Jump to content

Too Scared to Schedule Surgery


Recommended Posts

   A 1.6 cm ground glass nodule was found in my lung last year. Since the PET scan was negative, the doctor said we could watch and wait to see if it was growing. Unfortunately, a CT scan two months ago showed that it was much bigger.

 

   The doctor said we could wait till after Christmas, but I should call him in January to schedule surgery for February. Well, I have been staring at the phone for three weeks and don't have the courage to pick it up and call. I know I am one of the "lucky" ones who can have surgery and, even better, the doctor thinks it's the BAC type of cancer, which has a excellent prognosis. But I've never spent a night in a hospital and never had major surgery. I freeze whenever I think about the agonizing pain, the chest tube, the collapsed lung. It's all a bad nightmare. How do you people deal with this?

Link to post
Share on other sites

Welcome Ralph!

 

How do we deal with it - one step at a time.  I had to look up the term you used "BAC type" to deduce what constituted your tumor - adenocarcinoma.  Now that I know your type, let me give you a good reason you should proceed with surgery.  Adenocarcinoma (BAC type) is one of the types that has identified genetic mutations and indeed special drugs have been formulated to effectively deal with adenocarcinoma in the event it does decide to spread in the future.  The first step is to biopsy the tumor and that will occur after surgery.

 

I spent nearly a year in the hospital because I had pre-surgical radiation and chemo.  These affected healing of the sutured tissue so my surgical experience was very unusual.  Still, I never felt any pain.  For several days, and I can't recall the number, I had an IV morphine injector that would allow an injection of morphine "on demand" as long as the demand didn't exceed once every 15 minutes.  So I never really felt any pain.  After this rig was removed, I had surgeon's orders for a full range of pain medications from injectable narcotics to Ibuprofen.  I expressed concern about getting hooked on the narcotic medication but was told that as long as the drug was administered while I was experiencing pain, I'd not get addicted.  I had several different chest tubes for several lengths of time.  I can't imagine your surgery will be so extensive you'd need more than one.  Moreover, unless there are complications, you'll likely have the tube removed quickly and removal doesn't hurt a bit.  A collapsed lung is easily dealt with by the surgical team and while in the hospital.  It shouldn't concern you.

 

My first diagnosis suggested the size and position of the tumor prohibited surgery.  My GP, oncologist and surgeon all agreed to treat aggressively to see if the tumor could be reduced in size to allow its removal without affecting important tissue.  I had such a good response to pre-surgical radiation and chemo (you'll likely not need this) that I questioned whether or nor we should remove the now downsized tumor.  My oncologist gave me a lesson in metastatic cancer.  As the tumor grows in size, the likelihood that it will spread to other parts of the lung and body increases - some say exponentially! So, if it is removed, intact, with clear margins, you could be home free.

 

Early diagnosis is the only way we can effectively "cure" lung cancer.  You've had an early diagnosis and surgery is the effective "cure."  I use the quotation marks because no cancer patient nor practitioner uses the "C" word anymore....

 

Stay the course.

 

Tom 

Link to post
Share on other sites

Hello Tom. Thank you for you response. I truly appreciate you sharing your experiences with me. It sounds like you went through a lot more treatment than I will need. I find it very encouraging that you do not recall the pain to have been so severe.

  The BAC cancer, at least in some cases, is also called adenocarcinoma in situ. If this is what I have, then it's very possible it hasn't spead. So the surgery may be the only treatment necessary to remove it completely. But if not removed soon, it can become invasive.

  Thanks for taking the time to respond.

Link to post
Share on other sites

Hi Ralph, 

Welcome to the LCSC message boards. I hope Tom's words have helped you feel more at ease with your treatment option that your doctor has recommended. I am just wondering if there is a Nurse Navigator in your support team who can also talk to you more about your treatment plan? We can also connect you with a one on one support partner through the LUNGevity LifeLine Program. Here is the link http://www.LUNGevity.org/LifeLine

 

I look forward to getting to know you.

 

Cindy

Link to post
Share on other sites

  Hello Cindy. Thank you for your concern and your suggestion. I apologize for not responding sooner. I'm having trouble facing this right now. When I spoke to the surgeon in November, he had someone come to his office who gave me several handouts covering local support groups and other topics, but I did not follow up at the time.

  I will take a look at the LifeLine Program. Thanks again for the suggestion.
 

Link to post
Share on other sites

We are here for you. Feel free to post here anytime you feel up to it. I can only imagine how overwhelmed you must feel. Some people like in person support groups, others not so much. LifeLine is just communication through phone or email with someone who has experienced a similar situation as yours. I just thought I would throw that out there. Feel free to roam around these message boards and read what you like. We have wonderful survivor volunteers in here that have so much wisdom and helpful hearts. If I can do anything to support you through LUNGevity's support services, please reach out to me anytime. 

 

We care about you,

Cindy

Link to post
Share on other sites

I too was recently diagnosed with Adenocarcinoma. I was diagnosed in September of 2015. I  just got out of the hospital and found out that I have a 1 cm brain lesion that seems to be metastatic from my lung cancer. I agree, it is a very scary diagnosis. I have been battling with depression myself. This is an extremely tough battle, with which you are not alone. I am here if you ever need someone to talk too. I go to Cancer Treatment Centers of America and UT Southwest. Right now, I have not been given any treatment because I have been too sick to receive treatments, which as you can imagine is frustrating. We are also waiting until my lung nodules start growing. I can relate to your fear. It is very real. Please do not hesitate to seek comfort in any of us. We are here to help.

