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Freaking out over Helical Cat Scan
I had a screening for Breast CA with MRI and it was negative, but they found mediastinal nodes. Then Helical Cat Scan which says Bilateral Apical Scarring, multiple prominent nodes within mediastinum--the largest with 18cm short axis measurement. Prominence of right hilum worrisome for adenopathy measuring 2.4 X1.7 cm in size. A precardinal node measuring 1.9 cm in short axis.
I have NO SYMPTOMS. What on earth could this be? They found no cancer on the CAT, just the scarring. After being on the internet I am afraid of metastatic cancer from somewhere(?), although I don't have any symptoms of anything. A recent CBC was normal. I had a colonoscopy a couple of years ago--clean. My husband (RN) thinks it sounds more like scarodosis but I read that this is usually bilateral hilar enlargement.
I have NO SYMPTOMS. What on earth could this be? They found no cancer on the CAT, just the scarring. After being on the internet I am afraid of metastatic cancer from somewhere(?), although I don't have any symptoms of anything. A recent CBC was normal. I had a colonoscopy a couple of years ago--clean. My husband (RN) thinks it sounds more like scarodosis but I read that this is usually bilateral hilar enlargement.
Hi,
It seems you have been through a lot.
Sarcoidosis is a chronic disease, so the estimate that it may have started years ago is probably true (thus eliminating some risks that are within your recent memory). Discuss your risk estimate with your doctor. While it is a good thing to research on your own, (you are correct in assuming that… ) the material you may find on the net may discuss general figures, so the averages would include the very slow growing and the more troublesome variants of the disease.
Stay the course, and keep positive.
It seems you have been through a lot.
Sarcoidosis is a chronic disease, so the estimate that it may have started years ago is probably true (thus eliminating some risks that are within your recent memory). Discuss your risk estimate with your doctor. While it is a good thing to research on your own, (you are correct in assuming that… ) the material you may find on the net may discuss general figures, so the averages would include the very slow growing and the more troublesome variants of the disease.
Stay the course, and keep positive.
Update:
The radiologist was wrong. It was bilateral hilar involvement, which means the differential diagnosis is not so narrow as to point to serious cancers, as unilateral right side hilar involvement is. So I freaked out that entire week when it was not unilateral right hilar involvement, but bilateral. Both the pulmonalogist and the radiologist could clearly see right away it was bilateral, but it took 4 days to see the pulmonalogist and another 4 days (over weekend) to see the surgeon, who agreed with the pulmonologist that it was bilateral hilar. Two days later, I had the medialstinoscopy and biopsy which showed sarcoidosis (lymph nodes only--stage one.) I am approaching this with a combination of antibiotics (minocycline) and monitoring. If it progresses to stage II, I will likely try the Marshall Plan, which is a more intensive approach to treating the disorder as a bacterial invasion plus a poor/incomplete and over-reactive immune response. Right now the granulomas are only in my lymph system. In many ways, I wish I did not know, especially if it comes and goes and I never have symptoms. I had one Dr. tell me it would take 10 years before my lymph nodes were this big after exposure to whatever triggered this; another said it was likely 4-12 months ago. The fact that I was exposed to a chicken that died from mycoplasm 3 months ago doesn't seem to be a factor, although many scientific studies point to mycobacteria as a major possible cause of sarcoidosis. Then again, it might not be related to mycobateria at all. Often the cultures do not show the bacteria, although the debri left by bacteria is sometimes found in autopsy biopsy and several studies have cultured mycoplasm and other bacteria from granulomas (not blood.) There doesn't seem to be much known about this disorder and the primary treatment is to watch and wait and then douse with steriods if the symptoms get too bad---not to stop the disease but to control symptoms. Of course the steriods lead to other problems and some mobidity is directly related to the treatment by steriods. I hope and pray this disease does not progress. One Dr. said since I am white, my chance of progression and treatment being needed is less than 5%. However, several internet sites say 60% of people have remission who have stage I, and another 30% progress and need treatment, and up to 10% die. I assume this includes all races, ages, stages, asymtomatic or not... including African Americans who often have the disease manifest in a much more horrible way. However, there is no way to tell at this point if we just found a stage I early and it will continue to progress or a stage one that will go away. I have to wait and see, which is difficult. With this said, I am most thankful it was not metastatic cancer, bronchogenic cancer or lymphoma, and even if I have the progressive and disabling kind, chances are I have a good ten years or maybe more, although at age 56 (10) years doesn't seem like such a long time. Other than this, I am very healthy and have worked hard to stay healthy, exercise, monitor my lipids, colonoscopy, regular checks ups, yearly mammograms, etc and don't drink, smoke, etc.... Fortunately, my physicians were very sensitive to the obvious anxiety the "waiting" for the final diagnosis created for me, and did the surgery as quickly as possible--one week after the cat scan. They have been as reassuring as a person could be. Now we wait and watch, pray and hope for the best outcome.
