Pre-Diagnosis??? - Out of my mind!

[rukool]

Hi all,

I am in the position of not knowing where I stand yet, and scared. I had flu like symptoms (chest congestion, coughing, etc.) at end of august, went to ER for return to work letter, because my doctor was out of town. ER ordered chest x-ray, which revealed the following:

FINDINGS: Two views of the chest

Very subtle opacity posterior to the manubrium seen only on the lateral view is noted. There is also a small opacity in the periphery of the right apex, I am uncertain if these are the same lesion. Given the patients history of smoking, recommended follow-up infused thoracic CT to rule out presence of a mass.

Heart Size normal.

No conclusive evidence of CHF or pneumonia

IMPRESSION:

Opacity seen only on the lateral view is suspicious for mass, recommended infused thoracic ct for further evaluation.

My doctor then scheduled me for the ct scan which I had a couple of weeks ago. Now he has given the results to an oncologist friend of his, and they think "it" is likely cancerous! I am waiting for the oncologists office to get pre-approval for a PET scan and follow-up appointment. It has been over a week!!! This is The University of Chicago! I have no idea what the CT scan said, but he immediately sent it to the oncologist. What should I think? Do?

Thanks[/b]

[Dollfinn]

RUKOOL~

You will often see us all share the same sentiment, waiting sux, thats a fact. You can keep in mind they are being overly cautious, for that be greatful. This was found by "accident" per say another thing to be greatful for. You found us and we will share all the knowledge we have to help you through this finding, stay in touch, all questions, fire away! Mary

[RandyW]

In my opinion you should ask Dr West Our resident Oncologist here from Washington State He is a licensed and practicing Oncologist specializing in Lung cancer who is donating time on his site to answer our questions. Registration is free, and here is the direct link:

http://www.onctalk.com/post/

HE is very straight forward and prompt in his responses..

[ernrol]

You should call your oncologist and ask him to explain what the CT scan showed. There is something there that he thinks needs more testing. Until they do a biopsy they will not know for sure. There are many things that can show up on a CT scan that are not cancer. Keep us posted.

Stay positive,

Ernie

[Don M]

Hi and welcome;

As soon as you get PET scan results, you and your oncologist will have a better idea of what is going on. They should have called you in for a consultation though after the ct scan. The first doc you saw is the one who ordered the ct san and you should talk to him.

Don M

[rukool]

Thanks for your replies! I will start following up with everyone I can today.

[barbara5452]

I agree with Katie, Do not wait, you will find you have to push things through and be aggressive with it. Hopefully it is nothing but if it is you need to get to work on it. Best of Luck ! Keep us posted.

[chloesmom]

The only way they can tell with certainty whether or not this is cancer is with a sample of the tissue. These things can be infection, inflammation, or cancer.

A PET will help, but nothing will be certain until tissue is examined under a microscope by a pathologist.

If you are going to the University of Chicago, you are at one of the leading cancer centers of the country.

I had my surgery there, and am grateful every day for the care and results I got there.

We went into surgery with the surgeon saying he was 80% certain I had a cancerous tumor. He would not do a biopsy for several reasons, and after all was said and done, I understand. I was and still am very satisfied with the treatment I got there.

When we are waiting for something like this, every second seems like an eternity. I will tell you though, that I got in to see a surgeon at the U of Chicago about 10 days sooner than I could see the surgeon here at home.

Good luck, I hope this all turns out well for you.

Cindy

[fillise]

I hope you get some answers from your calls today. Let us know what you find out.

Susan

[rukool]

I met with the surgeon today and he recommends doing surgery to remove the 2 nodules, both about 1-1/2 cm. One is on the top of the right lung near a blood vessel? The other one is in the middle of the left. He thinks the one on the right is more troublesome and defined. Although I've been told they are both small, he doesn't think a needle biopsy would be the best route to go. He further stated that there is a 50-50 chance he could do them with a camera, if not he would just do a resection on both. All this is really a blur to me but I am praying I'm doing the right thing. He says all the doctors he has reviewed my case with think it is the best route. What scares me most is the removal of part of the lungs, and how it will affect me later. He also told me if the tissue is malignant they would start chemo. Can you help me out here?

