Things I Wish I’d Known About Breast Cancer, Part 2

This post continues what I started in the last post…a few things about breast cancer that I wasn’t aware of at the time of my diagnosis. Knowing the following would have made things a little less stressful:

1. Lumpectomy is a relatively uncomplicated surgery. I wish someone had explained this to me because I was a total wreck going into surgery (which happened to be the only surgery that I had ever had up to that point, making everything 10 times worse). Although I had decided against a full mastectomy, I was still so afraid of what a lumpectomy would entail, what I’d look like and how long it would take me to recover from losing a chunk of flesh.

The reality was…I was back at work the next week. No drainage tubes, no need for heavy analgesics — just a couple of ibuprofin the night after surgery because skipping coffee that morning resulted in a headache, but that was it. It was even hard to tell that I’d had my lump excised. Wish I could go back to my earlier self and tell her not to worry.

Stethoscopes are emotionless. Oncologists can seem to be too, but that’s by design.

2. Doctors are not in a hurry to give you good news. I think there’s a general feeling among medical professionals that there’s so much that can go poorly during cancer treatment that your doc isn’t going to go out of their way to pump you full of optimism. They probably practice keeping an emotionless face as they deliver all sorts of news, both good and bad. As a patient, however, I watched every flicker on my oncologist’s face for an indication of how things were “really” going. I feared that there was something he wasn’t telling me.

It wasn’t until perhaps a year or so later when I was expressing my fears to him about possible abnormalities inside my body that he uttered the phrase, “but you have your health”…and I was taken aback because I had never heard him sound so positive. It was almost a shock to hear him confirm that I was actually considered healthy.

3. Don’t expect things to be the same as before. Accepting that part of your life has changed will make it much easier to go on. This took me a while to appreciate because I was expecting to get back to doing and feeling everything the same as before my diagnosis.

But chemo (and eventually, age) pushed me through menopause, and I had to come to grips with, say, a high-intensity interval workout requiring more recovery time and that I had trouble remembering people’s names. Once I got to that point of acceptance, life after cancer treatment became easier, although it did take a number of years to get there.

4. Hair takes a while to grow back in. The reason I created posts with photographs that illustrated the cancer journey that my hair went through (here and here) was because I could not find good photos on the internet documenting the process. I did see images of a woman a few weeks after stopping chemo with little stubs already visible, but that was not my experience and it made my anxiety over my slow regrowth even worse.

Walking around with no hair was getting old and I was getting more desperate by the day to see evidence of sprouts!

If you’ve ever googled your chemo drug name + “hair loss”, you understand the fear: the first search result is usually a law office gathering info on behalf of cancer patients whose hair never grew back!

It took a number of months before my folicles woke up and actually started growing. I remember the moment that I finally saw growth on the front of my head and it was as if the heavens had opened up and divine light poured out onto me. Seriously. I would have avoided a lot of stress if someone had just told me that it’s gonna be a while.

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Ok, ok, to be fair, my oncologist did urge patience with the regrowth but I was a jumbled mess of nerves and was feeling overwhelmed. All the internet propaganda about both (1) other women having much faster regrowth, or (2) other women never getting their hair back terrified me. Note to self: when feeling desperate, stay off the internet!

Don’t Call It a Boob Job…

I remember telling people that I had breast cancer. Most tried to be as supportive as they could, some weren’t quite sure what to say. But regardless of how they reacted, there was a general expectation that breast cancer surgery meant that I had lost both breasts to the disease.

A few people went as far as trying to get me to “look on the bright side” that I had gotten a “nice rack” out of the deal. For the record, I had opted for a lumpectomy, otherwise known as breast-conserving surgery, which removes only the tumor and some surrounding healthy tissue to ensure that the entire diseased part is removed. There was no “nice pair” to be had.

So maybe this is a good place to clarify a few things.

A mastectomy is performed to remove all breast tissue, usually (but not always) along with nipples, areolae and lymph nodes, of one or both breasts. It’s done to treat breast cancer or, in the case of prophylactic mastectomy, prevent development of cancer in the breasts.

There are alternatives to reconstructive surgery that may be very meaningful to the breast cancer survivor, including creating something beautiful out of what she might otherwise consider an ugly experience.

Whether or not a woman chooses to have a mastectomy vs. a lumpectomy is a very personal decision and based on a number of physiological and even emotional considerations. No one should ever be judged for their decision regarding this.

Similarly, well-intentioned folks should not assume that breast cancer means a bouncing new set of perky breasts. Not everyone who gets a mastectomy will opt for reconstructive surgery. In fact, there are tattoo artists who specialize in using mastectomy scars and the newly-flat chest as a canvas to create meaningful and beautiful artwork.

It’s also important to note, total removal of the breast does not come without its downsides. Surgical complications are more likely with mastectomies, and because so much breast tissue and skin is removed, there may be loss of sensation in the chest area that in some cases is permanent.

