New - Scared

[Barbara H.]

Hi Everyone, 

I've read all of your stories, you all seem so  brave and grown up!!!  I'm a 56 year old baby.  haven't had a  blood test  in over 30 years (and I only got  it  because I was getting married   )  So, family and friends wouldn't stop about  how I needed at least a Primary physician and some tests.  Finally went to one, and  figured since I'm there I'd mention that I read about a  Low Dose CT scan (no needles) and I asked him if  I  could get one since I've been smoking for about 42 years.  Well,  they saw a nodule, so got a PET scan and I have a 1cm nodule on  my lung.  Next week I'm going for a Wedgectomy (is that the  right word?) with the possibility of  a Lobectomy depending on the results after  they take the first chunk out.

I'm petrified of the  pre - op blood tests I need to get  on Friday (can  you believe how pathetic I am?)  Secondly, I'm afraid of the  chest tube removal, there's not many stories  online about the removal but the  3 or 4 I've found say it is  HORRIBLE!!!!!  Thirdly, I'm afraid that I  will need daily blood thinner injections.

 

It helps me, I think   , if  I  know exactly what's going to happen.  can someone share their  experience???

 

and thank you all for the help you didn't even know you gave me thus far!!!  ❤️    and best of luck to each of you on your  individual journeys.

 

 

[GaryG]

Hi Barbara: Welcome to out group.  Since you started smoking at the age of 14 I hope you find the strength  to quit now. I smoked for 10 years and regret every moment.

First things first.  Do we know if the nodule is cancerous? Where is it located?  In any event, I would suggest finding a cancer center and let them do  all the testing necessary to determine your condition. Relying on a low dose scans might not be wise. Also don't sweat the small staff like tubes and needles. The nurses and doctors are so well trained they can do those things in their sleep.  Wish you the best.

[Mamma Om]

Dear Barbara, I had a chest tube in place for 5 days following a lower right lobe removal. It did not hurt at all! The trick is to let yourself go limp, no tensing up of muscles. Take a few deep breaths. Don't concentrate on expecting pain; think of something pleasant like the taste of a hot fudge sundae or the smile of a grandchild. It's over in a second. I also have a stomach tube in place one time for 6 weeks! So you don't know what you can put up with until you have to. You should use the same mental techniques for blood draws; you'll be having lots of them in future, depending on your prognosis, treatment plan, etc. Also, ask your provider for referral to some counseling and/or anti-anxiety meds to help you get through  it all. Your fears may be too high to use these suggestions. Most of all, though, rely on your own strength, your desire to be well again, and the trust you have in your medical people. You can do this!! Mamma-Om

[LexieCat]

Hi, Barbara,

I'm assuming the PET CT showed uptake (lit up), which is why they are proceeding with surgery. It honestly is not a big deal--I was back at work and out with friends 2 weeks after my lobectomy.

The chest tube removal (and I had to have another one put in because of a complication), was not a big deal AT ALL. I honestly don't remember feeling any pain at all. Maybe a sharp twinge--that was it.

Yes, you will get some pokes and sticks for blood tests, IVs, etc. Not fun, but again, very little pain. If you tell them you have a fear of needles they will do their best to minimize discomfort/fear. 

I've never known anyone who needed blood thinners--what makes you think you will need that? Usually they want you to STOP any blood thinners before surgery to minimize the risk of excessive bleeding.

Are you having VATS surgery? That's quite simple. My C-section hurt way worse/longer than the lobectomy did. I was home in a couple of days (had to go back in for an unusual complication but most people don't have the air leak I had, but I was out again in 3-4 days). Honestly, it is not that bad. 

It will all be over before you know it--seriously. 

[LexieCat]

Oh, a couple of other tips--try to pick up a wedge pillow. It will be easier for you to sleep right after surgery if you are elevated. You can expect to have a lot of coughing for the first few days after surgery. They will give you breathing exercises (and a couple of devices to help with those)--do them, even if they are uncomfortable and make you cough. They WANT you to cough--it will clear your lungs. And the exercises will help restore your breathing capacity. 

