Alison
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Alison found a lump during a self-breast exam. With “extremely dense breasts” that mammography can miss, she scheduled her annual thermogram, which lit up right at the site of the lump. Her primary care physician referred her to the cancer center. As an educator and advocate for people living with chronic disease, Alison knew full well that being in a state of fear was the worst place to be when making treatment decisions. Yet, there she was—immobilized in a “cold state of fear,” unable to advocate for herself or her values as one diagnostic test after another was done. Reflecting back, Alison says some of her providers were “very bullying.” For instance, she had deep misgivings about getting a punch biopsy and would have advocated for an excisional biopsy had she had more wherewithal at the time. The lumpectomy showed Stage 1 invasive ductile carcinoma; fortunately, chemotherapy was not recommended.
While waiting for her appointments with the cancer clinicians, Alison alleviated her fears by searching the PubMed and SEER databases for longitudinal evidence of radiation dosing for Stage 1 breast cancer, risk of secondary cancers, and standard treatment efficacy of reducing risk of recurrence. She found no convincing evidence that the dosage, which has increased over the years, would improve her outcomes. She was also concerned about radiation-induced, harder -to-treat, secondary cancers. Alison tried but was unable to engage her radiologist in a satisfactory dialog and ultimately declined radiation. Her oncologist advocated for an aromatase inhibitor, but Alison refused given her thinning bones, elevated risks for cardiovascular disease, and her unwillingness to tolerate muscle pain. Alison agreed to take tamoxifen but discontinued it when insomnia reduced her ability to function professionally or to enjoy her life. In her decision-making, Alison privileged quality of life over risk of recurrence. Had her kids been small, she might have made different decisions.
Alison has excellent health insurance with a nationally recognized healthcare system. But she found that they treat breast cancer by the book without considering what matters most to the person who has it. To compensate for this hole in whole-person treatment, Alison dove into research on the metabolic mechanisms that feed cancer and on what contributes to long and unexpected cancer remissions. She also sees a functional medical doctor who looks at root causes of disease. To that end, Alison aims to reduce inflammation with a low glycemic diet, supplements, regular exercise, acupuncture, meditation and visualization.
With the motto of “your doctor knows cancer, but he or she does not know you,” Alison underscores the value of people taking an active role in their treatment decision-making and their health. But being an “un-standard” patient in today’s medical care industry takes motivation, skill and resources—all of which she is privileged to have. To that end Alison wishes the healthcare systems would include real patient voices on their advisory boards and cover integrative health services for all patients. Social support is also important to Alison’s health and well-being. She came into this experience with a wonderful husband and supportive daughters and a wide circle of caring friends. For peer support, Alison searched for and finally found an online breast cancer support group that was a good fit for her.
Alison recognizes how fear makes it difficult to process information.
Alison recognizes how fear makes it difficult to process information.
But anyway, at the time, the problem is that you go to the place of cold fear. And I've been there before for various things. And I recognized it. And I was sort of, because I do education for patients in another health area, I just was sort of observing myself going through this. I'm like, I am in the place of cold fear now. And things have happened, like apparently, I had a packet of information they had given me. And I looked at the tech and I'm like, “what packet?” I had just zero recollection of even having received it. And I look in my bag and damn it, there is the big white envelope. No recollection at all, just zero. Because when we are in fight or flight mode and adrenaline is pumping. We are incapable of learning and I knew that.
Alison stopped taking tamoxifen because it disrupted her sleep.
Alison stopped taking tamoxifen because it disrupted her sleep.
I couldn't function the next day, I mean, I was exhausted. I'm like, “Nope, my quality of life is worth more than blocking estrogen in this way. So, I'm not taking tamoxifen.”
One thing that went through my head besides the panic is something to the effect of, ‘Oh crap, and then, what matters to me? What is it that I need to keep in my life through all of this?’ I'm like, “All right. I need to, you know what? I want physical and mental function, and I do not want pain. I am not willing to be in pain every day.”
My quality of life on a day-to-day basis is worth much, much more to me than my survival. And if my quality of life is crap, then I don't want to live. And, you know, my husband had a hard time hearing that. But I'm like, “Would you want me to be in pain every day?” and he's like, “No.” Well, I can't take these drugs then, because I can't risk them.
Alison was frustrated when she felt her doctors limited her choices.
Alison was frustrated when she felt her doctors limited her choices.