Thanks for your prayers.

Jim

[mhutch1366]

If the lesions are so small, I would think perhaps they could do a wedge resection and just nip that bit out, which means you would lose minimal lung tissue. There may be other routes the surgeon is considering that I know nothing about.

People in otherwise good health can lose one lung and function very well; studies show that healing is such that loss of an entire lung stimulates cytokines and growth factors such that one has better breathing after loss of the entire lung than loss of half of one lung.

In any case, if there is severe lung loss, the surgeon and pulmonist will most likely order pulmonary function tests to ensure that you have enough lung left to breathe effectively.

Good luck, and keep us posted.

XOXOX

MaryAnn

[Judy-OK]

Jim it sounds like they caught whatever it is early. My NSCL adenocarcinoma was inoperable and I received chemo and radiation therapy at the same time which has kept it stable for over a year now. Once they have a treatment plan in place you will be so busy you will not have the time to fret and things will hopefully become easier for yout o deal with once they determine exactly what is going on. Fill our your profile and keep us advised.

[barbara5452]

Sounds like it has been caught early, I was told if surgery could be done that was a good thing. I lost my right upper lobe which is the largest of the three sections on the right side of your lung approx. 2/3 of the lung and did fine. Started walking and had no problems. The left side of the lung only has two lobes. I would speak to you onc. to see if they feel you will have any future problems. All I can tell you is that you have to push yourself to get those lungs to re-expand. Funny how the body works, it can be done I walked and walked alittle further each day and by my 6th month post surgery I had expanded my right lung to full capacity. Good luck.

[rukool]

Thanks for all your help. My biggest fear is the surgery itself now. I never even had my tonsils out in 56 yrs! The surgeon strongly recommends an epidural for the anesthesia. I had stopped smoking for 3 weeks on chantix until this whole thing started, now I am slipping. The surgeon also said he won"t do the surgery unless I am smoke free for 10-14 days. My Christian faith has sustained me so far,but I am terribly nervous all the time. My stomach is in knots. Can someone tell me what curable means vs. 5 yr. survival? I have so many things swirling around.

Thanks,

Jim

[MsC1210]

Jim

I missed your initial post and wanted to say hello and welcome. I am sorry you are going through all of this.

Call your doctor and ask them to give you something for the anxiety. Better to have some meds to keep you calm than the smoking.

Wishing you all the best for all of this, and please keep us posted. We're all here for you!

Sending many prayers and best wishes

Christine

[Debi]

Jim,

You sound exactly like I did when I found out that I had to have surgery, the floor is sort of pulled out from under you, isn't it? If it feels any better, you are right where you should be, there is no easy way to get your head around something like this. All you can really do is put one foot in front of the other and get to where you have to go.

I never had had any surgery to speak of either until the lung surgery. Apparently, we go big. I was terrified of the epidural, the surgery, etc and the truth is, it really wasn't as bad as I thought it was going to be and I ended up having both my upper and mid right lung removed. I'm not going to say it was a walk in the park, but my fear had become greater than the surgery itself, it was a relief when it was over. Someone on this board at the time had compared the recovery to having been hit by a fleet of 18 wheelers, but every day there was one one less truck. So every day of my recovery, I looked forward to the next day, and that one less truck. In the meantime, you make use of the pain pump - chances are they will offer you an epidural pain pump- and make sure that you push the button before the pain rolls in. I am the worst baby in the world Jim, and the surgery and recovery was physically very doable for me.

