When I last met with my urologist on October 22nd she told me the C/T scan results would only take a couple of days. She was correct. The nurse called me on Tuesday (Oct 27) and told me the results were in and she would give them to my urologist to take a look at. She didn't call me all week. I even called and left voice mails enquiring for the results but still nothing. Finally on Friday we decided it was time to see a new doctor, this time an oncologist. (Basically a cancer specialist.) We called several that we knew were good and were able to get an opening with Dr. DiFiore who had a cancellation the following Wednesday. Unintentionally it just so happens that Dr. Difiore is the same doctor that treated my dad so many years ago.
Finally Wednesday rolled around and I was starting to get a little anxious. It had been 12 days since the C/T scan and this was going to be the big indicator whether or not the cancer has spread. I asked the staff to 'please make sure they send you the C/T scan results'. My mom decided to attend with me. 22 years ago Dr. Difiore would walk into a similar office, sit down, and say 'you've got 3 to 12 months to live'. It ended up being about 4. I didn't want her to come because I knew it was going to bring back a lot of difficult memories. However, this time around things were much different. C/T scans, clean! No signs of metastasis. Prognosis, EXCELLENT.
However, even with nothing showing up on the scans we knew going in there is a 50% chance the cancer has leaked into my lymph nodes in the form of micrometastasis (too small to be picked up on the scan.) This is why my urologist had recommended surgery to remove lymph nodes in the stomach..... it can confirm if micrometastasis exists. If they find it than you follow it up with 2-3 rounds of chemo. The other two treatment options are chemo or observation. I talked about this in an early blog so I won't go into greater details.
Going into this appointment I felt pretty strongly that even if the C/T scans were clean (which puts my cancer at a stage 1) I was going to lean towards chemo. This is because if I were to do 2 rounds of chemo now than there would only be about a 2% chance of relapse. If I were to wait and the cancer were to return down the road it would require 4 rounds of chemo. That would be 3 straight months of chemo and from what I understand the third and fourth round get pretty bad. So it just seemed to make since to blast it with 2 rounds now and move on with my life.
As we discussed the options with the doctor he felt confident that because of several positive indicators (tumor make-up and blood markers) that it was probably less than 50% chance the cancer has spread. Less than 50 but greater than 20. This made me feel better about just doing observation. It would require C/T scans and blood draws every three months for 3 years.... less frequently after that. My biggest concern with chemo is infertility which is certain to happen. I had my blood drawn yesterday as well, first time since the surgery. I expect them to come back normal but if they come back higher we would likely go with chemo... otherwise it looks like I will be moving forward with regular checkups hoping that the cancer is gone for good.
I am sure I will still be anxious at times knowing the relapse rate is somewhat high. Especially as the quarterly checkups draw closer. I think the biggest thing to know is that if it does show up some time down the road it is going to be just as curable as if we had done chemo right away.... its just going to take a little extra chemo to do it.
I am hoping there won't be much more to post going forward. If it all turns out well than just the occasional 'had quarterly checkup, all clean!' Thank you to everyone who has kept me in their thoughts and prayers. I hope to be able to return the goodness that I have received and help others in the future. The worst feeling I have had going through this was sitting in the waiting room of the cancer center and seeing so many people in far worse and serious conditions than I. Although I was diagnosed with cancer I feel extremely lucky to have had such a curable cancer and an excellent prognosis... it almost feels like cheating. But cancer doesn't fight clean so there is no reason for any of us to fight fair!
Thursday, November 5, 2009
Monday, October 26, 2009
What's the damage, doc?
The source of the cancer was removed and on a jet plane to Arizona to be analyzed. The surgery was on a Friday and my urologist told us to call the following Wednesday to hear the pathology report. This is basically the biopsy report. It helps to identity the type of TC and help stage it. Having done plenty of research I was hoping for what is called a classic seminoma. This is a type of TC that spreads very slowly and is very responsive to radiation treatment. It is the type of TC that is more likely to be treated with the removal of the testicle and nothing else. The other common type of TC is nonseminoma, and there are several sub types within nonseminoma. This is the more aggressive of the two types and tends to spread much quicker. It is generally treated with more surgery and or chemotherapy. So you can see why I was hoping that the pathology report would come back telling me it was a classic seminoma.
