It was time to make this decision, finally. I had the surgery to remove the second cancer (recurrence or new one, I will probably never know) in January, and it's now October: long enough to make up my mind.
"Go with your gut!" people say, but how can I have a gut feeling when I'm flying blind? I tell you, if I could have an iron-clad guarantee that I would not die from another recurrence, I would not have the surgery; I hate the idea of having no breast there at all (and the success of reconstruction is iffy, says the plastic surgeon, thanks to previous radiation). And not least, I hate the very idea of surgery itself.
But though metastasis is a small risk (according to my surgeon -- everyone else is deliberately vague and stresses that it's impossible to estimate), even a small reduction in the possibility of dying from this is beginning to sound better. The turning point came when I went to an oncologist outside my hospital, someone recommended by a friend of a colleague. He didn't examine me, just spent an hour going over every detail of my records to draw the big picture. Much of this I already knew by heart, but he said one thing that stung: "They threw everything at you the first time, and it didn't work." Therefore, he implied, it's more likely to come back, for reasons we don't know. And since the last time it didn't show up on imaging, that could happen again; yearly mammos and MRIs may not help. He didn't ask this, but I asked myself: do I want to go through this again?
No, I don't. So I think I've decided to get the surgery, I hope in January so I can finish out the semester and also finish my book, now in the last stages of revision. I haven't yet informed my doctors of this, and I feel strangely reluctant to. Some people know, and I've had a bad reaction to telling them, as if I don't have to face the decision if no one knows about it. I'm still a bit in denial in other words, but that probably just means I need more time to accustom myself to the thought of it.
I'm both relieved and scared to have decided.
Friday, October 14, 2011
Monday, August 22, 2011
Back Again
Well, it's been a long time, hasn't it? I haven't thought about this question of the mastectomy very much since my last post in May, actually...and when friends have asked what I decided, I find myself saying "I THINK I will have the mastectomy, but not till January."'
Why January? Because I want to finish the book I'm writing, and I want to teach my classes this fall. Then, if I do the surgery, I can take the spring to recover, devoting myself to it like a full-time job.
This month I saw the two important doctors: the oncologist, Dr. L., and the breast surgeon, Dr. C, who I have the tiniest crush on (there's something about the combination of tall and calm that I'm drawn to). And here's where I'm left: The oncologist still thinks I should get the mastectomy, and the surgeon, whom I saw today, still argues just the opposite.
Her reasons:
1. The Padgett's was a recurrence in the same breast.
2. I can't be radiated, because I have already been radiated there.
3. There was a close margin, .5 mm.
Here are Dr. C's reasons:
1. Yes, it was a recurrence, but the amount of DCIS was tiny, "microscopic." Dr. L. had mentioned this in passing, but didn't give it much importance.
2. Good and bad margins are not all that reliable; 1 out of 3 times, there is cancer where there's a clean margin, and no cancer where there's a close one. He seems confident that I'm "low-risk".
3. For cases that are low-risk, there is no evidence that mastectomy will be life-saving. The DCIS grows slowly and can be caught on yearly mammograms.
4. He intimated that the surgical result will not be pretty, because the tissue has been radiated, so the reconstruction will likely not look very good. Sigh.
Of course looks is not my first priority -- living is. But I could feel that Reason #4 was not something I could easily discount either.
We agreed that I would get a mammo and MRI (ugh) in January, and see him again. By then I should know what I want to do. Except I don't know how I'm going to make this decision any better than I can make it now, and I don't feel equipped to make it now, unless a little scroll descends from heaven and tells me EXACTLY HOW MUCH (or even approximately how much) I'm risking my damn life by not getting the surgery.
Why January? Because I want to finish the book I'm writing, and I want to teach my classes this fall. Then, if I do the surgery, I can take the spring to recover, devoting myself to it like a full-time job.
