One thing I wouldn’t have expected about having cancer (or pre-cancer) is the number of fundraisers and non-profit volunteers who have suddenly come into my life. I have my “landline” attached to an “answering machine,” and normally I have the volume of the latter turned down to zero and the ringer of the former turned off, and so I learn that someone is trying to reach me when I see the little answering machine light blinking, which doesn’t take long in a studio apartment.
Lately, awaiting return calls from doctors and office assistants and the nurse educator at SFMC—that’s a wonderful resource and one I have made liberal use of—I’ve had the phone ringer on and now am learning just how many fundraisers have been longing to hear my voice. The ratio of unwanted to wanted calls is about one to one, and it has been annoying on some days. I have said to more than one caller, “I have cancer and am waiting for a call from a doctor and can’t talk to you,” a blatant attempt to induce guilt and get off the phone quickly, though one person was so extremely sweet, saying she would pray for me and so forth, that I ended up guilt stricken myself, even though what I’d said was true.
I happened to visit my dentist the day after my diagnosis—the odds that I’ll see a teeth-related professional on any given day are not bad—and of course told her and therefore her assistant what had happened, because I generally tell everyone everything, and the assistant’s eyes grew huge with dismay, and I left feeling kind of bad about it. That was more than she was bargaining for when she arrived at work that day. (I apologized the next time I saw her, and she said very kindly that it was good that I had told them, because then she could include me in her prayers, which she said she had done. That was awfully nice of her! I’m not a praying man myself, but prayers are good wishes and more than welcome.)
Today I had a follow-up visit with surgeon Dr. P. Following the lead of his colleague in radiation oncology, he had also adjusted his numbers a little for the worse, now saying that tamoxifen would reduce recurrence risk by half, whereas before surgery he had said one third.
He thinks that with the treatment already completed, the risk of the DCIS recurring is 4% over 10 years, very much the same thing Dr. L. said. When it comes to a whole new breast cancer, he thinks the risk is .6% per year, whereas if I hadn’t had cancer, it would be more like .1-.2% per year. That is, it appears my risk of a whole new cancer is about 6% over ten years and therefore actually higher than the risk of a recurrence!
I asked if I could have my ovaries removed (because my DCIS was estrogen-positive, meaning my own estrogen was feeding it) and he said yes, that is indeed an option and that he had just had another patient do this.
I’d read the procedure and pathology reports carefully, looked up every word online and created a glossary—my DCIS document, which has a nice table of contents, is now 36 pages long—but there were a few terms I was unable to get a handle on, so I asked him about those.
He said I will have a mammogram of just my left breast six months after surgery, and another of both breasts at 12 months, and then it will be back to regular yearly mammograms. This is a good opportunity to re-mention that my Stage 0 breast cancer, ductal carcinoma in situ, was only found via mammogram. There was no lump—yet. While it's possible to have a palpable lump that is all DCIS, it's much more likely that if there's a lump, the cancer is no longer Stage 0 and there is the possibility that it has gotten to the lymph nodes or metastasized to other parts of body, at which point the prognosis is much less good and the treatment correspondingly more miserable.
There are ways for those without insurance to get yearly clinical breast exams and mammograms. Start by calling the health department in your city or contacting a nearby hospital.
Dr. P. gave me the name of a medical oncologist he said is “evenhanded,” and when I asked for another name just in case, he warned me that the second person is much more aggressive and would certainly push me to take tamoxifen.
Dr. P. said my risk of recurrence is low enough that it would not be a foolish choice not to take it, but it’s up to me and it depends on how comfortable I am living with the results of my decisions: if I’m going to be up at night worrying about whether I should have taken it or not, I should take it. He said if I take it and have a recurrence, I will know that at least I did everything I could. On the other hand, if I take it and don’t have a recurrence, I might feel that I subjected my body to it needlessly, and there will be no way to know for sure. Finally, if I don’t take it and have a recurrence, will I beat myself over it?
He said often people don’t like to take tamoxifen because of the side effects, not so much the small risk of blood clots or uterine cancer, but the menopause-like symptoms. He said that if I were to go ahead, I might also want to take low-dose aspirin or a low dose of a blood thinner to protect against blood clots, but then you’re taking a second medication to manage the effects of the first.