I called the urologist on Wednesday and disappointingly the pathology report was not complete. Such was the case on Thursday and Friday. In fact, it was still not completed through the next week. Finally the following Thursday arrived and I was scheduled for a post-op appointment with my urologist. The pathology report was finally complete and I would hear the news from Dr Stout at her office. I received 95% of what I was hoping for. The tumor was 95% classic seminoma. Unfortunately the tumor also contained 5% nonseminoma which contained two sub types, Embryonal carcinoma and yolk sac. Even though the tumor was 95% seminoma, it would have to be treated as a nonseminoma.
Up to this point I had remained extremely positive. I felt good about everything and was prepared to put up a strong fight. This was the first time since finding out I had a tumor that I really felt scared. The survival rate for those with seminoma is and outstanding 98%. For nonseminoma it is a little closer to around 90 or 92%. Still outstanding but if someone told you there was a 10% chance you would die in a car accident on the way home from work today it would probably make you a little nervous. Nevertheless, I am extremely optimistic and excited to face this head on. Another element of the pathology report that wasn't in my favor was the presence of vascular invasion. This means that the cancer had leaked into the veins. This is the launching pad for the cancer to spread to the lymph nodes in the stomach. Part of what makes testicular cancer so treatable is its predictability. The first place that TC spreads to is the lymph nodes in the stomach. This being the case the next step is to have a C/T scan looking for tumors in the lymph nodes. However, statically speaking, whether or not tumors show up on the scan, there is better than a 50% chance the cancer has spread. Micro metastasis is too small to be picked up on the scans but will develop into cancer sooner or later. This can cause false negatives on a C/T scan.
Dr. Stout explained the pathology report and then we discussed what the potential treatment plan would be depending on the results of the C/T scan. This is the part that is causing the majority of my stress at the moment. It gets confusing so pay attention :) If the C/T scan comes back positive, in other words it comes back showing enlarged lymph nodes, then the cancer has more than likely spread. This would put it at Stage II, nonseminoma testicular cancer. The treatment would call for chemotherapy and likely surgery to remove some lymph nodes. This type of cancer is highly responsive to chemo. If the C/T scan comes back negative, showing no evidence of enlarged lymph nodes, then the cancer would be stage a late Stage I nonseminoma. Meaning the cancer is isolated to the testicle but has signs that it may have spread. Interestingly enough, the standard protocol for this is surgery. It is called Retroperitoneal Lymph Node Dissection. Yes, it is as bad as it sounds. Basically they go in, push all your 'insides' to the side, go all the way behind your stomach, and remove a bunch of lymph nodes. Usually you are in the hospital for five days before you are released. There are also some pretty important nerves that run through that area that if nicked could do some damage. You are probably asking the same question I am right now.... why go through such an intrusive surgery when there isn't any identified cancer? It is partially to diagnose if there is cancer there, remember, there is a 50% it is there even if it doesn't show up on the scan. And two, if there is cancer then it can possibly be completely removed without the need of future chemotherapy. Chemotherapy isn't exactly the equivalent of eating your fruits and vegetables and its fairly likely it will leave you sterile. So if you can avoid it all the better. However, there is still a 50% chance that the cancer has not spread and you are performing needless surgery. If you do not have the surgery though, you will spend the next several years having monthly C/T scans, x-rays, and blood work. If the cancer does show up down the road, early detection along with chemotherapy almost always kills the cancer completely.
I had the C/T scan on Saturday. It wasn't bad but I could definitely do without the barium. I dealt with its after affects half of the day. It should only take a couple of days to get the results back. Once the results are in I am guessing I will meet again with my urologist and probably an oncologist as well to determine a course of treatment. I will also need another blood test to see if there has been a change in the tumor markers. There are many components that go into consideration when deciding on a course of treatment. At this point I have to be prepared for surgery and chemo, although I am hoping I only have to deal with one of the two.
