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Tim 6003 CT Lung Scan back - but "odd" Any advice or opinion?

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

Okay all ....you all know me well enough to know by now I like it straight and simple with some stats and facts ...so here are my results today with my oncologist visit for a routine follow-up scan....... and I hope to hear some thouhts and feedback from you all.

I had been asking for an eyes to thighs scan for the last two scans, but insurance denied that. Said neck only due to no symptoms. Scans were not for monitoring was their reasoning.

I have had no symptoms or reasons for eyes to thighs mind you, I just personally feel like if recurrence rates (per my ENT) can be 35% and as many of my friends on this site and others have come back with mets to other locations, then monitorng SHOULD be allowed and be aggressive. But that's my humble non-doctor opinion :)

So, todays CT w/ contrast showed the very top part of my left lung (same side of my neck where my lymph node was affected and probably got the most rads) had a "ground glass" appearance. Since the scan was only of the neck, it barely showed the top of the left lung, but caught this part of the lung in the picture and the radiologist felt a full lung CT w/ contrast was needed. So back I went same day for another scan of the lungs just hours from the last scan.

The Oncologist spoke with me BEFORE the full lung scan and he indicated he was not too concerneda bout what he saw in the neck scan only at the top of the lungs bc it could be scar tissue or "radiaton scatter" or some infection.

However, after the lung scan w contrast was done, I called and I was informed the lower left lobe (superior regions I think they said) showed some of the same ....

Oncologist still feels this is more of an infection. He prescribed Levaquinn 500mg, one a day for 7 days. Wants to see me in 6 weeks for another scan.

Now, I just finsished hunting in the wood many days off an on from 5am - 7pm at night in wet, cold conditions. I felt great. Was carryiny my 60lb pack with me everywhere up and down hills!! I've also spent the last 2 months bent over a chainsaw cutting LOTS of wood.

I just recently posted I have been feeling a bit flush and tired...but no fever. My blood pressure today was 118/72 (nurse said perfect blood pressure ..and it's always been that way since my weight loss of 85lbs after treatments.)

So with these areas in the top of my left lun and in the bottom of my left lung "lower lobe superior area I think she said ...

...what am I looking at? When I breath in deep I can feel that ache, very slight, many of us get after treatments ....but I do not feel short of breath, I am not running a fever and other than that ache like when you breathe in cold air....that's it. I feel great and I feel like I have plenty of energy.

Is what the doctor orderd good enough? Should I ask more questions? If so, what kind?

I'm with all of you. It ain't nothing until someone says it is....and no matter what may come I see this past year as a wonderful year. The extra time I have had with my family because of the day and age we live in as well as the value of prayer in my life I have no complaints. I've already told my wife I plan on being around till I am 101 years old..... :)

So if you all can give me some feedback, suggestions on what to ask, do or whatever and also keep me in your prayers the next 6 weeks a bit harder than normal (well wishes and positive mojo always accepted) ...I would appreciate it.

Thank guys! :) Took my first Leviquinn tonight .....hey, I'm think I'm feeling better already ..LOL :) :) :)

Best,

Tim

Sorry for the usual long posts ....you all know how chatty I am :)

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

I wouldn't be overly concerned for the moment...

Your MD's haven't steered you wrong yet, and I see no reason to start now. I had some grandular calcification in the lungs on my last scan....

I'm like you, what the hell, I have never had anything show up before.

Turns out this particular PET/CT tech is very precise and detailed when he writes his reports.

My MD's said not to worry (Ya right)... It was from some infection that I probably got decades ago...

Anyways, stay concerfned, and aware, but follow what your MD says for now and see where it takes you.

