I pushed it way too hard today. Sadly, 'pushing it' meant driving myself to my appointment, six blocks away, with my medical oncologist, dropping my daughter off at a friend's house along the way. I came home and was wasted tired, and despite napping, still feel horrid. It's beyond tired; it's that all-consuming, my body feels like it weighs 400 pounds tired.
Anyway, after scheduling appointments and canceling them I don't know how many times, I finally met with Dr. M to discuss part 2 of this never-ending nightmare. I fully expected to have a conversation about tamoxifen vs. ovarian suppression + something called an aromatase inhibitor, but it wasn't even an issue. It was so not an issue that I sort of questioned him about it, wondering if he remembered who I was, what my story was, the conversations we had had in the past.
To make a long story short, because I am tired, tired, tired, tamoxifen is the traditional route for pre-menopausal women. Or, to be more precise, it is the only route. Tamoxifen affects estrogen, and since my cancer is strongly estrogen-driven, taking tamoxifen will reduce my chances of a recurrence by 50%, according to Dr. M. I need to take it for at least five years, maybe ten. We'll cross that bridge when we get there, if I even get there. The only reason to not go this route is because of my history of DVT and the fact that I'm only 40. Tamoxifen can cause blood clots, and though it's fairly rare, I am at higher risk for this simply because of my history of DVT. As for being 40, which is 'very young' in Cancer Land, some oncologists would argue that I might want to be more aggressive. (In fact, one has.) Tamoxifen is the conservative route for me; ovarian suppression + aromatase inhibitor would be more aggressive.
I'll be honest - I've been DREADING ovarian suppression, which would mean getting shots every month to force me into menopause so that I could take an aromatase inhibitor. One of the major side effects of this is premature arthritis, and joint pain/degeneration, which is the second to last thing I need (second only to a recurrence, lol). I've gone back and forth between which route I want to go; there is a fine line between fending off a recurrence and ending up in a wheelchair. I had been leaning toward the more aggressive route after reading too many stories about how scary it is to have cancer at 40, but... I was easily persuaded back to tamoxifen with Dr. M's endorsement.
The more I think about it, no matter what route I choose, I'll never feel confident that the cancer won't come back and metastasize, and eventually kill me. Never. So quality of life matters to me. If I have a limited number of years in this body, I want them to be good years. Of course, we all have limited years. I keep thinking back to a professor I had in grad school who, despite being an exercise physiologist, complained about how the benefits of exercise were often exaggerated. As he used to say, we should not be espousing the idea that exercise will add years to your life, rather life to your years. It's about quality of life, not necessarily living longer. We can do everything right and still die before we think we should.
Dr. M said he was not overly concerned about my DVT, given that it was provoked by surgery. I don't have a clotting disorder, so my risk of developing blood clots as a result of being on tamoxifen is small. My cancer is not overly aggressive, and my oncotype DX, which predicts the probability of a recurrence, is low. Dr. M said the data showed that the women who benefited from a more aggressive therapy were those who had undergone chemotherapy for lymph node positive cancer who were under 35. So that seals it. Just as I didn't need convincing that I would have only a small benefit from chemo that was not worth the risk, I didn't need a ton of convincing that there was not compelling evidence that the benefits of the more aggressive route would outweigh the effects it would have on my quality of life.
I left with a prescription for tamoxifen, although Dr. M said I didn't need to start taking it right away - 'when you're ready.' He did say he would like me to start taking it before 2016, but that he understood that I've been through a lot, and this is all just... a lot. A lot to take in. He also said he did not think I would find the side effects to be horrid, and counseled me to not read too much on the Internet. LOL. After I've taken it for a month, I need to see him again so he can run some tests on me and make sure everything is copacetic. I made an appointment to see him again on November 20th, which means I need to start taking the tamoxifen by mid-October.
So basically I need to focus on recovering so that I can prepare to attack the natural order of my body in a new way. Fun stuff. Said no one, ever.
Showing posts with label breast cancer at a young age. Show all posts
Showing posts with label breast cancer at a young age. Show all posts
Monday, September 21, 2015
Sunday, August 9, 2015
Ah, to be young again...
I turned 40 on November 9th of last year, 2014. Although I occasionally get nostalgic about my younger years, I'm mostly happily settled into 'middle age.' I have an awesome family with two kids (I always wanted two, but the second one was never a given), a good financial situation, a good job (despite my complaints), and a really lovely group of friends. A lot of my friends, most of whom have kids the same age as my daughter (who is going into 4th grade), are older than I am, and have said that the 40s are their favorite decade so far. I can feel that. I love life. The 40s are good.
Minus the cancer.
And come to think of it, even with the cancer, I still have an awesome family with two kids, a good financial situation, a good job, and a really lovely group of friends. So the 40s are good. I just hope I live long enough to compare the 40s to the 50s and the 60s and the 70s and the 80s.
So you think I'm being morbid and melodramatic, do you? Well, not so much it turns out.
2014 was filled with a lot of stress over my hip situation. I felt like 39 was too young to be having such severe hip pain, and that I could not live with the pain for the rest of my life. So I had hip surgery, which led to DVT. Hobbling around and taking Xarelto definitely makes you feel older than 39 or 40. These are an old person's problems. I wanted to feel young, or at least 40 years old, and not 70.
Now I have cancer. Talk about an old person's problem. In Cancer Land, I am young. In some studies, I even qualify as Very Young. All three oncologists I saw mentioned this, but I never fully got it. After all, I am not Very Young! I am middle-aged, and happily so!
