I have gotten a few questions about when this all kicked into gear. I guess I have been so engaged in the process that to me it seems to have happened in slow motion when in reality a lot has happened in just 14 days. So here is how this all came about.
On and off again I have been having sinus headaches. For the most part I just wrote it off to my hectic schedule, changes in seasons or colds. Over the summer I noticed a bump on the side of my neck that occurred when I started exercising again. It seemed to go down a bit and was after what I thought was another sinus infection. Then about 3-4 weeks ago I seemed to have a more protracted sinus headache and another lump appeared. That's when I decided to see the doctor.
So 2 weeks and a day ago I went to see the nurse practitioner. She looked at the sinus infection, or so we thought, and checked out the two lumps (and found a 3rd.). The next day I was off to see the Ear Nose and Throat (ENT) specialist. When I saw the ENT doctor he checked out my sinus's with a scope (not fun!) and took a biopsy of one of the lumps. From there he also ordered some blood work and a CT scan. He also mentioned the possibility of lymphoma. That was on a Friday 2 weeks ago. The CT Scan was ordered for and blood work was ordered for Monday.
On Monday I did the CT scan and the blood work and was set. I checked back during the middle of the week. and they didn't have the test results. I did some research on lymphoma and wasn't overly enthused by what I read. Then on Thursday (I week after the first visit and a week ago yesterday) the ENT doctor called and said that they needed more tests but it looked like it was Nasopharyngeal carcinoma. (Say that 3 times fast.) That is when things kicked into high gear.
Over the next3 business days, Friday, Monday and Tuesday, I had two MRI's, a CT Scan another blood test and a biopsy of the main tumor taken. The last one was on Tuesday 3 days ago. Fortunately where I live all of the tests but a few are just 5 minutes from my house. The others are just 20 minutes away at the most.
On Tuesday before the biopsy they told me that at this point they were pretty sure it was Nasopharyngeal carcinoma and it was time to meet with the medical oncologist and present my case to the tumor board that meets on Wednesdays. When I got home I had a call from the oncologists office to meet the next morning.
On Wednesday we met with the oncologist who went over the diagnosis and outlined the treatment plan. (More on that later.) This of course kicked off even more appointments.
On Thursday I met with the radiation oncologist to go over his portion of the treatment plan. At the same time we set up appointments for next week for chemotherapy education (Or Chemo U as I like to call it.), a PET scan to check for spread elsewhere, a appointment to get a plastic mesh mask made and myself scanned for the radiation treatment (more on that later as well) and a consultation appointment for the potential of getting a food tube put in if needed. (Definitely want to avoid that if possible).
All of this happened in two weeks from the time I first walked into the general practitioners office complaining about a sinus infection. It was definitely the fast track to say the least.
Friday, October 19, 2007
Thursday, October 18, 2007
Treatment - Meet The Team
Something that I have to adjust to is the team approach to the way cancer is managed. There isn't a treatment czar per se. Instead it is a collaberative approach where all parties involved in the treatment work together with no one group quarterbacking the whole thing.
In my situation there are two primary types of treatment, chemotherapy and radiation therapy. It used to be that they would treat this type of cancer with just radiation therapy but a study done in the 90's showed that using radiation with chemo produced much better results. This is the study that has the 70% survival rate. (The radiation oncologist I met with today said his old boss was one of the people that ran the study. Bonus points for the radiation oncologist!)
So here is the quick overview of how the treatment works. Simultaneously they start the chemo and the radiation. The radiation treatment is done 5 days a week for 7 weeks. The chemotherapy has two phases. The first phase is three courses. The first course is delivered at the beginning then 3 weeks later you get the second course and then 3 weeks later you get the third course. After that you have an additional treatment with the primary drug at a bit lower dose and then another drug to go with it.
From talking to both the oncologist and the radiation oncologist today I think I can summarize the goals of the dual treatment. The radiation is designed to attack the identifiable tumors from the various tests that they have been running. It is in essence the targeted somewhat precision munitions to go after the big targets. The chemotherapy is designed to help fight the tumors but also any other stray cancer cells that may be lingering around. The chemo is like the ground troops going door to door to work on the entire body. Together in a coordinated approach they attack the identifiable tumors and any stray nasty cells that might linger after the aerial attack is done.
In the next post I will go over the radiation treatment since I met with that group today. The room where they administer the treatments is like something out of Star Trek. The facility here in Ithaca is 2 years old and is the state of the art. (They even have free wifi access and coffee in the waiting area.)
Next week I go for chemo education and will get into that a bit more then.
In my situation there are two primary types of treatment, chemotherapy and radiation therapy. It used to be that they would treat this type of cancer with just radiation therapy but a study done in the 90's showed that using radiation with chemo produced much better results. This is the study that has the 70% survival rate. (The radiation oncologist I met with today said his old boss was one of the people that ran the study. Bonus points for the radiation oncologist!)
So here is the quick overview of how the treatment works. Simultaneously they start the chemo and the radiation. The radiation treatment is done 5 days a week for 7 weeks. The chemotherapy has two phases. The first phase is three courses. The first course is delivered at the beginning then 3 weeks later you get the second course and then 3 weeks later you get the third course. After that you have an additional treatment with the primary drug at a bit lower dose and then another drug to go with it.