This month I saw the two important doctors: the oncologist, Dr. L., and the breast surgeon, Dr. C, who I have the tiniest crush on (there's something about the combination of tall and calm that I'm drawn to). And here's where I'm left: The oncologist still thinks I should get the mastectomy, and the surgeon, whom I saw today, still argues just the opposite.
Her reasons:
1. The Padgett's was a recurrence in the same breast.
2. I can't be radiated, because I have already been radiated there.
3. There was a close margin, .5 mm.
Here are Dr. C's reasons:
1. Yes, it was a recurrence, but the amount of DCIS was tiny, "microscopic." Dr. L. had mentioned this in passing, but didn't give it much importance.
2. Good and bad margins are not all that reliable; 1 out of 3 times, there is cancer where there's a clean margin, and no cancer where there's a close one. He seems confident that I'm "low-risk".
3. For cases that are low-risk, there is no evidence that mastectomy will be life-saving. The DCIS grows slowly and can be caught on yearly mammograms.
4. He intimated that the surgical result will not be pretty, because the tissue has been radiated, so the reconstruction will likely not look very good. Sigh.
Of course looks is not my first priority -- living is. But I could feel that Reason #4 was not something I could easily discount either.
We agreed that I would get a mammo and MRI (ugh) in January, and see him again. By then I should know what I want to do. Except I don't know how I'm going to make this decision any better than I can make it now, and I don't feel equipped to make it now, unless a little scroll descends from heaven and tells me EXACTLY HOW MUCH (or even approximately how much) I'm risking my damn life by not getting the surgery.
Tuesday, May 24, 2011
I Visit the Plastic Surgeon
Yes, it's been a long time...because nothing has happened between the last post and now that's relevant to this awful decision I have to make: to have or not to have a mastectomy. Probably I've lost all readers and I'm writing this for myself, but here goes.
I went today to consult with the plastic surgeon who would do the reconstruction if I do have the mastectomy. It was disappointing in that the choices are a 6-10 hour, very invasive surgery (TRAM flap, which means taking muscle from the stomach) or an implant, which though less invasive, has a higher than usual chance of not working well or maybe at all, due to my breast having been radiated -- I think he said 50%, though he also said that's just a guess, as usual. Apparently radiated tissue can't be counted on to support the implant, so there could be complications that would require either re-operating or removing it altogether.
I'm not a fan of tons of anesthesia and pain, so a big No to the muscle flap surgery for sure -- but I was hoping for better news for the implant. Also, he said there's no way an implant will look even as good as what I have now, and it will probably match the other breast in size no better or possibly even less.
I don't know if this will affect my ultimate decision except it makes it even more difficult. Ugh.
The next step is an appointment on July 5th with my oncologist -- I want to ask her about the timing, since I'd prefer to do the surgery in January, if possible.
"It's just a boob," said my daughter, who wants me to have the mastectomy. I should repeat that like a mantra: just a boob, just a boob.
I went today to consult with the plastic surgeon who would do the reconstruction if I do have the mastectomy. It was disappointing in that the choices are a 6-10 hour, very invasive surgery (TRAM flap, which means taking muscle from the stomach) or an implant, which though less invasive, has a higher than usual chance of not working well or maybe at all, due to my breast having been radiated -- I think he said 50%, though he also said that's just a guess, as usual. Apparently radiated tissue can't be counted on to support the implant, so there could be complications that would require either re-operating or removing it altogether.
I'm not a fan of tons of anesthesia and pain, so a big No to the muscle flap surgery for sure -- but I was hoping for better news for the implant. Also, he said there's no way an implant will look even as good as what I have now, and it will probably match the other breast in size no better or possibly even less.
I don't know if this will affect my ultimate decision except it makes it even more difficult. Ugh.
The next step is an appointment on July 5th with my oncologist -- I want to ask her about the timing, since I'd prefer to do the surgery in January, if possible.
"It's just a boob," said my daughter, who wants me to have the mastectomy. I should repeat that like a mantra: just a boob, just a boob.
