Oh, where's Claire Voyant and the Amazing Kreskin when you need them? How I wish I could get an ironclad guarantee that my decision to do or not do chemo will be the right one.For those hoping to learn how I will proceed next, unfortunately you may not be happy with this entry.
I have been doing my due diligence and calling those whom I think are all the right people, asking what I think are the right questions, doing the right research.
I am not opposed to chemotherapy. I am opposed to doing it unnecessarily. And therein lies the rub. There are no definite answers a) with any chemo b) without the chemo c) with someone with my rating on the Oncotype scale refusing chemo.
Reminder: According to the Oncotype Dx test, if one falls into the low or the high end of risk, it's found that patients will not/will respond and benefit from chemo respecitively. This discovery is great b/c for many years, people were getting chemo when it was unwarranted; now they are ruled out. What's still being studied, however, is what to do for intermediate scorers (in my case I fall within the low end of intermediate risk or 13% risk of recurrence w/in ten years).
The greatest cons --aside from the obvious ones we all know about--of doing chemo:
Reminder: According to the Oncotype Dx test, if one falls into the low or the high end of risk, it's found that patients will not/will respond and benefit from chemo respecitively. This discovery is great b/c for many years, people were getting chemo when it was unwarranted; now they are ruled out. What's still being studied, however, is what to do for intermediate scorers (in my case I fall within the low end of intermediate risk or 13% risk of recurrence w/in ten years).
The greatest cons --aside from the obvious ones we all know about--of doing chemo:
Option 1, lowers odds to 9%:
CMF, or the "lighter" formula, brings with it a 50% chance that I will go into menopause.
CMF, or the "lighter" formula, brings with it a 50% chance that I will go into menopause.
Option 2, lowers odds to 7%:
The "stronger" formula containing Taxotere + Cytoxan (for which studies have only been done FIVE years, not the full ten): Osteoporosis (already a potential side effect of the Tamoxphen that I will be on for five years once radiation begins); Chemobrain--patients report forgetfulness, trouble focusing and even mental fatigue as part of this phenomenon (I think may not be long term); nerve damage or neuropathy which can cause loss of sensation, tingling, numbness or painful sensations. Nerve damage is most often associated with the taxanes. May fix itself after a year.
The "stronger" formula containing Taxotere + Cytoxan (for which studies have only been done FIVE years, not the full ten): Osteoporosis (already a potential side effect of the Tamoxphen that I will be on for five years once radiation begins); Chemobrain--patients report forgetfulness, trouble focusing and even mental fatigue as part of this phenomenon (I think may not be long term); nerve damage or neuropathy which can cause loss of sensation, tingling, numbness or painful sensations. Nerve damage is most often associated with the taxanes. May fix itself after a year.
Regardless of whether or not I do chemo, I would of course be regularly tested for breast cancer with the help of bi-annual mammos. For cancer of the body, PET scans would be given. According to Dr. Malamud, they're good but not perfect tests, but it is what is available right now. Other than that, there are regular physicals and blood work done.
For the record, when I conveyed the possibility of my refusing chemo and the reasons why to Dr. Melamud this past Friday he said, "Liz, there is no right or wrong answer." It basically is about my being satisfied with a 13% chance of recurrence. He understands that if he'd said, Liz your risk is X% high, you really need to do this, then I would.
I know many of your have expressed that you'd do anything you could not to get cancer a second time. If I thought that this was a surefire way not to, I would be a lot more open to it. Trust me, when I have a bad headache or PMS, I take an Aleve. Because I know the pain will go away. When my body doesn't feel right, I go to the appropriate dr. Going for my baseline mammo at 40 is what got me here in the first place (I'd been asking my gyno for at least five years if I should be going yet). I believe in medicine and the medical technology that's helped me thus far. I also believe in doing what I can to care for my well being without it.
My mind is swinging like a pendulum. I say, I want to do the right thing. But what is it? God forbid I do have a recurrence in a few years, I realize I will have to live w/the choice I've made today. I think that if there was no option at all (just the rad+Tamox) and I was given a 13% of recurrence, I could really live with that number. But it's also highly probable that just a few years from now, there will be a lot more information available about various treatments. Even the study for the chemo being recommended to people who fall into my category would be that much more advanced in its findings.
I've changed my mind several times, so don't be convinced that this is my final answer. But for the past couple of days, what you've read is what I see in my crystal ball.
Next installment will be this Monday, Tues the latest. I will have either met with Dr. Malamud in person or given him my answer on the phone.
Also, for those concerned that I am waiting too long, I am not. I am definitely within the window of time that one may take after having his or her surgery.
I can't ask that you understand exactly from where I am coming. I can only ask that you don't shoot me down and just support me in my decision. And if you don't, I understand, that is your decision.
Thanks for reading....
E.
I know many of your have expressed that you'd do anything you could not to get cancer a second time. If I thought that this was a surefire way not to, I would be a lot more open to it. Trust me, when I have a bad headache or PMS, I take an Aleve. Because I know the pain will go away. When my body doesn't feel right, I go to the appropriate dr. Going for my baseline mammo at 40 is what got me here in the first place (I'd been asking my gyno for at least five years if I should be going yet). I believe in medicine and the medical technology that's helped me thus far. I also believe in doing what I can to care for my well being without it.
My mind is swinging like a pendulum. I say, I want to do the right thing. But what is it? God forbid I do have a recurrence in a few years, I realize I will have to live w/the choice I've made today. I think that if there was no option at all (just the rad+Tamox) and I was given a 13% of recurrence, I could really live with that number. But it's also highly probable that just a few years from now, there will be a lot more information available about various treatments. Even the study for the chemo being recommended to people who fall into my category would be that much more advanced in its findings.
I've changed my mind several times, so don't be convinced that this is my final answer. But for the past couple of days, what you've read is what I see in my crystal ball.
Next installment will be this Monday, Tues the latest. I will have either met with Dr. Malamud in person or given him my answer on the phone.
Also, for those concerned that I am waiting too long, I am not. I am definitely within the window of time that one may take after having his or her surgery.
I can't ask that you understand exactly from where I am coming. I can only ask that you don't shoot me down and just support me in my decision. And if you don't, I understand, that is your decision.
"We have to believe in free will. We've got no choice."
Isaac Bashevis Singer
Thanks for reading....
E.
The key thing is what your Doctor said, "there is no right or wrong answer." This is why you are having such a hard time. I do not want to influence your decision but the gambler in me can't help but look at the percentages. Is lowering your odds of recurrrence by 4 to 6 percent, with all of the potential side effects, worth it? God forbid, you did have a recurrence, would anyone actually be able to say that it was because you did not have chemo and not just that you fell into that slim 7 to 9 percent of patients? Alll of these things are impossible to know. Whichever you choose, will not be incorrect. You have the full love and support of your family and friends regardless.
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