Ceff
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Posts posted by Ceff
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My heart aches for you.
My deepest sympathies,
Carole
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I am so very sorry for your loss.
Carole
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Thank you, all for your support and advice. The pulmonologist is insistent that he will not release the CT report unless he can go over it with me, so I'm going back next week to check it out.
I'm not comfortable yet, but not as worried as before.
Carole
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I am so sorry that you didn't receive better news. Your positive advice and attitude has been an enormous help to me in dealing with my nodule scare. I'm hoping that your tumor is just going out in a blaze of glory and will go kaput. You are in my thoughts and prayers.
Carole
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I've also been on the nodule rollercoaster--my pulmonologist is going to do another CT in 3 months to see if there's any changes.
Praying that you will receive good news and can finally receive treatment for whatever it is!
Carole
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Keeping your dad & family in my thoughts and prayers.
Carole
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After what seemed liked the longest 2 weeks of my life, I had a followup chest CT after an abdominal CT revealed a single indeterminate pulmonary nodule in my lower right lung with spiculated margins (1.2 cm). I have chronic active hepatitis B and experiencing discomfort behind my lower right ribs, which is why I had a CT (scan found no abnormalities with my liver).
My nonsmoking aunt died from lc last year--stage I when discovered, removed by surgery--reoccurred 2 years later, and she was gone in 8 months.
My pulmonologist met with me following the chest CT and we looked at the results together. He said the lower lobe rt nodule first found in the abdominal CT was unchanged.
He found several other nodules--there was one in my upper right lobe around 4mm with a halo around it (he called it broken glass) that in total measured around 11mm. There were at least 2-3 other nodules he pointed out, and 1-2 of them were in my left lung.
Pulmonologist said the finding of more nodules was indicative of bacterial, inflammatory, or scar tissue--not lc. He said, who knows, it could be from your hep b, a kind of allergic reaction to the virus--everyone's body reacts differently. This one sounded really far-fetched to me and I googled away and could not find any instance of lung nodules attributed to hep b.
Because of my age (39), nonsmoking history, and lack of any other symptoms, he thinks it is safe to just monitor for 2 years with my next CT in 3 months.
I've also been seeing an oncologist who's been tracking some slightly enlarged lymph nodes in my neck for the past 18 months. He extended the CT scan to include my neck, and I see him next Monday.
He already set me up with a surgeon to do a biopsy of one of the neck nodes, although the final decision is pending the CT scan findings. When I mentioned the possible biopsy to the pulmonologist, he said he thought it was a good idea, and to let him know what the outcome was because it may shed light on the lung nodules.
I called the pulmonologist's office the next afternoon to get a copy of the Chest CT report and the doctor's report. I got a message that I had to come in to see the doc so he could go over the CT report with me. But he already looked at the actual scan with me, why would he have to go over the report unless there are different interpretations from his own? Maybe he forgot that he already met with me? I'm a little perturbed.
So ... many nodules = a good thing? Am I supposed to feel better with this kind of finding?
Thanks for all your support--it really helps.
Carole
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Thank you so much for all the replies and advice.
I know this information puts things in an even more ominous light--I've kind of been in denial that the two could be related to each other, but I saw an hemotology oncologist yesterday who's been tracking a few slightly enlarged lymph nodes in my neck/groin/armpit areas for the past 18 months. My chest x-ray from 18 months ago showed no enlarged nodes in my chest (& my lung nodule is too low to be seen on an x-ray, so this x-ray provides no information for my pulmonologist). Initially my primary care doctor ordered many tests to rule out a number of infections/viruses that could be the cause of the lymph node enlargement, and when it got to the point where I saw the oncologist, he felt the nodes were in the "high range" of what he'd consider "normal," so we'd do watch & wait to see if they got bigger. I changed oncologists after moving and the new one concurred with the previous diagnosis and said even if it was an indolent form of lymphoma, they wouldn't treat it until I started manifesting symptoms.
After reviewing the reports on my lung nodule, the oncologist is ordering an extension of the CT scan to include my neck and also referred me to a surgeon to biopsy one of the nodes in my neck (this will happen after the CT scan scheduled in 2 weeks). He said the PET scan would also give him info on my nodes (he talks about it like there's no question the PET scan's going to happen), but no matter what the outcome with the lung nodule or other tests, he wants the node in my neck biopsied.
As for the 2-week waiting period ... the pulmonologist said he wants to wait 2 weeks to see if maybe the nodule will get smaller or disappear. He assured us that if it is malignant, waiting 2 weeks wouldn't make any difference. He seems to be a very cautious doctor--I'm not sure if that's a good thing, or not? He's IS rather insensitive. When I expressed anxiety over waiting 2 weeks for the next scan, he said, "well, you wouldn't want us to operate and find out it's benign, would you?"
