surgeon appointment completed today

[2weimies]

Not what I wanted to hear.after completing my pre op and PFT's tests yeaterday and all the pre registration I inquired about my previous PE where was it located ( no one ever told me ) the nurse practioner took the time to look it up and said upper right lobe.I was estastic..thinking then the nodule now showing up on right upper lobe was either scar tissue or dead tissue or somehow related..I fooled myself into believing this new premise and used that knowledge as the basis for most of the 18 questions I prepared for my surgeons appointment today.after all I reasoned he did not have all the info so I was going to share my new knowledge with him , and surely he would agreed and viola~ I'd

be off surgery schedule..

However that is not what happendd.I was soberd quickly by his saying if it were me , I would have the surgery as the only chance for a cure if its caught early ( 80%) huh??? I questioned.....What are the chances percentage wise this could remotely be malignant.I was told 95%-98%...what ? what about the radiologist who stated in his report it was in an atypical location for malignancy.No its not according to the surgeon.In fact He said it will be very difficult to do the VATS surgery as he may not be abl;e to find it bacause its so small.so they are probably going to have to open me up... He also said something about staging taking about 7-10 days and If they send out other things for Cultures ( maybe that was if its by some miracle not cancer)that could take 6-8 weeks.I was in tears after I left his office.He explained all the possible risks and complications and I was just shell shocked.My sister (a nurse) and my DH were also with me.I stopped asking questions bacuse I could not think clearly and my sister took over and asked alot....She feels confident that my only hope if it is cancer is to get it out now and seemed to think the surgeon was very good and thorough. Even what could appear to be "caught early" may still be worse depending on lymph nodes which the doctor said are often not picked up on a PET scan..... I asked why I had that pain that took me to the ER and he could not explain...I asked how such a small think showed up on a PET scan and he marvelled at why the doctor even sent me for one ,he said he would not normally done that@ 6mm cause it usually would never show up. He also seemed to think that in the lungs a positive PET scan was most reliable as opposed to other organs in a PET scan.

Sorry to be so long winded but I was totally caught by surprise after convincing myself it was a scar from the previous PE..... Now I am feeling like a slightly scratchy throat and everyone around me is sick at work..

I am feeling very scared.Thank you all for your support and positive thoughts.

[barbara5452]

I feel you fear, but remember if surgery is possible that is a good thing, so many people are inoperable and have only drugs to help them. I was told if surgery was an option that means a possible cure. Just be sure to follow up with scans after the surgery not just chest xrays, after my surgery chest xrays were all I was given, now I have recurrence.

Good Luck..

[Kasey]

Surgery IS a very good thing........REALLY. I am very hopeful for you.

Kasey

[Debi]

Of course you're scared, I don't blame you, I was also. I thought of everything that could go wrong, and was sure that it would.

I had never really been sick and having lung surgery was SO out of my realm of living that I couldn't quite grasp that it was actually me that was going to have it done.

But you know what? I did fine. I was out of the hospital in 6 days and back at work in 9 weeks. It wasn't even as bad as I thought it would be even though it wasn't a piece of cake, it was definitely doable. Every day I felt a little bit better.

Your nodule is small. That is a VERY good thing. Mine was small also, though larger than yours. I know you feel far from lucky now, but you ARE lucky. Finding it this small and having it removed surgically leaves you the best odds with this horrible disease.

Sometimes I'm filled with wonder that I was saved. One day, you will feel the same, I promise. Meanwhile, please try to get some peace from the fact that others have gone through it, and we are still here. A diagnosis of lung cancer is not a death sentence- just put one foot in front of the other and before you know it, you'll have walked through it.

Hang in there and keep posting.

[recce101]

I'm really sorry your meeting with the surgeon didn't turn out as you had hoped. Your mind is obviously going at breakneck speed trying to make some sense out of all this information, wondering if you should seek another opinion, attempting to devise some way to avoid the surgery that is scheduled just 10 days from now. One thing I know is that for the best surgery outcome, assuming that the planned surgery becomes a reality, you need to be less stressed than you are right now. You need to be confident in your surgical team, at ease with your decision to proceed with the surgery, and relaxed enough to tap into the healing powers that permeate the universe and are available to all of us regardless of our religious or philosophical beliefs.

Easier said than done? Definitely. If you haven't already, you might try to identify and explore the "real" reason you are so resistant to the surgery. Your complications last March? Another person's bad outcome? What you might be told after you wake up? Something else? Of course this is a personal and family matter, and you don't owe anyone here any details that you're not comfortable sharing. Wishing you peace of mind and the best of results. Aloha,

Ned

[blaze100]

The time between diagnosis and surgery is the worst. Did they do a bone scan and brain MRI too? As I recall they do all kinds of tests first before surgery just to be certain it hasn't spread to other parts of the body. If spread, most likely chemo before surgery.