But you know, shared decision making? There's not a lot of decision support. I mean, the oncologist literally kind of came and he's like, “OK, aromatase inhibitors.” And I'm like, “Nope, not taking them.” He's like, “Well, tamoxifen. You know, you could take that instead.” And that was it. And there wasn't any discussion of, ‘well, you know, what happens if you don't tolerate any one of those? Well, it doesn't matter if you tolerate them, because if you don't take them you will die.’ And, you know, they didn't say that, but that's the rationale. You know? ‘You must do these things or you will die.’ And most people stay in the fear place, and the fear place – that frozen fear – it drives a lot of very bad personal healthcare decisions.
Alison felt unsupported by her clinic.
Alison felt unsupported by her clinic.
But I didn't know who to call, because the instructions were so terrible. And when you called [HEALTH SYSTEM], you know, you get their general number, and you don't get to a person. And that was very distressing, and that was like, I went on the Facebook group, and I'm like, “OK, this is happening and I don't think it's normal. What should I do?” And they're like, “You should call the number they give you.” I'm like, “I don't have a number.” So, I mean, things were done badly and I actually do need to give some feedback to [HEALTH SYSTEM] about, you know, here are things.
The other thing that went badly is this nurse coordinator. They don't give her a phone. She has no phone number. She will- she operates between three different clinics but she can only answer emails. And then it takes her two days to get back to you. I didn't really feel like there was any coordination going on at all.
Things need to change in the way that we take care of people with any chronic disease, and I view cancer as a chronic disease. We are not doing it right. We are not doing it optimally. We are not supporting women as they go through it. I mean, that nurse coordinator without a phone. What, even? What on earth was the point of that?
Alison exercises regularly and thinks of her body as a healing garden.
Alison exercises regularly and thinks of her body as a healing garden.
But it, it also comes out of this sort of idea that it’s an invading, evil thing that, you know, you have to burn and poison and cut out. And I look at it more like, my body is an ecosystem, like a garden.
And when you have a garden and your flowers aren't growing and the weeds are, there's something wrong with the soil. And there's something fundamentally that needs to be fixed. Something is not right. Something is out of balance. And so that's what I was trying to do, is look at my life and see, ‘Where in my life am I out of balance?’
Alison says women with breast cancer should rise up and be vocal about side effects.
Alison says women with breast cancer should rise up and be vocal about side effects.
If there's one thing that women with breast cancer should rise up about, it's like, why hasn't the treatment changed in 30 years? Why isn't it different? Why hasn't it changed since aromatase inhibitors came out? They have terrible side effects. Why did it take a decade for those terrible side effects to see the day of light? Women went in complaining of bone pain and joint pain and whatever. And it was like, “Well, you're getting older, honey. Oh, it's arthritis.” They were dismissed. You know? And then if they weren’t- if it wasn't that, it was like, “Which would you rather be?”
Weight gain? So what?
Yeah, right? “Weight gain, brain fog, which would you rather be? Dead or have a little joint pain?” And, they were made to feel bad. It's crazy.
This happens every day. All of the side effects are never tracked. People don't know where to report them. Patients may not even report them to doctors. And so you have to take everything with a grain of salt, and I'm apparently taking a lot of salt.
Alison had several difficult experiences with groups before she found one that was right for her.
Alison had several difficult experiences with groups before she found one that was right for her.
I tried a couple of groups and tried one group that was so alternative that, if you had had any conventional treatment, including surgery, you couldn't join. Well, I had had surgery before I joined the group. So that was okay. But, you know, when I actually mentioned the possibility of tamoxifen, which was a drug I was willing to try, they really just came down on me for that. And I questioned, you know, some of the things that people were doing and that was not okay. And you know, they claim to be really welcoming, whatever. And when I finally went back and pointed out that threatening people with, “Well, if you don't do it our way, your cancer will come back” is not actually welcoming, they kicked me out.
And then there was another group that was totally conventional, and if you mentioned anything alternative, they were like, “You are crazy.” I'm like, “No, this is not a good fit either.”
And then I found my way to a group that was the perfect balance.
Alison has identified and plans to raise issues with the leadership of one of the nation’s large health plans.
Alison has identified and plans to raise issues with the leadership of one of the nation’s large health plans.