Tuesday, April 5, 2011
I Advance a Step
If "advance" means getting closer to a decision about mastectomy, I think (note hesitant quality of declarative sentence) I've progressed a bit.
Yesterday I had my revisit with Dr. L., the oncologist. I told her I need her help deciding what to do, and described my meeting with Dr. M, the radiologist who advocated so vehemently for mastectomy. I was going to ask Dr. L. for more facts, but she said "it would be hard to say" what my chances of recurrence and survival would be with or without mastectomy.
Before I could answer, she waived it aside: "I agree with Dr. M., " she said in her sweet, calm voice (so unlike Dr. M.'s more forceful tone), "The close margins...the inability to have radiation...the fact that this is a recurrence in the same breast -- if it were me, I'd have a mastectomy."
I guess that did it. But what about Dr. C., my surgeon, and his completely opposite opinion? It seems she had emailed him after getting the news about no radiation. "He's very confident that you'd be fine as is," she said, which was not news, "but I disagree. Even if you survived another recurrence, you don't want a recurrence, period. You wouldn't know if it had metastasized."
There you go. A small chance, but deadly if you get unlucky. And I have not been very lucky, though so grateful to still be here. So...I guess I will be doing it. More on that another time.
Yesterday I had my revisit with Dr. L., the oncologist. I told her I need her help deciding what to do, and described my meeting with Dr. M, the radiologist who advocated so vehemently for mastectomy. I was going to ask Dr. L. for more facts, but she said "it would be hard to say" what my chances of recurrence and survival would be with or without mastectomy.
Before I could answer, she waived it aside: "I agree with Dr. M., " she said in her sweet, calm voice (so unlike Dr. M.'s more forceful tone), "The close margins...the inability to have radiation...the fact that this is a recurrence in the same breast -- if it were me, I'd have a mastectomy."
I guess that did it. But what about Dr. C., my surgeon, and his completely opposite opinion? It seems she had emailed him after getting the news about no radiation. "He's very confident that you'd be fine as is," she said, which was not news, "but I disagree. Even if you survived another recurrence, you don't want a recurrence, period. You wouldn't know if it had metastasized."
There you go. A small chance, but deadly if you get unlucky. And I have not been very lucky, though so grateful to still be here. So...I guess I will be doing it. More on that another time.
Saturday, April 2, 2011
Square 2.5
I have another appointment with Dr. L, the oncologist, on Monday. My hope is to advance the decision-making process, which I'm finding increasingly awful, by tossing pointed questions at her. Because my friends are now lining up on the mastectomy question, and let me tell you, I could form two good teams. So that not only hasn't helped, it's increased my anxiety and stress about it all.
Every time I think, Okay, it will be fine as it is, someone says, "You're kidding me, you're going to risk your life, even a little bit, for that little old breast?"
Then I think, That's absurd, of course I won't. Better have the dreadful surgeries and get it over with. Then someone else says, "The surgeon wouldn't have said it was safe if he didn't think it was. Don't trust the ones who tell you to run to the most extreme measure. Surgery is hell you don't want to put yourself through for very little risk."
And I'm back where I was. So we'll see if Dr. L can manage to shed more light on Monday.
Every time I think, Okay, it will be fine as it is, someone says, "You're kidding me, you're going to risk your life, even a little bit, for that little old breast?"
Then I think, That's absurd, of course I won't. Better have the dreadful surgeries and get it over with. Then someone else says, "The surgeon wouldn't have said it was safe if he didn't think it was. Don't trust the ones who tell you to run to the most extreme measure. Surgery is hell you don't want to put yourself through for very little risk."
And I'm back where I was. So we'll see if Dr. L can manage to shed more light on Monday.
Friday, March 18, 2011
Square Two
Ah, the long-anticipated visit to the radiologist today. The idea was to see if my breast-conserving surgery could be given a radiology boost to make another recurrence less likely down the line. As Dr. C., my dashing surgeon, had explained, you usually can't re-radiate breast tissue: it tends to shrink or collapse or do something dreadful under the rays a second time. But with new techniques, it might be possible to do "targeted" radiation and get away with it. A study is underway at Sloan-Kettering, and he thought I might be part of it.
