I am done

It’s the fifth time I’m bucking the advice of my oncologist.

I’ve already shared in this online journal about the time when I questioned the dosage of herceptin, when I insisted to remove Benadryl from the pre-infusion list of drugs, when I had to push to have him agree to my getting a portal catheter inserted, and when I freaked at the cost of the hormonal therapy he prescribed.

Now I’ve decided not to complete the full 17 sessions of herceptin (generic name: trastuzumab) infusions. I’ve already done 10.

I wouldn’t blame you if you’ve concluded I could be the patient from hell.

But hear me out. And then tell me what you think.

The best patients are the worst patients. Nudge, nudge, nudge. Don’t sit back and accept anything that fails to satisfy you. Speak up, protect your interests.

Claire Fagin

As I’ve written before, the biopsy done after the lumpectomy surgery last September revealed that the tumor in my breast was a triple positive cancer, meaning estrogen-receptor-positive (ER+), progesterone-receptor-positive (PgR+), and HER2/neu-positive (HER2+). My anti-cancer treatments to date have included breast and lymph node surgery, chemotherapy, inserting a portal catheter, radiation, and 10 herceptin infusions, and I’ve started daily hormonal therapy. Details aside, this entire program, although monstrous, is clearly the prescription in the current state of medical science.

To the credit of my oncologist, he has, in each instance of my pushing back, stated his position, then left it to me to decide.

My job as a physician is to make sure I have provided my patients with the best options to make the decisions that affect their lives.

Ami Bera

Today I’m focusing on the HER2+. In simplest non-medical terms, HER receptors are normally good guys; they are genes with a code for a protein that our cells need to regulate normal cell growth and to stay healthy. Trouble in the body begins when the gene mutates, becoming either under- or over-expressed.

In my case, it’s the second. Being HER2-positive means the receptors have become like bunnies in spring, reproducing cells uncontrollably and resulting in a cancer tumor. Herceptin works by targeting HER2 receptors directly and stops them from entering cells, so they can’t divide and duplicate.

Now I get to the part on which the science is contested: whether 6 months of infusions are as beneficial as the current standard therapy of 12 months.

A large 2018 study concluded that 6 months was enough. Later meta-analysis questioned the statistical conclusions of that study and recommended that until further studies were undertaken, it was safer to stay with the 12-month regime. I’ve linked to two of several studies, if details interest you.

Yet when I read the absolute numbers, I’m thrown right back to my thoughts on statistical averages. There is less than 10% difference in 10-year survival outcomes between the two groups of subjects studied (6 vs 12 months). In both cases, for women like me, in stage 1, non-lymphatic, and triple-positive, the chance of being alive and disease-free after a decade was in the 80%-range.

Where my unique body will take me is anyone’s guess. 80+% does sound hopeful, so the odds are good for continued health. And the reason I agreed to any treatments at all.

But I could be wrong—I could also be in that 12-18% group who don’t make it far. And that’s whether I get the full 12-month course of infusions or not. It’s a crap shoot.

So, what can’t you take? Decide which of the two options is harder, and do the other. That way, no matter how hard your choice turns out to be, at least you can find comfort in knowing you’re avoiding something even worse.

Josephine Angelini

What irks me more than anything is that there are no testing procedures available (now or later) to determine whether, after all the treatments, my (or anyone’s) HER2 receptors are still faulty or back to normal.

There are two other concerns that have led me to decide not to continue the prescribed herceptin treatments.

While I tolerate the drug herceptin well and experience no evident side-effects, one concern I have is the notable risk of heart muscle damage. On my own initiative, I had a 2D echocardiogram test done some months ago, shortly after I learned of the risk. It already revealed the onset of valve regurgitation, meaning a valve does not close completely between heartbeats, making blood in the aorta flow back into my heart. A cardiologist read the report and told me this condition was common for a woman my age and not yet alarming.

