In general, I think I do a pretty good job of staying informed about the latest in breast cancer research as well as in my own personal cancer journey. There is information that I have about my own diagnosis such as my prognosis, the survivability rate, etc that I don't particularly like, but I have them.
When I was first diagnosed, I chose to take an Oncotype test that is pretty darn reliable at indicating recurrence rates in breast cancer patients. It is a simple test and in some cases it is used to determine if people are a good candidate for chemotherapy. In my case, my pathology report came back saying that my diagnosis was a Grade 3 out of 3 which is aggressive so my doctor agreed to the test, but indicated that she would be VERY surprised if it came back with a low score.
The test results take several weeks and come by mail. I got my big white envelope in the mail and found that I couldn't open it. Though I knew that my cancer was aggressive and that there was no chance I was going to avoid chemotherapy, I found that I couldn't deal with an actual number saying I had x% chance of recurrence. I know roughly what my chances are of a recurrence, but didn't want to carry a number around in my head.
I gave the envelope to my oncologist, told her I didn't want to know what was in it, but wanted to know if we were on the right path as far as chemo, radiation etc. She said we were definitely on the right path and that the oncotype score did not change our treatment plan at all.
Yesterday I went in for a regular check up with my oncologist and asked her about having my ovaries removed. There are several reasons for this, mostly to keep the estrogen level in my body down, but also to decrease my chances of developing ovarian cancer. We talked about the pros and cons of having it done and I asked her if I should be doing it earlier than later. She answered that there was no need for me to do it right now, although with such a high oncotype score I should plan to do it at some point. Wait. Stop. "High Oncotype score?" I literally felt my head pop out of the sand.
She did not tell me my actual number so I still don't have to carry a number around in my head, but I do now have to carry that "High Oncotype score" in my head and try to figure out what to do with it. I like to tell myself that I am doing everything I can to keep my recurrence rate down, but that isn't entirely true. I am still not getting enough exercise and I am still carrying around some extra weight. These are two of the easiest things a woman can do to reduce her risk and I am still at an increased risk. I also now have to wonder if my treatment was aggressive enough. I had 4 rounds of chemo-the minimum amount that anyone has. While I certainly didn't want to do more, I thought it was enough. Now I don't know if I have done everything I could.
Information is powerful. Sometimes too powerful.
Showing posts with label prognosis. Show all posts
Showing posts with label prognosis. Show all posts
Saturday, October 17, 2009
Thursday, April 16, 2009
Circles
Yesterday I had the chance to do several thing and it turned out to be a great day. In the morning I had an appointment with my oncologist. Just a regular check up appointment. I realized that when I was diagnosed, the first oncologist that I talked to had told me I was in for about a year of treatment and recovery. I was diagnosed in May 2008. Yesterday my oncologist told me there was nothing to report. I looked completely healthy, my blood levels are back to normal and she doesn't want to see me for another 3 months. I felt like I had come full circle-I was healthy last April and I am healthy this April.
I left my doctor appointment to go walk around Green Lake with Annie. Annie is a colleague from WaMu that I met via the 3 Day walk. Soon after I was diagnosed, I found her on the Susan G. Komen 3 Day website as one of Washington's top fundraisers for 2008. I approached her to thank her for the work that she was doing and a friendship bloomed from there. I was lucky enough to work for Annie for the last 6 months at WaMu so have had the chance to see her in varying lights-all of which she excels at. Yesterday instead of encouraging her about walking and having her encourage me about pushing through treatment, we got to help each other train for the 3 day and enjoy a beautiful day in the process.
Finally I had the opportunity to meet with several women that I have "met" through the message boards at BreastCancer.org. I have been prowling these message boards for almost a year, finding answers to questions, finding more questions, and finding many brave women. I started a thread for people in Seattle because I knew there must be more than just me here so about 6 of us finally got together to meet in the real world.
I was a little worried about this meeting. How much fun can it be to have a bunch of women talk about how sick they are and how cancer is miserable? I thought it might be somewhat depressing but it wasn't in the least. We are all different, with different diagnosis, different lives, different treatments and we certainly talked about those things. But then we started finding out other things and closing other circles. Two of us found we are from the same town. Some of us have the same doctors, we are all close to the same age. Two of us are walking in the Susan G. Komen 3 day. I even found that one of these women has been following this blog by way of my friend Annie for some time now and has even commented on my blog before. Of all the exchanging of information and realizing our differences and similarities, what did we do the most of? We laughed. Not because we have cancer, but because we are still able to enjoy ourselves despite the hell we have been through or are going through.
To my new Crazy, Sexy, Cancer in Seattle circle of friends; Robin, Susan, Carol, Gina and Kristina-Thanks for the laughs.
Sunday, June 15, 2008
Good News and Bad News (but mostly good!)
I had my first appointment with my oncologist on Friday. I liked her very much and she made me feel very comfortable. She went through my pathology report in detail with me so I understood exactly what my prognosis is.
In my particular case, there is good news and bad news, but mostly good. My cancer is considered Stage II purely because of the size of the tumor. Had it been smaller, I would have been classified as Stage I because I do not have any evidence of cancer in my lymph nodes or anywhere else in my body. She said mine is the best reason to be classified as Stage II.
I am also positive for Estrogen and Progesterone receptors. This essentially means that estrogen and progesterone in my body are captured by the cancer cells as they go by and cause the cancer cells to grow. Though it sounds like a bad thing because I am a pre-menopausal female and am still producing estrogen, it is actually a good thing because that means there is a relatively easy way to stop it. Just block the estrogen and progesterone from being able to attach to any cancer cells and half the problem is solved.
