Casey scheduled another blood draw for a few days later and followed that shortly with a chest CT. Over the next few days we continued to debate amongst each other about what treatment plan seemed the most logical, and reasonable considering Casey living away from my parents with only myself to really care for him if he did choose the chemo. Should he go home to Colorado to receive treatment, where my Mom could take good care of him? So many things to consider.
Casey got a call last Wednesday from the oncologist regarding the tumor markers in his last blood draw. They are climbing higher. Post surgery his AFP was 58, it is now close to 100. Basically meaning that the cancer is still in him somewhere, and it's growing.
Damn it! I mean....really? I was so not prepared to hear that. I had pretty much prepared myself for the fact that chemotherapy was going to happen but I most certainly did not expect that his tumor markers would rise. Remain the same, maybe even fall a little I thought- but get higher? I just wanted to scream. So- the decision was made. The doctor ordered Casey on not 2, but 3 cycles of chemotherapy, each cycle at 3 weeks. 9 weeks total, which makes his last week of chemo the week of Christmas. Super.
And now I am up to date. Case visited the sperm bank Friday and he will go again tomorrow. The sperm bank will bank his sperm after a down payment and then a yearly payment every year after. At 24 he's not even sure that he wants kids, but, you have to think ahead! The oncologist thinks chemo could start as soon as Tuesday 10/27. My Mom is flying in tomorrow night so she can be here for his first week- which is supposed to be the hardest of each cycle. The first week is the Cisplatin and it's everyday for 2 hours a day. These drugs are administered through an IV drip so Casey will have to go to the hospitals cancer center for treatment.
I have been feeling so helpless so I have been researching how to maintain a healthy diet while taking chemo. It's important to eat well, and provide your immune system with the tools to stay as strong as it can since chemo lowers it's ability to fight off disease.
The coming weeks will be trying, and hard and scary and concerning no doubt. I plan to blog the entire way through though so that anyone who reads this will have an idea of what they might be able to expect. Who knows, maybe all of the anti-nausea drugs they have available these days will keep Casey from getting super sick. Maybe he will just get really tired and some of the worst side effects will pass him by. God I hope so.
Showing posts with label Tumor Markers. Show all posts
Showing posts with label Tumor Markers. Show all posts
Sunday, October 25, 2009
Treatment
Treatment options are tricky. Our oncologist gave us a few to "choose" from even though, in the end, he pretty much did the choosing! Since Casey's tumors were considered to be stage 1S (s is equivalent to b, which is one level worse then if he had stage 1a) he could opt for 2 cycles of BEP chemotherapy. BEP is a combination of Bleomycin, Etoposide and Cisplatin, three pretty common chemo drugs used for more then just TC. Or, if the doctor liked the looks of his next blood test he could opt for active surveillance. Surveillance is not just "watching and waiting." They take weekly blood draws to watch your tumor markers, they schedule regular CT scans to monitor any possible re-growth or spread. The oncologist explained that 30% of those who choose active surveillance have a recurrence at sometime in their life. 70% do not- not terrible odds but I don't know that I would want to wake up every day wondering "is today the day they will find out it has come back? Will I officially join the 30% club?" If you were to have a recurrence you would have to have chemo done anyway, so it makes sense to just do the cycles now, get them over with and (hopefully) move on with your life and leave cancer in the past. Easy enough, right? Almost. Chemotherapy has a lot of negative side effects including sterility. Bleomycin is a very potent drug that can wreak havoc on your kidneys and lungs. Vomiting, nausea, hair loss, mouth sores, weight gain, weight loss, dry skin- the list really does go on and on! Plus, for Casey, he had school to consider! He had just started his law school mid-terms. While his school would allow for a medical leave of absence they would not give him credit for the classes he had made it half way through for this semester so he would essentially be starting his 2nd year all over again post chemotherapy! Yuck.
So, we sat at a crossroads. What do you do? What does Casey want to do? We had lots of talking and considering to do and the oncologist wanted Casey to get another blood draw and a chest CT scan (to ensure the cancer did not spread to the lungs). We left his office feeling foggy and even more confused then when we went in. How would we decide which treatment was the best for Casey? Well, we wouldn't have to.
So, we sat at a crossroads. What do you do? What does Casey want to do? We had lots of talking and considering to do and the oncologist wanted Casey to get another blood draw and a chest CT scan (to ensure the cancer did not spread to the lungs). We left his office feeling foggy and even more confused then when we went in. How would we decide which treatment was the best for Casey? Well, we wouldn't have to.
Friday, October 23, 2009
Radical Orchiectomy....huh?!
The morning went pretty smooth. We all met at the hospital and spent time with Casey before they wheeled him back to surgery. In total, I believe the surgery was about 2 hours with an hour or so post surgery. Casey was home by late afternoon and watching "The Office" reruns by dinner! He had plenty of helpers which was both great, and overwhelming. In hindsight, doing "shifts" may have been more practical, but in the moment everyone just wanted to be with him. He had very little pain and was able to get up and down pretty easy. He took pain pills for the first 2 days but changed to extra strength Tylenol on day 3. The worst part of the first 2 days for him was trying to poop. Bowel movements were painful due to the pressure on the incision. It didn't help that the pain meds made him constipated. On a side note, constipation is a common side effect of pain meds so ask your doc about this if you have any questions. My Dad picked up an over the counter stool softener and that seemed to help a little bit. Eventually it happened and the world kept spinning, but for Casey time was moving very slow until then!