I’ve been posting about this decision on breastcancer.org and reading what they have to say there. I’m torn, but I’m thinking the way to go is not to take tamoxifen and also not to have a recurrence.
Lately, awaiting return calls from doctors and office assistants and the nurse educator at SFMC—that’s a wonderful resource and one I have made liberal use of—I’ve had the phone ringer on and now am learning just how many fundraisers have been longing to hear my voice. The ratio of unwanted to wanted calls is about one to one, and it has been annoying on some days. I have said to more than one caller, “I have cancer and am waiting for a call from a doctor and can’t talk to you,” a blatant attempt to induce guilt and get off the phone quickly, though one person was so extremely sweet, saying she would pray for me and so forth, that I ended up guilt stricken myself, even though what I’d said was true.
I happened to visit my dentist the day after my diagnosis—the odds that I’ll see a teeth-related professional on any given day are not bad—and of course told her and therefore her assistant what had happened, because I generally tell everyone everything, and the assistant’s eyes grew huge with dismay, and I left feeling kind of bad about it. That was more than she was bargaining for when she arrived at work that day. (I apologized the next time I saw her, and she said very kindly that it was good that I had told them, because then she could include me in her prayers, which she said she had done. That was awfully nice of her! I’m not a praying man myself, but prayers are good wishes and more than welcome.)
Today I had a follow-up visit with surgeon Dr. P. Following the lead of his colleague in radiation oncology, he had also adjusted his numbers a little for the worse, now saying that tamoxifen would reduce recurrence risk by half, whereas before surgery he had said one third.
He thinks that with the treatment already completed, the risk of the DCIS recurring is 4% over 10 years, very much the same thing Dr. L. said. When it comes to a whole new breast cancer, he thinks the risk is .6% per year, whereas if I hadn’t had cancer, it would be more like .1-.2% per year. That is, it appears my risk of a whole new cancer is about 6% over ten years and therefore actually higher than the risk of a recurrence!
I asked if I could have my ovaries removed (because my DCIS was estrogen-positive, meaning my own estrogen was feeding it) and he said yes, that is indeed an option and that he had just had another patient do this.
I’d read the procedure and pathology reports carefully, looked up every word online and created a glossary—my DCIS document, which has a nice table of contents, is now 36 pages long—but there were a few terms I was unable to get a handle on, so I asked him about those.
He said I will have a mammogram of just my left breast six months after surgery, and another of both breasts at 12 months, and then it will be back to regular yearly mammograms. This is a good opportunity to re-mention that my Stage 0 breast cancer, ductal carcinoma in situ, was only found via mammogram. There was no lump—yet. While it's possible to have a palpable lump that is all DCIS, it's much more likely that if there's a lump, the cancer is no longer Stage 0 and there is the possibility that it has gotten to the lymph nodes or metastasized to other parts of body, at which point the prognosis is much less good and the treatment correspondingly more miserable.
There are ways for those without insurance to get yearly clinical breast exams and mammograms. Start by calling the health department in your city or contacting a nearby hospital.
Dr. P. gave me the name of a medical oncologist he said is “evenhanded,” and when I asked for another name just in case, he warned me that the second person is much more aggressive and would certainly push me to take tamoxifen.
Dr. P. said my risk of recurrence is low enough that it would not be a foolish choice not to take it, but it’s up to me and it depends on how comfortable I am living with the results of my decisions: if I’m going to be up at night worrying about whether I should have taken it or not, I should take it. He said if I take it and have a recurrence, I will know that at least I did everything I could. On the other hand, if I take it and don’t have a recurrence, I might feel that I subjected my body to it needlessly, and there will be no way to know for sure. Finally, if I don’t take it and have a recurrence, will I beat myself over it?
He said often people don’t like to take tamoxifen because of the side effects, not so much the small risk of blood clots or uterine cancer, but the menopause-like symptoms. He said that if I were to go ahead, I might also want to take low-dose aspirin or a low dose of a blood thinner to protect against blood clots, but then you’re taking a second medication to manage the effects of the first.
I’ve been posting about this decision on breastcancer.org and reading what they have to say there. I’m torn, but I’m thinking the way to go is not to take tamoxifen and also not to have a recurrence.
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