Tweet
Ongoing journey of a non-seminoma
Going through my TC journey the testimonies/questions and answers I found on this website have provided me with a wealth of information and a great deal of comfort in getting mentally prepared for what I am about to face. I thought I’d provide a brain dump of everything I’ve learned in my brief, but exciting, battle with TC so far in the hope that someone else may be able to leverage what I’ve learned. One thing in particular that I couldn’t find any information about in any posts was the use of a PET CT scan to help diagnosis how fare the cancer spread – I’ve included that experience as well.
Who would have thought it – a 44-year old male with Non-Seminoma Testicular Cancer. Here’s my story. I had a vasectomy in November and a couple of months later, had experienced some soreness and minor swelling in my left testicle. I thought it was due to the vasectomy, so I wasn’t too concerned. I had just started a new job on the 8th of January, and had just retired from the military on November 30. I hadn’t selected a primary physician yet in private practice as of yet, and I didn’t feel right about taking time off to see a doctor, even if I knew one to go to. Fortunately on 18 January I went for a post operative hand appointment and stopped by the urology clinic that conducted the vasectomy and explained I had a sore testicle (slightly swollen and tender to touch) for the previous 10 days or so. I had done some research and I couldn’t feel any bumps, growths, etc… so I didn’t think it was serious. Based on my research, I would have just taken Motrin for a couple of weeks to see if it got better, thinking it was some type of infection. Upon explaining my symptoms to the urologist, however, he immediately sent me for an ultrasound. When I returned to urology, three doctors were waiting to talk with me. They asked me when I last ate, and I said the night before. Well, three hours later, I was on the operating table for a radical inguinal orchiectemy.
Blood information on surgery day - 18 Jan (orchiectemy day!):
LDH: 144
AFP: 88 (Alpha Feta Protein is the key marker for cancer)
bHCG: <0.2
Comment: All the research I’ve conducted shows no conclusive link between a vasectomy and cancer.
I guess I was one of the lucky ones because my AFP level acted as a marker that something was amiss. Apparently some people’s AFP levels do not elevate even though they do have cancer. The actual orchiectemy went well but I had an epidural and my bladder went “to sleep” (apparently that happens in some patients having epidurals). Having had a number of surgeries, I would go under general if I had to do it again – even though I felt horrible for 24 hours after surgery under general anesthesia. Unfortunately I could not urinate after surgery (out at 3pm) and didn’t have the catheter put in until 6 am the next day – 1600 cc of urine later I was good-to-go but had to wear a catheter over the weekend because of bladder distention. For all the horror stories I read on the net, I was a bit anxious about having the catheter “installed” and removed but it getting in and out wasn’t any big deal – a little discomfort was all.
A week later, on 26 Jan my AFP level dropped to 26.4 - LDH and bHCG were in normal limits. That was great news and right at the level they had hoped (the half-life for this type of cancer is a bit under 7 days). The trouble was the tumor biopsy revealed a 2cm x 2cm x 3.5cm mixed cell tumor consisting of:
50% embryonal
40% teratoma
Areas suggested of yolk sak
The entire tumor was confined to the inside of the testicle – no bumps protruded out.
Pathology Results:
Focality: unifocal
Margins: uninvolved by tumor
Intratubular Germ Cell Component: Identified by H&E and IHC (H&E and IHC are stains used to identify the type of cells)
Lymphvasular Invasion: Identified
AJCC Pathologic Stage: pT2
All the doctors are very surprised because this non-seminoma cancer normally strikes those between the ages of 18-35. The only risk factors I have is being a white male and of Scandinavian decent – no family history of cancer. The doctor told me that I had a 99% chance of non-seminoma based on my elevated AFP levels – this turned out to be the case.
According to the doctor there are three criteria they look for to determine whether or not there is high probability of recurrence. They are: 1) vascular invasion, 2) lymphatic invasion, and 3) % embryonal carcinoma in the tumor. Lucky me, I had all three!
The oncologist I talked to said that based on my AFP levels that he could justify giving me two cycles of chemo – he couldn’t really justify three cycles (he’d use BEP: week 1, M, T, W, Th, Fri, week 2: T, week 3: T, and repeat). He said that it would probably take me 3 or 4 weeks to recover from the chemo. i.e. appx 10 weeks before I could get back to a “normal” life. The more I read about the possible long-term effects of chemo, the more I hoped an RPLND would do the trick. I also did some research and found that if by chance you are misdiagnosed, two cycles may not cure you. If you don’t get it all, it is also possible the cancer could build up a resistance to some of the chemicals. Bottom line, we weren’t too sure if two cycles was the right amount, too much, or too little. There was one other data point I was hoping to count on – PET CT Scan results – before deciding on my treatment plan.
