Making Decisions

I think everything's on a timeline. So, you know, the doctors, the surgeons and everybody needs to know what your plan is. And, so, they kind of just throw some information at you and say, "Make a decision." Because they want to be respectful of you and how you feel and. But at the same time, they want to make help you make an informed decision. So, there were decisions being made the whole time. You know what I mean? Everything you do is a decision. Like, should I get a second opinion? You know what I mean? Which was a big decision that was made. The second breast, you know, being removed, that was a big decision. To me, everything is just, it's like life or death. So, it's, all the decisions are kind of like, is this, does this really matter?

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So there, were decisions that were made for me and decisions that I got to make on my own. And they did a good job of trying to make me feel like I had more choices, probably, than I really did. But that's like the important thing, like you said earlier, is either having an advocate for you or being your own advocate and saying, you know, a second opinion. That's critical. That's a big decision. Maybe life-altering. So that's probably the biggest decision.

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.

Or even the options that are presented for surgeries, of people even assuming that, you know--like, for example, I actually came up with an option that was not presented to me for breast surgery, the plastic surgery side of things because there are two breast surgeons, one was oncology, one was a plastic surgeon. So, I had a partial mastectomy. Basically, I lost about a third of the tissue. So things are going to be uneven. And I was presented with the option of, well, you can, like do nothing, of course, and leave things as is. You could have reconstructive surgery, basically like add to the breast that was having the tumor removed. You know, like. And, anyway, there are a few different versions of these things. And I was like, “well, why couldn't we just take away tissue from my right breast to even things out?” And that's where it's always a very personal decision. And I really appreciated that the surgeon was like you know, “whatever you decide is going to be the right choice.” And that felt like a really amazing answer to hear. But, yeah, he was kind of like, “yeah, we can try this.” And of course, there were some risks about that. That's where I've also have pressed for some solutions that are not necessarily the ones that are given to people always at risk of like losing sensitivity or things like that. But, I mean, that's the option that I went with. And it was not an option that was initially presented to me.

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.

And that is where I started the treatment. I know that it was very difficult to decide whether to start with surgery or chemotherapy. It was very difficult for me to make a decision. But the doctors always, always supported me with everything. They gave me psychologists. People who talked with me so I could make a decision—that is what I should do. But at the moment where—I remember that I even had the date for chemotherapies, and I canceled it because I was indecisive. I was still indecisive on what to do first, surgery or chemotherapy. I remember that I did cancel it. I couldn't start chemotherapies, but I wanted the surgery first and the chemotherapies after.

Y ahí empezó el, el tratamiento. Yo sé, me costó mucho decidir si primero lacirugía, las uimioterapias. Fue muy difícil para mí tomar una decisión. Pero los doctores siempre, siempre me apoyaron en todo. Me pusieron psicólogos, personas que hablaron conmigo para que yo pudiera tomar una decisión, qué es lo que debo de hacer. Pero en el momento en que--yo me acuerdo que ya hasta tenía la fecha para las quimioterapias y que lo cancelé porque estaba indecisa. Yo todavía estaba indecisa. ¿Qué hacer primero? Si la cirugía, las quimioterapias. Yo recuerdo que sí lo cancelé. No pude empezar las quimioterapias. Pero yo quise primero la cirugía y después las quimioterapias.

And I did decide to go with a clinical trial. Which, you know, that was kind of interesting, too, because I really thought I would be much more involved in the decision making, but I, I really couldn't. I, I just couldn't deal with it. And so luckily, my husband, I said, "Research this clinical trial. Tell me what you think." Because I cannot make a decision.

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By that point, we'd had, had enough conversations, and I just said, "What can I do, but trust you?" You know. So, we did it because she said, "You take two drugs at once. You hit it really hard right away. It's really intense but you are done in four rounds." And so, I did it. And I just look back and think of that as an interesting piece, because I couldn't—I now get why people just can't make any decisions. They can't function. And you feel like, "Wow," you know, "Don't you want to participate in your care," and it's like, well, you're not in any emotional state to do it. At least I wasn't.

