This is particularly worrisome for me as a survivor of triple-positive breast cancer, as there is a greater chance of that type of cancer metastasizing to the brain. Presumably, a growing tumor could restrict blood flow to areas of the brain that could result in me seeing strange things.
This was of great concern to my ophthalmologist. However, there was no pain associated with the auras, and pain would have been expected (but not necessarily required) if the auras were caused by a tumor.
There were other confounding variables, too. Since the summer of 2024, shortly before my father’s death, I had noticed that I was doing a lot of involuntary “sighing”. I’d experienced this type of sighing before, but this time it kept going for months, sometimes occurring a number of times an hour.
Naturally I googled it, and Dr. Google pointed out that excessive sighing was potentially associated with undiagnosed anxiety and depression. When I finally started writing out all my stressors, it because obvious to me that I had been far more deeply affected by what was going on in my life than I imagined.
So, after my appointments on Nov 22, I took time to grieve my father’s death, which I hadn’t done up to then. I thought I had accepted his passing and moved on, but clearly I hadn’t. I sought hugs and solace from family members and expressed what I was feeling.
My last aura was on Nov 29th. After that, along with allowing space for grief, I expanded my time in meditation, added up to an hour of breathwork a day and even included a daily cup of ceremonial-grade cacao (for the theobromine).
Mindfulness took a front seat. I paused at various points of the day to simply take deep breaths. I paid attention to what my body was doing and what thoughts were running through my mind. I made a concerted effort to show compassion to myself, more than I had in a long time.
The auras did not come back. As of this writing, it has been 45 days since the last aura. I had been having them once a week, and at their worst, a couple a week and even two on one evening.
I am well aware of the power of the mind. My educational background is in graduate-level psychology and I myself have experienced psychosomatic pain before. But honestly, I never expected to have such a striking response to anxiety/depression/grief.
I have searched for a good visual representation of an aura and it’s hard to find one that actually reflects what I was experiencing. It was something like this:
This is not exactly what it looks like for me, as some of my auras have been “thicker” and more “stained glass-like” in color, looking more zigzagged (as if the entire half-circle is made up of triangular pieces of vividly bright LED-like colors). Also, mine were gone within about 20 minutes.
That’s not an insignificant reaction to something that is going on in my head. My brain created those auras. That is amazing.
I should mention, I never had an MRI so technically a tumor cannot be ruled out. And neither can some other cause that I have not considered. However, the fact that my auras stopped after I put concerted effort into exploring my anxiety, acknowledging depression and recognizing that I was not okay with the pressures I was under suggests that it’s probably not a tumor.
I won’t lie, I have mixed feelings about the color pink these days, along with October’s “breast cancer awareness” paraphernalia popping up in stores, in promotions and all over social media. Some of us don’t need the reminder that breasts get cancer.
Breast cancer is probably the most popularized cancer there is, and I’m willing to bet that’s in part because there is a giddiness associated with yelling “SAVE THE BOOBIES” and not getting into trouble for it. It is also the most funded cancer (McIntosh et al., 2023, Lancet, for example) but to be fair, also one of the most common.
So you would think that by now I would be very accepting of all the pink ribbons on yogurt and fizzy drinks and whatnot. But amidst the rah-rah, October also brings with it the memories of feeling very alone with my disease. Once the chemo and radiation were done, I found myself wading through a new phase of life that I wasn’t prepared for.
This is a reminder to myself that it is a privilege to be here griping about October being so pink! (Photo by Angiola Harry on Unsplash)
I thought I was “done”. And so did everyone else. But dealing with continued Herceptin infusions along with an uncertain future of endocrine therapy frustrated me because I felt I still had an excuse to feel crappy, but no one else thought I did.
And even with that frustration, I have a lot to be grateful for.
All the pink stuff and smiling faces have been so important in bringing so much generous funding to breast cancer research, which has resulted in great strides being made. There are other cancers that are painfully underfunded (for instance, pancreatic cancer, which also has high mortality rates), and I would be lying if I said that I didn’t feel some guilt about that. I cannot gripe about all the pink too much, because I am the beneficiary of all the money that has poured in.
Specifically, my triple-positive breast cancer was actually considered quite aggressive, but research resulted in new pharmaceuticals that have de-fanged that type of breast cancer and resulted in high survival rates. Even my oncologist remarked that he couldn’t remember the last time a HER2-positive patient of his suffered a recurrence, and he’s in his 70s. That says a lot.