One thing Casey was diligent about was ice. He did a great job keeping ice packs on the incision and his groin area and I do think that helped a ton in reducing swelling, and his overall recovery time.
The next 3-5 days were the worst. Not because Casey was in pain, he was actually feeling good. They were agonizing because all we could do was wait. Waiting for the doctor to call with news on what the stage of the cancer was. Waiting for news about what type of cancer we were dealing with. Waiting for news about what the next step would be as far as treatment, Casey's school, his future, his ability to have children- everything! All we could do was wait, and we were truly at the mercy of the labs, and the Urologist. I will say this; if you are not your own advocate, and you do not stay on top of the doctor and his staff, there is a good chance your case will get pushed to the side. Not forgotten about, but bumped down the importance ladder. Since my brother is over 18 my parents had no rights to his personal medical info. They could not call the doctor and ask questions, they could not call and badger the receptionist to check on results. This was hard. If possible, speak to the nurses and/or front office staff before you leave the surgery. Find out what their typical follow up protocol is. Do they have one designated person that checks on results and reports to the doctor? Does the doctor make important calls like these at the end of the week, or is there a specific day you can expect to hear from him? In our case, the doctor said he would call in a few days and by a few he meant 4. Yeah. He called us on Friday at 4:30- right before he left for the weekend. Nice.
From what he could tell, Casey had stage 1 testicular cancer. His tumor was 90% seminoma (the better kind to have) and 10% yolk sac. Our Oncologist has since explained to us that even though the tumor is largely seminoma, they treat all tumors that have any type of non-seminoma the way they would if the whole thing was non-seminoma. If that didn't make sense, all I am saying is that even though Casey's tumor was mostly seminoma, it would be treated as if it was 100% non-seminoma due to the 10% yolk sac. If you have not already looked at the different types of TC, take some time and read through the definitions. I found great info on the TCRC page, and also the American Cancer Society website. Both links can be found above, in the left column.
Casey was really hoping this phone call would explain exactly what his treatment would entail and what he should prepare for in the coming weeks. He was disappointed to find out he would have to wait 2 weeks to get his blood drawn, at which point the Oncologist we were being referred to would meet with Casey to go over the findings. The idea behind waiting 2 weeks is that hopefully your AFP (Alpha Fetoprotein) and HCG levels have dropped drastically. These two "tumor markers" are a convenient way to determine whether or not all of the cancer is gone. A normal AFP level is 0-8, Casey's was 657 before surgery. After his radical orchiectomy (testicle removal) his number had dropped to 58. This is great, but not low enough. The oncologist was vaguely hesitant about this and asked Casey to get another blood draw in a few days so he could see if the numbers were continuing to fall. Before I get to where we are today, I should go over Casey's treatment options as they were presented to us....in the next post!
One thing Casey was diligent about was ice. He did a great job keeping ice packs on the incision and his groin area and I do think that helped a ton in reducing swelling, and his overall recovery time.
The next 3-5 days were the worst. Not because Casey was in pain, he was actually feeling good. They were agonizing because all we could do was wait. Waiting for the doctor to call with news on what the stage of the cancer was. Waiting for news about what type of cancer we were dealing with. Waiting for news about what the next step would be as far as treatment, Casey's school, his future, his ability to have children- everything! All we could do was wait, and we were truly at the mercy of the labs, and the Urologist. I will say this; if you are not your own advocate, and you do not stay on top of the doctor and his staff, there is a good chance your case will get pushed to the side. Not forgotten about, but bumped down the importance ladder. Since my brother is over 18 my parents had no rights to his personal medical info. They could not call the doctor and ask questions, they could not call and badger the receptionist to check on results. This was hard. If possible, speak to the nurses and/or front office staff before you leave the surgery. Find out what their typical follow up protocol is. Do they have one designated person that checks on results and reports to the doctor? Does the doctor make important calls like these at the end of the week, or is there a specific day you can expect to hear from him? In our case, the doctor said he would call in a few days and by a few he meant 4. Yeah. He called us on Friday at 4:30- right before he left for the weekend. Nice.
From what he could tell, Casey had stage 1 testicular cancer. His tumor was 90% seminoma (the better kind to have) and 10% yolk sac. Our Oncologist has since explained to us that even though the tumor is largely seminoma, they treat all tumors that have any type of non-seminoma the way they would if the whole thing was non-seminoma. If that didn't make sense, all I am saying is that even though Casey's tumor was mostly seminoma, it would be treated as if it was 100% non-seminoma due to the 10% yolk sac. If you have not already looked at the different types of TC, take some time and read through the definitions. I found great info on the TCRC page, and also the American Cancer Society website. Both links can be found above, in the left column.
Casey was really hoping this phone call would explain exactly what his treatment would entail and what he should prepare for in the coming weeks. He was disappointed to find out he would have to wait 2 weeks to get his blood drawn, at which point the Oncologist we were being referred to would meet with Casey to go over the findings. The idea behind waiting 2 weeks is that hopefully your AFP (Alpha Fetoprotein) and HCG levels have dropped drastically. These two "tumor markers" are a convenient way to determine whether or not all of the cancer is gone. A normal AFP level is 0-8, Casey's was 657 before surgery. After his radical orchiectomy (testicle removal) his number had dropped to 58. This is great, but not low enough. The oncologist was vaguely hesitant about this and asked Casey to get another blood draw in a few days so he could see if the numbers were continuing to fall. Before I get to where we are today, I should go over Casey's treatment options as they were presented to us....in the next post!
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