The PET showed uptake. You could wait to see if spot grows which would would be an even better indicator of cancer. You could try needle biopsy or bronchoscopy if spot is in good location. Yours must not be.

All I can say is try to get some rest before the 13th. Xanex and Ambien or Ativan help. Chocolate can't hurt either.

Also be sure to stock up your kitchen with favorite comfort foods. You will be home from work a few weeks after surgery.

I am sorry the doctor did not have better news. I think it is normal to create alternative hypothesis to avoid the "LC" diagnosis. Keep your fingers crossed. You could be one of the lucky ones that gets through this mess with only surgery. Prayers,

Barb

[2weimies]

My nodule is not located in a good place( location wise) and based on what I heard it sounds as thought VATS won't really be too sucessful in nabbing the little bugger either so I fully I suppose now expect I'll have the "full monty " ( as I call it ) open chest surgery.My doctor had doughnuts waiting in his waiting room, and anyone who serves doughnuts and opens on saturdays to see patients is definitaly my sort of doctor.Also he pulled no punches and did not sugar coat anything ( I wish he had)....I know it must be done and must just go for it ,full warrior mode. I'll be sure to keep posting here and look to everyone for continued support as I make my way through whatever is to come.

Thanks again for being here!

[recce101]

[2weimies] My doctor had doughnuts waiting in his waiting room, and anyone who serves doughnuts and opens on Saturdays to see patients is definitely my sort of doctor...I know it must be done and must just go for it, full warrior mode...

There ya go, sounding much better already! I think you'll do just fine.

Keep posting and you can expect lots of tips, such as things you can do before surgery day to make your hospital stay and your recovery as smooth as possible. Barb mentioned stocking up on some of your favorite foods. One I'll throw in is to move frequently-needed items to drawers or shelves that you can reach without any stooping down or stretching up -- say mid-thigh to shoulder level. You'll welcome some help at home for a few days, but you'll probably be surprised how much you can do on your own with some advance planning. Aloha,

Ned

[twodogs]

Hi again 2weimies,

I had to look back to see where you're from because your doctor sounded so much like mine. And that's a good thing.

I think we all wish we'd have gotten the news with a bigger dose of sugar but it hardly ever comes that way. I believe the best caregivers want us to know what's really going on as soon as possible. We need to be able to deal with the reality of this stuff as soon as we can.

I'm reiterating a bit but certainly second the opinion that surgery is a good option. Knowing that and the fact that your doctor is so caring and dedicated should give you a pretty fair balance point for going ahead.

You have our prayers and support and we're here to help with your concerns and questions.

Stay strong and keep the faith.

John

[2weimies]

I am trying to be strong , stay focused and keep up things at work this week.Prepping for what will surely be a few weeks off.

Its so hard to concentrate , yet I think being busy is probably better for me then sitting home and thinking the worse.

Monday will be a horrible day,I'll go in for a 1/2 day or so and try to do some last minute things , and change my voice mail message.

Don't know if I'll sleep or be too "wound up" sometimes I have acheived a place of peace prior to surgery and now I'm not sure I'll have that going in here.

I am a little perplexed about something I read here somewhere someone had a nodule removed or biopsied after it lite up on a PET scan and it was benign..My surgeon says not so..Now wondering if that is possible or perhaps the amount of uptake I have was too much to think it could be..As you can see I still cling to the hope that this is all just some scar tissue or some type of infection...... one minute , and the next I rationally hear what the surgeon said which is he is 95-98% sure its malignant. Scary odds ..... Thank you all for being here and holding my hand through this all. It sure does help to have someone to listen to who has been there and who understands what I am going through right now. I will try to be strong and make you all proud !

[carolhg]

I certainly understand your fear, because I have actually been there-done that. Your doctor sounds really great. You could take your scans and reports to another doctor for a second opinion if that would make you feel better. If the second opinion is the same as the first, you might feel more confident into going to surgery. If you are going to do that it should be immediately. Cancer does not allow you to take your time. Prayers

Carol

[jang]

Michelle,

I'm sorry to hear how the appointment went, but everyone here is right. You are lucky that you caught it early and can have surgery. You will get through it fine. If you feel confident with your doctor, I wouldn't go for a second opinion. It would probably just delay things. If you are at JH, I'm sure you are in good hands. Call me if you want to talk.....

[2weimies]

confident with the doctor and my decision to move forwrad as the only possible choice given the info at hand. That however does not make it any easier at times.Intellectually I understand the process and the decision but emotionally I want to just ignore it and hope it goes away.

I am so glad to have found this board and all the great people here who are willing to hold my hand and walk me through this and cheer me on, and yes sometimes kick me in the butt to make me see what I need to do.You guys are great! THanks

[Connie B]

I've been following your posts and I have to tell you that I am SHOCKED at your surgeon. I've never heard of such a thing before in all the years we have been doing this board and all the years I have been doing my LC Support Group.