Best
John

VanessaSLO's picture
VanessaSLO
Posts: 280
Joined: Jul 2012

Hey Tim! My answers will be no help because you know I don't have any kind of experience on that and my dad finished his tx 8 weeks ago. But I know others will answer those medical quiestions and their experience with the same issue they had in the past. As you read and heard yourself, many people have spots in lungs... And in many cases it turns out to be an infection or pneumonia. I think it's the same thing with you too. Why?
Because you've been working so hard for the past weeks. Cutting all that wood??? In freezing and cold, wet weather?? All day long, everyday??? If I was you I would probably already be lying in my bed with high fever and cup of hot tea - and sleeping for few weeks :)))). You are not even one year out of your treatment and already doing and working so much. It is hard for your body. Some people say they are never the same after chemo and rads - because it takes away a lot of energy from you. I know a lot of people who had chemo and rads and even years after treatment they say they don't feel the same or still have a lot of symptoms (feeling tired, get sick easily...).
I know you said you feel great and full of energy. It is great to hear that but maybe your body wouldn't entirely agree on that. Maybe on the outside you feel great, your mind feels great, but your body is still recovering, still healing... And your body will not be the same again as it was before treatment. You know how many side effects you had during tx and how hard it was on you. So believe me that those cutting woods most certainly caused you some sort of flu, infection, pneumonia... I hope and think it is not cancer.

And one other thing. How many times in our lives do we have spots like that when we have some infection, flu, pneumonia and we do not get scans. We don't even know we have spots. Lets say that a person who never had cancer has bronchitis for example. He goes to the doctor, he listens to his breathing, gives him antibiotics and that's it. He feels pain in his chest, caughs etc... And maybe he has spots in lungs and nobody checks that. And they dissapear when he is healthy again.
But people who had cancer in head/neck or lung area get regular exams so they're monitored closely and many things can appear in scans - most of the time they don't mean anything, just infections.
Lets say that I would go to scans every three months (as I don't have cancer) and I'm sure that they would probably find something during winter season when I would have some sort of cold, flu, infection... It would probably show on that scan. But it would not mean it is cancer. But with people who had cancer every little spot is concerned as probable recurrence and it is normal and it should be that way.

jesus, I hope you understand what I was trying to say with all this writing :)))). I'm chatty too :))

So, Tim, I will keep you in my extra prayers for the following weeks and you'll see it will turn out to be nothing, just infection. Many people here had that.

Best,
V.

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Sorry for this crazy little weirdness going on right now. What I can tell you is this, my 1st post treatment scan was just a little over a month ago and it showed something very similar in my lungs. I had been coughing tho and felt slightly feverish. Both surgeon and rad onc said my radiation did go down far enough to get the tops of my lungs and that happens with many H&N patients. Because of my coughing he said that I probably had developed a slight case of radiation pneumonia. I too was given levaqiun and also a steroid pack. I'll be having a chest xray soon to see how things are looking now. Levaqiun is some strong antibiotics and can cause your limbs to ache so don't panic if that happens to you. It's actually the drug they use when someone has been exposed to anthrax!
I hope this helps to calm you a bit. Your doctors have done well by you so just take your meds and have faith in them, I'm sure it's just some irritation from rads.....the gift that keeps giving.
Be well,
Billie

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

Thank you for those extra prayers. I think you are correct. I will curtail my outdoor activities a bit :) ........

You're not too chatty at all .....I'm a Southern fellow by breed :) Get me and a pitcher of sweet tea together with company and I will talk all day / night :) :) .

Best,

Tim

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Well said!

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

We are in the same boat. Total laryngectomy in Nov 2011. Extra Rads and Chemo Feb 2012. Pet Scan Oct 20912. About a half-dozen spots were found in my lungs. I asked about treatments if it were lung cancer. Treatment for metastasis to the lung does not exist. Medial survival time: 8 months. Treatment only to relieve symptoms.

The funny thing is that I enjoy some part of almost every day. But THE TRUTH rises from my brain stem (or where ever it hides during the day), and produces insomnia when I'm trying to sleep. It is almost midnight as I write this, so the negativism has risen its head. If you can catch me around noon, you will find me a little more cheerful.

I get my repeat CAT in a couple of weeks. Of course, I hope it is pneumonia. And if it is cancer, I will seek a second opinion in at least one medical center, unaffiliated with the one that is currently treating me. You may find googling "lungevity" may be useful. Rick.

CivilMatt's picture
CivilMatt
Posts: 2866
Joined: May 2012

Hi Tim,

I told you, if looks were an indicator of health, you would be fine.

It sounds like you have a good team and the scans did not tell them anything definitive (concerned but not overly concerned). I am with you about wanting to be vigilant about our health and CT/PET scans are the (early) detector of choice, but you’ve read the threads, they are like statistics and can needlessly scare the heck out of us.

Remember, you have not slowed down in the past 2 months (and you are sporting a hernia). I am sure getting in shape is the smart move, but you have to be careful to not over do it.

