More Surgery/Post-Surgery Related Questions...Thanks!

[ColleenRae]

Hello!

This is similar to a previous post I wrote with questions re: surgery, but hopefully this will be more specific.  First of all, my apologies... I am a "worrier". I'm a great "disaster planner". What I'm finding is that I am not in control of as much as I would like to be with regards to all of this cancer business!  My VATS surgery is scheduled for Monday, 10/01.  I did finally speak with the surgeon's office scheduler, pre-registration and pre-surgery. No prior tests are planned. They don't feel an EKG is necessary and I have blood work from last July they feel is recent enough. I hope they're being diligent! My surgery will be outside of my home town (about 2 hours if traffic is good). I have transportation lined up a couple of days in advance - and a hotel/mini-suite for my son to stay in while I am in the hospital. We're arriving a couple of days early to help get him settled in (he is 20, high functioning Autism, does not drive), walk to the closest grocery store, make a practice tour of the hospital prior to surgery, etc.  It will be good for me to focus on him, I think, those couple of days.  I've been a bigger mess over all of this than I thought I would be.  I am still terrified, but can't decide if it's of the procedure, risks of the surgery or what I'm going to find out from the pathology reports.  NOT sleeping well at all. I am having a ton of pain in my shoulders and left arm (disc degeneration and arthritis) that seems to be getting worse, also affecting my sleep - and I'm concerned as I will need to extend my left arm during surgery/lay on my left side.  That may end up hurting more than the side they operate on!   Crying a lot it seems as well. Especially if I wake up during the night or first thing in the a.m.  I know I am extremely depressed and that it really draining both emotionally and physically. Trying to get everything in order at home but the only thing I seem to be doing well at is trying to walk a lot each day. I don't think home will every be completely clean and the fridge / freezer can't hold all that I'd like to have cooked in advance!

I have some questions for those of you who have gone this route before. They will probably sound trivial, but as I said, I am a worrier and keep thinking about a number of things, trying to know what to expect... Here goes:

1.  Have any of you had a mediastinoscopy performed at the same time that the VATS surgery was scheduled? If so, did anyone's VATS surgery get cancelled as a result of the mediastinoscopy results? I've been told that the surgeon will start with the mediastinoscopy, nodes will be rushed to pathologist for a preliminary dx - if no cancer showing, VATS will go forward. If there is cancer, VATS will NOT go forward.  I am really hoping no nodes are involved. I don't want to wake up from anesthesia to learn that only the mediastinoscopy could be done. I'll know what that means immediately...

2. Hygiene questions:  Were you able to wash your hair shortly after the surgery? By yourself?  Floss teeth? Shave?  I wear a mouth night guard... I hope I can wear that soon (in the hospital?) as my teeth tend to shift if I don't wear it religiously - I just got a new one and want to make sure it will still fit!

3. I am really freaked out about blood clots / DVT / PE's.... I have varicose veins / venous insufficiency but the surgeon did not discuss that with me (and I did not bring it up at our initial consult). I'm not really sure what to do to prevent this (apart from walking a lot after surgery?) 

4. I read another member's posts - who just had VATS - and they mentioned self-injections being needed at home??? I'd never heard of this before. Never read it anywhere else until I googled it (sounds like some medical clinics make this a routine practice when they discharge patients following lobectomy). My surgeon never mentioned this. How common is this? Have others had to do this as well?

So many of you on these posts sound so very strong... I've been told what a "strong person" I am by people in my life - but I'm certainly not in this particular situation.  I really am a mess. I do not feel mentally prepared for this procedure and the aftermath at all.  I'm trying, but really failing.  I'm exhausted just trying to get things taken care of here at home before having to leave.   Stupid things keep cropping up that take up way too much energy / time that I'd rather not deal with (i.e. our bank announced they're undergoing major changes the dates I'll be at the hospital and we need to change acct number for all auto-pay's I just set up so my son doesn't have to manually pay any bills; our Internet provider just raised our monthly cost by 41%!!! I spent 2 hours on this yesterday and gave up! Life is too short for this kind of stuff!).

