(Book Review) The Cancer Journals by Audre Lorde

Someone in one of the Facebook support groups recommended this book. I actually had a hard time finding a copy. It was listed on Amazon at exorbitant prices, and not in stock at Barnes & Noble. The entire library consortium to which our local library belongs had only 1 copy, with a short hold queue. I finally found it available at the University at Buffalo Bookstore, because it's taught in one of their classes. I gave it 4 stars on Goodreads and posted the following review.

The actual book is a very brief 79 pages. The special edition additionally includes 20 pages of photos and posthumous tributes to Audre Lorde, who died of liver cancer in 1992. I am reviewing only the content written by Audre Lorde; I admit I did not read all the tributes that followed.

Audre Lorde was a black lesbian feminist poet. Her writing is at times poetic or edgy. It's important to keep in mind that this book was written in 1978, and the landscape of breast cancer detection, treatment, and prognosis has changed significantly since then; genetics as a factor in the occurrence of breast cancer was not yet known at the time. She advocated for going flat after a mastectomy, and was against wearing prostheses. She was sometimes skeptical of the medical establishment, and she supported exploring alternative therapies.

The book started out non-linearly. On page 26, Audre Lorde began to tell her story narratively.

One speech reprinted in this book was given after Audre Lorde had surgery for what ultimately turned out to be a benign growth, before she was diagnosed with breast cancer and had to undergo a mastectomy. Her speaking at this point in time is powerful. Many women experience the fear of breast cancer, and are thankfully spared. Their experiences and voices are valid in conversations about breast cancer. For every woman with breast cancer, the path began with that fear of suddenly becoming "forcibly and essentially aware of [your own] mortality" (p. 17), and a hope to be spared.

I don't think I would automatically recommend this book for anyone diagnosed with breast cancer and undergoing a mastectomy, but it's certainly worth a read if you have been diagnosed and are working through emotions, or are considering going flat. Reconstruction was still a relatively new post-mastectomy procedure back in 1978, but it's no surprise (given her feelings on prostheses) that she referred to it as an "atrocity". (p. 70) If you've already decided to go flat, this book can be a strong affirmation of your decision.

This book was a very personal read for me, so the rest of this space I will use to identify quotes that were especially meaningful to me, and why.

"These selected journal entries... exemplify the process of integrating this crisis [of breast cancer and mastectomy] into my life." (p. 8)

Having cancer is not a "phase". It's not something you "get over" or "put behind you". Being diagnosed with breast cancer and undergoing a mastectomy changes you forever. The non-existence of your breasts is a constant, daily reminder. There's always a chance the cancer will return, and you live with that "background noise of fear" (p. 12) and anxiety for the rest of your life.

"...[W]hat is most important to me must be spoken...the speaking profits me, beyond any other effect." (p. 17)

Well, I'm glad Audre Lorde spoke, because her speaking profited me, too. As a woman with breast cancer recovering from a double mastectomy without reconstruction and having a whole lot to process, reading this book assured me that I am not alone. So much of what she wrote - about fear, mortality, self-identity, pain (both physical and emotional), even the feeling of support when showered with the care and concern of others - resonated with me personally, even as the details of her experiences differed from mine.

"Once I accept the existence of dying, as a life process, who can ever have power over me again?" (p. 24)

Variations of this sentiment were repeated a few times throughout the book. Being diagnosed with cancer means being forced to face your mortality. It's just a really powerful idea that once you face the very real possibility of death, everything else is put into perspective.

"I am a post-mastectomy woman who believes our feelings need voice in order to be recognized, respected, and of use." (p. 7)

"I am also writing to...[set] down my artifacts, not only for later scrutiny, but also to be free of them. I do not wish to be free from their effect... but free from having to carry them around in a reserve part of my brain." (p. 54)

These words echoed my own feelings of why I decided to keep a blog about my breast cancer experience. The "of use" part is why I made my blog public; I hope my experiences can help support and reassure another woman in her time of uncertainty, anxiety, and fear.

