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Lung CT - Scared of Results


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#1 Peggy

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Posted 02 March 2009 - 12:06 PM

Well I received the written report of my blood work and the CT of my lungs from my checkup 2 weeks ago. In it it's written:

"4 x 5 mm pleural nodule in the minor fissure" - lungs.

"Cyst in the lateral segment of the left lobe of the liver measuring 1 cm."

I called and spoke to my rheumatologist and he asked that I call the pulmonologist about it right away.

I called and spoke with her assistant. She said that the doctor would be meeting with radiologist this afternoon and they would get back to me in a day or two!

Well needless to say and maybe unnecessarily I'm scared to death. When I google the pleural nodule in the minor fissure it comes up tuberculosis.

Has anyone else had this? I'm scared it could be lung cancer. I was subjected to so much second-hand smoke from my parents it was terrible.

I know I'm probably worrying about nothing and hopefully so but I am still pretty darned scared. Any input would be appreciated.

Thanks.

Peggy

#2 Shelley Ensz

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Posted 02 March 2009 - 12:21 PM

Hi Peggy,

I know how frightening these test results can be, especially when you don't have the doctor's analysis yet. I have many findings on lung CT scan -- pulmonary nodules, calcifications, possible mediastinal cyst, fibrosis on both bases, and so on and so forth. But what happened about all this was -- absolutely nothing!

They took CT scans every so often for two years. At the end of that time, they decided there had been no appreciable changes. So I never had to have any further evaluation or treatment or surgery or even regular follow-ups.

I certainly wish they had told me ahead of time that many people have findings that turn out to be absolutely nothing! As it was, I spent two years living with dread of the next scan. If they could have even given me a brochure saying that many people live long and happily with all sorts of stuff on their lung CTs, I would have felt a million times better!

So here you go -- many people, like me, live long and happily with all sorts of stuff on their lung CTs. It turns out they don't need any biopsies, tests, medications, nor do they have any really dire diagnoses from it all. Most often, the doctors just track the changes over a few years and then ride off into the sunset, leaving you (quite happily) with no diagnosis or treatment at all.

Then there is your liver. My husband had a spot on his liver. The doctors gave us a real fright about it, when it first appeared! Seriously, we were thinking liver cancer and "curtains". If only they had told us they find many spots they are concerned about that turn out to be nothing. In my husband's case, it is a just a vascular malformation, a liver hemangioma. It's quite large but nothing he ever has to do anything about. Except it nearly stopped one surgery in its tracks as the surgeons saw it and were worried he had cancer, and the surgery only got back on track after I reassured them it was only a hemangioma.

So, until you know more, try to relax (a tiny bit) with the idea that they may be wrong -- they often are, and what seems horrendous or life-threatening can turn out to be little or nothing, some or possibly even most of the time. I'll be hoping yours turn out to be a "nothing" in the long run and if by chance it is any worse than that, we've all got you covered for support.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 Penny

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Posted 02 March 2009 - 12:34 PM

Peggy...

First, huge soothing hugs!

Second, I want to run over the assistant's toes with my wheelchair repeatedly! If the doctor is meeting with the radiologist this afternoon then she should be able to get in touch with you after she meets with him and not in a day or two. The assistant should realize that you are scared and need to know what is going on asap.

I am putting all my thoughts into it being a benign finding and would suggest a serious night of pampering and indulgence for you. I am talking hot bubble bath with candles and music followed by dressing in your most comfy lounge wear and watching a good movie and eating something that you usually deny yourself. I know that saying "try not to worry about it" is easier said than done, but put in your mind that there is nothing you can do about it right now and worrying will only make you flare, so go full force Scarlett O'Hara and do a "I will not think about it now, I will think about it tomorrow."

No matter what the outcome, know that we are here... and my offer will always stand to run over toes!