And one of our members, Lou, put together a really good list of tips/tricks for surgery: 

 

[Tom Galli]

Barbara,

Welcome here.

First things first, most of us receive a surprise lung cancer diagnosis. Second and thankfully, lung cancer treatment has improved dramatically in the last 3 years with the introduction of many new and effective treatments. Last, I had a surprise diagnosis in 2004 and had my right lung removed and a year's worth of surgical complications, then 2 years of additional treatment. Bottom line is if I can live, so can you.

You've already met some of our members and will likely meet many more. I've lost count of the number of chest tubes I had installed and removed, but I didn't feel a thing. Lexi suggests Lou's Thoracic Surgery Tips and Tricks to get you ready for your procedure. This a complete and informative resource. Here are some others. For IVs and blood draws, read this. For general tips on how to survive lung cancer, you might review this.

Here is a passage from a book I wrote about my lung cancer treatment that describes my first chest tube removal: "I do clearly recall what transpired on the cardiopulmonary ward.  Encumbered with tubes, my first recollections were of their removal.  The nurse short counted me on the catheter, telling me she’d remove it on the count of three but pulling it quickly after announcing, “Two!”  Then Dr. Cheung and his physician assistant came in to remove a chest tube.  I asked if it would hurt, and he assured me it wouldn’t; but the physician assistant held the circular suture while Dr. Cheung grasped the tube, and they short counted me again!  Fortunately, other than a slight tightness from the suture closing the drain hole, I felt nothing."

We are all petrified by the thought of lung cancer treatment. Everything is new, hard to pronounce and even harder to understand. That is why this forum is so important. We are a community of actual lung cancer survivors who have first-hand experience with every treatment you might receive. Ask your questions. Someone here will have a definitive answer.

Stay the course.

Tom

[Barbara H.]

you guys are wonderful!!!!!!  Now  to answer some of your questions, then I will read your suggested reading material     so happy so  far to hear about  your experiences with the chest tube.    My Dr. also said "it's a bit uncomfortable"  when I told  him the 3 or 4  stories  I was able to find on the internet.  Still puzzled why I can't find more about it  when I google "does the removal  of a chest tube hurt?"   

 

Gary G.:   The nodule is  located  in  the bottom right lung.  They don't know if it's cancer or not, but since it "lit up" on the PET scan, the Dr. said "it shouldn't  be there"    So, as far as testing after they found the suspicious nodule on  the  low dose CT scan, has  been a PET scan and a Pulmonary Function Test.  They will first take out a wedge of lung and  while I'm  still under  anesthesia they will do a  biopsy.  The Dr. said "I don't want  to  put you through a brochoscopy because of the  location"    Thanks for calling the IV, tubes and  blood tests as  "small stuff"  I totally understand that they will be the least of  my problems through all of  this.  I just can't get myself to believe it.  I was amazed  at the guy who injected the contrast for the PET scan, I didn't feel a thing, and I wish I can carry him  around with me for the rest of my life and have him do all the "needle stuff" I may need, because he was AWESOME.  Now, instead  of me thinking, "that wasn't bad, I can handle more needles"  my brain says "you got lucky, that guy was good, the next won't  be"  GRRR!

Mamma OM:  thank you!!  I tried therapy years ago,  didn't really do anything for me.  I've  also tried  Xanax, and it's funny, the  Xanax doesn't kick in until the procedure is over... hahaha, I'm so  afraid that the Xanax doesn't have a chance till I  relax.  I pray that I can tolerate as much as you guys  with the chest tube, and I'll  be  pleasantly surprised.

