Cancer Care - Reflections From A Caregiver

by Miguel Barron

In 2019, I published a book entitled The Boxer’s Corner. The book was a semi-real time account of my experience as a caregiver during my late wife’s battle with metastatic cancer. In the book I recount the pain, frustration and isolation I felt in my role as husband, father and caregiver during my wife’s agonizing battle.

Cancer Care  Miguel

But in addition to the human component of our experience, the book also touched on a number of issues relating to her treatment that I believe exposed shortcomings in her care.

Let me clarify. We were very fortunate to have the medical care we did, and I am in no way questioning the pedigree or professionalism of the many health care specialist we encountered. But there were specific instances in our experience that I believe should be shared with other cancer patients and caregivers, and indeed with the medical professionals who strive to improve the care and comfort they provide their patients.

Some of the more technical issues regarding her care are addressed in the epilogue of my book, entitled “What If?”. The more intangible issues relating to the communication and interpersonal experience itself are described in the body of the book. But let’s begin with some of the medical issues.

Cancer Care Miguel's Wife

It is well documented that the single most important weapon we have against cancer is early detection. My late wife had her breasts checked every year—but skipped one. Fatefully, it was the year she developed the disease. The five positive lymph nodes we uncovered during her mastectomy and subsequent auxiliary dissection told us we were late in our detection of the disease. This will always be the principal culprit of our ultimate outcome. But other issues may have also come into play and deserve mention.

The first surgeon we consulted - and who conducted the biopsy of Nadia’s original tumor - advocated a treatment called neoadjuvant therapy. She was a younger doctor who insisted neoadjuvant treatment was a newer form of treatment and the way forward in breast cancer care. Under this regime, chemo is administered first, to see if the tumors react to the specific chemo agent used. The surgery itself (the mastectomy) is conducted afterward, once the doctors are confident they have the most effective chemo agents to combat the disease. Our second surgeon however, whom we would eventually stick with on the basis of her reputation and greater experience, advocated traditional adjuvant treatment. Under this treatment, the breast is removed first, and the chemo is administered afterward.

Cancer Care Miguel 2

In retrospect, this may have been a mistake. After Nadia’s cancer recurred, I asked our oncologist how the cancer could have possibly returned so quickly (it returned only six months after her treatment). Her response: “It was the wrong chemotherapy.”

So, maybe the neoadjuvant approach would have made more sense. What if we had tested the first chemo regimen (AC-T) on the tumor and saw there was no reaction? Then we could have tried other agents until we found one that worked. With the traditional adjuvant treatment, we never had that option.

Then there is the issue of the all-important hormone receptors. Nadia was initially diagnosed as triple negative using a test called IHC (immunohistochemistry). About a year later, after Nadia had finished her chemotherapy, her oncologist decided to test again using a different method, called fluorescence in situ hybridization (FISH). The FISH test is used less often by hospitals, because it is more complicated and more expensive. But it is known to be more accurate. 

When the FISH method was finally used, she actually expressed slightly for HER2 and ER. This means that we could have used some targeted hormone therapies in parallel to the chemo all along. But we didn’t, because we only used the IHC test at initial diagnosis, which didn’t pick up on the HER2 and ER expressions later detected by the FISH test. What if the FISH test had been run from the beginning? Would they have been able to use a targeted hormone treatment in addition to the chemo? Would it have worked?

Cancer Care   Miguel 3

Again, we were privileged to have access to the medical resources we did. The doctors were excellent, and the level of service throughout was exceptional. But it is difficult to ignore these questions as I look back on her treatment.

The issue of doctor/patient and doctor/caregiver communication also warrants mention. And there are three specific aspects of our communication with doctors, or should I say, their communication with us, that I believe unnecessarily burdened our experience. Firstly, and as I describe extensively in my book, there always seemed to be a discrepancy between my wife’s condition as documented in her various tests, pathology reports etc., and what the doctors were actually telling her. I understand doctors want to keep patients in a positive state of mind. But my wife’s understanding of her own condition was impaired by this constant need to spin everything in a positive light. This was exacerbated by the fact that my wife was in semi-denial throughout her treatment. Her way of coping with her condition was to close her eyes, avoid reading her own reports and hold on to any positive feedback anybody would volunteer. The doctors’ need to constantly “stay positive” made it harder for my wife to come to terms with where she really was. Meaning the burden of catching her up to reality was left to me.