I was sort of hoping not to do it, actually: the idea of trooping an hour each way to the hospital for lengthy periods of time is pretty unthinkable right now. But then, who wouldn't want a boost to one's chances?
This idea was pretty much crushed when the radiologist Dr. M., who is doing the study of re-radiation I would have been part of, announced on meeting me that she'd just reviewed my chart and had news: their "protocol" says they can't radiate after Paget's Disease. She told me why, but to tell the truth, I forget, and I had the impression she wasn't sure herself. It had something to do with the skin, but all I remember is that she remarked that the skin on my breast above the scar was quite good: soft, with a smooth appearance. What a strange thing is the mind, or at least this one: I'm such a compliment hound that I didn't retain the reason for not radiating, but do remember the random and totally irrelevant praise for the surface of the top half of my mutilated breast! Really astonishing.
Then came the bad part. She wanted me to know that since I won't have radiation, and the DCIS was close to the margins of the excision in two spots, I really should have a mastectomy, with or without reconstructive surgery. Dr. C. had warned me that she would say that. But here's the thing: this is what Dr. L, my oncologist said too (the "gold standard"). I asked for hard statistics: she said that would be difficult to come up with. So I asked my Big Question: how come Dr. C. says there is no survival advantage to mastectomy, when there's a greater risk of recurrence? This is what's confusing to me.
Her answer: My close margin indicates there could be DCIS left in my breast: Dr. C. said 10-20% chance of recurrence. DCIS, left untreated, will turn into invasive cancer half the time. So take the recurrence statistic and slice it by one half, because a recurrence of DCIS isn't a big deal. Then take the half that is invasive and say you most likely will catch it early and treat it with the usual stuff (mastectomy and chemo, if necessary). That will grab most of it. But a very small percentage of that will not be cured by the treatments and metastasize, threatening life, killing you sooner rather than later. That's the risk: a percentage of a percentage of a percentage. It's probably life-threatening to only a few, so statistically it doesn't show up when compared to a recurrence after mastectomy.
What's disturbing is that the pro-mastectomy gang clearly feel: why are you hesitating for a breast that's "asymmetrical in size" (as Dr. M. put it) and doesn't even have a nipple? Whereas Dr. C., the surgeon, spins it the other way: why not hold onto the breast and play such good odds?
Now what? I've progressed past Square One = Know Your Pathology, but I feel like I'm solidly back in Square Two = What To Do.
I was sort of hoping not to do it, actually: the idea of trooping an hour each way to the hospital for lengthy periods of time is pretty unthinkable right now. But then, who wouldn't want a boost to one's chances?
This idea was pretty much crushed when the radiologist Dr. M., who is doing the study of re-radiation I would have been part of, announced on meeting me that she'd just reviewed my chart and had news: their "protocol" says they can't radiate after Paget's Disease. She told me why, but to tell the truth, I forget, and I had the impression she wasn't sure herself. It had something to do with the skin, but all I remember is that she remarked that the skin on my breast above the scar was quite good: soft, with a smooth appearance. What a strange thing is the mind, or at least this one: I'm such a compliment hound that I didn't retain the reason for not radiating, but do remember the random and totally irrelevant praise for the surface of the top half of my mutilated breast! Really astonishing.
Then came the bad part. She wanted me to know that since I won't have radiation, and the DCIS was close to the margins of the excision in two spots, I really should have a mastectomy, with or without reconstructive surgery. Dr. C. had warned me that she would say that. But here's the thing: this is what Dr. L, my oncologist said too (the "gold standard"). I asked for hard statistics: she said that would be difficult to come up with. So I asked my Big Question: how come Dr. C. says there is no survival advantage to mastectomy, when there's a greater risk of recurrence? This is what's confusing to me.
