Tag: Quality of Life

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.

Look, Ma! No Libido!

This is a delicate issue that isn’t talked about enough. It’s time we brought it out into the open.

Based on the reactions that I’ve received from some health professionals, I believe that loss of libido is a highly underreported side effect of aromatase inhibitors, medications that are prescribed to suppress estrogen production in women who have or have had hormone receptor-positive breast cancer; aromatase inhibitors are generally given only to postmenopausal women. Sure, low libido is listed as a possible side effect on the informational insert that you get with the pill bottle, but its mention feels like an afterthought. The reality is, AROMATASE INHIBITORS STOMP OUT YOUR FREAKIN’ LIBIDO.

Why don’t we talk about this more? This may be due to the average age at diagnosis of breast cancer being the mid-60s, give or take. I’m willing to wager that many women of this age don’t feel very comfortable discussing intimate details of their personal life with (especially male) oncologists.

Couple that with the fact that as much as we’re trying to change as a society, postmenopausal women are still not valued very highly. Youth equates to beauty, and women continue to be judged by their appearance. Even the inhabitant of the White House has reflected the notion that an “older” woman wouldn’t be a fit companion for a high-powered man, presumably because he deserves “better”.

So let me stress, everyone deserves the opportunity to engage in meaningful intimate relationships. As we get older, sexual intimacy may not have the same prominence in our interactions, but it is still an important part of bonding.

This is a perfect example of a “quality-of-life” issue. It can’t be measured by a laboratory test, but it’s something very valuable. When the medical profession obsesses about breast cancer survival rates, and when the pharmaceutical industry develops even more-effective medications, those lives saved can be counted as numbers. But sadly, a drop in desire for intimacy, or a similar quality-of-life marker, can’t be measured in the same way and, therefore, doesn’t bear the same weight in decision-making.

Loss of libido can lead to a decrease in perceived quality-of-life

It rankles me when some of these complicated low-hormone effects experienced by women taking aromatase inhibitors are written off as simply symptoms of natural menopause, as if the cancer survivor is making a big ado about nothing. As someone who was premenopausal when originally diagnosed with breast cancer, and then chemically forced through menopause via chemotherapy and tamoxifen, I can assure you, none of this is what my body would “normally” be doing. The change from what I was to what I am is really striking.

I often think, if a medication could reduce the risk of cancer, but you would have to sacrifice your left arm for it to work, it probably wouldn’t sell well. But if the cost weighs heavily on quality-of-life, taking a toll on intimate relationships, that’s perfectly acceptable? Women who stop aromatase inhibitors are called “non-compliant”, as if they’re foolish and don’t know what’s good for them. But maybe doctors need to consider more than just statistics when it comes to treatment recommendations.

So why aren’t we forcing this conversation with more medical professionals? It’s easy to write prescriptions for medications. It’s much more uncomfortable to navigate the complexities of how intimacy suffers from them. The level of detriment will differ from person to person, as will the value of an intimate experience. While oncologists work to improve the length of our lives, as cancer survivors we need to apply pressure in the other direction, to make sure that their decisions are also informed by the quality of our lives.

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It’s important to note that while libido takes a huge hit from hormone-suppressing medications, it’s not even the main reason women stop aromatase inhibitors. There are other side effects that make the medicines difficult to continue. If you are having troublesome side effects, then tell your doctor as soon as possible. If your doctor doesn’t listen and doesn’t offer ways of alleviating your complaints, it’s time to find another doctor.

Balancing Side Effects vs. Quality of Life

“Remember that your doctor has prescribed this medication because he or she has judged that the benefit to you is greater than the risk of side effects.”

I can’t tell you how many times I’ve read that statement on the informational leaflets from various bottles prescribed for me. When it comes to a disease like cancer, it might as well say, “You think these side effects are bad? Hohoho, just try not taking your meds!”

This does not give warm, fuzzy feelings of hope. Then again, there’s not much about cancer that’s warm and fuzzy.

It can feel like the treatment is as bad as the disease.

I, admittedly, am generally accepting of the advice given by knowledgeable professionals. When my oncologist laid out a treatment plan, I didn’t argue, although when offered a choice between an effective targeted therapy versus an even more effective but also more toxic one, I opted for lower toxicity.

For me, it was a quality of life issue. If I’m “cured” of cancer but end up with severe heart problems…well, I’d rather take my chances with a less damaging option.

Cancer still remains life-threatening, now as it did decades ago. The difference is that patients are living longer and some go completely into remission. Survivorship should be considered a factor when designing a treatment plan, as should long-lasting repercussions of side effects.

So if I had one request of oncological health teams, it would be that they look beyond simply bombarding the cancer and consider the physical and mental condition in which they leave the patient, being sensitive to the possibility of ‘overtreatment’ in their exuberance to squash as much of the disease as possible.

Should you use a sledgehammer when a rubber mallet might be sufficient? Is “just to be sure” a justification for side effects than can compromise your quality of life, however long that is?

It’s not always easy to find that sweet spot between acceptable risk and tolerable side effects.

There is no “right” answer to this as everyone’s situation and risk tolerances are different. So if I could have a second request of the medical community, family and friends of the patient, it would be that they respect the limits and decisions of the one who’s going through this.

To be able to weigh the risks and decide what’s acceptable and where to draw the line — that might offer at least a semblance of control in the crazy roller-coaster ride that is cancer.