I had the opportunity to undergo a PET CT Scan as part of a clinical trial at the hospital. The Positron Emission Tomography (PET) and Computerized Tomography (CT) are both standard imaging tools that allow physicians to pinpoint the location of cancer within the body before making treatment recommendations, but has not been approved by the FDA yet for this type of “diagnosis”. The highly sensitive PET scan detects the metabolic signal of actively growing cancer cells in the body and the CT scan provides a detailed picture of the internal anatomy that reveals the location, size and shape of abnormal cancerous growths and from what I’ve read provides an additional 10-15% more precise that a CT scan alone. I didn’t eat anything for 20 hrs prior to the procedure. It is important that your blood sugar is low so the isotope works well. The entire process lasted about 2 hours. 45 minutes sitting completely motionless while the tagged isotope goes through your body, and another 50 minutes in the tube (more like an MRI machine than a CT scan). I was expecting to be in there for less than 30 minutes but found out after the fact that if you are over 200lbs (I’m 6 ft 2in and 215lbs) that they take more pictures per segment than they do for “skinny” people.
Unfortunately the PET CT Scan does not do very well in identifying small tumors or other “microscopic” cancer that is traveling through the blood stream. If I glowed like a Christmas tree my treatment would have been, as I understand it, to proceed directly into chemo. However, my results were inconclusive, so based on the high probability of recurrence and the fact that teratoma is not as receptive to chemo, I’m undergoing a Modified Left Side Nerve Sparing Retroperitoneal Lymph Node Dissection (RPLND) on 13 February.
The RPLND recovery should be 4-7 days in the hospital, followed by 4-6 weeks of recovery if everything goes well. Apparently, they needed to wait until my AFP levels return to a normal range prior to the RPLND – this is still within the 6 week window that the experts talk about – the time between orchiectemy and RPLND – that most experts say is important in maximizing your chances of beating the cancer. During the RPLND if the doctor finds any cancerous lymph node >2cm, or more than 5 lymph nodes that are cancerous at any level, she recommends the surgery be followed by two cycles of adjunct BEP chemo-therapy. If the RPLND surgery results comes back slightly + or negative I’ll go on an aggressive surveillance program for the next 5 to 7 years. From what I’ve read, I’ll have a 90% chance of beating this thing with just an RPLND if the cancer hasn’t spread too much in the lymph nodes. It would be nice to not have to undergo chemo. We’re crossing our fingers and praying for the best.
Interesting note on lymph nodes. Apparently everyone isn’t exactly the same when it comes to how many/where your lymph nodes are located. They have to do some “searching” to ensure they get all the lymph nodes they want out.
God willing, I’ll continue my story when I’m recovering from the RPLND in a couple of weeks. Tomorrow I get to take the “liquid drano” that is going to clear out my intestines in preparation for the surgery! This ought to be interesting.
Who would have thought it – a 44-year old male with Non-Seminoma Testicular Cancer. Here’s my story. I had a vasectomy in November and a couple of months later, had experienced some soreness and minor swelling in my left testicle. I thought it was due to the vasectomy, so I wasn’t too concerned. I had just started a new job on the 8th of January, and had just retired from the military on November 30. I hadn’t selected a primary physician yet in private practice as of yet, and I didn’t feel right about taking time off to see a doctor, even if I knew one to go to. Fortunately on 18 January I went for a post operative hand appointment and stopped by the urology clinic that conducted the vasectomy and explained I had a sore testicle (slightly swollen and tender to touch) for the previous 10 days or so. I had done some research and I couldn’t feel any bumps, growths, etc… so I didn’t think it was serious. Based on my research, I would have just taken Motrin for a couple of weeks to see if it got better, thinking it was some type of infection. Upon explaining my symptoms to the urologist, however, he immediately sent me for an ultrasound. When I returned to urology, three doctors were waiting to talk with me. They asked me when I last ate, and I said the night before. Well, three hours later, I was on the operating table for a radical inguinal orchiectemy.
Blood information on surgery day - 18 Jan (orchiectemy day!):
LDH: 144
AFP: 88 (Alpha Feta Protein is the key marker for cancer)
bHCG: <0.2
Comment: All the research I’ve conducted shows no conclusive link between a vasectomy and cancer.
I guess I was one of the lucky ones because my AFP level acted as a marker that something was amiss. Apparently some people’s AFP levels do not elevate even though they do have cancer. The actual orchiectemy went well but I had an epidural and my bladder went “to sleep” (apparently that happens in some patients having epidurals). Having had a number of surgeries, I would go under general if I had to do it again – even though I felt horrible for 24 hours after surgery under general anesthesia. Unfortunately I could not urinate after surgery (out at 3pm) and didn’t have the catheter put in until 6 am the next day – 1600 cc of urine later I was good-to-go but had to wear a catheter over the weekend because of bladder distention. For all the horror stories I read on the net, I was a bit anxious about having the catheter “installed” and removed but it getting in and out wasn’t any big deal – a little discomfort was all.