From talking to both the oncologist and the radiation oncologist today I think I can summarize the goals of the dual treatment. The radiation is designed to attack the identifiable tumors from the various tests that they have been running. It is in essence the targeted somewhat precision munitions to go after the big targets. The chemotherapy is designed to help fight the tumors but also any other stray cancer cells that may be lingering around. The chemo is like the ground troops going door to door to work on the entire body. Together in a coordinated approach they attack the identifiable tumors and any stray nasty cells that might linger after the aerial attack is done.
In the next post I will go over the radiation treatment since I met with that group today. The room where they administer the treatments is like something out of Star Trek. The facility here in Ithaca is 2 years old and is the state of the art. (They even have free wifi access and coffee in the waiting area.)
Next week I go for chemo education and will get into that a bit more then.
Wednesday, October 17, 2007
Naso What?
That was my first comment when the doctor told me that I probably had nasopharyngeal cancer. Based on some of the tests they were running I figured that I had something like lymphoma and had no clue what they were talking about.
It turns out that nasopharyngeal cancer is a rare head and neck cancer. There are approximately 2000 cases a year diagnosed. It is more prevalent in Asia. Here locally they may only see one or two new cases a year. (Not too worry, they do have excellent treatment for it here. More on that in another post.) Information on nasopharyngeal cancer can be found here at the National Cancer Institutes web site.
http://www.cancer.gov/cancertopics/pdq/treatment/nasopharyngeal/Patient/page1
One problem with a cancer that is so rare is that there is little data to go on and some of it is outdated or has problems due to the small sample size of the study. For example one study had a higher 5 year survival rate for stage III than stage II. Then mentioned in that study that the low sample rate meant that the numbers were not very accurate. Or as the oncologist told us unlike breast or colon cancer where there are many cases nasopharyngeal cancer can't be broken down into more specific categories for studies. Most studies include people of all age groups, health status and stages.
Having said all of that the oncologist felt that my prognosis is very good. The overall 5 year cure rate is 70% for all ages but given my health, age, lack of other symptoms and that I would be put on the strongest treatment regime he felt my prognosis was better than that. I just wanted to mention that before anyone started googling this cancer and found a wide variance in the results. All in I should be fine once the treatment has been completed.
It turns out that nasopharyngeal cancer is a rare head and neck cancer. There are approximately 2000 cases a year diagnosed. It is more prevalent in Asia. Here locally they may only see one or two new cases a year. (Not too worry, they do have excellent treatment for it here. More on that in another post.) Information on nasopharyngeal cancer can be found here at the National Cancer Institutes web site.
http://www.cancer.gov/cancertopics/pdq/treatment/nasopharyngeal/Patient/page1
One problem with a cancer that is so rare is that there is little data to go on and some of it is outdated or has problems due to the small sample size of the study. For example one study had a higher 5 year survival rate for stage III than stage II. Then mentioned in that study that the low sample rate meant that the numbers were not very accurate. Or as the oncologist told us unlike breast or colon cancer where there are many cases nasopharyngeal cancer can't be broken down into more specific categories for studies. Most studies include people of all age groups, health status and stages.
Having said all of that the oncologist felt that my prognosis is very good. The overall 5 year cure rate is 70% for all ages but given my health, age, lack of other symptoms and that I would be put on the strongest treatment regime he felt my prognosis was better than that. I just wanted to mention that before anyone started googling this cancer and found a wide variance in the results. All in I should be fine once the treatment has been completed.
Why have a blog?
This is my first blog posting and I thought that I would take a moment and let people know why I am having a blog. I guess the main reason is that I will be getting treatment for cancer in the next 8 weeks or so and there will be a lot of information and questions that people may have. My oncologist said that one of the main side effects of the treatment will be fatigue. This means that mid afternoon naps are allowed. (Yippeee!) Another side effect from the treatments could be nausea. Bummers on that one.
At the same time as the side effects kick in I am sure that family and friends will also be wanting to communicate even more thus the blog. This is a way that people can keep up to date with what is going on without having to repeat the same stuff multiple times. That will let me focus on what I need to focus on without worry about leaving anyone out of the loop. Of course I could have used e-mail for the same thing but you have to admit a blog is more fun.
So that is the main reason I created this blog. The second reason is that it provides me a place to keep track of my thoughts as I go through the process. The first few entries will bring people up to speed on how I got here and what is up for the next week or so then once treatment starts I can let people know how that is going.
At the same time as the side effects kick in I am sure that family and friends will also be wanting to communicate even more thus the blog. This is a way that people can keep up to date with what is going on without having to repeat the same stuff multiple times. That will let me focus on what I need to focus on without worry about leaving anyone out of the loop. Of course I could have used e-mail for the same thing but you have to admit a blog is more fun.
So that is the main reason I created this blog. The second reason is that it provides me a place to keep track of my thoughts as I go through the process. The first few entries will bring people up to speed on how I got here and what is up for the next week or so then once treatment starts I can let people know how that is going.
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