I called the urologist on Wednesday and disappointingly the pathology report was not complete. Such was the case on Thursday and Friday. In fact, it was still not completed through the next week. Finally the following Thursday arrived and I was scheduled for a post-op appointment with my urologist. The pathology report was finally complete and I would hear the news from Dr Stout at her office. I received 95% of what I was hoping for. The tumor was 95% classic seminoma. Unfortunately the tumor also contained 5% nonseminoma which contained two sub types, Embryonal carcinoma and yolk sac. Even though the tumor was 95% seminoma, it would have to be treated as a nonseminoma.
Up to this point I had remained extremely positive. I felt good about everything and was prepared to put up a strong fight. This was the first time since finding out I had a tumor that I really felt scared. The survival rate for those with seminoma is and outstanding 98%. For nonseminoma it is a little closer to around 90 or 92%. Still outstanding but if someone told you there was a 10% chance you would die in a car accident on the way home from work today it would probably make you a little nervous. Nevertheless, I am extremely optimistic and excited to face this head on. Another element of the pathology report that wasn't in my favor was the presence of vascular invasion. This means that the cancer had leaked into the veins. This is the launching pad for the cancer to spread to the lymph nodes in the stomach. Part of what makes testicular cancer so treatable is its predictability. The first place that TC spreads to is the lymph nodes in the stomach. This being the case the next step is to have a C/T scan looking for tumors in the lymph nodes. However, statically speaking, whether or not tumors show up on the scan, there is better than a 50% chance the cancer has spread. Micro metastasis is too small to be picked up on the scans but will develop into cancer sooner or later. This can cause false negatives on a C/T scan.
Dr. Stout explained the pathology report and then we discussed what the potential treatment plan would be depending on the results of the C/T scan. This is the part that is causing the majority of my stress at the moment. It gets confusing so pay attention :) If the C/T scan comes back positive, in other words it comes back showing enlarged lymph nodes, then the cancer has more than likely spread. This would put it at Stage II, nonseminoma testicular cancer. The treatment would call for chemotherapy and likely surgery to remove some lymph nodes. This type of cancer is highly responsive to chemo. If the C/T scan comes back negative, showing no evidence of enlarged lymph nodes, then the cancer would be stage a late Stage I nonseminoma. Meaning the cancer is isolated to the testicle but has signs that it may have spread. Interestingly enough, the standard protocol for this is surgery. It is called Retroperitoneal Lymph Node Dissection. Yes, it is as bad as it sounds. Basically they go in, push all your 'insides' to the side, go all the way behind your stomach, and remove a bunch of lymph nodes. Usually you are in the hospital for five days before you are released. There are also some pretty important nerves that run through that area that if nicked could do some damage. You are probably asking the same question I am right now.... why go through such an intrusive surgery when there isn't any identified cancer? It is partially to diagnose if there is cancer there, remember, there is a 50% it is there even if it doesn't show up on the scan. And two, if there is cancer then it can possibly be completely removed without the need of future chemotherapy. Chemotherapy isn't exactly the equivalent of eating your fruits and vegetables and its fairly likely it will leave you sterile. So if you can avoid it all the better. However, there is still a 50% chance that the cancer has not spread and you are performing needless surgery. If you do not have the surgery though, you will spend the next several years having monthly C/T scans, x-rays, and blood work. If the cancer does show up down the road, early detection along with chemotherapy almost always kills the cancer completely.
I had the C/T scan on Saturday. It wasn't bad but I could definitely do without the barium. I dealt with its after affects half of the day. It should only take a couple of days to get the results back. Once the results are in I am guessing I will meet again with my urologist and probably an oncologist as well to determine a course of treatment. I will also need another blood test to see if there has been a change in the tumor markers. There are many components that go into consideration when deciding on a course of treatment. At this point I have to be prepared for surgery and chemo, although I am hoping I only have to deal with one of the two.