I know you can not help but worry, but I am leaning toward the results being normal.

Best always,

Matt

phrannie51's picture
phrannie51
Posts: 3634
Joined: Mar 2012

I had a "ground glass" spot on my lung when I started this...they told me all the usual things...from an old infection, etc etc...but it was not concerning to my ENT, or my Oncologist, they were totally focused on the NCP. I'm hoping they have the same attitude about my "spot" when I get my PET at the end of this month...I agree with Vanessa...in the old days we'd get something and go in and get an antibiotic, and have no clue what it looked like from the inside out. Now we're hip to scans...

I've heard a couple other folks here talk about the "ground glass" spots, and so far they haven't added up to diddley.

p

Ladylacy
Posts: 464
Joined: Apr 2012

When my husband had his PET/CT scan in September they found suspicious fluid in his lower right lung and some hot spots. They wanted to get the fluid off asap but since he wasn't having any problems, we elected not to. Three of our doctors said it was probably from the radiation and to follow up with a regular Chest x-ray in a month. We did and it showed that the fluid was almost gone and nothing else showed up. This PET/CT was done 3 months after he completed his radiation and chemo. He is supposed to get another chest x-ray this month. I will say that before the PET/CT scan he was complaining of hurting real bad right under his lung on the right side and now he isn't.

He had been sick two weeks before the PET/CT scan but one week before the doctor said his lungs were clear. Go figure how one week before the scan the doctor said his lungs were clear and one week later there was fluid and they could hear it in his lung. Our doctors are not too concerned about the findings from the PET/CT scan and so far so good. I know it is hard not to worry but try any way. Could be nothing but an infection and the medication will clear it up.

Sharon

luvofmylif
Posts: 344
Joined: Sep 2012

I have no real experience with this other then knowing what cancer can do to one's psyche. I also agree that right now all you can do is trust the docs and try the antibiotics. Try to not let it consume you...but, I know how hard that is. As Rick said, night time is the worst. But, I will be praying for you and really also believe it will be ok. Keep us posted.

Joan

longtermsurvivor's picture
longtermsurvivor
Posts: 1768
Joined: Mar 2010

The oncologist will tend to err on the part of being aggressive. If he saw something that looked like cancer, you would be headed for a fna right away. Several spots, leviquin--- they think it is infectuous, not cancer. Time to go back to the woods, but take your leviquin:)

Pat

katenorwood
Posts: 1812
Joined: May 2012

Tim,
That's a top dog med they put you on, and usually around here used for pnuemonia. Hopefully it's just a darn infection in the lung....threw a prayer in for good measure. Your scan was good then on the H/N area....possible NED ? Katie

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

I hope because my posts are so chatty that I do not appear to always be in a panic....I am from the South originally and I do talk (and apparently type) quiet a bit. :)

Now don't get me wrong, I'm concerned, but oddly enough I am no longer "afraid" like I used to be directly after treatments. I certainly don't want to put my family through anymore than I have .....

I am a diligent person by nature, a numbers cruncher, stats guy. I am also a fighter by nature. I don't take no for an answer easily.

I decided about 2 months ago I would be diligent and work very hard to be around for my family and myself, but I refuse any longer to keep "looking over my shoulder" for my cancer to return. If it does, I will give it holy heck (and with my prayers and those prayers of my friends I should probably capitallize the word holy...LOL).

I will do all I can to live one year younger than my wife. I told her I don't want to be around longer than her, what's the sense in that. The kids will be married and have kids of their own by then :) I will have doney my job if they all grow up and contribute to society rather than take.

You guys are my best resource. So I come to you often.

I will keep you posted. In Boise all this week. Wife is flying to Portland, I am playing Mr. Mom and when she gets back I will be having my colonoscopy and hernia surery (oh joy).

Best,

Tim

Oh...and I am going to ease up a bit on the wood cutting and now that hunting season is over I won't be out in the damp as much ...but I sure have felt great and sure did enjoy being out there. :)

hwt's picture
hwt
Posts: 1850
Joined: Jun 2012

It's my understanding that lung cancer has a pretty distinct shape/look. I,also, think your ONC would have been more aggressive if he was more suspicious. Sorry you have the additional worry.

