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#1 Sweet

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Posted 30 September 2011 - 08:08 PM

Hello everyone,

I have been short of breath for a year. Each visit my rheumatologist listens to my lungs and says they sound fine. I finally asked last week if I could see a pulmonary doctor. He suggested I get a high resolution CT first, and if it was normal there would be no reason to see a specialist, and if it were abnormal, he's send me to the lung doctor.

So, I had my CT done yesterday. Today my rheumatologist's medical assistant calls and says, "The doctor wanted me to tell you that you have 2 nodules in your lungs, and it's probably because of your connective tissue disease". I said "Okay, so what's the next step?" She said, "Nothing. He just wanted me to tell you." I told her I wasn't comfortable with doing "nothing" because of my family's medical history. Everyone has died of cancer, my brother at age 43, my dad at age 49, my mom at age 59. I told her to fax the report to me, and have the doctor call me. He's on vacation until the middle of the October. I'm trying not to worry, I did the thing we should never do and looked it up online, at first that helped, then as I read the details, it made it worse. Being a nurse doesn't help either.

She only told me part of the story, she said I had 2 nodules, but in fact I have 3, I also have lesions around my liver, and my pancreas is atrophied. I have an appointment with my primary care physician on Tuesday, and I'll address it with him. I would think at the very least, I should see a lung doctor. I mean good grief, "Just don't worry about it." I guess it's so normal for people to have nodules in their lungs that you just don't worry about it?

Oh also, as I mentioned she said he told her it was probably due to the connective tissue disease, but it says RIGHT IN BLACK AND WHITE on the report, "No evidence for interstitial lung disease. Typical findings of nonspecific interstitial fibrosis in patients with Scleroderma is absent." So why would my rheumatologist tell me it's because of my CTD?

Anyway, anyone else with nodules?
Warm and gentle hugs,

Pamela
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#2 red

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Posted 01 October 2011 - 06:23 AM

Sweet, so sorry you're going through all this! Do you have any family or close friends who are helping you cope?

I've had high resolution CTs yearly since my diagnosis in 2008. First 2 were normal, then over 2009/2010 winter I developed shortness of breath and chest pain; I had H1N1 flu then pneumonia. The SOB continued after recovery, but I was told it was residual asthma and inflammation from the infections. My April 2010 CT was again normal. By Dec 2011, I had worsening lung symptoms and developed numerous lumps on my elbows and fingers, was told first they were calcinosis, then when I developed more, my rheumatologist took xrays - not calcinosis....."maybe rheumatoid nodules?" Ordered a biopsy of the lumps which showed inflammatory granulomas, highly suggestive of sarcoid (TB and other infectious diseases were ruled out by the biopsy.) More tests - blood had elevated ACE, calcium and calcitriol, urine had high calcium as well. PFTs dropped significantly with total lung capacity and DLCOs both in the seventies this year.

By this time I was due for yearly CT scan and lo and behold - there were multiple lung lesions and enlarged mediastinal lymph nodes - the rheumatologist told me that normally if they see these they would suspect lymphoma, but because I had the skin lesions' biopsy already, he knew these lung findings were sarcoid lesions. Sarcoidosis is another autoimmune disease, which my rheumatologist tells me is not so uncommon to co-exist with scleroderma, and a lot of the symptoms are shared - fatigue, joint and muscle pain and weakness, lung and/or cardiac issues... It's certainly not a great diagnosis, but better than cancer.

It;s unfortunate that you don't have a prior CT to compare with, there's no way of knowing how long you've had your nodules. I know from my research on sarcoidosis that it can cause liver lesions as well, don't know if it affects the pancreas.

I'm an RN too, I hate it when I've read my reports and the doctors haven't told me everything they see! (My last CT shows new multiple osteophyte lesions on my spine - probably arthritis but could be sarcoid lesions as well, no way to know except to biopsy... but my doctors have never addressed this finding with me yet, grrrr!) We have a right to know, and most patients, even those without formal medical education, will research and educate themselves as to their disease, and will be informed enough to intelligently converse with their doctors. It's extremely paternalistic for doctors to withhold information because...why?...do they think we can't understand or can't emotionally deal with the findings? It's infuriating!