Batter up, the count: Ball One, strike one
Friday finally arrived. I was ready for the operation. I was actually looking forward to it. Get it over with and move on with my life. Emotionally I don't think I could have been any better. I wasn't afraid. I was prepared to deal with it. The inguinal orchietomy (or I/O, the term people in my new-found subculture of TC patients and survivors refer to it as) isn't too difficult. It's an outpatient procedure, the operation takes only about 90 minutes. I think the only eventful part of the the day was while the the nurse was prepping me for surgery and checking my blood pressure. After seeing that it was a little high he asked my mom to leave the room. He then asked if I was taking steroids. I laughed. He was serious. I guess I should take that as a compliment. So I guess I have two things in common with Lance Armstrong, we both found out we had cancer on Oct 2nd, and we were both accused of taking steroids :) Hopefully the third thing we have in common is we both beat TC.
After waking up from the procedure I was ready to get home. Unfortunately I was having a hard time breathing so they had to keep me around for a couple of extra hours until I was stable. This was particularly nerve racking for my poor mother. I think she is getting the worst part of this whole cancer thing.
The recovery period was almost as good as a vacation. Besides having a 4 inch incision at the base of my abs and some fairly significant pain extending down to the bottom of my groin, I was quite comfortable. The meds did wonders and I enjoyed a couple of days of movies, reading, and homemade cookies.
After waking up from the procedure I was ready to get home. Unfortunately I was having a hard time breathing so they had to keep me around for a couple of extra hours until I was stable. This was particularly nerve racking for my poor mother. I think she is getting the worst part of this whole cancer thing.
The recovery period was almost as good as a vacation. Besides having a 4 inch incision at the base of my abs and some fairly significant pain extending down to the bottom of my groin, I was quite comfortable. The meds did wonders and I enjoyed a couple of days of movies, reading, and homemade cookies.
It's nothing serious, just took a blow to the family jewels
November 14, 1987. It was the day my father lost his battle with colon cancer. He was only 38 years old. As a kid I would have people tell me, 'Wow, 38 years old. That is so young'. As a ten year old I would reply "I don't know, 38 seems pretty old to me". Today I realize just how young he really was. Now, as a 31 year old recently diagnosed with Testicular Cancer, I am brought to a full realization of what it means to be a young man dealing with cancer.
Background: I have always been healthy and active. I have probably never called in sick more than 2 days in my entire life. (That does not include a couple of days I may have called in sick but was spotted on the golf course later that day). In the last couple of years I have put an even greater emphasis on living a healthy lifestyle. I dropped 30 pounds of body weight and even added a little bit of muscle. I took up activities such as hiking, snowshoeing, and backcountry skiing. In the last year I have missed very few days in the gym... that's where this story becomes interesting....
'The Incident': On a very ordinary day sometime in early August I left work and went to the gym. It must have been a Tuesday because I was dreading a gruelling legs workout. I loaded a couple of plates on to the end of a barbell preparing to start my workout with some deadlifts. I needed a couple of clamps to put on the end of the barbell to keep the weights on tight. I had one of the small, maybe a pound, plastic clamps in my hand. As I was walking around the gym bouncing the clamp around in my hand casually looking for a second clamp, I bobbled the clamp and it struck me solidly, yet with minimal contact, in the right testicle. Although it hit with minimal force it brought me to my knees in the most agonizing pain I had ever felt there. I had to lay down on a bench for 5 minutes before I could even stand up. After ten minutes of rest I completed half of a workout before giving up. Needless to say it was sore for a good week.... other than that I really didn't think much of it.
A few weeks later I started to notice that it was somewhat enlarged. It really wasn't sore, just bigger. No biggie I thought, it's probably just swollen. The weeks started passing by and no change. If anything it was possibly getting bigger. I told a few people about it and of course they advised me to have it checked out asap. 'Nah, its just a little swollen, I took a pretty good blow there a few weeks ago and it just needs some time to heal'. After about 7 weeks I started getting a little nervous. Finally I acquiesced and called the doctor. It was Friday, October 2nd. I would find out later that it was Oct 2nd, 1996 that Lance Armstrong was told, 'you have cancer.'