My cancer is classified as aggressive. On a scale of 1-9, 9 being most aggressive, I am classified as 9. While this is obviously discouraging to hear, the good news is that aggressive cancers are the ones that are most effectively treated with chemotherapy. By design, chemotherapy kills the quickly dividing cells. If I had a less aggressive type of cancer, it is possible that the chemo would not be as effective. If I have to go through it-it better be worth it in my opinion!
She has set my treatment up as 4 rounds of chemo once every three weeks with a regimen of two different types of drugs. While I would REALLY rather not do chemo, I knew that I was going to have 4-6 rounds with 2-3 drugs, so 4 rounds with 2 drugs is about the best I could hope for.
More bad news---I will definitely be losing my hair and pretty quickly. I will lose my hair 2-3 weeks after my first round of chemo. While I can't spin this into good news, I can say that she has told me that with my particular regime, I should likely not be horribly nauseous. She said that the day of treatment will take about 5 hours and I should feel fine. I should also feel OK the next day and by the end of the third day will begin to feel pretty crappy-achy and tired as if I have the flu. This will last for about a week and then I will be back on my feet, though tired until the next round. She has promised that she will pump me so full of anti-nausea drugs that I should be OK. I am really hopeful that she is right about this one.
She also said that the chemo will send me into menopause. So while feeling achy and tired and generally crappy and losing my hair, I can also look forward to hot flashes, moodiness and night sweats. My doctor was thrilled with this actually and told me that in my case, going into menopause is just as beneficial as going through chemo. I told her she could just yank my uterus and ovaries out if she would like and I will just forego chemo, but oddly she didn't agree with that plan. Although at a later date, it might be an option.
The last part that was relatively unsettling was that in looking at my history, she wants me to take part in some genetic testing. My dad passed away from pancreatic cancer when he was just 48 years old. Though I have always heard that pancreatic cancer is not necessarily hereditary, she told me that it actually can be related to breast cancer and ovarian cancer, especially suspicious given how young he was at the time of diagnosis. I will be talking to a genetic counselor and doing some tests to determine if I carry the breast cancer gene. What I am more worried about is not so much if I have it because clearly I have breast cancer so it doesn't really matter, but whether my sister has it, my daughters have it, my nieces have it. In the case of my children, my husband's sister had breast cancer at 43 as well so my kids may be getting a double whammy for risk. This frightens me more than anything else so far.
So that is my news. Some good, some bad, but all things considered, I still have a very good prognosis. After surgery, chemo, radiation and hormone therapy I should have a 90% chance of survival. That is about the same chances I had before I had cancer so that is pretty good!
In my particular case, there is good news and bad news, but mostly good. My cancer is considered Stage II purely because of the size of the tumor. Had it been smaller, I would have been classified as Stage I because I do not have any evidence of cancer in my lymph nodes or anywhere else in my body. She said mine is the best reason to be classified as Stage II.
I am also positive for Estrogen and Progesterone receptors. This essentially means that estrogen and progesterone in my body are captured by the cancer cells as they go by and cause the cancer cells to grow. Though it sounds like a bad thing because I am a pre-menopausal female and am still producing estrogen, it is actually a good thing because that means there is a relatively easy way to stop it. Just block the estrogen and progesterone from being able to attach to any cancer cells and half the problem is solved.
My cancer is classified as aggressive. On a scale of 1-9, 9 being most aggressive, I am classified as 9. While this is obviously discouraging to hear, the good news is that aggressive cancers are the ones that are most effectively treated with chemotherapy. By design, chemotherapy kills the quickly dividing cells. If I had a less aggressive type of cancer, it is possible that the chemo would not be as effective. If I have to go through it-it better be worth it in my opinion!
She has set my treatment up as 4 rounds of chemo once every three weeks with a regimen of two different types of drugs. While I would REALLY rather not do chemo, I knew that I was going to have 4-6 rounds with 2-3 drugs, so 4 rounds with 2 drugs is about the best I could hope for.
More bad news---I will definitely be losing my hair and pretty quickly. I will lose my hair 2-3 weeks after my first round of chemo. While I can't spin this into good news, I can say that she has told me that with my particular regime, I should likely not be horribly nauseous. She said that the day of treatment will take about 5 hours and I should feel fine. I should also feel OK the next day and by the end of the third day will begin to feel pretty crappy-achy and tired as if I have the flu. This will last for about a week and then I will be back on my feet, though tired until the next round. She has promised that she will pump me so full of anti-nausea drugs that I should be OK. I am really hopeful that she is right about this one.
She also said that the chemo will send me into menopause. So while feeling achy and tired and generally crappy and losing my hair, I can also look forward to hot flashes, moodiness and night sweats. My doctor was thrilled with this actually and told me that in my case, going into menopause is just as beneficial as going through chemo. I told her she could just yank my uterus and ovaries out if she would like and I will just forego chemo, but oddly she didn't agree with that plan. Although at a later date, it might be an option.
The last part that was relatively unsettling was that in looking at my history, she wants me to take part in some genetic testing. My dad passed away from pancreatic cancer when he was just 48 years old. Though I have always heard that pancreatic cancer is not necessarily hereditary, she told me that it actually can be related to breast cancer and ovarian cancer, especially suspicious given how young he was at the time of diagnosis. I will be talking to a genetic counselor and doing some tests to determine if I carry the breast cancer gene. What I am more worried about is not so much if I have it because clearly I have breast cancer so it doesn't really matter, but whether my sister has it, my daughters have it, my nieces have it. In the case of my children, my husband's sister had breast cancer at 43 as well so my kids may be getting a double whammy for risk. This frightens me more than anything else so far.
So that is my news. Some good, some bad, but all things considered, I still have a very good prognosis. After surgery, chemo, radiation and hormone therapy I should have a 90% chance of survival. That is about the same chances I had before I had cancer so that is pretty good!
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