The radiologist was wrong. It was bilateral hilar involvement, which means the differential diagnosis is not so narrow as to point to serious cancers, as unilateral right side hilar involvement is. So I freaked out that entire week when it was not unilateral right hilar involvement, but bilateral. Both the pulmonalogist and the radiologist could clearly see right away it was bilateral, but it took 4 days to see the pulmonalogist and another 4 days (over weekend) to see the surgeon, who agreed with the pulmonologist that it was bilateral hilar. Two days later, I had the medialstinoscopy and biopsy which showed sarcoidosis (lymph nodes only--stage one.) I am approaching this with a combination of antibiotics (minocycline) and monitoring. If it progresses to stage II, I will likely try the Marshall Plan, which is a more intensive approach to treating the disorder as a bacterial invasion plus a poor/incomplete and over-reactive immune response. Right now the granulomas are only in my lymph system. In many ways, I wish I did not know, especially if it comes and goes and I never have symptoms. I had one Dr. tell me it would take 10 years before my lymph nodes were this big after exposure to whatever triggered this; another said it was likely 4-12 months ago. The fact that I was exposed to a chicken that died from mycoplasm 3 months ago doesn't seem to be a factor, although many scientific studies point to mycobacteria as a major possible cause of sarcoidosis. Then again, it might not be related to mycobateria at all. Often the cultures do not show the bacteria, although the debri left by bacteria is sometimes found in autopsy biopsy and several studies have cultured mycoplasm and other bacteria from granulomas (not blood.) There doesn't seem to be much known about this disorder and the primary treatment is to watch and wait and then douse with steriods if the symptoms get too bad---not to stop the disease but to control symptoms. Of course the steriods lead to other problems and some mobidity is directly related to the treatment by steriods. I hope and pray this disease does not progress. One Dr. said since I am white, my chance of progression and treatment being needed is less than 5%. However, several internet sites say 60% of people have remission who have stage I, and another 30% progress and need treatment, and up to 10% die. I assume this includes all races, ages, stages, asymtomatic or not... including African Americans who often have the disease manifest in a much more horrible way. However, there is no way to tell at this point if we just found a stage I early and it will continue to progress or a stage one that will go away. I have to wait and see, which is difficult. With this said, I am most thankful it was not metastatic cancer, bronchogenic cancer or lymphoma, and even if I have the progressive and disabling kind, chances are I have a good ten years or maybe more, although at age 56 (10) years doesn't seem like such a long time. Other than this, I am very healthy and have worked hard to stay healthy, exercise, monitor my lipids, colonoscopy, regular checks ups, yearly mammograms, etc and don't drink, smoke, etc.... Fortunately, my physicians were very sensitive to the obvious anxiety the "waiting" for the final diagnosis created for me, and did the surgery as quickly as possible--one week after the cat scan. They have been as reassuring as a person could be. Now we wait and watch, pray and hope for the best outcome.
Hi,
kind doc raises some good points.
I think the first place to start is with the indication for the imaging. Are you a newly diagnosed case of breast cancer? A survivor? how long ago were you diagnosed? Do you have a history of breast cancer at all or are you undergoing evaluation of your breasts or a breast mass?
The indication for the imaging would depend on the likelihood of finding something significant. If your risk for lung involvement is pretty high, then there would likely be other areas involved, particularly bone and liver. It is atypical for breast cancer to have only the lung as a site of metastasis, hence, an investigation would indeed be of paramount importance.
kind doc raises some good points.
I think the first place to start is with the indication for the imaging. Are you a newly diagnosed case of breast cancer? A survivor? how long ago were you diagnosed? Do you have a history of breast cancer at all or are you undergoing evaluation of your breasts or a breast mass?
The indication for the imaging would depend on the likelihood of finding something significant. If your risk for lung involvement is pretty high, then there would likely be other areas involved, particularly bone and liver. It is atypical for breast cancer to have only the lung as a site of metastasis, hence, an investigation would indeed be of paramount importance.
MEDICAL PROFESSIONAL
Hi, How are you?
Medistinal lymphadenopathy is enlargement of the lymph nodes located within the mediastinum and the hila, diagnosed on radiological examination. There are many causes of mediastinal and hilar lymphadenopathy, including infection, neoplasm, granulomatous disease and reactive hyperplasia. Sarcoidosis is a highly frequent cause of intrathoracic lymphadenopathy, particularly in young adults.
Chest radiographs and CT scanning have become the standard techniques for demonstration of intrathoracic lymphadenopathy.
In CT scans, Diffuse mediastinal involvement is more typical of lymphoma, large cell undifferentiated carcinoma and acute or chronic mediastinitis.In sarcoidosis,post contrast enhancement of enlarged hilar and mediastinal lymph nodes is there.
The CT appearance, as well as the associated features may help determine the cause of lymphadenopathy. In many circumstances, however, biopsy is required to establish the specific diagnosis.
http://www.medcyclopaedia.com/library/topics/volume_v_1/l/lymphadenopathy_mediastinal.aspx
pls take the opinion of an oncologist/chest specialist for a confirmatory diagnosis.
Regards and take care.
Medistinal lymphadenopathy is enlargement of the lymph nodes located within the mediastinum and the hila, diagnosed on radiological examination. There are many causes of mediastinal and hilar lymphadenopathy, including infection, neoplasm, granulomatous disease and reactive hyperplasia. Sarcoidosis is a highly frequent cause of intrathoracic lymphadenopathy, particularly in young adults.
Chest radiographs and CT scanning have become the standard techniques for demonstration of intrathoracic lymphadenopathy.
In CT scans, Diffuse mediastinal involvement is more typical of lymphoma, large cell undifferentiated carcinoma and acute or chronic mediastinitis.In sarcoidosis,post contrast enhancement of enlarged hilar and mediastinal lymph nodes is there.
The CT appearance, as well as the associated features may help determine the cause of lymphadenopathy. In many circumstances, however, biopsy is required to establish the specific diagnosis.
http://www.medcyclopaedia.com/library/topics/volume_v_1/l/lymphadenopathy_mediastinal.aspx
pls take the opinion of an oncologist/chest specialist for a confirmatory diagnosis.
Regards and take care.
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