I was able to get an appointment that morning. The nurse took me to a room and told me that the doctor was working with a student and was wondering if I would mind if the student sat in. I responded a little tentatively, 'ummm, maybe not this time'. Dr. Eberhard came in shortly after and took a look. After giving him the background information he was certain it was nothing much and that it generally just takes some time to heal. However, after giving the physical exam he was certain that that wasn't the case. He didn't seem too concerned, however, he scheduled me an ultrascan that afternoon. It still hadn't hit me that anything could be seriously wrong. That afternoon I went to another facility and a female technician performed an ultrascan. Although a little awkward, I still wasn't overly concerned. Than something happened. The technician said, 'Ok, I am all finished. Sometimes the site specialist likes to come in and take a look in person, I'll be right back.' Now, I am not an expert in these kind of matters, however, I know enough to know that when they have to bring in someone else to take a look, something is wrong. An older man entered the room and took a look. He evaluated the images for no more than ten seconds, then turned to me and said, 'I think its a tumor.' I was shocked. All I could respond with was, 'what does that mean?' He didn't answer my question. He said he was not in a position to consult. I responded by asking if that meant I have cancer. He said, 'yeah, I think so, like what Lance Armstrong had.'
Losing a parent at an early age in life is not easy. I was lucky to have the most amazing mother on the planet. She provided everything I ever needed. I have always felt lucky. I have a great family, I have always had great friends. I was successful in college and have been very fortunate in my career. It almost seems as though I have been invincible. Whenever something bad has happened, something better happens shortly after and I come away the better. Hearing the words 'you have cancer' creates a feeling of vincible-ness that strikes you at your core.
I changed back into my clothes and was immediately on the phone with my doctor. It was 5:00 on a Friday night. We discussed the results of the ultrascan and he was determined to get things moving. He was able to schedule me an appointment at 7:00 a.m. Monday morning with a urolgist. I would have to have my blood drawn to look for tumor markers and a chest x-ray to look for tumors in my chest before Monday morning. We were able to find places to have these done on Saturday.
Monday morning I met with the Urologist, Dr. Lisa Stout. She reviewed the ultrascan and performed a physical exam. 'It's a tumor and we got to get it out right away. Let's see if we can get something scheduled for tomorrow.' Wow, just that fast. The soonest we could get it done was that Friday. It was that fast, in a matter of 7 days we would go from identifying a tumor to having a radical inguinal orchiectomy performed. This is where they make an incision just below the belt line and remove the testicle. I asked her how often testicular tumors are malignant, her response, 'almost always.' That was not promising.
I spent the next few days researching testicular cancer. The information was optimistic. Turns out TC is curable about 95% of the time. In some cases the only treatment that is necessary is the removal of the cancerous testicle. Much of it depends on the results from the pathology report that would be available a week or so after the surgery. The initial chest x-ray was negative but the blood test did show some minor elevated tumor markers.
Background: I have always been healthy and active. I have probably never called in sick more than 2 days in my entire life. (That does not include a couple of days I may have called in sick but was spotted on the golf course later that day). In the last couple of years I have put an even greater emphasis on living a healthy lifestyle. I dropped 30 pounds of body weight and even added a little bit of muscle. I took up activities such as hiking, snowshoeing, and backcountry skiing. In the last year I have missed very few days in the gym... that's where this story becomes interesting....