Telling you that NODULES are 95 to 98% malignant is in my opinion (shame on him) wrong!! Nodules can very well be infections and nothing more then that. They can be scar tissue and nothing more then that. So, I totally disagree with your surgeon.

YES nodules DO light up on PET SCANS. I know that for a fact because I had one that did. I have been living with nodules for well over 4 years now, and I AM a lung cancer survivor having had LC 11 years ago. My nodule has gone up and down in size over the last 4 years. From 4mm to 6mm, to 8mm to 7mm and as I stated it DID light up on a PET Scan. Yet all my doctor's have stated they don't like to do biopsies on Millometer nodules, so they opt to watch them, (which happens to most people that have nodules) as you can read on the board here that many of us have nodules and that some of us have many nodules that are just being watched.

If I were you, I would get a second and third opinion.

Good luck with your situation. I wish you the best.

[2weimies]

I did not mean to generalize, and hope it was understood my doctor was speaking about my case .Based on the fact I have had serial cat scans over the past year, and that this nodule was NOT present on any of them, we are in a position to say it definately is a new event. That coupled with a PET scan that lite up with moderate uptake in his opinion indicates a malignancy. I specifically asked about the possibility of it being scar tissue from my PE last year or perhaps dead tissue or an infection.However I have had no pneumonias, bronchitis or any such infections and he definitely , absolutely said it was in NO WAY from my PE last year. This surgeon is highly recommended and top in his field. He certainly does not need my business. I even questioned thathe radiologist said it was in an atypical location for malignancy and he said no that is incorrect. He said that PET scans often miss lymph nodes, and other body parts that are malignant but when it comes to lungs they are very accurrate, absolutely. In a best case senario I wake up and find out it was benign.Boy would that be great or what??? In a less than best case I wake up and find out it was malignant and they got it EARLY!

Just a thought but perhaps with secondary nodules, possible mets or reoccurences they are not so quick to judge and would rather watch and wait ? Maybe this is a good question to pose to Dr West.

[mdsum1]

I had a a few nodules that had been watched over a period of time and was referred to a thoracic surgeon because one had grown to over 2.5cm. I asked the surgeon about having a PET scan b4 biopsy and he said that he would do that if I wanted but that there were many false results and the only way to be certain would be a biopsy. I had the VATs procedure done and it was not cancer! If there ever was a question of nodule growth again I would do it again.

Hoping you get good news also with your biopsy.

[2weimies]

Its reassuring to hear that it could turnout to be benign,but as you and many have said without taking it out and looking we'll never know. I was disappointed with the poster who was "SHOCKED" by my doctors comments and proceeded to second guess his opinion, going as far as saying "SHAME ON HIM" that I found less than helpful and totally inapprorpiate. Offereing support is one thing giving your medical opinion ( without the benefit of a medical degree) in relation to a doctor of medicines opinion is outrageous. I'll post as soon as I can after surgery to update those interested. Thanks

[Connie B]

I'm sorry you felt my message was not supportive, but I was very shocked at your doctor's remark about your 9mm nodule being 95 to 98% malignant. I've never heard such a thing in all the years of been a lung cancer patient or with dealt with other lung cancer patients. (read my profile) My concern was and is for YOU!

I don't take nodules lightly and I DO hope your's is NOT melignant. Being a lung cancer survivor/patient myself, I don't take much of anything lightly regarding lung cancer. But, I do not like when a doctor appears to be negative or starts blurting statisics to patients. All of us here will tell you that numbers & %'s are NOT what we like to hear and that those numbers scare the heck out of us. I would think that him saying that would have scared you out of your wits. It does and did me!

My sincere concern is for you. And yes I am still shocked that your Surgeon made mention of that 95-98% comment. He doesn't sound HOPEFUL and SUPPORTIVE to me when he says things like that. I didn't say he wasn't a good doctor, I just said I wasn't impressed with his comment.

Some of us know all to well about the dreaded nodules. We even had a thread in the General Forum going for a very long time regarding those that have Nodules. You might want to go do a serach in the General Forum for it. I think you might find some comfort reading that thread and some helpful hints regarding nodules from those of us that live with them.

I wish you all the best and I hope you DON'T have lung cancer and that you DON'T have the need for LCSC in your life ever. I hope they remove your nodule and tell you that your FINE! This is one place none of us really want's to be.

I honestly want you to be CANCER FREE! I wouldn't wish lung cancer on ANYONE!!

[Maryanne]

Good luck with your upcoming surgery. I know how scared you are but it will be over with before you know it. I know that doesn't help as you have to go through this.

Please consider that you are fortunate enough that your LC is operable. Only 1 in 4 is.

I will send prayers to you on the 13th and pray the LC was only found in the lung and not in any of the lymph nodes.

Please keep us posted and know we are always here for you for support, prayers or just to vent.

Maryanne