I went with the doctor for them to assess, and we talked, and planned the surgery. That was a difficult situation for me because the doctor told me that I had to make the decision. They said, you know that you have the genes. You have to make the decision if you remove only the lump, the entire breast, or many people opt to remove both breasts, because they don’t want to come back in six months, or in the years after for the same thing. It was a very, very difficult moment for me. I went alone that time with the doctor and I didn’t know what to do. And they told me, I told them, well, “You have more experience. Tell me what can I do? What do I do? What is best for me?” She told me, “I can’t make the decision for you. I can’t tell you anything about this.” She said, “the decision needs to be made by you, only you.”

Fui con la doctora queme asesorara y hablamos, y planeamos la cirugía. Ahí fue una situación muy difícil para mí, porque la doctora me dijo que yo tenía que tomar la decisión. Dice, ya sabes que tienes los genes. Tú tienes que tomar la decisión si te quitas solamente la bolita, todo el seno o mucha gente opta por quitarse los dos, porque no quiere regresar a los seis meses o a los años después por lo mismo. Fue un momento muy, muy difícil para mí. Yo fui sola esa vez con la doctora y yo no sabía qué hacer. Y me dijo, yo le dije, bueno, usted que ya tiene más experiencia, dígame, ¿qué puedo hacer yo? ¿Qué hago? ¿Qué es lo mejor para mí? Ella me dijo, yo no puedo tomar la decisión por ti. Yo no te puedo decir nada de esto. Dice, “la decisión la tienes que tomar tú, solamente tú.”

Chemo was recommended by two different oncologists. And because the cancer was a fast-growing, aggressive cancer, I was all ready to do whatever was suggested. I figured they were the experts, and I was not. I know other women who have taken a much more proactive approach and have made different choices. I’m not advocating necessarily for chemo. It's tough. And I don't know that it's always the right choice, but it is the choice I made.

But modern-day now is the OncoScore, and a lot of oncologists read the OncoScore. So, we had that done, and they presented my case to the board of oncologists at [LOCATION]. And I believe it was four oncologists. And my OncoScore came at a 21, which is 0 to 19, I believe it is low. 20 and 20 to 30 is considered intermediate risk, and anything higher than 30 is high risk. So, of course, I fell just right on that borderline. And the oncologist-, so, two of the oncologists said, "Give chemo." She's, you know, 32 years old with a positive node. “Let's, you know, stick to what is usual.” And two of the oncologists said, "No, we don't recommend chemo," due to, you know if it was going to benefit me anymore.

When I was pushing back on the radiation, that's when I said, "Isn't there something that we can do to help me with this decision?" And they said, "Oh, yes. There's something called DCIS Decision RX." So, I said, "Oh. Okay." So, then they all decided that I needed to—I could go through that process. And so, I said, "Okay, well, then I'm off to [LOCATION]." So, I went off to [LOCATION] to a conference. And during that period, they were doing whatever you have to do to get the answer. And I got the call while I was down in [LOCATION] that my score indicated that I needed radiation. So, I said, "Okay. I'll go with that." So, that moved me to, you know, I felt better after having that done. And that was part of the consultation. But I mean, I had to bring all of that up because I kept saying, "Well, no. I can't seem to make up my mind. I can't make a decision, isn't there more information?" You know, because I was pushing back about the fact that, "Hey, guys! I'm 70." I may not look it.

At first, I thought that I would just have to have my breast removed, and of course, I was considering that, because I said, when it comes to cancer, I had to find out whether it was—did she really think that I'd really need to have my breasts removed right then and there? But she said, “Na, it's not, you know. After she, she, after she saw from the test, she said, no, she don’t think I should do that right now. And I said, “But if I get to a point where I have to, if I have to do it, that I just have to do it.” I said I'd have to bite the bullet.  When it comes to do you want to live, I just look at it like that. It's a choice of living or dying, so, and I choose to live.