Of course I expect them to be sure before they operate, I'm not asking him to exclude steps, I was just expressing frustration that they can't happen faster so I can figure out what I'm facing. Sheesh!! I guess it won't hurt to get another referral, although I have resigned myself to the 2-week wait.
I seem to have moved into a new phase from outright fear of the unknown to a "be prepared" acceptance that I can handle whatever comes my way. I am still hopeful and praying that every next step will lead to those words I so want to hear, "don't worry, everything's fine!!"
It's really helped to read all the posts of such strong and supportive people who have been through so much with such grace. You have all touched my heart and are in my prayers.
Carole
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Thank you, everyone, for the support and words of encouragement.
You are a group of very special people--your warmth and caring for each other is so comforting and I'm grateful for the warm welcome from all of you.
I know that I'm truly blessed with a wonderful life and I treasure each day.
Somehow it helps me to know more and find out as much as I can. My gut tells me I should be prepared.
Thank you for letting me hang out here ... It really helps a lot.
Carole
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Hi, I'm here because I've been diagnosed with a 12mm lung nodule in my lower right lung (CT scan). My gastroenterologist ordered the scan because I have chronic hepatitis B and I've been feeling discomfort in the area where my liver is.
My liver seems to be fine, but the CT picked up the nodule, which was described as "indeterminate," and having "spiculated margins." The recommendation was to do a full chest CT for other nodules. The CT doctor indicated that the nodule would likely not be visible on an x-ray because it's so low, and he was right.
I saw a pulmonary specialist today and he wants to wait 2 weeks for the chest CT to see if there's any change in the nodule (he said if it's smaller or disappears then there's nothing to worry about). If it's still there, he said he'll order a PET scan, and if it indicates cancer, he'll have a biopsy performed.
My nonsmoking aunt died last year from lung cancer at 74. They caught it very early on a scan, had her liver resected, no chemo. 2 years later, the cancer was back in her lungs and had also spread to her brain. She died 8 months later.
I'm 39 and a nonsmoker all my life. I know that "spiculated margins" is cause for suspicion, so I'm worried. It's so very hard to wait.
I want to be strong and stay positive, but it's nervewracking. I keep thinking "what if ..." and wondering what will happen. I've already had a series of tests for my liver, but now I'm in new and unfamiliar territory.
Thanks for letting me vent ...
Carole
multiple nodules ... dx with rare disease
in MEMBER UPDATES
Posted
First of all, I have to express my gratitude to Katie and all of you at this wonderful board. I have found so much strength here and been inspired by everyone's support and positive attitude. You don't know how much it has helped me!
I had multiple nodules show up on my CT scan--in both lungs & all lobes, along with linear scarring. Some nodules are fibrotic, some are ground glass nodules, one has spiculated margins, and there is an area of lucency in my mediastinal area that looks like inflammation.
Last week I had a lymph node in my upper thigh (inguinal) taken out and biopsied. I've had enlarged (upper range) lymph nodes for a few years now, but I was asymptomatic, so doctors weren't concerned.
The lab report came back saying the lymph node had a proliferation of plasma cells consistent with Castleman's Disease, a rare disorder of the lymph system.
It's a benign disorder, but the more serious version of the disease (called Multicentric Castleman's Disease [MCD]) is systemic and can behave in a malignant manner. I seem to have this more serious form.
The stats are rather scary--with MCD 50% die within 2-1/2 years of diagnosis. But I learned from all of you to say "phooey!" to the stats, I'm going to do what it takes to beat this thing!
Symptoms are similar to lymphoma--low-grade fever, night sweats, malaise, fatigue, itching, hives, etc.
Treatment ranges from steroids, chemo, antivirals, to new experimental drugs.
My doctor is still trying to figure everything out, but I think my pulmonary nodules are caused by a form of plasma cell interstitial pneumonia that is causing inflammation and scarring on my lungs. An upper GI endoscopy also found cell infiltrates in my stomach lining, causing gastritis.
For many years now I've had weird medical ailments, aches & pains. I felt like a hypochondriac, yet they would always find something wrong.
Anyway, I thought some of you in the nodule club and others of you who were so kind to provide encouragement & support would be interested in finding out my diagnosis.
Thanks again to all of you!
Carole
p.s. I saw a post from Bibala last week, a user name I recognized from a pet board where I "met" Libby/Addie. She was a wonderful person, I looked up her posts here and laughed and cried as I read through them. I will carry her in my heart, along with all of you.