I think one of the hardest things in all of this is that I don't know for sure if I do have cancer. It talks and walks like cancer, according to the providers, but only one of them has been willing to actually call it cancer and stage it.  The surgeon I have selected has been very careful to point out that this might not be a cancer... to ensure that I understand that going into surgery.  I hate the fact that I have to undergo this in order to find out. I wish there was a better way.  On the other hand, I'm more than willing to lose 1/3 of my lung to find out versus not doing anything, finding out it is cancer at a later date and waiting too long to do anything about it.  Life is never dull or without choices, is it???!!!

 

[BridgetO]

Hi Colleen, here are some answers to your question:

1.  I had 27 mediastinal lymph nodes removed as part of my VATS lobectomy. No separate incisions were done, so I don't know if this would be called a mediastinoscopy or not. I don't know if this was done prior to the actual removal of the lobe or not. I knew the surgeon was going to look at nodes, but I didn't know so many would be taken out..All were benign 

2. After the surgery I had no problem flossing my teeth. I can't remember how many days it was before I could shower, which would incllude washing my hair. Not too many, as I recall. I was discharged with a chest drain tube in place, so my ability to shower might have been delayed longer than most people's.  The first few  times I showered I used a shower bench  and had somebody standing by "just in case".  Can't remember if she helped with the hairwash. I suggest you be prepared  to not be able to shower or wash hair for a few days. You might want to consider  having some dry shampoo, especially if you usually wash your hair daily.

3. I wasn't really concerned about blood clots or DVT, but then I don't have any vein problems. You could ask the surgeon about this--he/she will probably come in to talk to you before you go to the OR. When I had major (non-lung) surgery before, they put on my legs afterwards those things that alternately constrict and relax that are meant to prevent circulatory problems (can't remember what you call them). But I didn't have them for the lobectomy. I was out of bed and walking around the unit the day of the surgery. I felt fairly perky and it wasn't a problem to et up and walk. (unilike for my other surgery where i was woozy and needed quite a bit of encouragement to get up and move. I  continued to walk as much as possible, so probably that helped avoid any problem.

4: I didn't have any self-injections after surgery and I don't remember anyone who has. During treatment for a prior (non-lung) cancer, I has self-injections of neupogen during chemo, but this had nothing to do with surgery. 

Here are some things I suggest:

1. Don't worry about house being clean or food being cooked in advance. It will all work out. Accept help from anyone who offers. If the offers are general, ask for specifics, such as "can you bring dinner on Thursday"  or "Would you be able to drive me to an appointment on Friday AM?. 

2. If you're not on antidepressants and you're still depressed after surgery, ask your primary care doctor about whether a prescription could help. I find an antidepressant to be really helpful to me and MANY others who have had cancer have also.

3. It's normal to feel like a mess. You're facing some big unknowns. We've all been there. I also didn't know for sure that I had cancer untl after I had surgery, though it was highly suspected that I did. Don't waste enery blaming yourself for how you feel. Just put one foot in front of the other and keep going.

Hang in there Colleen. You can do this!

Bridget O

[Joy Marie]

Hi Colleen.  I've been watching some you tube videos on vats lung surgery.  The best ones are from Am College of Surgeons.  The video called 'Your Lung Surgery - After Your Surgery' is good.  They point out if is important you brush and floss your teeth for good oral care as that helps healing process.    Joy

[Shelkay1]

Hi, this is Shelby (Shelkay1).I just had my VATS lobectomy on the 14th. It was done on a Friday & I was discharged on Monday. I will try to answer what questions I can based on my experience, but it is my understanding that no cases are the same. 1st thing I have to say is stop stressing over it; a lobectomy is your best option at beating this. If you need help with the stress/depression, ask for it! Do what you comfortably you can to get stuff done at home to make it more comfortable & keep yourself occupied now, but don't sweat the small stuff and ASK FOR HELP!

1) My medianoscopy was done about 6 weeks prior to lobectomy. It came back clean, surgeon said if anything came back in the lymph nodes, lobectomy was not doable. Chemo or radiation would be required 1st. I'd guess because of your family situation & distance they are doing it all at once for your benefit.

2) Hygiene can probably different in each case,too. My incisions were "glued" shut so after tube was out, I would have been able to shower as soon as I wanted; same with brushing my teeth. I maybe shouldn't say this, but I was in so much pain the 1st couple of days, it was not high on my list of priorities.