I was. I was 24 when she died. Yeah, I lost her really young. I've lived more of my life without my mother than with my mother. And so, her-- how her cancer progressed played largely into my decision for the bilateral mastectomy, because what I saw was, you know, my grandmother-- my grandmother lived for 20 years past her diagnosis. And then ultimately, it wasn't cancer that killed her, it was a heart attack or a stroke I believe. But my mother lived only, you know, seven years past her initial diagnosis. And then I chose to do the bilateral as opposed to the single because when I talked to my surgeon, he said that, you know, that was an option. And I said, “I thought that's what I wanted.” And he said that, if I was going to spend the rest of my life waiting for that other shoe to drop, then that's going to be way unhealthier than anything. So, he helped me solidify my decision on that, and plus, then I'm not crooked.

I had no idea what I was going to do. Met with the oncologist the following Tuesday, and they gave me my options. I was ER/PR-positive, HER2-negative, stage 1. I had a very small tumor, four millimeters--essentially, smaller than a pea. So, it was caught very early. I was very fortunate. So, they weighed out all my options. And I could have a lumpectomy with radiation, or I could have a single mastectomy. I could have a bilateral mastectomy.

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At the time, my son was 20 months old. And when I really thought about it--I had, I had talked to multiple people over the course of that weekend--and some people who had had lumpectomies, people who had had mastectomies. And I came to the decision that for me, at that time in my life, I could not have a mastectomy because of the physicality of it because my son was so young. I still wanted to be able to hold my son, cradle my son, be active with my son. And they had told me the survival rates for the lumpectomy with radiation versus the mastectomy were the same. The recurrence rates were not the same because I would still have breast, breast tissue left. But for me, that was enough, that if I was going to survive, same percentage-wise. So, I went ahead, and I had a lumpectomy.

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So, 2017, I went back in for my mammogram. And I found out that I had a new occurrence in my other breast. So, separate from the first one, same chemistry--ER/PR-positive, HER2-negative, very small, still stage 1. But it was growing a little faster. So, at that point, there was no debate, no discussion. I chose to have a bilateral mastectomy. Screw me once, your bad. Screw me twice, they're gone. I didn't need them. My son is old enough that he is more independent. He's on his own. Yes, I still want to cuddle with him and be able to be a good mom. But being an alive mom is better. So, I chose a bilateral mastectomy.

It's really hard to know. And I think that that's one of the hardest things about this journey, is that it's basically, I describe it to people as gambling. You are gambling all the time with your life. And the best way that I have found my way through it is to be very conscious of the decisions that I'm making and to be listening to my body in the best ways that I know how.

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I decided not to do chemotherapy after just really grappling with what that might mean for me. At the time, I also had oncotype results available to me. I was a 17 out of 100. So, for anyone not familiar with that test, the lower that you score, the thought is that, you're less likely to have a recurrence. And, honestly, as a young person, who just wanted to go on living my life, that was kind of the green light that just gave me a little willpower to just say, you know what, I'm willing to just risk it right now. And I decided to take a chance with skipping chemotherapy. I did do radiation. I did have surgery. But my metastatic diagnosis came pretty soon after that. And I really think that-- I'm not telling this part of the story to say that I should have done chemotherapy. I will just say that I made the best decision that I could in the moment. And I think that that's the best thing that anyone can do. And it's such a highly personal decision that, you know, it's really hard to say if that would have prevented the metastasis or not. People still get metastatic breast cancer, even having done every single thing that is available. So, it's really hard to say if that would have changed anything.

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And to be honest, like, nobody knows how to handle this. We have some tools available, but nobody's figured out how to cure this. So, at this point, both patients and doctors don't have an answer. So, the best thing that I think patients can do -- is to listen to what their bodies are telling them.