 

LexieCat: Thank you!  The people that will be injecting me or  taking  blood, will sadly know I'm afraid.... One side effect of being ME, is that  I  will freely bawl my eyes out.... UGH!  it's so embarrassing, like I'm a toddler!!!!  Yes, the PET scan "lit up" on the nodule, and he said there was  some lymph node activity but wasn't sure if that was anything, that's why he's going to do a Wedge removal  first.   Initially, they were just  going  to remove the nodule and test that, so  now they'll test a bigger section.   I thought about the blood thinners, because of my incessant Googling!!  it was someone story of their  lobectomy.  That''s when  i was like "OH NO!!  I can't have needles in my stomach and then do it to myself when I get  home!!!"   I thought it was all about preventing blood clots while  you're in the hospital.  My husband had them for his spine surgery, but he's pretty much paralyzed, so maybe it's only given when you can't get up and move around??  Yes, it's VATS  surgery, thank God!!!   will the wedge  pillow go under my head or my legs?  I have one that I bought for my husband, so I bet I could use  that.

 

[Barbara H.]

Tom Galli:  Thank you so much for your  response and sharing the  excerpt from your book, I am now reading the article you suggested.

I like that you said you had so many chest tubes and didn't feel a  thing.  I was  just surprised  that my Dr. agreed that  it wouldn't be  pleasant... I thought "why can't they knock you out  or  give you a good painkiller  then do  it?"   but if you all are saying it  didn't hurt that bad, it must be true!

[DebM]

Hi Barbara,

I just had a robotic lobectomy a few months ago.  I only spent a couple of days in the hospital.  I was pleasantly surprised when I had my chest tube removed, it didn't hurt at all.  I don't know why, but I had myself convinced that it was going to be terrible, and I didn't really feel anything at all.   

I have weekly blood draws related to chemo, and those ladies in the lab are so good that I rarely feel the needle go in.  

We are all scared when we are diagnosed and facing treatment.  Sometimes what we imagine is worse than things actually are

 

[LexieCat]

The wedge pillow goes under your upper body/shoulders. If you're like me, you also like to have your knees bent, and you can always stick a pillow under your knees to make your back more comfortable (though my back doesn't seem to bother me if I'm on a wedge pillow).

I think you will be very pleasantly surprised how simple this will all be. I actually have a video of a VATS surgery you can watch if you're curious and it won't freak you out (if watching surgery would upset you, don't watch). It's truly amazing they can remove half a lung through the tiny incisions they work through. I had three tiny incisions--I think the biggest was maybe 2-3 inches, the others only a cm or two. 

I know what you mean about wanting to clone the good phlebotomists--I have veins that are tricky to get. I had a recurrence and will be starting chemo soon (most likely) and I DEFINITELY plan to have a port so I don't have to struggle with the IVs.

You are gonna be just fine, believe me.

Oh, and the reason you didn't find much about whether it hurts to remove a chest tube is probably that it doesn't.  

[Barbara H.]

DebM:  that is  so  good  to hear about your experience  with the  chest tube, and I'm also glad that you thought it was going to be something  horrible as well.  That gives me a bit more  hope!!!

 

LexieCat:  part of me  would  like to  watch  the  video, part of me thinks ignorance is bliss      I want to  know everything though, so send it and I'll watch it  ( I think!!)

loved that you said  this  

Oh, and the reason you didn't find much about whether it hurts to remove a chest tube is probably that it doesn't.  

 

I thought about that when I was  searching and said "Nah, it can't be the reason there aren't  many articles  on that"   but also, why did my surgeon agree that it's  uncomfortable?

 

you had a recurrence??   so just because surgery is an option and they can get all the  cancer doesn't mean it won't come back again???  I'm sorry that  you had that news, but you sound so positive, does that mean your prognosis is  good?

[LexieCat]

Here's a link to the video: 

My lobectomy was three years ago (July 2017), and at the time it was Stage Ib. Since then I've had scans every six months. All have been good up until the most recent one. After a new PET scan, MRI, and bronchoscopy, it turns out I now have Stage IV. I had the option to have chemo after surgery. They don't generally offer it after Stage Ia, they always recommend it after Stage II or higher, but for Stage Ib it was a coin toss as to whether it did more good than harm, so I passed on it. Now, of course, I wish I had gone for the chemo, but even with that there are no guarantees. Lung cancer is tricky and sneaky. There's always some risk it will return. Regular scans help increase the likelihood any recurrence will also be early.