"[The] socially sanctioned prosthesis is merely another way of keeping women with breast cancer silent and separate from each other." (p. 14)

"Prosthesis offers the empty comfort of 'Nobody will know the difference.' But it is that very difference which I wish to affirm, because I have lived it, and survived it, and wish to share that strength with other women... [W]omen with mastectomies must become visible to each other." (p. 62)

1 in 8 women will eventually be diagnosed with breast cancer, but you wouldn't know that by looking around you. There is a whole sisterhood of potential support for one another, but we don't know who has borne the burden of breast cancer because we try to hide the evidence of having been through it. I get it. Social norms are hard to go against. Women are "supposed" to have breasts. But what if we could recognize our warrior sisters on sight? I think it would be empowering. Of course it's a very personal decision whether or not to get reconstruction, and if not, then whether or not to wear prostheses. I have chosen no reconstruction, and I'm not sure yet where I'll end up regarding prostheses, but certainly this book has inspired me to more boldly embrace being flat, and has reassured me of the power and peace of not wearing prostheses.

I think it's worth noting that while Audre Lorde doesn't spend a lot of time reassuring women who do choose to wear prostheses, she does say that prostheses "can still serve a real function for the woman who is free enough to choose when and why she wears one or not." (p. 68) She was not completely against prostheses; what bothered her was how much immediately wearing a prosthesis was considered the normal, default thing to do, and how it was a way for women to reclaim their "old selves" before even allowing them the time and space and opportunity to get to know and love their new selves, sans breast.

Why I'm Getting a Double Mastectomy

Since I've starting sharing my news, and this blog, with friends and family, I've had a couple people ask me why I'm opting for the double mastectomy, when only a single mastectomy of my right breast is medically necessary.

First, I think it's important to note that such a decision is obviously very personal, and every patient needs to make their own decision based on their diagnosis and medical history, in conversation with their medical professionals, and taking into consideration their own priorities and feelings about self-image. Each person's thought process will be unique to them, and what feels right to one person might not work for someone else. This post is just a record of my personal decision.

If you ask me to describe myself, I would say I am nothing if not thorough! (As evidenced by this blog...) But in choosing words to describe me, a close second might be "risk averse". I will always wear my seat belt, I will always bring along an umbrella, or a light jacket, just in case.

This whole process - from finding the lumps to making appointments and having mammograms and ultrasounds and then an MRI and biopsy and waiting for phone calls with news - has been super stressful. I NEVER want to go through it again.

At this point, my doctors and nurses have told me that my MRI shows "something" in my left breast. That means it's possible I already have cancer in my left breast. Also, the "variants of unknown significance" in my genetic testing say I "may" have a hereditary risk; it hasn't been ruled out. Combined with the fact that I do have a family history of breast cancer (two paternal aunts had it), all of it together means there's a real possibility of having to go through this whole process again in the future for my left breast. Just, no.

I might have worried about being overly aggressive by opting for the double mastectomy, except my breast surgeon characterized the decision as a "shared decision" established by us both together. It definitely offers the most peace of mind, which is important to me as someone who is prone to anxiety.

My top two priorities right now are:

1. Get rid of the cancer that's in me now.
2. Reduce the risk of cancer coming back.

Even with a double mastectomy, my NP says there's still a 1-3% chance of recurrence. It's not 0%, but if that's the lowest possible risk, I'll take it.

Secondary to reducing my risk of recurrence and increasing my peace of mind was considering my self-image. It's hard to know how you would feel in a situation until you are actually in it, but the idea of being "lopsided" actually makes me feel more uneasy than the idea of just being symmetrically flat. I'm not worried about questioning looks or judgmental comments, I'm sure to get those either way.

With a single mastectomy, I could still opt for reconstruction or wear a prosthetic, but from what I gather, they don't always look symmetric anyway. It would just be one more thing to worry about before leaving the house, like, "Do my boobs look even?" And for someone who already doesn't prioritize fashion or style or appearances in general, it just seems like something I'd rather not worry about.

One thought that did occur to me was, if I were younger, and still planned on having children, I would absolutely want to keep my left breast in the hopes of breastfeeding any future babies. But I don't plan on having any more kids. I appreciate that I was able to breastfeed both my kids, and I feel like my breasts have served me well. It's okay if they have to be removed. Like one of my aunts pointed out, a breast is not a vital organ.

So, interestingly, I find myself having kind of a Marie Kondo type attitude. Haha. Due to the cancer, my breasts no longer spark joy for me. Before getting rid of them, I am thanking them for having served their purpose.

9/5/19 Update: After my surgery, the surgical pathology found cancer in my left breast, validating my decision to have a double mastectomy!

6/20/19: Phone Call + Genetic Counselor Appointment

While driving home from my morning appointment, someone called and left a message about the genetic testing. I returned the call as soon as I got home.