Her answer: My close margin indicates there could be DCIS left in my breast: Dr. C. said 10-20% chance of recurrence. DCIS, left untreated, will turn into invasive cancer half the time. So take the recurrence statistic and slice it by one half, because a recurrence of DCIS isn't a big deal. Then take the half that is invasive and say you most likely will catch it early and treat it with the usual stuff (mastectomy and chemo, if necessary). That will grab most of it. But a very small percentage of that will not be cured by the treatments and metastasize, threatening life, killing you sooner rather than later. That's the risk: a percentage of a percentage of a percentage. It's probably life-threatening to only a few, so statistically it doesn't show up when compared to a recurrence after mastectomy.
What's disturbing is that the pro-mastectomy gang clearly feel: why are you hesitating for a breast that's "asymmetrical in size" (as Dr. M. put it) and doesn't even have a nipple? Whereas Dr. C., the surgeon, spins it the other way: why not hold onto the breast and play such good odds?
Now what? I've progressed past Square One = Know Your Pathology, but I feel like I'm solidly back in Square Two = What To Do.
Monday, March 14, 2011
One Order of Gratitude, Please
I sharply remember a moment soon after the diagnosis when I confronted the brutal possibility that this new cancer could be a death sentence for me. It was one of those Lifetime Movie Moments, when you go all Elizabeth Kubler-Ross and bargain : I'll do anything to live. If You (God, fate, the Universe, the cancer itself, those teenage boys in outer space who are using me as their avatar in their amusing video game) will only let me live, I will be grateful... So grateful that I will have a proper sense of perspective on all complaints about the woes of my life, the annoyances and sad absences and worries, the relatively minor discomforts of other ailments and such.
This seemed like such an epiphany that after the tests and pathology report came back with news so good that many patients would rejoice to hear it, I said to my friend, "You know, everyone should go through the interesting experience of thinking your life may be over." He kind of snorted, so I added, "That is, if it turns out it's not." This may be true. It certainly seemed true for a while.
Because here I am, 10 weeks or so past that moment of recognition about the larger perspective that cancer can bring, and I can tell you in all honesty that I cannot hold onto it. It's slipped out of my fingers like smoke and disappeared into the overwhelming desire -- need -- for the mind to orient itself to the normal and everyday. The truth is I am not any more grateful than I used to be, except in small moments when I shake myself and scold that I have got to stop bitching about the usual stuff (as on Valentine's Day, when being no one's Valentine seems particularly, if ridiculously, oppressive). I do not revel in the incredible excitement of just being alive, damn it...except for other small moments, when I actually do.
So much for all those books and movies and guests on talk shows telling us that they "now realize" something-or-other, which "saved" their miserable lives, and how that empowered them to never do Whatever again, which explains why they are So Happy now. I am here to say it has not worked for me. And I can't say I much want to try it again so I can get it right next time.
This seemed like such an epiphany that after the tests and pathology report came back with news so good that many patients would rejoice to hear it, I said to my friend, "You know, everyone should go through the interesting experience of thinking your life may be over." He kind of snorted, so I added, "That is, if it turns out it's not." This may be true. It certainly seemed true for a while.
Because here I am, 10 weeks or so past that moment of recognition about the larger perspective that cancer can bring, and I can tell you in all honesty that I cannot hold onto it. It's slipped out of my fingers like smoke and disappeared into the overwhelming desire -- need -- for the mind to orient itself to the normal and everyday. The truth is I am not any more grateful than I used to be, except in small moments when I shake myself and scold that I have got to stop bitching about the usual stuff (as on Valentine's Day, when being no one's Valentine seems particularly, if ridiculously, oppressive). I do not revel in the incredible excitement of just being alive, damn it...except for other small moments, when I actually do.
So much for all those books and movies and guests on talk shows telling us that they "now realize" something-or-other, which "saved" their miserable lives, and how that empowered them to never do Whatever again, which explains why they are So Happy now. I am here to say it has not worked for me. And I can't say I much want to try it again so I can get it right next time.
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