Having surgery means that you are one of the 'lucky' ones - yeah that's pretty funny right about now, I know - but being able to have your nodules removed makes you lucky. By the way, having 2 of my 3 lobes removed, I can't even tell most of the time. I actually breathe better it seems than I did before. So don't worry about this type of stuff, I know that's easier said than done. Keep posting on here, alot of us have been exactly where you are. I was so convinced that lung cancer was a death sentence, and look at me - it's 4 years, almost 5 months since my surgery, 4 years, 10 months since they first saw a 'shadow' on my lung and I'm still here without any reoccurences, etc (looking for wood to knock on!).

Best of wishes on your upcoming surgery and welcome to the board.

[recce101]

Jim:

I agree with Christine about the anxiety medication. Even if you have a general bias against that sort of drug, as I do, please realize that it can be really helpful at a time like this. You want to go into the surgery relaxed, confident in your team, and with positive expectations.

There have been some remarkable advances in anesthesia in recent years. In addition to the surgeon, the anesthesiologist should come by to chat while you're being prepped for surgery. If no one mentions that he/she will be visiting, I suggest that you specifically request it. In my case, when the surgeon came by I told him that I definitely wanted to see the anesthesiologist (I have an inner ear condition that can trigger vertigo/nausea episodes without warning, for which I've been taking meclizine tablets 3 times a day for years, and wanted to make sure I was given something to substitute). I had a very good rapport with my anesthesiologist, and we had several more minutes to talk in the OR while waiting for the surgeon -- even had a chance to break him up with my favorite fighter pilot joke.

I have a detailed post on my 2006 thoracotomy which you might find reassuring. I've also listed some things you can do in the days BEFORE surgery that will make it easier for you at home after release from the hospital:

http://onctalk.com/bbPress/topic.php?id=460&replies=3

You'll do fine. Best wishes and Aloha,

Ned

[Connie B]

Hi Jim,

Sorry to hear things are in such an uproar for you. Sounds very familiar to me. Sadly enough we can make it sound so easy and like it's a cake walk, but we were all in the place you are right now, when it comes to the I DON'T KNOWS AND FEARS of the WHAT IF'S and the UNKNOWNS!

This isn't an easy journey, but it is DOABLE and lung cancer CAN BE BEAT! Look at my profile.

Keep us posted on how things go for you. Stay strong and stay positive. It's half the battle!

[blaze100]

Hi Jim, I am sorry they think the CT shows lc.

I would be concerned though that it really is lc and not something else. Having thoracotomy is no picnic that's for sure....and I would want a little more evidence before submitting to surgery. Did they do a PET yet?

If it is LC then it's a must do and surgery is doable alright. But are they going to work on both sides of your chest? I wonder how they will do that?

Some of us have OK experience and some of us have very very very bad experience. I hope they do more tests before surgery.

Barb

[rukool]

Well, tomorrow is the surgery for me. Never had any surgery before. Now bi-lateral lobectomy! Anyone had this done? Also any words of encouragement and prayers would be appreciated. Praying for BENIGN!

Jim

[Ry]

Jim-

I don't know if you would find this encouraging but we have had several people go through this and find out it is not cancer-- so benign is certainly a possibility!

We will all be here waiting and wondering how you are so please let us know as soon as you can, or have a family member come back and post for you.

Good luck tomorrow!

Rochelle

[chloesmom]

Jim,

Good luck to you on your surgery tomorrow. I hope you get the same great care I did at the University of Chicago. And I hope that you hear that word BENIGN! But, if not, you are in a fantastic place for some of the best care in the world.

Cindy

[Muriel]

Hi Jim. I'm sorry I missed your earlier posts. What I have to offer is certainly "11th hour" comfort. I've had two lobectomies (UR in 2003 and UL 18 months later). It's doable. Not a lot of fun, but the hospital did a good job of controlling any possible pain. I was somewhat uncomfortable at times, but not really in pain. Best wishes. Looking forward to more posts from you when you get home from the hospital.

Muriel

[Shelley (MLC)]

Good luck with your surgery and I wish you a speedy recovery afterwards. I am praying for good news. Shelley

[blaze100]

Good luck tomorrow Jim. You are in my prayers.

Barb