Link to post
Share on other sites

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

Link to post
Share on other sites

  Thanks, Shanna, for sharing this with me. Depression and anxiety are problems I am having as well. I called my doctor today to asked for a drug to treat both depression and anxiety. He said he would fax the prescription to my druggist today but the drug might take a couple of weeks to show any effect.

  But my biggest problem still comes down to building the resolve to go forward and commit to having the surgery. My frustration is with myself and dealing with my fears and phobias. Maybe I should just put a paper bag over my head and leave it there till the surgery is over. If they ask at the reception desk, my wife can tell them I'm the Elephant man.

  Please keep in touch and let me know how you are doing. Thanks again.
 

Link to post
Share on other sites

  Hello Barb. I have just one nodule that needs to be removed. The surgery will remove either most or the entire lower left lobe. The doctor says he will start with robotic surgery, but he may choose to switch to the more invasive open (non-robotic) surgery depending on what he finds.

  It's very reassuring to hear you say that the pain wasn't too bad. I actually did worry about the catheter, but I figured that would be the least of my problems.

  Did you have trouble sleeping when you got home? How difficult was it to get in and out of bed? How difficult was it to go to the bathroom? How difficult was it to go up and down stairs? And for how long did all these problems last?

  Thanks for responding. It really is helpful to me. Hearing people talk about the surgery makes it less foreboding.
 

Link to post
Share on other sites

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

Link to post
Share on other sites

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

Link to post
Share on other sites

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

Link to post
Share on other sites

  Thank you Cindy, Barb, and Mary for taking the time to respond. I found all your posts extremely helpful, encouraging, and informative. I took a few days off because I was getting too stressed over this, but now I'm back to trying to deal with it again. While I know it will be unpleasant, you make it sound like something I can get through. I still haven't scheduled an appointment with the doctor, but I am starting to make plans based on the assumption that I will have the surgery and that's a step in the right direction.

  I am still worried about the long term effects of the surgery and how it will affect my life. Will it be much harder to breathe? How long does it take for the lung to heal? And is there much pain after the incisions have healed, such as pain due to nerve damage?

  All of your comments have helped me a lot. Thank you for your help.

  Ralph
 

Link to post
Share on other sites

Hi again Ralph,

 

​Unfortunately, most of the questions that you still need answered are the ones that just can't be answered because things are different for each individual. If there were a way to give you an absolute, trust me, I would!!

My personal experience is that I had nerve damage that started before I was even diagnosed and even though the cancer has been out of me for nearly 4.5 years, I still have pain. I had additional nerve damage caused by the surgery that gives me other troubles. I don't recall much about pain from the drainage tubes other than the discomfort of having them removed. I will say that while I probably thought it was more than annoying when it happened, now that it has been a few years I can't remember it much at all!!

 

​There is not much point in discussing my post op pain in much detail since my surgery was very invasive and included removing parts of a few vertebrae and some ribs. It sounds like you may be able to have VATS which means you will likely have 3, 4 or 5 small incisions of just a couple of inches each. I hope that you can have that done and that it will mean that your recovery will be much faster and with as little pain and/or nerve damage possible!

 

A pal of mine had a tumor very much like mine and his treatment was very much like mine as well. He even had 2 of the 3 doctors that I had. He went through it all 9 years before me. YES, I did say NINE years before me!! He has COPD which evolved shortly after the surgery, but he doesn't let that slow him down much. He is still out there going on vacation to far off places a few times per year. He rides his Harley all the time except for really crumby weather. He swears that he just about jogged out of the hospital after surgery :-) Talk about two people at opposite ends of the spectrum!!

 

Please just let yourself believe that you will breeze through the surgery and recovery like a hot knife thru butter and leave all of the worry to the billing clerk :-) While I am not saying that being cheerful will be a sure way to a pain free recovery, I do think that if you go in full of gloom and doom, you will be setting yourself up for more of the same after the surgery.

 

I get it that you have never had major surgery, but have you ever had a cut that needed stiches? By the time they are coming out, you are mostly healed up. You barely even notice them coming out. I have even heard of people who take their own stitches out!! (Please don't do this!) So it sounds like the easiest part of the surgery process.

 

Fingers Crossed,

Mary

Link to post
Share on other sites
  • 2 weeks later...

Ralph, just reading all the replays to you,It is February

Now and was wondering and hoping you made the decision to not wait and have the surgery. That is how my adenocarcinoma non small cell was diagnosed...when one of

My many nodules grew..it I'd do very important

To not wait and see with this..the sooner the better, I had a wedge resection to remove the tumor

On my lung as soon as I was able...please update good luck to you. M M

Link to post
Share on other sites

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.

Link to post
Share on other sites
  • 2 weeks later...

Thank you Mary, Merilee, and Richard for your posts. I apologize for not responding sooner. I have been trying not to think too much about the surgery while I deal with some other matters. I did see my doctor and he ordered some additional tests including a new CT scan. I will see him again next month and I think he will schedule the surgery at that time. Your posts about your experiences have been very helpful to me. They make surgery seem less like a nightmare and more like something to just get done and over with. Thanks again for your help.  

Ralph
 

Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...