I agree with you that I wouldn't be comfortable with ignoring the lesions and just assuming they are part of scleroderma. At minimum, you should see a pulmonologist and probably have a repeat CT in 4 months or so to see if there is a progression...and certainly a more aggressive approach would be to biopsy a lesion immediately. Have you had recent bloodwork to check on sed rate, liver function, etc?

Know we're all with you in spirit, and will be here to support you! Let us know how your appointment with your primary goes.

In the meantime, thinking of you and sending you hugs,

red

#3 Joelf

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Posted 01 October 2011 - 07:24 AM

Hi Sweet,

I'm so sorry that you're having to deal with such a lot of anxiety over the lung nodules. It must be very worrying for you especially with your family's medical history. Certainly the option of doing nothing and basically hoping for the best wouldn't suit me at all, either!

I do think that you ought to be seeing a lung specialist as they are really the best people to advise you of the treatment you should be having. Would it be possible for your rheumatologist to refer you to one? Thankfully, I haven't had lung nodules, although I do have non specific interstitial fibrosis, so I'm afraid I can't advise you about this from my own experience and can't really add anything in that respect to Red's excellent post.

I've found another thread on lung nodules here which I'm hoping might give you some more information. I do hope you can get more help and advice from your rheumatologist when you have your October appointment and I'm thinking of you and sending you a large :emoticons-group-hug:

Best wishes to you,

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#4 CraigR

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Posted 01 October 2011 - 09:07 AM

I have had lung nodules removed through bronchioscopy. They were found by CT ordered by my pulmonologist who treats my pulmonary hypertension. The treatment can improve breathing slightly if the nodule is blocking a section of the lung. There is also a risk of infection if the nodule is blocking the flow of air.

Craig.

#5 debonair susie

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Posted 01 October 2011 - 09:32 AM

Hi Sweet,

Unless your insurance requires you have a doctor's referral, I would make the appointment with the pulmonologist without a second thought! With the uneasiness you are feeling, you deserve a satisfactory answer to all of this, exhausting your options to that end.

Take care, my friend and please keep us posted. (In the meantime, I hope you are able to enjoy your weekend).

Loving Hugs.
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#6 Sheryl

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Posted 01 October 2011 - 07:33 PM

Sweet, when I had nodules on my lungs I had to have CT's every 4 months then 2 times yearly for 4 years. I started with 2 or 3 and then had clusters of 4 or more on a couple occasions. I was lucky eventually they just went away. Or so I was told. Hopefully yours will go away also. Go to a pulmonary doctor if it will set your mind at ease. He can run similar tests and do your PFT's and get a better picture of what is going on. I will be thinking about you and hoping you aren't stressing yourself out to much. I know it can be hard not to get stressed. We already have so much on our platters to deal with. Let us know what your primary doctor wants you to do.
Strength and Warmth,
Sheryl

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#7 mews

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Posted 02 October 2011 - 05:30 PM

Debonair susie, you hit it right on the nose,

If I feel that I should be seeing a certain type of doctor I go see that doctor. I don't wait for some of the doctor's doing their power plays to decide when. My cardiologist told me I had a strong heart and that I had a mild pericardial effusion, and some thickening of the left side of the heart, and to see my rheumatologist as she will very interested in these findings. Well a couple of days later I got the report and I was shocked. There were so many things wrong that he didn't tell me about it was crazy, like PAH...how do you not tell a patient about that!

I hear it over and over again, "You're your own best advocate!".

Stay Well,

Mary

#8 Shelley Ensz

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Posted 03 October 2011 - 10:56 AM

Hi Sweet,

Oh dear me. I know how you feel, I've felt the same way myself. Both my mom and dad had lung cancer. Way back in the 90's, a CT scan of my lungs showed 2 nodules, granulomas, a mediastinal cyst, another thing I can't recall the name of at the moment and/or pleural effusions, and fibrosis on the bases of both my lungs.