So, my thinking is, why do anything to encourage further heart weakening? An event last month reinforces this thought. While I was in the Cordillera mountains, a short 30-minute climb up a hill made me breathless, with my heart palpitating so furiously I had to stop and sit to let my heart slow down several times. Not good, methinks.

Another concern: should one’s financial condition affect medical decisions? Maybe not, but the stark reality is, at least for many patients globally without full medical coverage, they do. Even the medical research admits this.

In my case, our limited budget has definitely played a part in how I’ve responded to treatment options. My life has been rich with relationships and experiences. Of material wealth, I can say, with a full measure of gratitude, I’ve had enough. Having modest material demands helps. Yet our work efforts over the past decades, however satisfying, did not translate into a monied bank account.

The cost of all the anti-cancer interventions has been onerous for us. This medical regime has put us out-of-pocket in the tens-of-thousands of dollars for tests not covered by my medical insurance or for co-pay requirements. For example, my cost for each herceptin session is nearly US$500. To some, that’s not much; to many others it’s a fortune.

I must mention a handful of compassionate friends who, without being asked—they were curious enough to ask—have contributed to my health kitty. Feeling truly blessed. Their loving generosity has moved me intensely. They helped lessen a severe financial burden.

Maybe we must all give up trying to pay back the people in this world who sustain our lives. In the end, maybe it’s wiser to surrender before the miraculous scope of human generosity and to just keep saying thank you, forever and sincerely, for as long as we have voices.

Elizabeth Gilbert

There you have it; I’ve made yet another decision. I made it with a critical eye on the evidence, with a realistic eye on our circumstances, and mostly with a large dose of self-compassion. Now wish me some luck.

What do you think?

23 comments

  • I think your reasoning and logic and decision-making is valid and practical and well-thought-out. The older I get, the more I appreciate having the ability and drive to listen, research, and make decisions regarding the health of my body, which I regard as an amazing entity. Us human beings continue to strive to “know it all”, but we don’t. Thus we take what we know at present and make the best choices that we can. Like in all of the other aspects of our living.

    Love you.

    • Yes our bodies are amazing and unique… making it hard for the medical professionals–or even ourselves–to know what’s right for each body. Sigh… we just live life to the fullest. 🌸🙏🌸

  • Francisca, I applaud your research leading to this next choice of action. I am reminded that health does not follow any linear study no matter how many times we are told to believe this is the only way. We can choose to know and experience other ways too 😊

    • Thanks for your care and support, Alison. Nothing in life is guaranteed, so we can only live it to fullest with whatever conditions we are given. 🌸🙏🌸

  • Dear Francisca,

    I have followed this health journey you have generously shared with us and I have learned so much. Your decision to stop is good and valid because you are the one who knows your body intimately. That you chose stop to protect your heart is a wise decision based on solid research and intuition about your body. This journey has brought you so much wisdom and you have shared that with many people. Grateful for you. And will continue to pray for your healing.

    Gayle

  • Medicine prices need regulating globally. The cost in Canada of herceptin appears to be almost 1/3rd the cost below the border. I am all for India producing medicines at affordable costs. Western pharma says it needs margins for research, which is sort of like sacrificing people today for people tomorrow (er, profits?). There must be a middle ground somewhere–government subsidy for research?

    • I couldn’t agree more, Jill. While I understand that governments do fund a lot of medical research, they can and should do more. I’m sure there are many individual researchers who are dedicated to their work for the benefit of humanity. But it feels to me that the pharmaceutical business has lost its mission and is overly profit motivated. In the interest of public health, I concur they need to be regulated, especially in their pricing. They’ve got many ill people by the short and curlies (to wit, diabetics/insulin and cancer/hereptin) and that’s just not right. 🌸🙏🌸

  • I think you have made wise and informed choices along the way. Including this time. The palpitations may well be telling you it’s time to give your body a break and let it heal from the treatments. Having had a heart murmur since birth–I will remember this conversation if I ever need cancer treatment.