'The Incident': On a very ordinary day sometime in early August I left work and went to the gym. It must have been a Tuesday because I was dreading a gruelling legs workout. I loaded a couple of plates on to the end of a barbell preparing to start my workout with some deadlifts. I needed a couple of clamps to put on the end of the barbell to keep the weights on tight. I had one of the small, maybe a pound, plastic clamps in my hand. As I was walking around the gym bouncing the clamp around in my hand casually looking for a second clamp, I bobbled the clamp and it struck me solidly, yet with minimal contact, in the right testicle. Although it hit with minimal force it brought me to my knees in the most agonizing pain I had ever felt there. I had to lay down on a bench for 5 minutes before I could even stand up. After ten minutes of rest I completed half of a workout before giving up. Needless to say it was sore for a good week.... other than that I really didn't think much of it.
A few weeks later I started to notice that it was somewhat enlarged. It really wasn't sore, just bigger. No biggie I thought, it's probably just swollen. The weeks started passing by and no change. If anything it was possibly getting bigger. I told a few people about it and of course they advised me to have it checked out asap. 'Nah, its just a little swollen, I took a pretty good blow there a few weeks ago and it just needs some time to heal'. After about 7 weeks I started getting a little nervous. Finally I acquiesced and called the doctor. It was Friday, October 2nd. I would find out later that it was Oct 2nd, 1996 that Lance Armstrong was told, 'you have cancer.'
I was able to get an appointment that morning. The nurse took me to a room and told me that the doctor was working with a student and was wondering if I would mind if the student sat in. I responded a little tentatively, 'ummm, maybe not this time'. Dr. Eberhard came in shortly after and took a look. After giving him the background information he was certain it was nothing much and that it generally just takes some time to heal. However, after giving the physical exam he was certain that that wasn't the case. He didn't seem too concerned, however, he scheduled me an ultrascan that afternoon. It still hadn't hit me that anything could be seriously wrong. That afternoon I went to another facility and a female technician performed an ultrascan. Although a little awkward, I still wasn't overly concerned. Than something happened. The technician said, 'Ok, I am all finished. Sometimes the site specialist likes to come in and take a look in person, I'll be right back.' Now, I am not an expert in these kind of matters, however, I know enough to know that when they have to bring in someone else to take a look, something is wrong. An older man entered the room and took a look. He evaluated the images for no more than ten seconds, then turned to me and said, 'I think its a tumor.' I was shocked. All I could respond with was, 'what does that mean?' He didn't answer my question. He said he was not in a position to consult. I responded by asking if that meant I have cancer. He said, 'yeah, I think so, like what Lance Armstrong had.'
Losing a parent at an early age in life is not easy. I was lucky to have the most amazing mother on the planet. She provided everything I ever needed. I have always felt lucky. I have a great family, I have always had great friends. I was successful in college and have been very fortunate in my career. It almost seems as though I have been invincible. Whenever something bad has happened, something better happens shortly after and I come away the better. Hearing the words 'you have cancer' creates a feeling of vincible-ness that strikes you at your core.
I changed back into my clothes and was immediately on the phone with my doctor. It was 5:00 on a Friday night. We discussed the results of the ultrascan and he was determined to get things moving. He was able to schedule me an appointment at 7:00 a.m. Monday morning with a urolgist. I would have to have my blood drawn to look for tumor markers and a chest x-ray to look for tumors in my chest before Monday morning. We were able to find places to have these done on Saturday.
Monday morning I met with the Urologist, Dr. Lisa Stout. She reviewed the ultrascan and performed a physical exam. 'It's a tumor and we got to get it out right away. Let's see if we can get something scheduled for tomorrow.' Wow, just that fast. The soonest we could get it done was that Friday. It was that fast, in a matter of 7 days we would go from identifying a tumor to having a radical inguinal orchiectomy performed. This is where they make an incision just below the belt line and remove the testicle. I asked her how often testicular tumors are malignant, her response, 'almost always.' That was not promising.
I spent the next few days researching testicular cancer. The information was optimistic. Turns out TC is curable about 95% of the time. In some cases the only treatment that is necessary is the removal of the cancerous testicle. Much of it depends on the results from the pathology report that would be available a week or so after the surgery. The initial chest x-ray was negative but the blood test did show some minor elevated tumor markers.
Subscribe to:
Posts (Atom)