(((((((Warm Hugs)))))))

Penny

#4 Wohali

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Posted 02 March 2009 - 06:16 PM

First off relax and try not to panic. A 10mm lung nodule showed up on a CT scan I had done in November. The radiologist was so gung ho to scare people he treated me like I was going to die when I had a PETscan as a followup. A pulmonologist determined that I had had Valley Fever.

There's lots of things that can cause lung nodules. I've even been told that the majority of people in the US have a lung nodule, most often caused by histoplasmosis. There's blood tests you can take to rule out tuberculosis, valley fever, sarcoidosis and some others.

#5 janey

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Posted 03 March 2009 - 04:23 AM

Peggy,
I have no experience with this, but I just wanted to send some big hugs your way and emotional support. While you're waiting to talk to the doctor, do things to distract yourself from thinking about what this could mean. We tend to think the worse at times which adds stress making other things going on in your body worse. So take some time off and read, watch a movie, go to lunch with friend. It's going to be nothing. :)

Lots of big hugs sent your way,
Janey Willis
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#6 Jeannie McClelland

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Posted 03 March 2009 - 04:49 AM

Peggy, if you want to go the Scarlett O'Hara route, I'll donate my dark green velvet last-ever long dress. It's got a cowl neckline that dips way down in the back. :D You could mix metaphors and swish around in it singing "Don't worry, be happy!"

Post the results the minute you get them, OK? We'll be waiting!

Big warm hugs,
Jeannie McClelland
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#7 debonair susie

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Posted 03 March 2009 - 05:06 AM

Dear Peggy,

First off, I want to say that I am SO GLAD we have each other to console one another.

Secondly, When Shelley "wrapped her arms around you" and was joined with the others,
I KNEW you had to feel better.

Truly though... it's human nature to react as you did, especially when things are not related in laymans' terms until AFTER we get scared/worried!

I'm so glad we have the "IN HOUSE voices" of experiences who can quell the fears and they come to the rescue at "just the right time" :D !

Peggy, I'm scruffing them with a wet noodle...for sending the report and not including a summary of what you really needed to hear!
(I'm adding a Bear Hug to this)!
Special Hugs,

Susie Kraft
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#8 Peggy

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Posted 03 March 2009 - 07:10 AM

Yesterday I posted about the CT results. Well the pulmonologist called and said that the nodule is small on the lung and she and the radiologist decided to wait and watch it. They will repeat the CT scan in 6 months and year and if the nodule has changed then they will do something about it. The same thing for the cyst on the liver.

I don't know if I'm relieved or not. I guess it's just a wait and see mode. My Mom used to say "no news is good news" so I guess I'll have to use that one for now.

Thanks.

Warm hugs,

Peggy

#9 Shelley Ensz

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Posted 03 March 2009 - 07:21 AM

Hi Peggy,

I'm sorry you were put on the "wait and watch" program. I've been there, done that and I wasted way too much time and energy worrying about it during those two long years.

If I had it to do over again, I'd take the mental approach that they have detected a silly thing, which they often do, and that it will surely amount to nothing at all, which it most often doesn't.

I wouldn't un-worry about it to the point of skipping out on all the follow-up, but I'd temper it with a really good dose of optimism along with gratitude that it wasn't a for-sure-horrible-thing in the first place.

Yeah, I know. Easier said that done! It is so much easier to not worry about things, after we know for sure we shouldn't have worried about them.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#10 debonair susie

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Posted 03 March 2009 - 10:09 AM

Hi Peggy,

Well, Girlfriend, I'm glad the pulmonologist called! I'm thinking that he/she could have given you a bit more info. At the same time, they always seem to catch us off guard with calls like these, don't they?!

In the meantime, we'll be here waiting out the 6 months with you!

Just because, I'm sending over some {{{{Extra Soft Hugs}}}} to you!
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#11 MajorMark

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Posted 03 March 2009 - 11:48 AM

Your nodules might be sarcoidosis which is common in people with autoimmune disease and also mostly harmless and treatable. I also had 4 masses which were biopsied and bronch washed (bronchial lavage) with no cancer. So keep your spirits up because odds favor sarcoidosis, which is inflammation of lymph nodes in the lung. Hang in there and think positive - the treatment is basically monitoring.