I'm not thrilled about the recurrence, but I know how well many people on this forum are doing during/after their treatment for advanced cancers. I prefer to believe/hope I'll be one of the people who responds well to treatment.

[LexieCat]

Here's  link to the wedge pillow I bought:

https://smile.amazon.com/gp/product/B00PR1BIVW/

 

[Barbara H.]

Thank you LexieCat... how  the heck did it  get  to  be stage 4 with regular scans???  

 

buying the pillow! thanks again!!!

[LexieCat]

Apparently I have a particularly STEALTHY cancer. LOL, I just made that up. Well, the scan previous to this one showed a bit of "consolidation," which isn't all that concerning, apparently, on its own. I've had a couple of lymph nodes that are large-ish for a while without change. So what they noticed on this last scan is that the the consolidation had increased in density, which was suspicious. That's when they ordered the PET CT scan and the tumor and several lymph nodes lit up, as well as a spot on my sacrum. It's the spot on the sacrum that makes it Stage IV. If it were just the tumor and lymph nodes it would be Stage III. One of the treatments we're considering would treat it aggressively, as if it IS Stage III and then radiate the sacrum. But first we have to get molecular studies back to figure out the best course of treatment.

[BridgetO]

Hi Barbara and welcome. Good for you for getting the low dose CT screening! I didn't have any pain with the removal of the chest tube either. I was expecting it to hurt--I probably read the same things you did. I didn't feel a thing, actually. I was waiting for the doc to pull out the tube, when I noticed he was putting bandage on the site and I asked "Is it out!?" and he confirmed it was.

I had a lower right lobectomy and it was fairly easy as surgeries go. I was sent home the day after surgery with a chest tube and drain bag in place. I think this is unusual. Most people stay in the hospital until the drain is taken out,  which is when the air leak stops. I had a particularly persistent leak, so  I had the tube in for 10 days and I'm glad I didn't have to stay in the hospital all that time. 

I got around fine with the tube and bag. I was out walking around my neighborhood a couple of days after I got home. I wore an oversized raincoat to cover the tube and bag. It wasn't raining and I wondered if anybody thought I was a flasher.

In the hospital  they'll encourage you to walk around the unit, probably starting the same day as the surgery. Walking as much as you can will help your lung capacity and will also help avoid blood clots in your  legs.  

Hang in there!  Some people have already given you great advice-- Lou's list is especially good.

Bridget O

[Barbara H.]

Thank you again LexieCat:  I'm praying for you!!!  Love the STEALTHY part!!!     so is this Dr. blowing smoke up my butt by saying this surgery will get it all?  how can he make that claim when it can just pop up somewhere else?

 

Bridget O.  Thank you so much for sharing your story about the chest tube.  and yeah, I bet you did read the same stories online!!!      I'm hoping you all just don't have a real high tolerance for pain!!!! 

[LexieCat]

Not at all. There was an excellent chance that my surgery would have "gotten it all"--that was the intention and, after 3 years, everyone thought it was likely to have been successful. But no matter what kind of treatment you get, they will schedule regular scans--probably twice a year--to make sure it stays gone. However likely a "cure" by surgery (with or without chemo) is, there is always a chance of recurrence. Just stay on top of those followup scans. That's gonna give you the best possible shot.

[Barbara H.]

Thank you Lexie Cat!!!  ❤️ 

[ColleenRae]

Hi Barbara,

I, too, want to congratulate you on getting the lung CT... No, the news is not good to hear, but much better than having a cancer there you are not aware of!

