done
so much damage if only if only it had been found sooner!! 
 
Sorry about all of the "run on sentences" too!! When I get going..... OY!!  And yes, I do laugh, at myself and pretty
​much anything worth a giggle, because I STILL CAN!! I hope you get the same feelings some day soon!
 
All the best!
Mary
 
 
 
 
 
If  you have lungs, you can get lung cancer. If a cough doesn't go away, or shoulder/back pain can't be linked to an injury, DEMAND a chest x ray or CT scan to rule out cancer. EVEN if you never smoked.
Dance like nobody's watching - Love like you'll never get hurt

Ralph, do you have an idea about the kind of surgery? I had a nodule in my right lower lobe about your size. 1.6 that they found early Sept. 2015. After all the tests and typing & staging, surgery was done at UTSW in Dallas the end of Oct. 2015. It was a minimally invasive robotic surgery. They removed my lower lobe and right now, no further treatment is necessary. Doctor says I'm cured. Of course, there's follow-up. But I wanted that thing out of me pronto. It's not bad at all. There was no collapsed lung. No agonizing pain. Your mind right now is your worst enemy. Hell, the worst part for me was peeing in a tube the first day. Ha! A catheter. But you don't feel it. It's just kinda embarrassing. Get it done Ralph!
Barb
Sent from my iPad using Tapatalk

Ralph,
What Cindy said is so right. Just get 'er done! Now, to answer your questions, no problems sleeping. Boy, they gave me Meds that took care of that & pain. Gabapentin was one good one I took morning, lunch time, and two at bedtime for 2-3 weeks I think. The first week home I got winded walking to the bathroom. My doctor ordered a walker & I used that. But every day it got easier. By the 2nd week I was not as winded. Walker no longer needed. By the 3rd week I went grocery shopping on my own. Just don't do it if you are still taking any pain Meds.
Getting in & out of bed was no problem. When they did the surgery they had me on my left side. The biggest incision is maybe 2-3 inches in my right armpit. There are 5 incisions in all on my right side and towards my back that are very small. Less than an inch mostly. So, not bad at all. You will also get an incision right at the base of your throat. Oh, and they used dissolving stitches for most of the stitches. That incision at your throat didn't hurt me at all after. It was for them to do the bronchoscopy & remove lymph nodes to check to metastasis.
They had me up walking the day after surgery.
I'm telling you, you will be kicking yourself later that you stressed so much. Honestly, for me, the worst part was the lack of modesty. Made me bitchy. LOL! And they lost the clothes I wore to the hospital. The surgery will be harder for your family. You, Ralph, won't remember much I'm betting.
P.S. Don't post to Facebook while on all those Meds in the hospital. Even I can't understand what I was trying to say. Ha!
Barb

I'm also attending and am looking forward to the experience.

I just signed up to go! I am so excited to be a part of my first HOPE Summit! 

See you there Barb! You may want to bring a warm sweater, or small lap blanket. The temperatures in the conference rooms can sometimes fluctuate. 

Wow, BJ! We almost had our surgeries on the same day! Congratulations on quitting as well. I guess that is a good reason to quit lol.

Hi Ralph,
 
I too was so afraid of surgery.  Except for an overnight in the hospital after early stage breast cancer surgery, I had never spent a night in the hospital either.  But, I decided the only way that thing in my lung was going away was if I got to the hospital and did the surgery.  It was terrifying to me too-it was everything I could do to put one foot in front of the other that morning walking into that place. 
 
However, after the surgery they did a good job of managing my pain.  And they got me up in the chair the second day.  The third day they made me walk up and down the hallway.  After the first walk, I realized that the quicker I got my strength back, the sooner I could go home.  I walked all afternoon and evening that day.  I guess it worked because I was sent home the next afternoon.  Then, once home, I really recovered quickly.
 