And one of the things is, there is no way as a consumer of [HEALTHCARE ORGANIZATION] to give them input other than to call their customer service line, where there's a bunch of people answering the phone with scripts. And they say, “You get the standard email, ‘thank you for giving us your inform- ‘” and they send out surveys. And I could fill out their surveys but you know what? I would like a higher-level contact than that. I would like to talk to the CEO of [HEALTHCARE ORGANIZATION]. I would like to talk to whoever deals, you know, I don't know. I want to talk to the chief of oncology. I want them to understand that our experience isn't what it should be. I also would like [HEALTHCARE ORGANIZATION] to take a leadership role in kidney treatment. I don't think that I should be getting an oncologist who says, “I will only prescribe the standard of care.” [HEALTHCARE ORGANIZATION] should be creating the standard of care, not following it, you know? [HEALTHCARE ORGANIZATION] has a stake as a global capitated healthcare system, and one of the very few in this country. They have a stake in keeping us as healthy as possible. So, if there are things that we could have been doing to reduce the risk of cancer or to treat it better once it happens so that it doesn't come back 10 or 20 years down the road as, say, a sarcoma that's much more likely to kill you, then I feel like they should be doing those things. [HEALTHCARE ORGANIZATION] has the resources to do research that isn't influenced by pharma. I would like to see them do that. You know? So, I am very interested in getting to some [HEALTHCARE ORGANIZATION] leadership and giving them some feedback. And I think that I can give them some feedback that, maybe nobody else would have the nerve to give them. One of the benefits of working in health field for 30 years is that doctors do not intimidate me. I don't think they're Gods.
Alison advises others to be led by their own values.
Alison advises others to be led by their own values.
Figure out what matters to you. This is the most important step that you can take when you first find out that this is happening. What matters to you? Use that as your frame to guide all your decisions. If what matters to you is being around for your grandchildren and your children are three and four, you may make different choices than I make as somebody whose children are grown and may not have grandchildren. And, you know, I am living for me and I am living, and you know, for my husband and the day, and whatever. Know what matters to you. Everybody walks a different path, even with the same disease, because our priorities are different. Our choices should be different, they should reflect our priorities. Too often they don't and people get treatments that don't fit what they want.
Alison thinks it’s important for institutions to constantly learn and improve.
Alison thinks it’s important for institutions to constantly learn and improve.
My number one piece of advice was put together an advisory board of people who have dealt with the condition and ask them what their experience was in your institution. I think I'm getting the best healthcare in the US. I think it would be very difficult to do better. Are they perfect? Hell no. There's plenty of room for improvement.
Alison wants clinicians to ask patients “what matters to you?”
Alison wants clinicians to ask patients “what matters to you?”
I absolutely think that every clinician in every field needs to get into the habit of asking, “What matters to you?” And then framing their answers in terms of, “Okay, well, if this is what's important to you, then I could see why maybe you wouldn't want to take this drug. Let's see if there's an alternative. Well, there's this other drug. It's somewhat less likely to take it. Maybe could try it, and you could see if you tolerate it. Or, maybe we could just start a lower dose.” Being treated by clinicians as an individual rather than as a set of symptoms was important to the people we interviewed. Alison valued being able to make her own treatment choices instead of being told what to do. What you're supposed to do is you're supposed to either choose mastectomy without radiation or lumpectomy with radiation. And, you know, those are your choices. And I'm like, “Okay, I'm choosing lumpectomy and I'm choosing no radiation.” And what I did appreciate is that I did not get any sort of pushback about, “You must do this, that, or the other.” Which is good because I would have pushed back and said “Make me."
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I just kind of took the reins and made the decisions. A lot of people just, and I’ve kind of challenged people on some of the Facebook groups. They're like, “Well I have to have radiation.” And I'm like, “Have to?” And then she's kind of like, “Okay, because I'm choosing to.” But it's like, that's an important, you know, it may be that if that's a choice you make that you go through it better if you feel that you have the autonomy of choosing it, not being told that this is a thing you have to do.
Alison values being able to make her own treatment choices instead of being told what to do.
Alison values being able to make her own treatment choices instead of being told what to do.
What you're supposed to do is you're supposed to either choose a mastectomy without radiation or lumpectomy with radiation. And, you know, those are your choices. And I'm like, “Okay, I'm choosing lumpectomy, and I'm choosing no radiation.” And what I did appreciate is that I did not get any sort of pushback about, “you must do this, that, or the other.” Which is good, because I would have pushed back and said “make me.”
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I just kind of took the reins and made the decisions. A lot of people just, and I've kind of challenged people on some of the Facebook groups. They're like, “Well, I have to have radiation.” And I'm like, “Have to?” And then she's kind of like, “Okay, because I'm choosing to.” But that's important, you know, maybe that if that's a choice you make that you go through it better if you feel that you have the autonomy of choosing it, not being told that this is a thing you have to do.