A week later, on 26 Jan my AFP level dropped to 26.4 - LDH and bHCG were in normal limits. That was great news and right at the level they had hoped (the half-life for this type of cancer is a bit under 7 days). The trouble was the tumor biopsy revealed a 2cm x 2cm x 3.5cm mixed cell tumor consisting of:
50% embryonal
40% teratoma
Areas suggested of yolk sak
The entire tumor was confined to the inside of the testicle – no bumps protruded out.
Pathology Results:
Focality: unifocal
Margins: uninvolved by tumor
Intratubular Germ Cell Component: Identified by H&E and IHC (H&E and IHC are stains used to identify the type of cells)
Lymphvasular Invasion: Identified
AJCC Pathologic Stage: pT2
All the doctors are very surprised because this non-seminoma cancer normally strikes those between the ages of 18-35. The only risk factors I have is being a white male and of Scandinavian decent – no family history of cancer. The doctor told me that I had a 99% chance of non-seminoma based on my elevated AFP levels – this turned out to be the case.
According to the doctor there are three criteria they look for to determine whether or not there is high probability of recurrence. They are: 1) vascular invasion, 2) lymphatic invasion, and 3) % embryonal carcinoma in the tumor. Lucky me, I had all three!
The oncologist I talked to said that based on my AFP levels that he could justify giving me two cycles of chemo – he couldn’t really justify three cycles (he’d use BEP: week 1, M, T, W, Th, Fri, week 2: T, week 3: T, and repeat). He said that it would probably take me 3 or 4 weeks to recover from the chemo. i.e. appx 10 weeks before I could get back to a “normal” life. The more I read about the possible long-term effects of chemo, the more I hoped an RPLND would do the trick. I also did some research and found that if by chance you are misdiagnosed, two cycles may not cure you. If you don’t get it all, it is also possible the cancer could build up a resistance to some of the chemicals. Bottom line, we weren’t too sure if two cycles was the right amount, too much, or too little. There was one other data point I was hoping to count on – PET CT Scan results – before deciding on my treatment plan.
I had the opportunity to undergo a PET CT Scan as part of a clinical trial at the hospital. The Positron Emission Tomography (PET) and Computerized Tomography (CT) are both standard imaging tools that allow physicians to pinpoint the location of cancer within the body before making treatment recommendations, but has not been approved by the FDA yet for this type of “diagnosis”. The highly sensitive PET scan detects the metabolic signal of actively growing cancer cells in the body and the CT scan provides a detailed picture of the internal anatomy that reveals the location, size and shape of abnormal cancerous growths and from what I’ve read provides an additional 10-15% more precise that a CT scan alone. I didn’t eat anything for 20 hrs prior to the procedure. It is important that your blood sugar is low so the isotope works well. The entire process lasted about 2 hours. 45 minutes sitting completely motionless while the tagged isotope goes through your body, and another 50 minutes in the tube (more like an MRI machine than a CT scan). I was expecting to be in there for less than 30 minutes but found out after the fact that if you are over 200lbs (I’m 6 ft 2in and 215lbs) that they take more pictures per segment than they do for “skinny” people.
Unfortunately the PET CT Scan does not do very well in identifying small tumors or other “microscopic” cancer that is traveling through the blood stream. If I glowed like a Christmas tree my treatment would have been, as I understand it, to proceed directly into chemo. However, my results were inconclusive, so based on the high probability of recurrence and the fact that teratoma is not as receptive to chemo, I’m undergoing a Modified Left Side Nerve Sparing Retroperitoneal Lymph Node Dissection (RPLND) on 13 February.
The RPLND recovery should be 4-7 days in the hospital, followed by 4-6 weeks of recovery if everything goes well. Apparently, they needed to wait until my AFP levels return to a normal range prior to the RPLND – this is still within the 6 week window that the experts talk about – the time between orchiectemy and RPLND – that most experts say is important in maximizing your chances of beating the cancer. During the RPLND if the doctor finds any cancerous lymph node >2cm, or more than 5 lymph nodes that are cancerous at any level, she recommends the surgery be followed by two cycles of adjunct BEP chemo-therapy. If the RPLND surgery results comes back slightly + or negative I’ll go on an aggressive surveillance program for the next 5 to 7 years. From what I’ve read, I’ll have a 90% chance of beating this thing with just an RPLND if the cancer hasn’t spread too much in the lymph nodes. It would be nice to not have to undergo chemo. We’re crossing our fingers and praying for the best.
Interesting note on lymph nodes. Apparently everyone isn’t exactly the same when it comes to how many/where your lymph nodes are located. They have to do some “searching” to ensure they get all the lymph nodes they want out.
God willing, I’ll continue my story when I’m recovering from the RPLND in a couple of weeks. Tomorrow I get to take the “liquid drano” that is going to clear out my intestines in preparation for the surgery! This ought to be interesting.
Comment