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I've been reading since sometime during my chemo but thought I'd take the time to introduce myself. The information on this board has helped me a great deal during this time and I wish I had discovered it sooner as I think I may have done a few things differently back at the beginning if I had.
I first noticed something was wrong last November. We'd been having unseasonably warm weather for the time of year in upstate NY so a friend and I decided to get in one final bike ride for the year. Afterwards I started having some discomfort in the testicle which i figured probably just got beaten up a bit during the ride. About a week later it was still bothering me and I was thinking it might be time to see a urologist, just to be safe, when I noticed a lump on my testicle.
The US clearly showed something strange in the testicle but nobody seemed to be able to feel the mass other than me. The first urologist wasn't sure what it was but felt that the testicle should probably come out since it was most likely a tumor. Since I don't have any family in upstate NY I decided I would have the surgery done in Boston. The urologist there was certain that it wasn't a tumor as were the 3rd and 4th opinions I got. They decided to treat it as a possible infection. My HCG was 0 and my AFP was about 7.5 this whole time so those didn't really tell us anything one way or the other. A month of cipro later and no change in the mass they decided it was time to come out.
As it turned out the mass was a pure embryonal carcinoma, most of which was necrotic, hence the reason it looked so strange on the ultrasound. There were no signs of invasion and my CT was clear so I went on surveillance. After talking to an oncologist upstate he suggested that I go see a doctor at Sloan Kettering as my girlfriend was living in Brooklyn at the time and I was splitting time between the two locations. Sloan was nice enough to let me fax my records to them but they never bothered to respond to me or return my follow up calls other than to confirm that they had received my records and would be in touch soon. After two weeks of this I decided to see an oncologist at New York Methodist instead as it was only 1 block away from our apartment in Brooklyn.
In March my AFP was up to 12 so I went in for a CT. My doctor called 2 days later to tell me the scan was clear, much to my relief. The following week I got a call from him letting me know that the radiologist reading my scan had screwed up and missed a 2.2 cm retroperitoneal lymph node. My oncologist thought it strange that given my rising AFP that my scan would be clear so he double checked it just to be safe. He was very apologetic about the whole situation and although I wasn't pleased with them missing it the first time through I was glad that my oncologist was really looking out for me.
I started 4 rounds of EP in April. The first round was really a breeze and by the following weekend I was walking 4 or 5 miles a day. After my first round of chemo my AFP actually increased from 53 to 65. Although I knew that this is not an unheard of occurrence it was still quite nerve wracking. My white blood counts and red counts were very low come time to start the second round and that would be the case for the rest of my treatment meaning I got to have neulasta shots after every round. After the second round my AFP had dropped into the 9's and continued to drop slowly during treatment. I was really feeling fine until after the 3rd round when my red counts started getting really low and by the 4th round I was too exhausted to do much of anything. At that point I was pretty happy that I only had to travel 1 block to and from my oncologist's office.
After the final round of chemo my AFP was down to 6.4, which was lower than it had been at any point before it started to climb. I had my post-chemo scan about 2 weeks after I finished and the node was reduced to 5 mm. My oncologist and most of his colleagues felt that it wasn't necessary to do an RPLND at that time but also mentioned that he did have one colleague who felt that I should and therefore I should get a second opinion from a urologist who specializes in them. I went to Dana Farber and met with Dr. Richie who also agreed that it made more sense to hold off on surgery given my response to treatment and lack of teratoma in the primary tumor.
So that's where I am now. I'll be having my next CT in about 2 weeks and I find myself getting really anxious at times as the date approaches. Whereas during my first round of surveillance I didn't worry about it much at all, I feel very different this time around. I know the odds are well in my favor but I have trouble thinking that I'm anything other than one of the unlucky ones. Enough negative talk, I'm going to keep those thoughts to the side and try to only worry about them if it becomes necessary. Thanks again to everyone here for the wisdom and inspiration you've given me.
I first noticed something was wrong last November. We'd been having unseasonably warm weather for the time of year in upstate NY so a friend and I decided to get in one final bike ride for the year. Afterwards I started having some discomfort in the testicle which i figured probably just got beaten up a bit during the ride. About a week later it was still bothering me and I was thinking it might be time to see a urologist, just to be safe, when I noticed a lump on my testicle.
The US clearly showed something strange in the testicle but nobody seemed to be able to feel the mass other than me. The first urologist wasn't sure what it was but felt that the testicle should probably come out since it was most likely a tumor. Since I don't have any family in upstate NY I decided I would have the surgery done in Boston. The urologist there was certain that it wasn't a tumor as were the 3rd and 4th opinions I got. They decided to treat it as a possible infection. My HCG was 0 and my AFP was about 7.5 this whole time so those didn't really tell us anything one way or the other. A month of cipro later and no change in the mass they decided it was time to come out.
As it turned out the mass was a pure embryonal carcinoma, most of which was necrotic, hence the reason it looked so strange on the ultrasound. There were no signs of invasion and my CT was clear so I went on surveillance. After talking to an oncologist upstate he suggested that I go see a doctor at Sloan Kettering as my girlfriend was living in Brooklyn at the time and I was splitting time between the two locations. Sloan was nice enough to let me fax my records to them but they never bothered to respond to me or return my follow up calls other than to confirm that they had received my records and would be in touch soon. After two weeks of this I decided to see an oncologist at New York Methodist instead as it was only 1 block away from our apartment in Brooklyn.
In March my AFP was up to 12 so I went in for a CT. My doctor called 2 days later to tell me the scan was clear, much to my relief. The following week I got a call from him letting me know that the radiologist reading my scan had screwed up and missed a 2.2 cm retroperitoneal lymph node. My oncologist thought it strange that given my rising AFP that my scan would be clear so he double checked it just to be safe. He was very apologetic about the whole situation and although I wasn't pleased with them missing it the first time through I was glad that my oncologist was really looking out for me.
I started 4 rounds of EP in April. The first round was really a breeze and by the following weekend I was walking 4 or 5 miles a day. After my first round of chemo my AFP actually increased from 53 to 65. Although I knew that this is not an unheard of occurrence it was still quite nerve wracking. My white blood counts and red counts were very low come time to start the second round and that would be the case for the rest of my treatment meaning I got to have neulasta shots after every round. After the second round my AFP had dropped into the 9's and continued to drop slowly during treatment. I was really feeling fine until after the 3rd round when my red counts started getting really low and by the 4th round I was too exhausted to do much of anything. At that point I was pretty happy that I only had to travel 1 block to and from my oncologist's office.
After the final round of chemo my AFP was down to 6.4, which was lower than it had been at any point before it started to climb. I had my post-chemo scan about 2 weeks after I finished and the node was reduced to 5 mm. My oncologist and most of his colleagues felt that it wasn't necessary to do an RPLND at that time but also mentioned that he did have one colleague who felt that I should and therefore I should get a second opinion from a urologist who specializes in them. I went to Dana Farber and met with Dr. Richie who also agreed that it made more sense to hold off on surgery given my response to treatment and lack of teratoma in the primary tumor.
So that's where I am now. I'll be having my next CT in about 2 weeks and I find myself getting really anxious at times as the date approaches. Whereas during my first round of surveillance I didn't worry about it much at all, I feel very different this time around. I know the odds are well in my favor but I have trouble thinking that I'm anything other than one of the unlucky ones. Enough negative talk, I'm going to keep those thoughts to the side and try to only worry about them if it becomes necessary. Thanks again to everyone here for the wisdom and inspiration you've given me.
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