The genetic counselor who works at the local site is on vacation. I will need to see a counselor at the main hospital in the city.

At first, the only available appointment was on a day that wouldn't work well for me. I asked if there was anything else available, and here's a bit of luck, they had a cancellation! All I had to do was get into the city by 1:00 the same day.

I Google Mapped the directions, and thankfully my husband was able to come with me, and do the driving. The older I get, the more anxious I get about driving in the city.

So we both met with the genetic counselor. She explained the role of genetic counseling in the context of my diagnosis.

For starters, the counselor told us that 1 in 8 women eventually get breast cancer. Of those, only 10% can be linked to a hereditary cause.

Apparently, age 43 is considered young for being diagnosed with breast cancer. This site lists age 62 as the median age of diagnosis for breast cancer for U.S. women. A younger diagnosis makes it more likely that perhaps the breast cancer is related to a gene.

Genetic testing results are a factor in deciding the course of treatment. I'm already supposed to get a mastectomy. But if my genetic testing reveals that I have a gene that is linked to breast cancer, that means it's more likely that I will eventually get breast cancer in my other breast as well. In that case, the surgeon would be more likely to recommend a double mastectomy.

The counselor also said that the surgeon may use a more aggressive technique during surgery if I have genes linked to breast cancer, as it would be more imperative to try to remove all breast tissue.

Some genes are linked to both breast cancer and ovarian cancer. If I have one of those genes, for example, after I complete my breast cancer treatment, I might be asked to consider removing my ovaries as well.

Beyond my own health, genetic testing results could also affect my children. If I have a gene that could be passed on to them, they, too, would benefit from genetic testing, most likely starting in their 20s or 30s. We became emotional at the thought of our children facing cancer themselves, getting their own genetic counseling, some time in their future.

The first step is to do a blood test screening for the 9 most common genes linked to a significant increase in risk for breast cancer. If that comes back positive for any of the genes, the testing would probably stop there. I would move forward with a "genetic team," including a medical oncologist. They would counsel me on how my genetic testing results might affect my ongoing medical care.

If the screening comes back negative for the 9 most common genes, they would probably recommend I do further testing to screen for 23 additional genes that are linked to breast, ovarian, and uterine cancer. Alternatively, I could opt to screen for 83 genes linked to a whole bunch of different cancers.

Finally, she said that genetic testing requires prior authorization from my insurance company. She would handle obtaining the pre-authorization, and at most I might have to pay $250.

She asked me for a thorough medical history of incidences of cancer in my family, which aids in determining the likelihood of me having a hereditary gene linked to cancer. Then I had my blood drawn. The genetic counselor said she would call me in 1-2 weeks with the results.

6/20/19: Mammogram and Ultrasound - Inconclusive + NP Appointment

Today's appointment was scheduled because the MRI showed "something" in the left breast.

I thought they were going to do an ultrasound of my right breast, too, but they didn't. Maybe there's no need to look any further now that it's clear the right breast will be removed anyway.

In the waiting room, I was asked to fill out the standard mammogram paperwork again. This time, my answers included my recent MRI, biopsy, and breast cancer diagnosis. My NP popped in and said I could ask to speak with her at any time during my visit.

First, I got a diagnostic mammogram of my left breast.

Next, the ultrasound of my left breast. When the ultrasound technician left to show the images to the radiologist, the nurse who was at my biopsy came in. She was so comforting, I couldn't help a few tears from slipping out.

The technician and the radiologist returned. The radiologist was the same doctor who performed my biopsy. She said the technician didn't see anything in the ultrasound. She repeated the ultrasound herself to confirm the same.

So, neither the mammogram nor the ultrasound could explain what the MRI showed. The radiologist recommended an MRI-guided biopsy for my left breast, and also genetic testing. Before leaving, she gave me a kind, sympathetic, "I'm sorry you're going through this" kind of look.

At this point, my appointment was technically over, but I asked if I could speak with my NP.

I held it together until my NP walked into the examining room. She handed me some tissues and reassured me my reaction was normal. 

She said she is still in the process of making the appointment with the plastic surgeon.

She will make my appointment for the MRI with biopsy. That appointment would have to take place in the city. These appointments are typically made about 2 weeks in advance.

She will put in a referral for urgent genetic testing. They will call me to set up an appointment. 