A newly published study in JAMA Surgery (Dominici et al., 2021; note, the free PMC version of this article does not appear until Sept 2022) with a reader-friendly version appearing in the NCI blog Cancer Currents) compares quality-of-life scores between a variety of breast cancer surgery types, including lumpectomy, unilateral mastectomy (one breast) or bilateral mastectomy (both breasts). All subjects were young (under age 40 at time of diagnosis) cancer patients with early stage breast cancer who gave scores to their perceptions of items such as breast statisfaction following surgery and both psychosocial and sexual well-being. Having a bilateral mastectomy with radiation treatments resulted in the poorest quality-of-life scores out of all surgery options.

Important: while the sample size of this study was ample, with 560 subjects filling out the questionnaire, the women were predominantly white, married and financially stable. A more diverse subject pool might affect the scores and the study must be replicated with inclusivity in mind in order to extrapolate the findings to the general female population. It should also be noted that no surgical groups’ quality-of-life scores were particularly stellar – such is the way with cancer surgery – but those of bilateral mastectomy patients were worse.

All women, regardless of age, have the right to have their questions answered before making a decision about breast cancer surgery.

Given the notable difference between these scores, and the fact that all the different surgical options were open to these young women due to their early-stage tumor status, it stands to reason that women should be informed by their oncologists and surgeons of the possible outcomes of their decisions and second opinions should be encouraged.

That doesn’t mean that a bilateral mastectomy isn’t the right choice for a younger woman with early-stage breast cancer, only that she should be aware of the possibilities of complications and persistent quality of life issues. She should not be pressured in either direction because there is a lot to consider and it’s not an easy choice, nor does it come at an easy time in her life.

So please, don’t call it a free boob job.

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If you are contemplating a prophylactic mastectomy in the absence of a genetic predisposition (BRCA+) and have early-stage breast cancer, please read this article from breastcancer.org and discuss your options with your medical team.

Breast Changes, Revisted

One of the most popular posts on this site has been, “I Didn’t Expect THAT: Breast Changes“, so I thought it might be useful to revisit the subject now after a few years have passed since my initial lumpectomy for breast cancer.

Before my surgery, I had been frustrated by the lack of information about how much tissue would be removed along with my tumor. Or maybe I was just too afraid to search. In either case, I had prepared myself to lose a good chunk of my left breast. All the “after” photos of lumpectomies that I found on the internet were not pretty.

However, my tumor was only 1.6cm at its longest, and was on the outer upper quadrant of breast, and this turned out to offer me the best of all possibilities. There was amazingly little breast size lost. I was impressed. So was my surgeon.

So, fast forward to now, three and a half years down the road. The scars, one for the lumpectomy and the other for lymph node excision, remain very uninteresting in a good way. Only three sentinel lymph nodes were removed, and the scar for that sits up in my armpit. The lumpectomy scar is situated a bit further down and into the side of my breast. But it’s not obvious.

This is the original photo from my post on Nov 1, 2018, already over a year and a half since my surgery.
Three and a half years after surgery, today: the top scar is the lymph node excision, the bottom one is the lumpectomy.

The biggest issue I have had with the lumpectomy scar is that the scar tissue there feels like a biggish lump itself. Not frightening for me anymore, but when I went to a new gynecologist who, I suspect, forgot that I had had breast cancer (HOW? That’s the main thing I talked about!), she felt that area and said, “Oh, there’s something here” in that ‘I’m-going-to-say-something-scary-in-a-calm-voice’ kind of way.

Yes, it was just my scar tissue, but for a split-second I wanted to let myself freak out. Didn’t, but wanted to.

Sorry about the headlights…I just wanted to show how “normal” the shape of my breasts is. The weird thing is that it’s actually my left breast that is a bit BIGGER now. Who would have expected that? (NOTE: my left breast is also turned towards the camera slightly, accentuating its size.)

But the bottom line is, as time has gone by, the scars remain inconspicuous, and if not for the fact that my affected breast is actually a touch firmer and larger than the healthy one, something attributable to radiation treatment, there’s no obvious sign that I had breast cancer.

Not a bad deal considering what could have happened.

About That Boob Job…

Not gonna happen.

The funny thing about telling people that you have breast cancer: their eyes always seem to glance down at your chest, as if they’re thinking, “Wait, are those real?”

Our society puts a lot of value on breasts, way more than just as vehicles for nourishing our young. As a dedicated breastfeeder of two children, I was surprised by how many women admitted to me that they wouldn’t breastfeed because they didn’t want their breasts to sag.

There’s also this weird assumption that a woman will jump at the chance to “improve” her breasts; in the case of a breast cancer patient, hey, congratulations, you get “free” implants! YAY! After I related my diagnosis to a male friend, he noted that finally my husband would get the C-cups that he’s always dreamed of.

Stop. Go back and re-read that last sentence. It was my breast cancer, but my husband would “benefit” from it too. Yay.

“Bummer about your cancer diagnosis, but at least you’ll get a nice pair out of it.”