But now... I understand. It all started with a discussion on breastcancer.org centered around a 31-year-old reporting that her oncologist had told her she needed to double her risk factor because of her age, and her age alone. She recommended chemo despite the fact that that this woman is early stage with a non-aggressive, hormone-positive breast cancer. Some people were disbelieving of age as an independent factor in risk, and indeed, there is a school of thought that the only reason young people with breast cancer have a worse prognosis than old people with breast cancer is because young patients tend to find the cancer themselves ( = larger tumors and later stage) and the incidences of triple negative cancer ( = harder to treat) are higher. But there is also a school of thought that the cancer itself is different when you are younger; it is more aggressive for reasons we don't yet understand. Age by itself is an independent prognostic factor for risk of recurrence and metastasis. All of the oncologists I saw seemed to belong to this school and told me I needed to add 'one degree of severity' to my diagnosis because of my age. I kind of shrugged it off at the time, reveling in my relief that I was early stage with a treatable type of cancer.
Of course I reacted to this conversation in typical science-y fashion by doing a PubMed search. And apparently, you can argue it both ways. There are studies to support both schools of thought. But the data that support the idea that age alone is a risk factor are fairly depressing. Those 90% cure rates you hear about? Not applicable to younger people. And even at 40, I am considered 'young' in all studies, and even 'very young' in others. I'm still picking through piles of articles, and there are loads of complicating factors in all of this, but I now understand the full gravity of what oncologists have been telling me. Cancer at 40 is different than cancer at 60, for whatever reason. I may want to consider being more aggressive. I didn't really pay attention to this because it was too hard for me to wrap my mind around having my ovaries taken out, and according to stats, I should have around a 10% chance of recurrence without putting myself through that hell. But those are stats based on old ladies, who often die of something else before the cancer comes back or at least before it comes back enough to kill them. People try to tell me that data lie, and you can interpret data however you want to come to the conclusion you want to see, but this goes against everything I believe as a scientist. Data are data. Data give us live-saving treatments. Even if the data are not conclusive, they are at the very least eye-opening. And trust me, my eyes are now wide fucking open. And they don't like what they see.
It just goes to show that you should be careful what you wish for. I wanted to feel young again, and boy, do I ever.
Minus the cancer.
And come to think of it, even with the cancer, I still have an awesome family with two kids, a good financial situation, a good job, and a really lovely group of friends. So the 40s are good. I just hope I live long enough to compare the 40s to the 50s and the 60s and the 70s and the 80s.
So you think I'm being morbid and melodramatic, do you? Well, not so much it turns out.
2014 was filled with a lot of stress over my hip situation. I felt like 39 was too young to be having such severe hip pain, and that I could not live with the pain for the rest of my life. So I had hip surgery, which led to DVT. Hobbling around and taking Xarelto definitely makes you feel older than 39 or 40. These are an old person's problems. I wanted to feel young, or at least 40 years old, and not 70.
Now I have cancer. Talk about an old person's problem. In Cancer Land, I am young. In some studies, I even qualify as Very Young. All three oncologists I saw mentioned this, but I never fully got it. After all, I am not Very Young! I am middle-aged, and happily so!
But now... I understand. It all started with a discussion on breastcancer.org centered around a 31-year-old reporting that her oncologist had told her she needed to double her risk factor because of her age, and her age alone. She recommended chemo despite the fact that that this woman is early stage with a non-aggressive, hormone-positive breast cancer. Some people were disbelieving of age as an independent factor in risk, and indeed, there is a school of thought that the only reason young people with breast cancer have a worse prognosis than old people with breast cancer is because young patients tend to find the cancer themselves ( = larger tumors and later stage) and the incidences of triple negative cancer ( = harder to treat) are higher. But there is also a school of thought that the cancer itself is different when you are younger; it is more aggressive for reasons we don't yet understand. Age by itself is an independent prognostic factor for risk of recurrence and metastasis. All of the oncologists I saw seemed to belong to this school and told me I needed to add 'one degree of severity' to my diagnosis because of my age. I kind of shrugged it off at the time, reveling in my relief that I was early stage with a treatable type of cancer.
Of course I reacted to this conversation in typical science-y fashion by doing a PubMed search. And apparently, you can argue it both ways. There are studies to support both schools of thought. But the data that support the idea that age alone is a risk factor are fairly depressing. Those 90% cure rates you hear about? Not applicable to younger people. And even at 40, I am considered 'young' in all studies, and even 'very young' in others. I'm still picking through piles of articles, and there are loads of complicating factors in all of this, but I now understand the full gravity of what oncologists have been telling me. Cancer at 40 is different than cancer at 60, for whatever reason. I may want to consider being more aggressive. I didn't really pay attention to this because it was too hard for me to wrap my mind around having my ovaries taken out, and according to stats, I should have around a 10% chance of recurrence without putting myself through that hell. But those are stats based on old ladies, who often die of something else before the cancer comes back or at least before it comes back enough to kill them. People try to tell me that data lie, and you can interpret data however you want to come to the conclusion you want to see, but this goes against everything I believe as a scientist. Data are data. Data give us live-saving treatments. Even if the data are not conclusive, they are at the very least eye-opening. And trust me, my eyes are now wide fucking open. And they don't like what they see.
It just goes to show that you should be careful what you wish for. I wanted to feel young again, and boy, do I ever.
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