So it seems disingenuous of me to lament all the screaming pink at the store. It seems equally disingenuous of me to wonder how much cancer took away from me that I would still have right now. Because one thing it didn’t take away was my life, and not everyone is that fortunate. Remembering that puts everything into perspective.
A little over a week ago, I had another oncological appointment. This one marked my six years since completing chemo for triple positive breast cancer.
Honestly, at this point, the conversation between my doctor and myself has turned much more social. There are not as many pressing matters to discuss. My bloodwork is normal and boring. I don’t have side effects to speak of, at least not any that I can attribute solely to cancer treatment (hello, menopause, ugh). And even my oncologist is openly positive about my future.
Wow, have things changed.
Six years ago I was dealing with the effects of a nasty fingernail infection that landed me in the ER (be forewarned before clicking that link: it was pretty gross!). But for this appointment, I was asking my doc how HE was feeling.
Our conversations have become pleasantly mundane and I enjoy catching up with him. Also, I am panicking less.
As a cancer survivor, I do not like surprises. When my doc says to schedule an exam, I’m going to do it fast!
Much less. Even when I do lapse into micro-panic, I have accompanying moments of calm. That is a definite improvement. At the same time, cancer is cancer. So when my oncologist noticed that I hadn’t had a pelvic exam this year, he told me I needed it. And then before our appointment ended, he repeated that I should get one.
For a brief instant, my emergency alarms went off.
Maybe it was the fact that he repeated himself and seemed very serious about it. After six years of hypervigilance, I still get unnerved by slight shifts in tone of voice. I think that’s hard-wired in me, seared in via anxiety, even though my days of being a hot stress-mess are behind me.
It’s so tempting to wipe my hands off and pretend that everything is normal, but cancer teaches us that some nasty stuff might be lurking under the surface of, “I’m sure it’s nothing”. My days of innocent ignorance are gone.
So, yeah, I’m fine. Still no recurrence of a cancer in my breasts. Probably not anywhere else either. I’ll remain optimistic and look forward to seeing my oncologist in six months and chatting again.
As we close out October, otherwise known as “Breast Cancer Awareness Month”, I wanted to share a video of a webinar about advances in the fight against breast cancer, offered through the Yale Alumni Health Network, led by Dr. Jamie Wells.
The speakers included Dr. David Mankoff (from UPenn) and Drs. Lajos Pusztai, Maryam Lustberg and Eric Winer (all from Yale) as they talked about research being done on hormone-positive, HER2 receptor positive and triple negative breast cancers. I’ve pasted in the Vimeo clip from Twitter, but also offer my simplified synopsis below. If you have the time to watch (~45 min for the talks, then interesting Q&As for about 20 minutes), I highly recommend the video!
— YALE ALUMNI HEALTH NETWORK (YAHN) (@YaleHealthSIG) October 28, 2022
In the midst of the discussions, it was heartening to hear that the doctors placed a lot of emphasis on both health disparities in different populations and also the search for treatments that would not severely impact a patient’s quality-of-life. These are two important topics. I appreciated that they acknowledged that we cannot make advances in the disease if we are leaving behind large numbers of people for whom treatment is inaccessible, and that a treatment is not viable if it successfully treats the cancer but damages the patient in other ways.
The best overall news is that since 1990, deaths from breast cancer have decreased by a third. That’s a significant improvement within the past 30 or so years, even though the prevalence of the disease is increasing. Dr. Mankoff noted that the survival rate improvements are due not simply to earlier detection, but also to advances in the treatments.
HORMONE-POSITIVE BREAST CANCER
Dr. Lustberg spoke about hormone-positive breast cancers and started with a quick explanation of the history of such cancers, and then explained how current-day personalized medicine (genomic profiling) can identify the patients who might be spared chemo based on the characteristics of their tumors, and how targeted therapies improve survival rates. She experienced some audio issues towards the very end of her talk, but not much information was lost.
She acknowledged that the “most effective drug is one you can take”, stating that there’s been an effort to try to understand the toxicity of various treatments. If the drug’s side effects are too negative, patients will have a hard time continuing to take it. She noted the importance of keeping the patient involved in the decision making process, something that all of us who have been through this can applaud. It’s too easy for oncologists to forget that they’re treating a human being who will be dealing with the concequences of heavy treatments.