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

Tim

I've been having problems with my lungs for the past four years due to what they think has been caused by food aspiration. A year or so ago a PET scan showed hots spots in both lungs however they determined it was probably scar tissue and it appears they were correct since it hasn't changed in that time. Last week I finally went in to see a pulmonary specialist and he reviewd my past CTs and is convinced it isn't cancer however he does want to know whats there. As a result this Tuesday they will be doing a lung biopsy to see what is in there (I had to reschedule rotator cuff surgery for this). His first thoughts are that I am now aspirating water and/or the two cups of coffee I drink a day (I've been on a PEG for years so it isn't food unless it is from reflux). He made the comment that I may have to give these up but with dry mouth I don't see how that can happen.

I'll let you know what they find as it may be similar to your problems.

Hang in there

Denny

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

Hey, thanks for that info.

I will say this, I have been coughing a lot when I drink or eat. My wife even said to me "you cough a lot it seems every day".....I have always been a fast eater and a shoveler (meaning I put large portions in my mouth)...I have had to curtail that habit by force, but often still try and eat to much to fast.

I also read where Pulmanary Endema can be caused by high altitude exercise. Who knew? Well like I said in the post above, I was hunting quite a bit the last 3 weeks. Daybreak to sunset in cold, damp conditions. I live at 5500 feet and was hunting at even higher elevations. So maybe that's it???

Thank you and aain, all the others for your feedback!

Best,

Tim

Hondo's picture
Hondo
Posts: 5667
Joined: Apr 2009

I am in the same situation as Denny is with the lungs and aspiration problem. It is showing spots but it’s been doing that for years now so doc believes it is just scar tissue. I did have a very bad case of pneumonia a few months ago because the nerve in the face is so badly damage from all the radiation I lost the ability to swallow. For now if you are feeling good enjoy life all you can. There is nothing that can happen to me with out God knowing about it first, and if he knows then I am in good hands.

God’s blessings to you my brother.
Tim Hondo

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

I needed that reminder this am .... :) Very true indeed. I'm a "planner" and my wife thinks an "over-organizer" .. LOL ....so I always plan - prepare for good and bad ...and I was reminded by your post this am to just let it go .....

Having a large family it's hard in my mind to NOT plan ahead for all scenarios ...but it can be exhausting.

Thanks again ....

I'm going to enjoy my weekend..

Best,

Tim

Tonsil Dad's picture
Tonsil Dad
Posts: 488
Joined: Dec 2011

I'm in your corner Tim, everything will be fine you are
one of the warriors on the board and we need people like
you on here......have FAITH my friend.
The wife says hello.

God bless
Tonsil dad,

Dan.

tommyodavey's picture
tommyodavey
Posts: 352
Joined: Nov 2011

Hey Tim,

I sure like your recent avatar pic showing the weight loss. You do look much healthier with the extra pounds gone. People say the same to me.

There is not much I can add that hasn't already been said but I did want you to know I'm thinking and praying for you daily. I just have a gut feeling it is from the rads and it'll clear up eventually.

And I haven't forgotten your invitation to come visit. Just need to clean up my fly rod and free up the time.

Take Good Care My Friend,

Tommy

cureitall66's picture
cureitall66
Posts: 846
Joined: Aug 2012

I just know it. I know it's not easy to keep it off your mind, it's a natural part of the phases we go through with this. Nothing wrong with being a planner or organizer. We are both the same on this end. But, sometimes we just have to let go of some things and let them run their course....we're learning that as we go too.

God has this and he will keep you and your family wrapped in his loving arms. Keep the faith my friend. You will be fine. Sending you prayers and love and well wishes for a speedy recovery with the surgery also.

God Bless us ALL!

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Hope your infection is cleared up quickly, and you don't have to wait too long for the next (eyes to thighs)scans.

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

Just got done with the colonoscopy today ...hernia surgery tomorrow....hungry and tired...LOL ...but wanted to check in on my online family. Sorry I did not respond sooner.

I am in Boise till Friday ....wife and kids and I are all staying at a hotel...kind of enjoying the big city ...but I'd rather be home in front of the fireplace :) ...okay, okay...or out cutting wood (since hunting season is over)

Thanks all for the prayers and well wishes :)

Best,

Tim

KareGiver
Posts: 290
Joined: Apr 2011

Sending prayers...

luvofmylif
Posts: 344
Joined: Sep 2012

Good luck with your upcoming surgery. It won't be bad and you will be home in front of fireplace soon.
Joan

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