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Hi there!
While I'm not new to this site, it's been awhile since I've posted so I had to get a new user name...forgot my password...lol. I was diagnosed in Feb of 2005 with TC. Pre-surgery my HCG was 26 and my AFP was 386. The pathology report showed mixed gct primarily yolk sac. After surgery my HCG's and AFP's normalized, < .5 and approximately 4.8 respectively. My oncologist felt that while my markers were normal, they did not fall quite as quickly as he would have liked, thus he suggested chemo. I sought a second opinion from another doctor in the same office, he suggested surveillance. I was very confused so I got a third opinion from the Mayo Clinic here in Minnesota, and they too recommended surveillance, so that is what I chose. Things remained stable for the next 4 months. There was no sign of metastasis and my markers were normal. Then in July of 2005, my chest x-ray noted a small nodule in my left lung, and my AFP's rose to 7.4. I had a re-currence of TC...YIKES. I began 3 rounds of BEP immediately. The chemo was no treat, but it did what it was supposed to do and destroyed the nodule in my lung, and brought my AFP's back into the 4.0's or so.
The next year showed no further sign of re-currence. So about a month ago I had my first "2 month" check up...as opposed to monthly check ups, which consists of blood work and chest x-rays. My AFPs showed a slight increase to about 5.7...however the two months prior they were at 5.5, so nothing to be alarmed about there since they are well within the normal range. What scared the crap out of me was when my Oncologist ordered a CT scan because they noted...and I quote..."Two small unidentifiable spots on the upper lobe of the left lung." I was frozen with fear...paralyzed. I went in to see my doc and he offered two options: 1. Start chemo in one week. 2. Biopsy the lung by cutting me open. I did not like either option...lol. My doctor admitted that he never treated a "re-currence." After he said that, nothing else mattered and I couldn't here a word he had to say because in my opinion he was no longer an expert, being that he never treated a re-currence. At this point, I knew I needed the best in the business, the fine folks at Indiana University...home to Dr. Einhorn and associates.
I was able to get in only 6 days later to see the director of oncology at IU. The entire staff there was fabulous and incredibly hospitable. My consult with the doc at IU went well. He had his team of radiologists review the CT scans and were skeptical that it was cancer. So they too wanted a biopsy but thought they could do it without cutting me open, rather they would go down my throat and do a bronchioscopy.
So about 2 weeks ago, I had the procedure done at IU to do the biopsy. I waited about a week...maybe a little less...for the results. It was last friday to be exact that the doctor called and informed me that the biopsy was negative for cancer, but positive for an infection!!!!!
So in the end I escaped an unnecessary surgery, and/or chemo by getting a second opinion.
There is a morale to this story, and here it is: Make sure you have explored ALL of your options. If you're not sure about your doctor, get a new one, even if there is a shred of doubt. Don't feel bad about hurting their feelings...it'll be much worse if your misdiagnosed. Doctors are human, humans can and will make mistakes. Don't accept the first answer as fact. Be your own advocate. Be subjective. Even the answer you want to hear may be the wrong one...a positive diagnosis can be wrong too...question everything.
Good luck to all of you and your families in your fight!
Erik.
While I'm not new to this site, it's been awhile since I've posted so I had to get a new user name...forgot my password...lol. I was diagnosed in Feb of 2005 with TC. Pre-surgery my HCG was 26 and my AFP was 386. The pathology report showed mixed gct primarily yolk sac. After surgery my HCG's and AFP's normalized, < .5 and approximately 4.8 respectively. My oncologist felt that while my markers were normal, they did not fall quite as quickly as he would have liked, thus he suggested chemo. I sought a second opinion from another doctor in the same office, he suggested surveillance. I was very confused so I got a third opinion from the Mayo Clinic here in Minnesota, and they too recommended surveillance, so that is what I chose. Things remained stable for the next 4 months. There was no sign of metastasis and my markers were normal. Then in July of 2005, my chest x-ray noted a small nodule in my left lung, and my AFP's rose to 7.4. I had a re-currence of TC...YIKES. I began 3 rounds of BEP immediately. The chemo was no treat, but it did what it was supposed to do and destroyed the nodule in my lung, and brought my AFP's back into the 4.0's or so.
The next year showed no further sign of re-currence. So about a month ago I had my first "2 month" check up...as opposed to monthly check ups, which consists of blood work and chest x-rays. My AFPs showed a slight increase to about 5.7...however the two months prior they were at 5.5, so nothing to be alarmed about there since they are well within the normal range. What scared the crap out of me was when my Oncologist ordered a CT scan because they noted...and I quote..."Two small unidentifiable spots on the upper lobe of the left lung." I was frozen with fear...paralyzed. I went in to see my doc and he offered two options: 1. Start chemo in one week. 2. Biopsy the lung by cutting me open. I did not like either option...lol. My doctor admitted that he never treated a "re-currence." After he said that, nothing else mattered and I couldn't here a word he had to say because in my opinion he was no longer an expert, being that he never treated a re-currence. At this point, I knew I needed the best in the business, the fine folks at Indiana University...home to Dr. Einhorn and associates.
I was able to get in only 6 days later to see the director of oncology at IU. The entire staff there was fabulous and incredibly hospitable. My consult with the doc at IU went well. He had his team of radiologists review the CT scans and were skeptical that it was cancer. So they too wanted a biopsy but thought they could do it without cutting me open, rather they would go down my throat and do a bronchioscopy.
So about 2 weeks ago, I had the procedure done at IU to do the biopsy. I waited about a week...maybe a little less...for the results. It was last friday to be exact that the doctor called and informed me that the biopsy was negative for cancer, but positive for an infection!!!!!
So in the end I escaped an unnecessary surgery, and/or chemo by getting a second opinion.
There is a morale to this story, and here it is: Make sure you have explored ALL of your options. If you're not sure about your doctor, get a new one, even if there is a shred of doubt. Don't feel bad about hurting their feelings...it'll be much worse if your misdiagnosed. Doctors are human, humans can and will make mistakes. Don't accept the first answer as fact. Be your own advocate. Be subjective. Even the answer you want to hear may be the wrong one...a positive diagnosis can be wrong too...question everything.
Good luck to all of you and your families in your fight!
Erik.
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