Sarah
__400x300.jpg)
Sarah is a 51-year-old White woman and mother of two, who lives with her wife and son in a large city in the West.
See full story
Sarah had been aggressively screened for breast cancer for a long time, due to her strong family history. Following a routine scan at the age of 49, Sarah was diagnosed with invasive ductal carcinoma. She knew immediately she would have a bilateral mastectomy, having watched her mother die just seven years after having a lumpectomy. Read more about Sarah’s experiences with a strong family history of breast cancer here. While acknowledging “it’s not for everyone,” Sarah decided to “go flat,” because she could not abide a foreign substance implanted in her chest wall. She is grateful that her surgeon respected her wishes and did not leave extra skin to have reconstruction “just in case” she might change her mind. Luckily, her tumor was very small and there was no lymph node involvement. As a result, she did not need radiation or chemotherapy, noting “that was a big sigh of relief when I got that report back.”
Despite her family history and familiarity with breast cancer, Sarah’s “world came crashing down” upon learning that she had breast cancer. Given the small size of the tumor, she decided to take several weeks to mourn (and celebrate) her breasts and to gather her support team before undergoing her double mastectomy. The celebration of, and farewell to, her breasts included her wife at the time who was sad about the impending loss, her daughter who celebrated how she was nourished by them, and a water-color artist friend who painted and gifted a stunning full nude painting of Sarah. Sarah’s post-surgical support team included her daughter and sister, who both came from out of town, so her wife and son could carry on with their day-to-day activities. A “breastless woman” coached Sarah on what it might be like to go flat. More than a year since surgery, Sarah still experiences phantom pain where her breasts once were.
She finds it interesting that some people did not notice that her once “fabulous” breasts are gone. While she still misses them, Sarah did not fill her prescription for prostheses, which she calls “foobs” (fake boobs), likening them to wearing false eyelashes. Noting a prior lack of shape issues, Sarah says she’s “lucky in that I'm thin [and] didn't end up with any dog ears or… severe scarring.” She filled her prescription for tamoxifen, a type of hormone therapy. However, after reading the side effects (including fatigue, weight gain, joint pain, and poor sleep), Sarah multiplied her actual post-mastectomy risk of recurrence by the percentage that tamoxifen could lower it. Once she confirmed the small benefit of tamoxifen for her, she decided the side effects and hit to her overall quality of life were not worth it. Sarah does yoga and exercise, gets good sleep, has deep relationships, gardens, and eats well. She switched to an oncologist who confirmed her math and supports her decision to forgo hormone therapy.
Raised in a very “judgmental” and fundamentalist Christian community, Sarah has found a “God lite” faith community that accepts her for being gay and is very much aligned with her values. She would tell anyone just diagnosed with breast cancer to “make it about yourself,” and to not feel you have to take care of people who can’t deal with your cancer. With regard to dealing with health care, Sarah would advise others to not take “no for an answer,” and to seek a “second or a third opinion,” if needed.
Sarah says her choices reflect the experiences of her mother and grandmother with breast cancer.
Sarah says her choices reflect the experiences of her mother and grandmother with breast cancer.
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.
The idea of implants freaked Sarah out.
The idea of implants freaked Sarah out.
I very briefly toyed with the idea of having reconstruction. But the thought of having something underneath my, underneath my muscle, inserted in my body just freaked me out. I knew it wasn't for me, not something I could abide by. And lucky, I had a care team that accepted that.
Sarah filled her tamoxifen prescription, read the side effects and then decided not to take it.
Sarah filled her tamoxifen prescription, read the side effects and then decided not to take it.
I even opened up the package. And it was once I read the insert that I decided not to take it just because of all of the downsides. My risk of breast cancer is now way below what it was prior to the mastectomy, and I didn't feel like the risk of the side effects from tamoxifen was worth it.
Sarah says she feels less secure in her relationship than she did before.
Sarah says she feels less secure in her relationship than she did before.
Even though my wife is amazing and has never made me feel less than, I struggle with, “Am I still attractive?” So, I struggle with that sometimes.
---
It has made me a lot less secure. I've always been very secure in my sexuality and my sensuality. And it's created this instability that I don't, this insecurity that I don’t, that I haven't ever struggled with before. So that's a whole new thing for me. It has, it's forced us to talk a lot. It has it’s forced us to check in with each other a lot more, “Is this OK? Is this not OK? How do you feel about this?” So, it's a lot, it has been a lot of navigating.
---
I find myself envious of breasts. You know? Sometimes, like either having them or then feeling like, “oh, maybe my wife wants to touch other breasts because I don't have them now.” So, I'm sort of insecure like that.
Sarah feels misled by the way her oncologist described reductions in future cancer risk.
Sarah feels misled by the way her oncologist described reductions in future cancer risk.