My doctor said they were all no big deal and didn't attribute any of the findings to anything at all. I had to have follow-up scans every so often for a few years. At the end of that time, there was no change in anything. It was all declared to be just fine and I haven't had that looked at since.

What perturbed me most of all in the beginning is the worry factor, because of my strong risk of lung cancer on both sides of the family plus I have a history of having smoked for 20 years and having also been a passive smoker for 20 years on top of that, and I am a TB carrier to boot (as was my mother.)

I asked my doctor about having a lung biopsy and he said it would be unnecessary, that what matters is whether or not the nodules grow over time. It turns out that the imaging they can do today can show up a zillion abnormalities that are in reality nothing serious. My doctor was also concerned about the unnecessary risk to my health from the biopsy.

Gene has had to have many lung biopsies since his lung transplant as it is part of the normal protocol to help detect early signs of rejection and infection. It is day surgery that only takes about an hour and then an hour of recovery and an x-ray to make sure it didn't cause a dread pneumothorax (collapsed lung).

All things considered, I really wish someone had reassured me at how extremely common these sort of findings are on CT scan and not left me to my own devices to worry about it. I felt a bit like a ticking time bomb and when all was said and done, I was mad that I had wasted a single second of worry on the whole thing. But with my family history, how could I not?

My guess is that they will order some follow up scans for you. I seem to think I had more frequent scans the first year and then they tapered down. Oh no, what tapered it down was me; I felt comfortable cancelling some of them after I was stable the whole first year.

There's no way I can tell you to actually feel comfortable with this. I know I still wished they had done some biopsies right away as it would have added to my peace of mind tremendously. On the flip side of that, I do my ever lovin' best to avoid any procedure that could possibly worsen my health unless it's an absolute necessity, and the lung biopsies are invasive and are not entirely free of complications or risks.

No matter how you proceed, remember we are always with you and hoping for the best.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

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

#9 Sweet

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Posted 06 October 2011 - 09:41 AM

Ohhhh THANK YOU ALL, for your words. They're very comforting. I'm feeling better about it. It took me a few days to digest all the options. I saw my primary care physician this past Tuesday. He was a bit mortified my rheumatologist was willing to do nothing.

So here is the plan: He's setting me up with a pulmonologist, and he ordered an abdominal CT, to be done the same day (as abdominal pain and problems was why I made this appointment weeks ago in the first place.) Reasoning on this is to rule out any other lesions, in case the lung nodules prove to be metastatic, in addition to getting a better look at the pancreas. (he said the atrophied pancreas means cells are dying off and we need to figure out if it's due to cancer or if it's hardening) Depending on that outcome, and advice from the Pulm doctor, he wants to ultrasound the cysts on liver, he says ultrasound is the best way to look at cysts. He also wants me to repeat chest CT's every 3 months for a year to see if the nodules change. He TRIED to order a CA 19-9 which is a test that specifically tests for pancreatic cancer, but my insurance wouldn't pay for it, and it cost a couple grand I guess. The insurance WOULD pay for it if I already had pancreatic cancer....now what sense does that make!? I remember when I was working as a nurse, it always blew my mind that Medicaid/DSHS would not pay for birth control for patients, but once a girl got pregnant they covered the entire pregnancy, hospital bill, doctor bill, and the care continued on after that. What is wrong with these people?? Wouldn't the $20 birth control pills have been cheaper? That's the government for ya. OK I'll shut up about that.

So, I'm waiting now on the phone call telling me when my appointments are. He did say there is a 50% chance they nodules are metastatic cancer...but I'm thinking positive and figuring I'm the good 50%.

Thanks as always for being here! Your advice and personal experience, not to mention support is priceless!
Warm and gentle hugs,

Pamela
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#10 Joelf

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Posted 06 October 2011 - 11:32 AM

Hi Sweet,

I'm so pleased that you've been referred to a Pulmonologist and that they're going to run more examinations and tests to try and get to the bottom of it for you. Infinitely preferable to doing nothing!! :rolleyes:

I do hope that you get your appointments very soon and that the results of your CT scan and ultrasound are good. I'm thinking positive for you as well and hoping that you're in the good 50% !! :emoticons-i-care:

:emoticons-group-hug:

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#11 Bleev

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Posted 08 October 2011 - 01:07 PM

Sweet, Sending good thoughts your way--please continue to let us know how you are doing.