I had a lobectomy in Oct 2018 of my right upper lobe. I ended up with Stage 1a, adenocarcinoma NSCLC and fortunately did not require any additional treatment at that time.  I, too, was really freaking out about the chest tube - I'm sure I read somewhere that it was extremely painful when it was removed. For some reason, that really stuck with me and frightened me as well - and I worked myself up into an anxious state over it prior to surgery. It really was a waste of energy to worry about! I had surgery on a Monday and went home on Thursday. I'm trying to remember (that should give a bit of a clue, not a very memorable experience!) but I think the chest tube came out the day after surgery. I was still fairly well drugged at that point, but I remember getting very anxious and even a little belligerent with the P.A. who came to remove it.  She was talking about sending me home, taking out the tube, etc. and I remember yelling that I did not want to be discharged early, etc.  In any case, I was not very cooperative, but she pulled the tube and it was over in a flash. I don't recall feeling any pain (that could have been the pain meds) but there was blood that splattered - but don't let that freak you out.

It's a good thing you found this and you will know more once you have a pathology report.  I was scared as can be but overall things went fairly smoothly. I had to return to the hospital about 2 weeks following my surgery for a pleural effusion (they had to drain fluid from my lung - no anesthesia - right in the Dr's office - it really was a piece of cake and made me feel much better!). I think my recovery took a bit longer compared to what some people have experienced here, but I was walking 90 minutes a day shortly after the surgery.  Walk and keep walking! It helps so much both mentally and physically!

I have been getting scans regularly (about every 6 months) since the 2018 surgery. My surgeon felt the surgery was very successful and deemed I was "cured". Well, I've learned that can mean many things. Five months after the surgery another small suspicious spot showed up in the upper left lung. We've been watching it. It's grown from 5mm to 8mm but is remaining stable. They suspect it is another slow growing cancer and it will likely need to be treated with radiation - so I am, once again, trying to educate myself and not be afraid of what I don't know. What I think we all need to keep in mind is that a cancerous nodule may be removed successfully and "cure" that particular area of one's lung, but that does not mean the cancer won't find another area to develop in.  That is why continued follow-up with your doctor(s), CT scans, etc. is vital.  I firmly believe if we can catch cancer in the early stages we can keep it under control and even possibly "cure" it - adding to the quality and length of our lives. I don't want this to sound judgemental, at all, but do try to quit smoking if you haven't. I smoked for close to 40 years and quit cold turkey six months before my lobectomy. It was very hard the first few days; I'd always used smoking as a crutch for stress. My lung capacity is still quite good but I can tell my breathing has changed. I can't stand the smell of smoke now. I'm angry with myself for smoking for as long as I did, but so grateful I stopped.

Wishing you the best and so glad you are finding support and information here.

[Barbara H.]

ColleenRae:  Thank you so much for sharing  your experience especially the  chest  tube part    

about the smoking.... I  used  to smoke  20 per day, since 7/25 I've been smoking  1 per day.  I take drags and  put the one cigarette out all day.  I  know this is ridiculous, I just can't seem to "let  go " completely.  I'm very close, but no cigar (hahahahahah)... 

how did you get pleural effusion???  how  did they drain it  right in  the  office and you're  saying there was no pain????  

yeah, I didn't like how  he used  the word "cure" and you make perfect sense that the  surgery can cure that one spot!!!

 

Can I ask  what you wore when you were  discharged from the  hospital?  I'm sure we can't wear a bra, but I'm wondering if my only choice for a  shirt would have to be  a  shirt with buttons???

 

[LexieCat]

Pretty sure I wore a T-shirt.

[ColleenRae]

1 hour ago, Barbara H. said:

ColleenRae:  Thank you so much for sharing  your experience especially the  chest  tube part    

about the smoking.... I  used  to smoke  20 per day, since 7/25 I've been smoking  1 per day.  I take drags and  put the one cigarette out all day.  I  know this is ridiculous, I just can't seem to "let  go " completely.  I'm very close, but no cigar (hahahahahah)... 

how did you get pleural effusion???  how  did they drain it  right in  the  office and you're  saying there was no pain????  

yeah, I didn't like how  he used  the word "cure" and you make perfect sense that the  surgery can cure that one spot!!!

