I have been told after a recent polyp removed from cervix that after Congo red staining pathology I have amyloidosis - don't know if it is localized or systemic What does this mean. If it is localized what do they do next
I am an unusual case, having Immundeficiency (IGG), Primary Amyloid and Alpha One Antitripsin Deficiency. It is very difficult to find any doc who would touch me. One sis died from the Alpha, 2 others are symptomatic and the fifth is well on her way. I am the only one with all 3 problems. Is there any recommendations?? I am currently going to Shand's Hospital letting them do research on my for the A1AD. NO Infectious Disease doc will take me with this many issues. What do I need to do from here? I am from a small south Georgia town......
If the appropriate scans were done, then the nausea may only be part of her recovery from the surgery which would mean that it would improve over time. Observe if the symptom is intermittent or if it seems to be persistent and worsening. If she is taking medications for pain after surgery, then some of these medications may be contributory. It would be something to discuss with the doctor as well. Stay positive.
Thank you for the response. Mom does not have headachces; nor does she complain of diffuculty swallowing. Her July 2008 PET scan included a head scan, which showed no SUV activity in her brain. Would a metastasis to the brain have showed on the PET scan?
Should we be concerned with the continued nausea? Or will it just go away at some point?
Lung cancer may locally invade into the esophagus, however, it would be more likely for esophageal cancer to invade into the trachea (this is the large tube that runs up the neck, and divides into 2 tubes for the 2 lung in the chest. It is more probable that the finding may be a lymph node. In either case, there may be compression of the esophagus and this may cause pain or create a sensation of obstruction during swallowing, not really nausea. Does she have headaches? For nausea, I would be more concerned with brain metastasis.
Thanks again for your response. Does lung cancer ever metastisize to the esophagus? Mom's PET scan showed "Mild bowel patter. Diffuse FDG activity mid distal esophagus SUV = 2.9" Could there be a tumor in this region and could this account for her nausea?
Cough could be a symptom of decreased capability of the lung to clear natural secretions. The lining of the normal lung is able to clear secretions efficiently up the throat (you can think of the lining as bearing a number of little arms lifting small amounts of fluid) and down into the stomach (an action which doesn’t require a voluntary retch or swallow). If there is an increase in secretions, then there would be a cough which would serve as a menas of expelling the secretions. If the lining is destroyed by smoking, or is scarred during the surgery, you would also expect coughing fits. What would be difficult to define is what constitutes what is within the range of normal. If there are symptoms of nausea during the coughing fits, then this may be excessive. She may benefit from cough suppressants. Another thing to consider would be to consider lung rehab (which would use some exercises, body positions in order to improve drainage).
Thank you for your reply. What is "perennial cough?" Mom is complaining of having a considerable amount of thick, clear phlegm that she needs to expel in the morning. She believes the phlegm is making her really nauseas. She doesn't feel better until she coughs it up. Is that perennial cough?
We are also concerned about her heart rate. Within the last week, her resting heart rate is elevated to between 110-120 bpm in the morning hours after just waking up but then lowers to 90s in the afternoon. Any idea as to what may be causing this? Her cardiac function test prior to surgery was very good. She has no serious history of heart disease, though she does take some blood pressure medication.
I appreciate your kind responses. It helps ease our anxiety. Many thanks.
Stage 1B is indeed controversial whether or not there would be a benefit for giving chemotherapy. They have been included in trials which demonstrate an overall benefit for giving chemotherapy (but it seems that the results are driven by those that have more advanced disease). There is no clear guide at present about what to do, but there are suggestions that those who are staged 1B that are smaller than 4 cm may not benefit from chemotherapy. This is something you could discuss, although the basis of this recommendation is from the same trials that cannot provide a definite answer. You could think of it as a middle ground to estimate which patients with the same stage may benefit. Current trials evaluating stage IB disease are limiting recruitment of patients with tumors more than 4 cm.