#12 Amanda Thorpe

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Posted 09 October 2011 - 11:00 AM

Hello Sweet

You ARE going to be in the good 50% and that's that. When I had my pacemaker/defibrillator put in the cardiologist said that 30% of people never feel any benefit and I was determined that I would not be in that 30% and guess what, I ain't! You're going to join me in the good % corner as well! :yes:

I am sorry that you have all this to contend with, it can feel really overwhelming at times but we are here for you, :emoticons-group-hug: who I believe coined the phrase "be your own advocate?"

Take care.
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#13 Sweet

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Posted 11 October 2011 - 10:10 AM

Ha Amanda you are so right! Love being my own advocate, and the sad thing is most of the time if I'm not, it seems nothing gets done! Still awaiting a call to find out when my appointments are. I called yesterday and the girl that makes the appointments had gone home for the day. I told them I fully expected a call today with dates and times. I mean how hard is it to pick up a phone, and make an appointment? Not long!
Warm and gentle hugs,

Pamela
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#14 debonair susie

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Posted 11 October 2011 - 10:32 AM

Hi Sweet,

Good, good! However, with what you mentioned, you would think this would be preventative medicine....HELLLLOOOO Insurance companies :emoticon-dont-know:

Anyway Girlfriend, I'm glad you have a doctor in your corner; maybe the verbage could be (put in the report) as such that the insurance company would cover the CA19-9 test.

Been there, with ALL sorts of situations, whereas offices are much less than expedient about returning calls; I'm going through that right now, as a matter of fact :crying:

Please keep us posted as all of this unfolds, Pam. In the meantime, I'm keeping you in my thoughts.


Special Hugs,

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#15 Shelley Ensz

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Posted 12 October 2011 - 05:30 AM

So, Sweet, have you gotten an appointment yet?

We could all take lessons from you in how to advocate for ourselves. But sometimes it seems like there's absolutely no end to the project, doesn't it?

I'm thinking about you and sending lots more warm hugs.

:emoticons-group-hug:
Warm Hugs,

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

#16 Sweet

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Posted 12 October 2011 - 10:28 AM

FINALLY just yesterday I got the call. My appointment is on the 26th. Only because there was a cancellation, otherwise he's booked until after the first of the year. I also get my abdominal/pelvic CT that day as well. So things are moving along.
Warm and gentle hugs,

Pamela
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#17 Joelf

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Posted 12 October 2011 - 02:07 PM

Hi Sweet,

I'm so glad to hear you managed to get an appointment relatively quickly, even if it meant you had to take a cancellation. At least you can get the CT scan dealt with that day as well so things are moving. :emoticons-yes:

I shall be thinking of you. :emoticon-hug:

Best wishes,

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#18 debonair susie

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Posted 13 October 2011 - 03:36 PM

That is GREAT news about your getting in because of a cancellation; miracles never cease, do they?!

Continuing to hold you in my thoughts, Sweet. Please keep us posted....
Special Hugs,

Susie Kraft
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#19 Shelley Ensz

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Posted 21 October 2011 - 06:44 PM

Hi Sweet,

Is it the 26th yet? Oh dear, no it isn't. Time sure goes by slow when waiting for an appointment, doesn't it? I'm sending good thoughts your way.

:emoticons-group-hug:
Warm Hugs,

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

#20 Sweet

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Posted 22 October 2011 - 09:51 AM

Thanks Shelley! This coming Wednesday is the day. I think I'm more worried about the abdominal/pelvis CT then the lungs. I keep thinking if it were really serious wouldn't my rheumatologist have been a little more concerned.... I don't know. Guess I'll find out soon. I've been doing fairly well with the waiting, but getting nervous again as the day draws near.
Warm and gentle hugs,

Pamela
ISN Support Specialist
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