3 & 4) Anytime you have surgery, blood clots are always a possibility. The longer the surgery & the longer it takes for you to get moving, the greater your risk. They did use the inflatable things on my legs all the time I was in bed; when in the chair I was encouraged to rotate my ankles & tap my foot. It was me who was sent home on blood thinners. It is normal practice for my thoracic surgeon, I was told about it in advance. It is enoxaprin, I do it twice a day in my belly (very much like an insulin injection). They sent me home with a 4 week supply.

I do know I have cancer, adinocarcinoma. I also have histoplasmosis, a fungal infection. My cancer has not yet been staged, hopefully I'll get some answers Tuesday when I go for my follow up apt.

Lastly... just breathe... you can do this! I was told the alternative to dealing with this is dying with it. I'm not ready to let it have me without a fight.

 

 

 

[LexieCat]

Hi, Colleen,

I am normally a pretty sanguine/laid-back person, but I remember being very SHORT on patience the week or so before my surgery.  Just roll with it and let yourself be a little freaked out--it's scary stuff.  Just try not to get too carried away with it.  My bet is that as soon as you get through the surgery you'll feel much calmer and better.  

My nodes were just taken as part of the surgery--I don't think they were examined until afterward.  Mine were all non-cancerous.  

The nursing staff can help you figure out when/how to take care of the hygiene.  If you have to be a little "funky" for a few days, it really isn't a disaster.  You should be able to bathe with a washcloth and Bridget's idea about dry shampoo is a good one.  But it shouldn't be more than a few days at most before you can shower.  I had a home health aide come and give me a hand changing the dressings so I could shower.  You just want to avoid getting the incision wet.  The nurse navigator at the hospital made arrangements for the home health aide through my insurance.  I had just a couple of visits.

Dealing with the unknown sucks.  BUT keep reminding yourself that your cancer (assuming that's what it is) was caught very early, and you are in about as good a position as you can be in.  Do let the surgeon know your concerns about your arm position and circulation.  I had the inflatable things around my legs to maintain circulation till I could get up and around.  Unless there is a complication you won't be immobile for long.  Walking around is very good for you, and with VATS, you should have very little pain after the first couple of days.  I think I used the prescription (narcotic) pain meds the first day after I got home, and from there it was just ibuprofen.

Shelkay had to give herself injections with blood thinners, but that's not a normal procedure.  Chances are you won't be dealing with that.

Do your best to stay busy--stuff like dealing with the banking changes can help take your mind off some of the other stuff.  I had a whole bunch of little projects like that to keep me occupied so I didn't just sit around worrying.

You (and your son) will be just FINE.  I'd bet money on it.   

[ColleenRae]

Bridget O, Joy Marie, Shelby, Lexie... Wow. What an amazing group of women (I think we're all women!!).  Thank you all for your time in responding. ALL was helpful. Bridget - I appreciated hearing what your experiences were and what you could do for yourself following surgery... It makes me feel better prepared and hopeful. Joy Marie - Thanks for the tip on the videos; I just watched a few and had my son watch the after surgery one (he found it helpful as well!). Shelby - You have been absolutely amazing in posting here re: your surgery. I am in awe every day that you have been able to share your experiences and that you are doing so well. What a strong person you must be!  Lexie... Well, by the time I got to your post and encouraging words, the tears were flowing.  Always so positive (thanks for injecting me with some of it... again!).  Thank you, Lexie... I am not good at sitting still and have plenty to do (ha!) before my surgery date, which is a blessing in many ways to keep my mind off of stuff (well, sort of!). I hope I do as well as you did post-surgery... I love to walk/hike so hoping I'll be able to use that love / need to help me in my recovery. It helps with the depression right now, too, versus medication. But if it gets too bad or out of control, I will speak to a professional about this.

I think I just really needed a little boost of confidence in all of this again.  I feel much better... thanks to all of you! Thank goodness for this site... It has been a blessing for me to not feel alone. 😀

[Tom Galli]

Colleen,

When you figure out the specification for controlling lung cancer, copyright it! You'll be wealthy beyond your wildest dreams.

There are so few things one can control about our disease.  Having said that, I have engineer's disease and control is a particular passion.  Depression intervened and tempered me a bit, but the force is strong and my name is a synonym for stubborn.  In fact, not being in control is what led to my deep depression.  Your self acknowledged disaster planning competency is miles ahead of me in terms of forthrightness. Let me digress about pre-surgical tests.