  • Francisca, I understand your decision and I still lean towards quality of life and not statistical calculations of what may or not happen in the future, of which I have no power or control over. Your journey has made me reflect on my own regarding whether I ever want to go through the large infusions of prednisone and daily oral Prednisone treatments, just to have a little central vision. This last hospitalization the Drs decided with my consent to do a double treatment. What a mistake! The side effects are overwhelming some days. The medication caused my body to become diabetic, weakened immune system, moody, night sweats, migraines, fever, nose bleeds, weight gain, and general malaise. I have decided that blindness will never be as bad as the side effects of the steroids. As soon as I am weaned off the steroids, I will allow my body to do what comes naturally. Quality of life is what I seek, not a cure, or a promise, but the ability to move forward without reservation. I enjoy being with others and sharing laughter, smiles, and a tear once in awhile. Your site has been my journey too along a different pathway. There were times I could read it and other times I could hardly see the screen and yet it gave me hope because I knew you were there. The inner volume of your wisdom is clear and precise. I love you!

    • I love you, too, Helen. 💜 My heart aches for what all you are going through, my dear friend. And yes, yes, yes… life lived to the fullest with whatever capacities we have. I still hope we get the chance to laugh and cry together in person one day. 🌸🙏🌸

  • They don’t call it a ‘practice of medicine’ for no reason. Doctors ‘practice’ sometimes with egos so great they can’t see wisdom staring at them from behind their spreadsheets. And it is that wisdom I have watched you seek, and listen to, along this whole journey. Walking into the unknown with your mindset of living life to the fullest and then sharing it with the world gives us all a model of how we as patients can ‘practice’ medicine with miraculous results. Thank you.

  • Your journey has been long and not without challenges. Each step of the way you paused, considered, researched and made your choices. You are a very smart person. I applaud your tenacity and willingness to be a proactive partner with your doctor. I think you are making the choices that are right for you. No one can say for sure what they would do, until they are in the situation. You have my prayers for a positive outcome and many more happy, healthy years!

  • Hope and luck are the two least things I’m sending your way and heaven knows how much I’d love to just set you up next door with your medical expenses covered!! As you explain it it makes sense and I appreciate the poison of opinionism (is there such a term?) that is biased and objectivity of science as “neutral” guidelines in medicine. Listening to your body and heart are important factors always to a happy and healthy life in so many ways of navigating this! 💗

  • As a healthcare professional. Patients need to do their own research, listen to their doctors opinion and make a decision that will work best for them.

    Sounds like you’ve done that!

    • Thanks for your words of support, Ellen. Now I just cross my fingers and continue living my life to the fullest. 🌸🙏🌸

  • I hate it when Filipino doctors say ” it is normal for your age”.
    Here at age 60 you are considered old. Being in the Philippines for more than two decades I almost believed it.
    My German doctor had harsh words for the two Filipino surgeons who adviced me against operation due to my “old” age.

    Several years back I did a general health cbeck and obviously things were far from perfect.
    Again the doctors said I was ok for my age 🤬

    What I see in Europe is that through top notch healthcare & prevention people of above 80 are still going strong. Those are not a few exceptions anymore.
    My experience with German healthcare made me realize that I indeed live in a third world country.

    As of your decision to alter the usual protocols, I can only hope you took the right decions. 🙏

    • It’s funny that the cardiologist wasn’t far in age behind me. And yes “for your age” is a poisonous phrase. I recently read an article busting myths about age and the one sentence that stuck out to me was, “Thinking ourselves old is a self-fulfilling, dangerous prophecy.” Since I do NOT think of myself or my honey or you as old, I’m pretty safe. I’ve been telling you that health in senior years is no longer the exception and I’m glad you finally see it my way. 😅 So, let’s stay healthy, fit, and happy. We know what to do. 🌸💪🌸

By Francisca

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