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Hi everyone,
My name is Joe and 4 months ago I was diagnosed with testicular cancer. Weeks later I got my left testicle taken out by my urologist and from there I have been seen by Dr. Vaughn, my oncologist at Penn. It turns out the cancer had spread throughout my body. My lymph nodes in my abdomen, chest, and pelvis have all been infected. The good news is that it did not get into any of my internal organs. This still made me nervous though because I had read on multiple sites, including this one, that if the cancer spreads beyond the lymph nodes in the abdomen, the survival rate is only 71-73 percent. I should mention that only a few spots in my chest, as well as my pelvis were infected, but I was obviously nervous nonetheless that my survival odds could be a bit scary. However, Dr. Vaughn told me my survival odds were over 90% mainly because my prognosis was "good." Pre-chemo, my AFP and HCG were both around 120-130, and both had dropped significantly after my surgery. I have to admit though, I doubted this percentage he gave because of the huge drop in percentage once the cancer spreads out of the abdomen. Though I know he is one of the testicular cancer experts, so I went by what he told me.
I was giving 3X BEP. After the first 3 weeks, my HCG was <5 and my AFP 11. At this point I was really feeling confident considering how much I had improved after just 3 weeks. However, since this point, it has all been downhill. After the 6 week mark, my AFP went up to 19, though HCG remained normalized. Then after the 9 week mark my AFP rose again to 27, while my HCG remained normalized again. A week later I was giving another test to see if maybe the AFP gave out a false positive, but it turns out it went up again to 36. I just got another tumor marker test a few days ago, but have not got the results yet. Dr. Vaughn told me that sometimes AFP can be a bit higher for some people, but considering mine has continuously risen and is way higher than 20, he believes there is probably still live cancer in there. To confirm this, he first had me get an MRI of my brain, which turned out to be negative. Next, he is having me get a PET scan, which he says will determine whether or not there is still live cancer in there. Depending on how bad it is, he will either have me get a RPLND surgery or additional chemo (TIP regimen). He told me that additional chemo will only have about a 50% chance of working. Basically, if it has to go this route, my survival odds would then be much less than 90. So basically I am praying the PET scan is not that bad and I can just get the RPLND. If that is the case, my chances of survival would be a lot higher.
I am trying to stay positive, but it is hard. I have a family, including a 2 year old son. The last thing I want is for him to grow up without a dad and to not even remember me. I am in so much mental anguish that I am going to go see a therapist for help. Any kind of advice or pointers anybody here could give me would greatly be appreciated. Has anyone gone through TIP before and could tell me what to expect? Did it work for you? I know RPLND seems to be common for a lot of people here, though TIP seems to be more rare.
My name is Joe and 4 months ago I was diagnosed with testicular cancer. Weeks later I got my left testicle taken out by my urologist and from there I have been seen by Dr. Vaughn, my oncologist at Penn. It turns out the cancer had spread throughout my body. My lymph nodes in my abdomen, chest, and pelvis have all been infected. The good news is that it did not get into any of my internal organs. This still made me nervous though because I had read on multiple sites, including this one, that if the cancer spreads beyond the lymph nodes in the abdomen, the survival rate is only 71-73 percent. I should mention that only a few spots in my chest, as well as my pelvis were infected, but I was obviously nervous nonetheless that my survival odds could be a bit scary. However, Dr. Vaughn told me my survival odds were over 90% mainly because my prognosis was "good." Pre-chemo, my AFP and HCG were both around 120-130, and both had dropped significantly after my surgery. I have to admit though, I doubted this percentage he gave because of the huge drop in percentage once the cancer spreads out of the abdomen. Though I know he is one of the testicular cancer experts, so I went by what he told me.
I was giving 3X BEP. After the first 3 weeks, my HCG was <5 and my AFP 11. At this point I was really feeling confident considering how much I had improved after just 3 weeks. However, since this point, it has all been downhill. After the 6 week mark, my AFP went up to 19, though HCG remained normalized. Then after the 9 week mark my AFP rose again to 27, while my HCG remained normalized again. A week later I was giving another test to see if maybe the AFP gave out a false positive, but it turns out it went up again to 36. I just got another tumor marker test a few days ago, but have not got the results yet. Dr. Vaughn told me that sometimes AFP can be a bit higher for some people, but considering mine has continuously risen and is way higher than 20, he believes there is probably still live cancer in there. To confirm this, he first had me get an MRI of my brain, which turned out to be negative. Next, he is having me get a PET scan, which he says will determine whether or not there is still live cancer in there. Depending on how bad it is, he will either have me get a RPLND surgery or additional chemo (TIP regimen). He told me that additional chemo will only have about a 50% chance of working. Basically, if it has to go this route, my survival odds would then be much less than 90. So basically I am praying the PET scan is not that bad and I can just get the RPLND. If that is the case, my chances of survival would be a lot higher.
I am trying to stay positive, but it is hard. I have a family, including a 2 year old son. The last thing I want is for him to grow up without a dad and to not even remember me. I am in so much mental anguish that I am going to go see a therapist for help. Any kind of advice or pointers anybody here could give me would greatly be appreciated. Has anyone gone through TIP before and could tell me what to expect? Did it work for you? I know RPLND seems to be common for a lot of people here, though TIP seems to be more rare.
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