She said genetic testing results typically take about a week. Even if the results aren't available in time for next Friday's appointment with the breast surgeon, we should still keep that appointment. 

We will proceed assuming both the biopsy and genetic testing are negative.

If the biopsy comes back as cancer, or if the genetic testing shows I carry genes linked to breast cancer, the surgeon would likely recommend bilateral surgery - a double mastectomy.

The NP said that even if both tests are negative, I should still think about whether or not I want to get both breasts removed. For some women, preserving natural breast tissue is very important. For others, reducing the anxiety of cancer recurrence is more important. If I decide to get a double mastectomy for preventative reasons, she would cancel the MRI biopsy, as the results would be irrelevant if the left breast is going to removed anyway.

I asked if there is any chance of recurrence if both breasts are removed? She said the goal is to remove all the breast tissue, but sometimes it's not possible, so there is a small 1-3% chance of recurrence even after a double mastectomy.

And how would I be screened for cancer, if there are no breasts to image? She said I would have regular clinical visits with her, the NP, and she would perform physical exams to feel for lumps. (I didn't think to ask, but will add to my list: Would breast reconstruction surgery affect the ability to palpably detect new lumps?)

Regarding breast reconstruction surgery, she said I don't need to decide that now. I can always choose to have it done at a later date. It was something of a relief to have one less thing to worry about right now.

To aid her in setting up my appointments, I had previously given her my summer vacation schedule. I told her to disregard them. I don't want to delay treatment.

6/19/19: My NP Called Me

My NP called this morning, as promised.

Every time someone from the Breast Center calls, it's a different number. But now I know to pick up just in case.

I had prepared a list of questions in advance. The NP had me ask my questions first, but in this post, I think it makes more sense to describe important information first.

I have my appointment with the breast surgeon next Friday. I'll have my husband go with me to that appointment.

The NP said the surgeon would likely recommend a mastectomy.

She said she spoke with the surgeon about my case. The cancer being in 2 locations, in 2 quadrants of the breast, is complicating. Usually, when the cancer is in one location, they surgically remove the tumor, then treat the location with radiation to reduce the chances of recurrence. I guess the radiation is targeted to the specific location of the cancer, and it's not an option if there are 2 locations. I wasn't clear on why not, but I found this site that lists radiation as an option if the cancer is "located in one site."

Additionally, the second lump being so close to the nipple is also complicating. She said because of this location, breast-conserving surgery doesn't provide a good option cosmetically. 

She said she would also make an appointment for me with a plastic surgeon to discuss breast reconstruction surgery. We will have to drive to the main hospital in the city for that appointment. At this point, I'm not sure how I feel about breast reconstruction surgery, but I figure it makes sense to meet with the plastic surgeon to learn about the process and what my options are.

Other things we talked about during the phone call:

I asked for clarification regarding the first lump. She said the lump itself is a sebaceous cyst, and the cancer is behind it. The cancer showed up as a "shadow" on the ultrasound, so it looked like maybe the cyst had ruptured, but it turned out to be "not related." I'm still not fully clear on it, but it seems like it's just a coincidence that the cyst happened to appear in front of the cancer.

And the second lump? It's a cancerous tumor. She called my case "multifocal" because there is more than one lump, but when I Googled it, I think maybe she meant "multicentric" because she was clear that my 2 lumps are in different quadrants. I'm not sure if having multicentric cancer is automatically worse than having unifocal cancer, but it can't be better. (In Googling "multicentric breast cancer", it does appear that a mastectomy is the typical course of action.)

The NP said that when there are multiple tumors, they evaluate the cancer based on individual tumor size; they don't add up all the tumors for a total size. She referred to my tumors as "small," and she said having the 2 locations doesn't necessarily mean the cancer is more advanced. I guess that's reassuring. 

I asked if they could tell what type of cancer it is, and what stage? She said they are still waiting on the receptor testing. And they will have a much clearer picture after surgery. During surgery they will look at the lymph nodes (something about a dye, and a biopsy) because apparently if breast cancer spreads, it will spread to the lymph nodes first. She did say that my lymph nodes "looked okay" on the MRI, so that's a "good sign."

Finally, I told my NP that I had read online that it takes about 2-5 years for breast cancer to grow big enough to be palpable. So understanding that my body has already hosted this cancer for a while, is there anything I can or should be doing now that I've been diagnosed? She said the only lifestyle recommendations are regular exercise and a healthy diet.