HER2+ BREAST CANCER
Dr. Winer discussed HER2-targeted therapy, noting that prior to the year 2000, it was considered one of the most aggressive forms of breast cancer with common recurrences, after which the prognosis for survival was poor. As a HER2+ cancer suvivor, I am so thankful that this is no longer the case! The landscape changed with the introduction of monoclonal antibody drugs such as Herceptin, and the development of additional drugs, should Herceptin stop working, has given patients with this type of cancer much more hope for a full recovery.
Two of these new drugs for metastatic HER2+ cancer are “antibody drug conjugates” (T-DM1 and trastuzumab deruxtucan). Dr. Winer described them as Trojan Horses, as they can deliver the chemotherapy with which they’re paired directly into the cell, greatly decreasing side effects to the patient.
It’s so refreshing to hear the words “cancer” and “cure” used together in the same sentence. We are making serious progress now!
Perhaps most important, Dr. Winer actually used the word “cured” when talking about the outcomes for early stage HER2+ cancers, something that is truly remarkable. This is especially true for women with stage I cancers.
Many patients with stage II & III cancers receive the drugs prior to surgery, which can decrease the need for mastectomies and complete removal of the lymph nodes. In addition, pre-surgical treatment can guide the medical team in adjusting later therapies, based on how the tumor reacts to early drug administration.
Finally, Dr. Winer spoke of the stark disparities in cancer care, noting that black women are twice as likely to die from breast cancer as white women. Eliminating these disparities is his number one-rated area of importance for where to focus future efforts, something I strongly support.
TRIPLE NEGATIVE BREAST CANCER
Dr. Pusztai spoke of Triple Negative Breast Cancer (TNBC), and having lost several friends to this specific type of cancer, I was very interested in treatment advances that have been made. He described the differences beween TNBC and hormone positive breast cancers, noting that it’s likely that these two diseases orginated from completely different cell types, suggesting that these are different diseases and should be viewed as such.
It was exciting to learn that most of the patients with early stage TNBC disease are able to be cured (again, that beautiful word!). We now have both better treatment strategies and new drugs, and success rates are improving year by year. Dr. Pusztai emphasized the benefits of completing chemotherapy prior to surgery, going against our strong impulse to “get the cancer out” first. With the drug-first strategy, medical teams can adjust the post-operative treatments as needed.
The thing that was so amazing to me was that the recurrence-free rate of survival was 85-90% with these “modern regimens” for early stage disease. That’s impressive!
Next on the horizon is fine-tuning the right balance of drugs for patients, given that chemotherapies are still toxic.
There’s still a lot to be done, but all of this makes me feel so hopeful for a future in which a cancer diagnosis is something that we don’t have to fear.
Dr. Pusztai stated that he felt we already have the drugs with which to cure “at least some” of the metastatic TNBC patients, especially for those who are diagnosed at stage IV (rather than having earlier-stage disease that was treated and later metastasized). The idea is to utilize existing drugs but apply them using the new treatment strategies that have been developed. However, Dr. Pusztai stressed that new drugs are also being developed.
Q&As
There were a range of excellent questions that began at about the 45-minute mark, but as mentioned above, I enjoyed hearing the admissions by the doctors that they considered quality of life to be a very important factor in whether or not to continue medications, and they acknowledged that it is the patient who should have the control to balance their risks against their treatment options. Other questions included recurrence in hormone-positive cancers, development of drug resistance, genetic testing, continuation of care (“risk-stratified follow-up care”) and second opinions.
Dr. Winer commented that within a decade he felt we will have all the treatment we need to prevent and cure breast cancer in most patients, so again, he stressed that the focus must turn to making that treatment available to everyone, regardless of who they are.
LAST BUT NOT LEAST…
Dr. Winer admitted that many doctors, in treating patients, end up “taking over people’s lives and medicalizing their lives”. His approach, therefore, is “to try to provide therapy without making someone either unhappy or feeling like they are attached with a leash to their doctor’s office.” While there was some discussion related to this, I appreciated that doctors are actually thinking about this and want to allow patients to “live their lives”.
Finally, I was amused by the doctors’ admissions that even they found the drug names to be unpronounceable. It’s true that in my own treatment, I usually stuck to the easiest name to pronounce…I can’t imagine having to use those names on a daily basis!
Frantic Shanti 