With the tamoxifen, it was presented as it would increase my survivability by 40%. But my recurrence rate was already8%, which is like 30% lower than it was before the mastectomy. The numbers were presented very skewed towards taking tamoxifen. It was, you know, a 40% better rate. Well, if my rate's only 8% of re-occurrence, that makes it, what five percent? So, it's really only a 3% reduction in my recurrence possibility. So, when I really looked at what I was being told, the 40% is what I heard. Oh, 40%, that's great. That's much better. And I don't know why I put it--why I really broke that down, what the oncologist said. Well, I don't know why I really broke that down into, well, let's look at what 40% means. I can't remember why I came to--except that it was reading the insert for the tamoxifen, you know? Reading the actual drug company's information--what they said combined with what the oncologist said and sort of breaking that down. And it's funny that when I spoke to the second oncologist about not taking tamoxifen, her first thing was, “Oh yeah, well, it's a 40%--but I mean, going from 8 to 5 percent.”
Sarah learned to accept support from a “breastless friend.”
Sarah learned to accept support from a “breastless friend.”
Gosh, I just feel so lucky and blessed. I feel so lucky and blessed and, I mean, I'm a crier. So, I'm going to cry about it. Part of that was learning to accept the help. I am, again, very fortunate. I found a breastless friend through another friend who, a woman who had, who’s been flat for about 18 years. And she really helped me through guiding me in, in, in accepting the help. When I said, “oh, no, I don't, I don’t”—she said, “no, no, no, take the help. Take the help. Sit down and heal. Sit down and relax.” It's just simple things like the first three days, let somebody else take care of your dreams. Just absolutely, you can do it yourself; you know? I have this, I'm so, like, confident and self-assured and I want to do everything on my own, you know? Those, that was my first sentence. “I do it myself.” My mom always told me that was my first sentence. And that's how I am. I'll do it myself. But learning to let somebody else do for me and let the people around me love me and help me, and that was part of the, the big lesson of cancer for me.
Sarah’s breasts are still sensual after mastectomy.
Sarah’s breasts are still sensual after mastectomy.
I've spent so much time with breasts there... Metaphysically, they're still there. And I can honor that. There is surprising sexual sensation that I thought was going to be gone because the nipples gone. So, it is still a very sensual area. I'm just really, really coming to peace and accepting that metaphysically they're still there and being OK with that. Not telling my brain that it's lying to me, you know, but accepting that that's a fact.
Sarah was worried about switching doctors, but found it was no big deal.
Sarah was worried about switching doctors, but found it was no big deal.
It was 7 and 1/2 months and I didn't make the appointment and oncology called me and was like, “You need to make an appointment.” Or they sent me an email or something. “You need to make an appointment. It's time for your follow-up. It's time for your follow-up.” And they were bugging me. And when I called to make the appointment, I, all of a sudden, it just dawned on me. I was like, “Well, well I'm not really happy with the, my oncologist. Can I make an appointment with somebody else?” And she went, “Sure. If there’s a, I mean, if there's a breast specialist available, let me look.” Click, click, click, click. “Oh yeah, sure. So and so--how's that?” It was just, it was very--I was really super worried about it like I'd have to like break up or something. But all I had to do was schedule with somebody else. And it was an internal, like, duh. Duh, I have agency. Duh.
Sarah says be sure to keep your focus on yourself: “You got this.”
Sarah says be sure to keep your focus on yourself: “You got this.”
What kind of messages would you give to a woman who is just coming down your path? She's 19 months behind you.
“I'm sorry.” That's what I would say. “I'm sorry this is happening.” I would say, “You've got this. You've got this. You're going to get a lot of advice. Don't take all of that. Sort through it for yourself. Do what you can. Don't do everything. Don't, don’t let other people make it about them. You just got a cancer diagnosis. This is about you. If you have friends who are very, very, very, very upset that you have cancer and you're finding that you have to comfort them because you have cancer, don't do it. That person has to be cut out right now. You've got way more important things to do than to make sure that they're emotionally OK. Make it about you because it is.
Sarah says, “Find something to do and do it.”
Sarah says, “Find something to do and do it.”
Don't wait for the person to tell you what to do. Find something to do and do it. When--you know, we have this tendency, like, “What can I do to help?” Well, that's just something else you're putting on me to help decide. I just got diagnosed with cancer. Don't ask me what you can do. I got too many other things going on. Find something to do and do it. If it's wrong, then it's wrong, you know, in, in, instead of it, instead of it being nothing. So, cook a meal and bring it, you know? Bring flowers. What, whatever you can think to go clean up their front yard, you know? Whatever it is. Just show up and do it. Do not ask permission. “Can I do this for you?” Just go do it. Go take out their trash for them. If it's wrong, then it's something instead of it just being nothing.