Did your recent blood work include blood type determination?  Most blood panels do not include this but it is very important before surgery for if they are "snipping nodes", you'll need blood. Ask the surgeon scheduler again and specifically mention blood type.  If indeed the scheduler says it is not necessary, don't do disaster planning yet.  You'll be at the hospital ahead of your surgery.  Stop by the day surgery desk and ask the desk nurse about pre-surgical testing.  You'll have plenty of time to get it done.  Also call the surgeon on arrival and ask about including items you want or need on doctor's admission orders. Things like a hot pad for your shoulder, sustaining medication, laxatives, non-prescription pain reliever preference, use of your night guard etc.  Do this at the day surgery desk. They can always reach the surgeon or the PA that does orders.   

So, how does one get through a lung cancer surgery?  I've had 7 thoracic procedures and I still don't know.  But, here are some tips and tricks.  Tell the anesthesiologist you are nervous about the procedure.  The magic injection will fix that.  They typically stop around before surgery to assess your intubation tube size.  They also are very good at explaining what is going to happen, so while the magic stuff does its job, try and listen to his or her explanation.  But, before the stuff starts to work, tell the anesthesiologist about your bad shoulder.  I bet they have a way of rigging you to avoid post-op pain.

Speaking of post-op pain, you won't feel anything, at least for a couple of days.  You may have a morphine push attached to your IV with a button to push.  Anytime you start to feel anything, you press the button, and then you won't feel anything.  Because of anesthesia and post-op pain meds, I'd start mild laxatives ahead of your surgery day.  That will handle the pain of elimination.

Post-op hygiene while in the hospital should not be a concern.  You won't care for the first couple of days.  Then if you do, ask the nurse for a bed-bath.  During my eight week stay, I had one every other day. I got a good hair cut before each surgery but they did use the dry shampoo to avoid getting my head wet.  When I was encouraged to get out of bed post-op, job one was brushing my teeth and I struggled because I'm right handed.  So bring a battery powered tooth brush. Also, bring your own toothpaste.  Hospital stuff is horrible.  I couldn't floss because one handed flossing is near impossible. I'm not sure the nurses will allow you to use your night guard until you are able to keep the ball in the spirometer between the two lines.  Oh by the way, nurses rule the hospital.  

Yes I wore compression stockings (ankle to groin) after every surgery for the entire length of my stay.  I didn't have problems with my veins and arteries but the nurses insisted and knowing I'd push them off, always checked first thing every time they entered the room.  Thankfully, my hospital experience was way before the invention of air-actuated compression sleeves (I had to throw some engineer speak into the conversation).  I also did not have to inject myself with anything after discharge.

I wish there was a better way to be sure of your cancer before surgery.  I do know surgery will give you the best shot at NED (no evidence of disease).  My pre-surgical conversation was about closing me up if cancer was discovered to be more extensive than shown in the scans. Engineers hate uncertainty and lung cancer is uncertain, in the extreme! In nearly 15 years of surviving a lung cancer diagnosis, I'm not any better at coping.  So I completely understand what you are going through.  

I bet you are like our "Airborne Ranger" Shelby posting on the forum a couple of hours after her surgery was over!  You'll get through this.  Your son will be fine.  No one will inspect your house for a good housekeeping award while in the hospital.  Stock up on frozen diners.  Get the good stuff -- lasagna, macaroni and cheese, chicken pot pies, ice cream, get lots of ice cream.  One more important thing.  Please stay away from school aged children after your surgery.  The last thing you want is a chest cold.  Coughing and healing incisions do not play well together.

Stay the course.

Tom

 

[BridgetO]

Hi Colleen,

My post-op pain experience was different from Tom's.  I experienced some pain and some pain meds but i didn't have the morphine pump he describes. I wasn't "out of it"  and was released the day after my lobectomy. They were giving me something that could only be given every 4 (or was it 6) hours and I asked them not to send me home until they could give me another dose of it, because I did have some pain. They did as I asked and I went home when the dose took effect. (maybe I was a bit out of it because I can't remember what this med was). My experience with  pain control meds for the lobectomy was quite different  from when I had a big open surgery for a previous non-lung cancer. Then I did have the morphine pump and was quite out of it for several days, so I know what it's like! 

Everybody's surgical pain experience will be different, but for VATS, it usually isn't too bad. I hope yours is as easy as mine was.

Bridget O