And this feeds into the second communication issue we encountered. Whether at our first or second clinic (both highly reputable), it never seemed to us like the doctors had any interest in listening to me, the caregiver. This is not to say that doctors should not focus on their patients and the feedback they provide, they should. But all patients are different. Some patients may be deeply involved in their own condition and will provide their doctors with an honest depiction of how they are feeling and/or reacting to certain medications. But others, like my late wife, wanted to believe things were better than they were. This would compel her to answer doctors’ questions in a misleading way, always painting a rosier picture than was really the case. 

In these cases, I believe doctors should refer to the caregiver for verification. Surely, doctors should notice if a patient is trying to delude herself, no? And if so, why not consult the very person who was with the patient 24/7? If anybody could attest to the patient’s real clinical condition (how a patient looks and feels) it would be the caregiver, right? I cannot shed light on why our doctors would choose this course of action. But for whatever reason, I never felt like our doctors were interested in my input.

Finally, I also believe our doctors could have done a better job warning us of some of the effects of Nadia’s various procedures and medications. As I describe in detail in my book, each of the procedures she underwent (mastectomy, auxiliary dissection, chemo, radiation, etc.) turned out to be considerably harsher than the doctors had conveyed to us. I understand they did not want the patient to feel apprehensive or afraid ahead of a procedure. But we could have benefited from some advance warning of the real effects of each of these.

Similarly, we were never warned of the effects of some of the medications Nadia was administered. Towards the end of Nadia’s care, when she was extremely weak and we all believed the end was near, the doctors administered a steroid called Dexamethasone. We assumed the steroids would help her in some way, but we had no idea the extent to which they would revive her. We went from planning to call relatives and seeing her barely capable of getting out of bed, to magically seeing her walk around, laughing and chatting. This lasted for weeks. Of course, this was wonderful news to us. We were able to enjoy a few extra weeks with her, for which we are forever grateful. But it was extremely confusing. People expect a cancer patient’s progression to be linear, to either get better or go from bad to worse. Not to magically rebound when the patient looked to be nearing her end.

They also neglected to warn us of the side effects of the steroids. While they gave Nadia the strength to suddenly rebound, which was of course a blessing, the incremental dosages she took also led to violent and unpredictable mood swings. She would become extremely irritable and irate over the smallest thing (“Roid Rage”, as they call it). Of course, we learned more about this subsequently, through research of our own. But we could have certainly benefited from a warning or “heads up” from our doctors.

As I look back on our experience, I can say once again that we were very grateful for the care we received. And none of what I recount is to say others may not have a very different experience. But the more one learns and hears, the better prepared one can be for the brutally difficult journey cancer patients and their caregivers face. To those of you out there embarking on this difficult journey, I wish you much strength and love.

Editor's Note: Miguel is giving away 10 copies of his book "The Boxer's Corner". To get your name in the drawing box just share this article and leave a comment saying where you shared and that you would like a copy. 10 names will be drawn as winners. 

The Boxer's Corner Book Cover

Bio: Miguel Barron, CFA, is a retired investment banker living in Los Angeles with his two sons, having retired following the passing of his late wife. He began his career in 1992 as an investment analyst at the Abu Dhabi Investment Authority, based in Abu Dhabi. In 1995 Barron moved to London and later New York, where he would work on the international equity desks of prominent investment banks, including Santander, Robert Fleming, BT Alex Brown, and most recently UBS. A graduate of the University of California at Santa Barbara, Barron holds a master’s degree in international economics from the Johns Hopkins School of Advanced International Studies. He has been a CFA charter holder since 2001. Barron is the founder and managing partner of US Traveler Assist, a global network of former senior US Embassy officials assisting US travelers abroad. The Boxer’s Corner is Barron’s first book.

He can be reached at miguelbarron@theboxerscorner.com. The book website is www.theboxerscorner.com

Cancer Care   Miguel Family

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