Hello everyone! Welcome to our 31st Case Study - this one the story of our friend Allison and her experience with having had a Schwannoma in her lung. Among our group members, this is one of the rarest kinds of Schwannoma and we are very thankful to Alison for telling her story. We hope you all find this helpful and interesting reading. - Neil
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1. How old were you at the time of diagnosis?
8 years ago, I was diagnosed with a cellular schwannoma of the left lung. I was only 26 years old. I had just gotten married and bought my first house. It was a complete shock as I was completely healthy and had actually just ran a 5-K the weekend before diagnosis.
8 years ago, I was diagnosed with a cellular schwannoma of the left lung. I was only 26 years old. I had just gotten married and bought my first house. It was a complete shock as I was completely healthy and had actually just ran a 5-K the weekend before diagnosis.
2. Do you have any history of Schwannomas in your family?
My grandmother seems to think there is a history of benign tumors on her side, but no concrete evidence that these are schwannomas. Also, Neil said on the FB page recently that there is some evidence of radiation causing schwannomas, and I worked at a vet hospital for about 4 years in high school/college, so I guess I could have been exposed.
My grandmother seems to think there is a history of benign tumors on her side, but no concrete evidence that these are schwannomas. Also, Neil said on the FB page recently that there is some evidence of radiation causing schwannomas, and I worked at a vet hospital for about 4 years in high school/college, so I guess I could have been exposed.
3 and 4 , Where was your Schwannoma located? What were the symptoms that led to your diagnosis? (She also answers what is normally the 4th question in this narrative - addressing the description of the surgical procedure. )
February, 2009, Savannah, GA: It was just another ordinary day, and I was at school, teaching in my sixth grade language arts classroom. All of a sudden, I was hit with crushing, breath-stealing chest pain. I couldn't catch my breath, there was a stabbing pain every time I moved or breathed in. I left my students with the special ed. teacher and ran as fast as I could to the school nurse. I told her I couldn't breathe and thought I was having a heart attack. She told me I was probably having gas pains, but I calmly explained to her that this was an emergency and please call my husband. He came immediately and took me to the ER.
February, 2009, Savannah, GA: It was just another ordinary day, and I was at school, teaching in my sixth grade language arts classroom. All of a sudden, I was hit with crushing, breath-stealing chest pain. I couldn't catch my breath, there was a stabbing pain every time I moved or breathed in. I left my students with the special ed. teacher and ran as fast as I could to the school nurse. I told her I couldn't breathe and thought I was having a heart attack. She told me I was probably having gas pains, but I calmly explained to her that this was an emergency and please call my husband. He came immediately and took me to the ER.
I was hooked up to an EKG which came back normal. I was then given a chest X-ray. We didn't know at the time, but my chest cavity was so filled with blood they couldn't see anything, so I was referred for a cat scan. Upon viewing my cat scan, the ER doctor told me I had a massive mass in my chest that was more than likely advanced stage lung cancer. I was admitted to the hospital and met with a pulmonologist. My pulmo had to wait until the next morning to do a laryngoscopy and fine needly biopsy, as I was understandable anxious and freaking out and my BP was through the roof. The next day, the laryngoscopy couldn't visualize the mass and the biopsy was sent to the lab. It would be quite a few days before results came back from pathology. In the meantime, my mom flew in from Vermont and I was scheduled for emergency surgery the following morning.
My surgeon was phenomenal, Dr. London of St. Joseph's Candler, basically going in blind having no idea what this tumor was. I had to have two ribs surgically broken in order to get my schwannoma out--it was the size of a foam Nerf football. The tumor was completely encapsulated and Dr. London was pretty sure he was able to get all of it. It was completely inside my left lung and pressing on a lot of major vessels. In addition, my surgeon thinks the 5k I did the previous weekend irritated my lung to the point that it began to fill with blood--I needed a transfusion during surgery because I had lost so much blood. Before the chest pains that terrifying morning at school, I had had not one single symptom from my schwannoma until that point, and doctors estimate it had probably been growing inside me the better part of 15 years or more...and I had no clue.