It is scary, but take advantage of the opportunity to get that thing out while it's still small.  After that, then you can get on with life-
 
Cindy

My surgeon made it pretty easy for me. Quit or he refused to operate. So, after years and years of trying, I just quit that day. Sept. 11, 2015. Appleneesy, I'm sorry you couldn't have at least the VATS. But glad you and Sio have quit the smoking.
Sent from my iPad using Tapatalk

Ralph, do you have an idea about the kind of surgery? I had a nodule in my right lower lobe about your size. 1.6 that they found early Sept. 2015. After all the tests and typing & staging, surgery was done at UTSW in Dallas the end of Oct. 2015. It was a minimally invasive robotic surgery. They removed my lower lobe and right now, no further treatment is necessary. Doctor says I'm cured. Of course, there's follow-up. But I wanted that thing out of me pronto. It's not bad at all. There was no collapsed lung. No agonizing pain. Your mind right now is your worst enemy. Hell, the worst part for me was peeing in a tube the first day. Ha! A catheter. But you don't feel it. It's just kinda embarrassing. Get it done Ralph!
Barb
Sent from my iPad using Tapatalk

I'm signed up too. Looking forward to meeting other LUNGevity folks there. Barb J
Sent from my iPad using Tapatalk

I'm signed up too. Looking forward to meeting other LUNGevity folks there. Barb J
Sent from my iPad using Tapatalk

Sio-
 
  Welcome! Although I didn't have a VATS, I did have a wedge resection via open lung thoracotomy. I wish that I would have been able to get the VATS, but because of the area I live in, it was unavailable. My cardio-thoracic surgeon told me that down time for VATS is less than that of a thoracotomy. I was also a smoker and found it easy to quit once I found out I had lung cancer. I did find out that my lungs are what is causing my lung cancer because I have a condition called Pulmonary Fibrosis. But, even though smoking did not cause my cancer, I quit anyway. Congratulations on your HUGE accomplishment. I want to wish you luck on your surgery and I will be saying a prayer for you. We are all here for you! God Bless You!

I'm a Tricare for Life guy.   When I had problems finding practitioners, I went in person to their practice office.  In discussion with mostly the practice administrator, I'd ask if it was the practice and practitioner's policy to discriminate against retired service members, people who'd dedicated their lives to ensure their freedom.  I would follow that up with asking if they wanted to read about their practice in a letter to editor discussing how the callous and ungrateful medical profession treats its retired armed service population.
 
One practitioner agreed to comp my wife's treatments till he could get his Tricare status established.  Three others I visited also became providers.
 
I think the key is, to show up in person.
 
Stay the course.
 
Tom

Barb, I think the fact you had the good sense to get a scan shows how much awareness is increasing. Good that you caught it early, in much of the literature I have read it downplays the role of CT in SCLC screening. You are the first I have heard to catch it early through screening, you demonstrate the importance for getting checked if you have any concerns. I hope your recovery continues to go well.

Hey all, 
 
I am very new here, but very happy to see that you all are still in touch. Moreover, you still remember each and everything. I think I have chosen a good community to express my feelings!
 
God bless.

Hello,
I couldn't sleep and found this site!  I found out Friday (today is Sunday) that I have lung cancer.  I feel and have felt the 6-7 cm. mass in my left lung for awhile now.  I am told I have swollen lymph nodes found in the CT Scan last week Thursday.  I have not yet had the biopsy.  I have decided this weekend to change medical facilities to that of a teaching hospital here in Milwaukee.  I had a difficult time deciding to make this change before the biopsy as we are coming up on Thanksgiving week.  Should I change the appt. or keep it, and then change medical facilities after the biopsy?  Will a week matter?  How soon will the teaching hospital be able to get me in?  The more I research, the more frightened I become.  I try to get my thoughts off this new journey I'm about to begin, however, well, I am sure you all know!  I'm 59! I am married and have two lovely daughters and 8 beautiful grandchildren.  Everything has changed so quickly. 
 
I wanted to change doctor's even before I had my chest xray. The chest xray showed the mass.  It took almost two weeks to get the CT scan scheduled, which I finally had to call central scheduling and insist I get in.  So, I've lost some trust in the group I am working with. I was called on the same day as my diagnosis was given to be told how much the biopsy would cost and how much I need to pay.  Did I want to pay for this now, over the phone, or the day the biopsy was scheduled, which is this coming Wednesday, or, be billed.  I may be "old school", but, I couldn't believe they were calling me with this?  Is this the norm?
 
I feel time is running out, yet, I feel I'll get the best, proactive care by changing hospitals now.  But again, I don't want to loose time as the biopsy test is now scheduled for Wednesday, the day before Thanksgiving. 
 
Ideas/suggestions?
 
Beth