If you’ve read about my breast cancer experience, you’ll know that a mastectomy was unnecessary because my tumor was small enough to require only a lumpectomy. My recovery from surgery was short — I was back to work the following week.

However, my insurance would have covered removing far more breast along with reconstruction. None of this, as far as I’m concerned, would have been medically justifiable, but there was the expectation that breast cancer equals boob job, even when studies have shown that survival outcomes are not improved by complete removal of the breast when only a lumpectomy is indicated (for example, Fisher et al., 2002), and there are far more complications that can arise from the multiple surgeries necessary for reconstruction.

This, of course, was my personal preference. To be fair, I know a number of breast cancer survivors who had no other option than a radical mastectomy. That in itself is traumatic, so it’s perfectly understandable why they would want reconstruction in an effort to regain whatever normality they could. As I wrote in Body Image, Part 1, like it or not, breasts do define us as women. You can argue whether or not that sets women’s rights back (“I am not my breasts”) but I feel that when it comes to cancer, all bets are off. Breast cancer survivors deserve a lot of leeway in making decisions about whether or not to reconstruct.

Those who do choose reconstruction may still have a host of other issues that they have to contend with (see the Healthline article: “No One Talks About the Emotional Side of Breast Reconstruction”). So it’s not all wine and roses and Double-Ds.

I didn’t need a complete mastectomy and thereby did not augment my tiny breasts even though I could have. For me, this was not a matter of “looking better” or “taking advantage” of the situation the way others suggested I should. It was about maintaining the greatest degree of normality, getting though the experience and trying to get on with life.

I Didn’t Expect THAT: Surgical Glue

This was one of the nicest surprises that I received throughout all of treatment.

Growing up, I always associated surgery with umpteen stitches that required removal. Then again, I also associated cancer with certain death. Luckily, neither one is a definite anymore. Since I’d never needed major surgery before, I had no idea that surgical glue is a thing. And what a thing it is! It would have probably been different if I’d had a mastectomy, but with a simple lumpectomy to remove a not-so-big tumor…all the stitches were dissolvable and internal.

Armpit_glue
A view of my armpit after my surgery. The top scar is lymph node excision, the bottom is lumpectomy. The shiny stuff is glue. Yay, no bandages needed and no stitches to remove!

On the outside, there was glue. It was plastic-y, kind of like if someone had taken nail polish and drawn a stripe across the incision, only it was more pliable. As my incisions healed, the glue flaked off. There were no dressings to change, no bandages necessary at all. Not having external stitches was a beautiful gift from my surgeon.

If you’ve read my other posts, you’ll know that psychologically I didn’t handle the concept of cancer well. It took me on an anxiety-fueled roller-coaster ride, as I went from a healthy, active woman to a cancer patient. I have a stubborn expectation of normality in my life, and over the years I’ve put a lot of work into maintaining it. Cancer blew that to shreds. And in a funny way, that littleĀ strip of glue brought a bit of “normal” back to me.

Sometimes, it’s the little things…

 

I Didn’t Expect THAT: Breast Changes

Or more accurately “Breast Changes, Lack Thereof.”

This one threw me for a loop. Prior to my lumpectomy, I scoured the internet for ideas of what partial breast removal looked like. In a word, disfigurement. Certainly, having half a breast was preferable to having no breast or dying from breast cancer, but I wondered how I would deal with losing a secondary sex characteristic that society uses as an indication of female-ness. My breasts had nursed two bouncing babies into toddlerhood and cancer was going to take one of them (breasts, not babies!). That kept me up at night.

Scars
Top scar: sentinel lymph node dissection; bottom scar: lumpectomy. Teeny!

After dying a thousand deaths, I found that my reality was not nearly as frightening. My lump was small and sitting at about 2 o’clock on my left breast. That put it dangerously close to my axillary (armpit) lymph nodes, which could enable the cancer to spread faster, but also in a place where tissue removal would be less noticeable. Three sentinel lymph nodes were removed from my armpit — they were found to be unaffected. My surgeon was able to get “clear margins” (no cancer cells were seen on the edge of the tissue that was removed) on the cancerous lump, and if not for the scars, there was little indication that I’d had surgery.

Scar_arm-down
View of my lumpectomy scar, arm down.

That blew my mind. With small breasts, I didn’t think I could spare the tissue. I was contemplating a prosthesis, and concerned that the size of the excision might tempt me to go with reconstructive surgery…but none of that was necessary. Even my surgeon was surprised. I told her it was because she was an excellent surgeon, but she wouldn’t accept the compliment. According to her, I was just very lucky.

After radiation treatment, that breast tightened up and even gained a bit of size. All at no extra cost.

So, whenever I do a gratitude meditation and count my blessings, I reflect upon this. There are so many things that could have been worse, and I had gotten lost in the terror of it all. But in the end, it was okay.

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Note: I wanted to show how similar both breasts looked, but then there’s all this potential for getting flagged as inappropriate, so you’ll need to be content with “side boob” photos and just take my word for it.