I spent 2 days in the ICU and 8 total days in the hospital recovering. The day before I was discharged, the doctor on call finally came and told me what kind of tumor i had: a nerve cell schwannoma. He also told us it was benign. We all burst into tears because up until this point no one knew or could tell us definitively what the thing was! It was a HUGE relief! Going forward, I had to do some light PT to get my left lung back to normal capacity and strength but I was back to work about 2 weeks after getting out of the hospital. I do have a large scar from the surgery, a smaller one from my chest tube, and some loss of sensation along my left rib cage to below my left breast...but overall I am extremely lucky and fortunate. I follow up with my pulmonologist for a repeat chest x-ray every 3 years (at first it was every 6 months, then every year, and now every 3) to make sure it doesn't reoccur. I was told this type of tumor has a 3-7% return rate.
Very recently (within the past few months) I began seeing a neurologist for the first time, unrelated to my original schwannoma but because of other symptoms and acknowledging my history. I had an MRI and was diagnosed with a prolactinoma of the pituitary gland. I also have a small tumor in the hypothalamus region of my brain. My neurologist is not concerned about either abnormality and is confident they are not schwannomas. I have no neurological symptoms.
5. Having gone through the experience, what do you think are the most critical questions for someone to ask their doctor about surgery and treatment of this kind of schwannoma?
The most important thing to make sure is that you have a pulmonologist in addition to your neurologist. Because the type of schwannoma I had is basically symptom-free, it is crucial to have thorough follow-up care to make sure the tumor does not reoccur. Also, my pulmonologist was so fascinated by my case (he could only find 9 similar tumors in literature) he took it to the national tumor board and got input and recommendations from specialists across the country, which meant that even in small Savannah, GA I was getting the highest quality of care. Also, just ask lots of questions. It was a scary time, but mine was more of an emergency situation as it had to be removed immediately, so I didn't really have time to do research or ask questions. I would also recommend repeat and follow-up MRIs going forward into the future to make sure the same or future tumors don't occur.
The most important thing to make sure is that you have a pulmonologist in addition to your neurologist. Because the type of schwannoma I had is basically symptom-free, it is crucial to have thorough follow-up care to make sure the tumor does not reoccur. Also, my pulmonologist was so fascinated by my case (he could only find 9 similar tumors in literature) he took it to the national tumor board and got input and recommendations from specialists across the country, which meant that even in small Savannah, GA I was getting the highest quality of care. Also, just ask lots of questions. It was a scary time, but mine was more of an emergency situation as it had to be removed immediately, so I didn't really have time to do research or ask questions. I would also recommend repeat and follow-up MRIs going forward into the future to make sure the same or future tumors don't occur.
6. Can you describe what the recovery process was like for you – if you feel you have made a positive recovery…and what things you have done that have been of most help to you? (Also, you are free to describe what doctors tell you to expect from your recovery if you haven't been in surgery yet)
7) Are you able to do all or most the things you did before? (Also feel free to describe your abilities even if you are still living with the tumor or tumors)
(Below, Alison addresses questions 6 and 7 together )
As I mentioned above, the recovery process was pretty easy. In the hospital, I did have a chest tube and a catheter, but once discharged my life was pretty much back to normal. I had to do some light exercises to get my lung capacity back to normal, but I was young and healthy and bounced back pretty quickly. I am 100% symptom-free and back to normal, other than a little bit of numbness around my surgery scar. The most help to me was my mom moved in with me for a little bit to help around the house while I was recovering so I could really relax and get better. My parents and my husband and everyone I worked with were so supportive and wonderful through the whole process.
7) Are you able to do all or most the things you did before? (Also feel free to describe your abilities even if you are still living with the tumor or tumors)
(Below, Alison addresses questions 6 and 7 together )
As I mentioned above, the recovery process was pretty easy. In the hospital, I did have a chest tube and a catheter, but once discharged my life was pretty much back to normal. I had to do some light exercises to get my lung capacity back to normal, but I was young and healthy and bounced back pretty quickly. I am 100% symptom-free and back to normal, other than a little bit of numbness around my surgery scar. The most help to me was my mom moved in with me for a little bit to help around the house while I was recovering so I could really relax and get better. My parents and my husband and everyone I worked with were so supportive and wonderful through the whole process.
If you have one of these tumors and are suffering in daily pain, I can only tell you my own experience: better out than in! No one should have to go through life in daily pain if there is a surgical solution. If you have a lung schwannoma without any symptoms, and are in a wait-and-see type of situation, again, I can only speak to my own experience: it went from nothing to an emergency really quickly. The amount of pain I felt and the shortness of breath I had made me positive I was having a heart attack. It was the scariest pain I have ever felt, even including recovering from surgery when I had to have an epidural and intravenous morphine. So mine HAD to come out... just don't let it get to that point!
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