Mark

#12 Penny

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Posted 03 March 2009 - 04:18 PM

Peggy,

((((((Warm Hugs))))))

We are here with you, to help pass the time and perhaps plot a few bits of mayhem to help keep your mind off of it.

My offer stands to roll over toes, I will even bring my own mud (rolling through mud before over toes seems to be a bit more satisfying)

Plants you into the middle of a huge group hug

Penny

#13 Wohali

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Posted 03 March 2009 - 04:37 PM

I hope I won't get in trouble for saying this but I think everyone needs to be really careful these days whenever medical employees of any kind start scaring you. I noticed since the economy has gotten bad medical employees (I would call them professionals but they aren't acting very professional) have tried to insist upon a number of tests and procedures that make no sense. The radiology department tried to force me into surgery for something my doctor said was not of concern. When I refused they started calling me on phone and sending harassment letters to try to force surgery. Then it was reported in the newspaper how the local hospital was worried about having to layoff employees because people were not scheduling surgeries due to the economy.

Then another doctor tried to force me to go to another clinic he owned mind you for testing for something that I did not have symptoms of. Then yet another specialist tried to force two elective surgeries when my medical history indicates I should not undergo either procedure. Now my physical therapist is insisting on 3 visits a week instead of the 2 a week prescribed and yep it looks like they don't have much business as its very quiet in there most times I go.

So moral of the story be really careful right now because there are those just trying to profit off sick people. I'm glad your doctor said to just watch the nodule because it sounds like he's a good guy. If he'd been fast to want to biopsy it then I would ask for a second opinion. Lung biopsies are risky and can lead to dangerous infections.

#14 Peggy

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Posted 04 March 2009 - 10:08 AM

It's because of this site that I remain sane. Everyone always bring things into perspective to me and remind me to quit worrying all of the time. I appreciate everyone's hugs and good thoughts and knowledge on this. I guess since all of this came down on me 1 1/2 years ago with this disease that I'm always waiting for the other foot to drop. Well no more waiting! I will try to quit worrying and just go with the flow and one day at a time. Thanks for always being there!

Warm hugs,

Peggy

#15 Snowbird

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Posted 04 March 2009 - 03:12 PM

Hi Peggy

I'm a little late chiming in. I just wanted to send you good wishes. Try not to worry too much if you can help it. Perhaps good old mom is right, as they usually are :)
Sending good wishes your way!

#16 razz

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Posted 05 March 2009 - 08:56 AM

Peggy,

I hope the nodule showing up on your CT scan proves to be nothing serious. I completely understand how unnerving it is to have test results that say anything but "normal". If the pulmonologist and radiologist both agree that the nodule is small and you should wait six months to have it rechecked, perhaps it isn't something to worry about right now. I know it's hard to wait and see. Maybe they can recheck in three or four months instead.

I will be hoping for the best outcome.

Hugs,
Razz
Live well, Laugh often, Love much

#17 jillatk

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Posted 06 March 2009 - 06:08 AM

I just had my CT done yesterday - now I am just waiting for the results. I finally got an appointment to see a rheumatologist on 3/24 who specializes in autoimmune disorders and treats others with this disease. I am working on getting in to see a pulmonologist. So much waiting. At least there are fun things to do whilst I wait. It is snowing today and I am hoping to get out and ski (with lots of hand warmers and gloves).

Has anyone found massage to be helpful in managing the Raynaud's? I already see a reflexologist who works to keep the muscles in my legs and tendons in my feet as flexible as possible and I was thinking about having her work on my arms and hands to see if that reduces the reaction to cold in my hands.

Jill

#18 Wohali

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Posted 09 March 2009 - 03:37 PM

Jill,

The only thing I found helps the Raynaud's is taking Diltiazem plus sleeping in 2 pair of socks in winter, 1-2 pair in summer, wearing gloves outside in winter and avoiding touching cold things.