 

Can I ask  what you wore when you were  discharged from the  hospital?  I'm sure we can't wear a bra, but I'm wondering if my only choice for a  shirt would have to be  a  shirt with buttons???

 

You're very welcome... Wish I didn't have this experience to share but glad if it helps you!

Smoking...Don't beat yourself up. It is very hard to stop a habit that was, for me, part of my daily routine. You've cut down a huge amount! Be proud of that. I just had to go cold turkey as I knew I could not wean myself off of cigarettes. I had to say goodby completely. I continued to smoke for quite a while after I first learned I had nodules. It just took me a while to reach that point where I realized I wanted to have as much control over my life and the outcome of cancer as I could.  Ask my son how it was to live with me the first 2-3 days I quit... He literally hid in his room. I cried a lot. I had a whole new appreciation for those trying to overcome any addiction. But as the days and weeks went on, I felt stronger about myself and each day got easier. I really never noticed any difference / improvement in my breathing though. The only thing I have not liked as a consequence of quitting is that I gained weight. I probably needed to put on a few pounds, but I gained about 25 lbs after quitting smoking and the year after my lobectomy.  There is a stop smoking cold turkey facebook group - I think it's called Why Quit - that offers some inspiration and links to help:  https://www.facebook.com/groups/whyquit/

Pleural effusion - I believe this is a risk following lobectomy; won't happen to everyone. It did not recur again. I am not sure why it happened, but within two weeks of being at home I started noticing my breathing / chest felt heavier - and between my shoulder blades - especially when walking. I called my doctor's nurse and they had me hop in a cab (I couldn't drive at that point) with my son and we headed for Seattle. I was in a regular exam room; had an x-ray and they confirmed the pleural effusion. I couldn't see what was done - it was all done while I was sitting on the exam table and the Dr. worked on by back. I barely felt the needle that was inserted, and they drained the area - I could see a thin tube fill as the fluid was removed. The Dr. thumped a lot on my back as he did it - that was more annoying than painful. It really did not hurt at all and I did feel better / breathing felt much more natural.

I brought some pj's that could pass for casual wear when I was discharged. No, you won't likely want to wear a bra. I was able to wear a camisole (I bought a larger size so it was loose) with a loose fitting pull over pj top and loose fitting pants. I forgot slippers and my son brought my hiking boots (?!). He was a little stressed at the time. I was comfy as can be on the ride home (and felt so stylish after being in a hospital gown for days!) You won't need to wear a button shirt. I had no problem taking a shower alone before I was discharged, putting my arms above my head, etc.   I was afraid to remove the bandage when I got home and was very pleasantly surprised to see how neat, tidy and clean all incisions looked. Much much better than I had anticipated. You will be fine!

[Barbara H.]

oh!!! so you could  lift your arms.. .that's good to  know, my boss (a woman) just had  me freaking  out that  I  better think of what to  bring to  wear  home etc.  etc.  Thanks LexieCat!!

[Barbara H.]

ColleenRae :  Thank you again!!!  and  that's for this:  ( I need it!!!)   There is a stop smoking cold turkey facebook group - I think it's called Why Quit - that offers some inspiration and links to help:  https://www.facebook.com/groups/whyquit/

 

do you think it's an issue that I'm still smoking  one cigarette a day?  my surgery is scheduled for Tuesday morning.

I have  a HUGE fear of  Drs. and  needles... that's what  I'm  having the most  trouble with,  I have  to have  a blood test on   Friday, and would  you believe I haven't had  a blood test in over 25 years???!!!  so that's  freaking me  out...  and of course the  chest tube removal     and now Pleural Effusion!!!!    

so happy to  hear I can lift my arms  to put on a  regular shirt!!!  now  I don't have to  stress  about  what  to wear home.  Did  they let you at least put sweats on while you were in  the hospital?

 

sorry for  all the  questions!!!  but you all have  been  SOOOOOO helpful!!!