IF the decision is no further treatment, then just watch out for any symptoms on the other lung. There may be some adjusting to the lower volume of the left lung, so she may not be active as before, or may get tired quicker. Any problems, whether perennial cough to progressive difficulty breathing should be evaluated.
The medical oncologist has opined that she does not need chemotherapy at this time. Initially, her surgeon felt she would because of the size and behavior of the tumor he removed from her left lung. He staged her 1B on grounds there was no metastisis nor lymphnode involvement. But, he said the tumor was over 3 cm and had "been there a long time." It also traversed the pleura. After consulting with the medical oncologist, it was decided that the best approach at this time is to hope they got all the cancer from the left lobes and to wait and see what the right lung lesion brings (if anything). Shall we obtain a second medical oncologist's opinion? She will have an x-ray in two months and re-visit her surgeon at that time. What should we be concerned about at this point?
Getting biopsies on the lung isn’t easy, and after 2 biopsies, a third may not really help unless the entire segment would be removed. If suspicion is indeed high, then that would be the case.
If this is amyloidosis indeed, this would tend to have a slow, indolent course unlike the amyloidosis which is diffuse, involving more areas of the lung. Observation for its behavior over time is indeed an option. However, action must be taken for the left lung.
The chemotherapy after surgery would be adjunctive to the surgery done on the left lower lobe. It is not meant to eliminate cancer in the right lobe if it exists. While it is theoretically sound that a cancer on the right lung can be eliminated- such an approach has not been proven. Put another way, chemotherapy alone has not been able to provide cures by itself in the absence of surgery for lung cancer. So the best outcome would be that the right lung contains no cancer.
Please forgive me for adding this information. I just located the two biopsy reports for mom's right lung biopsy.
The first report stated "Final Diagnosisamorphos eosinophilic and portion of pulmonary alveolar. Parenchyma with no specific pathologic change. Comment: The histologic finding raise the possibility of nodular amyloidosis versus stromal reacion reaction/scar. Cong red stain was equivocal. If malignancy is suspected, the biopsy material may not be representative of the lesion. Clinicla correlation and additional studies may be requred for a specific diagnosis.
The second report stated "Final Diagnosis: amorphous eosinophilic material with scattered giant cells and lymphoplasmacytic inflamation. Comment: The histologic features are similar to the previous biopsy material and is most consistent with nodular amyloidosis. No malignant infiltrates are identified."
I thought this may be helpful to you in responding to my earlier post. Thanks again.
Before performing the lobectomy on Mom's left lung, a physcian/radiologist twice biopsied the lesion on the right lung, which did not yeild a specific pathology. The physcian who performed the biopsy reported the lesion/tumor was approximately 2 cm with a very hard surface, making it difficult to obtain an adequate sample. The forcep could only scrape a small specimen to test. She experienced pneumothorax in her right lung in one instance. The left lesion, was sized at approximately 3 cm and was easier to biopsy. Its specific pathology was squamous cell carcinoma. Her surgeon and primary physician reasoned that her best shot at survival was to perform the lobectomy on her left lower lobe (a known malignant tumor) and then watch the lesion on the right lung. Should we be concerned with the inconclusive nature of the biopsy results? Should our mom request a third biopsy? Is her chemotherapy plan dependent on whether the right lesion is cancerous or benign amyloidosis?
Many thanks for your kind replies.
The diagnosis of cancer on the left lung would mandate a thorough evaluation of the opposite lung in order to plan the appropriate therapy.
Amyloidosis presents more often with diffuse involvement of the lung and with disease elsewhere in the body (as the amyloid may also deposit along the heart, the kidneys, etc.).Based on your description, this is not likely the case. The other type of amyloidosis would present as a localized area, and may indeed be mistaken for lung cancer. These would generally have a benign course, but since these are much rarer, the actual behavior would not be very predictable.
The diagnosis of lung cancer would likely mandate a biopsy of the opposite lung, to ascertain if it is also cancer or not.