When I was first diagnosed, my response—other than to turn the whole cancer nightmare into a research project—was to cry, “Nuke it! Nuke it! Nuke It!”
I had the Valkyrie response: “Kill the wabbit! Destroy that cancer! Do everything!”
I wanted, want, to survive for my kid, my husband, my pets, my family, my friends, and yes, myself.
And yet, on the other side of what I hope is my first and last go-round with cancer treatment, I have a more mature appreciation for all the side effects that cancer treatment inflicts. The mouthsores and chemobrain are gone, but I still have less energy than I used to have. I need more sleep, 9 or 10 hours a night, to function effectively. I’m done by 9 p.m. I know that both the Herceptin and the radiation that I received may lead to heart damage down the line (though my echocardiograms have been good so far). Every day, I have cramps caused by the Tamoxifen that blocks my body’s ability to use the estrogen that was candy for my tumor.
One of the things that I think patients find the most frustrating is that, while we’ve come a long way, much of our treatment decision process comes down to the culture of our hospital and our doctors, and our personality, our tolerance of risk. It’s all an educated guess. There’s data, sure, but not nearly enough.
So it was interesting to note a “Science Daily” story today that suggests that, in some cases, less may be more when it comes to breast cancer.
Here is a summary of the main points, from research at the Seattle Cancer Care Alliance:
• Spare the chemo but not the cancer.
Thanks to the Oncotype DX test, which analyzes a panel of genes linked to tumor recurrence, nearly 50 percent of women with early stage, estrogen-reactive cancer can skip the chemo and go straight to hormone therapy. Alas, my Oncotype score was too high to get a pass, but I’m happy for the half of my fellow pink sisters who avoided chemo.
• Use PARP Inhibitors for triple negative cancer.
For the 15 to 18 percent of women who have “triple negative” disease—that is, it doesn’t react to estrogen or progesterone and it doesn’t express the Her-2 protein—there may be hope for treatment with PARP Inhibitors. These drugs prevent the tumor DNA from repairing itself, leading to cell death.
• Spare the radiation but not the cancer.
If the cancer recurs in my left breast, the standard treatment would be a mastectomy, because I’ve reached my lifetime limit of radiation in that breast. SCCA is experiment with another solution: a second lumpectomy followed by five days of radiation delivered only to the tumor bed.
• Spare the lymph nodes but not the cancer.
Today, if they find cancer cells in the lymph nodes under your arm, they usually remove a lot of them. This can lead to painful lymphedema, or swelling of the arm. But SCCA did a study that showed that early-stage patients who had only only one or two positive lymph nodes removed did just as well five years out as those patients who had many nodes removed.
If I ever face a recurrence, it will probably be difficult for me to resist responding aggressively. And yet, what’s the point in using a sledgehammer that knocks me out? What do you think?
My Left Breast 
My story is not much different from yours. What struck me was when I was diagnosed with stage 2 breast cancer I was feeling great – I want to say healthy but obviously if one has cancer one is not healthy, yet I was 60, newly retired, energetic, no aches, no pains, stressless, learning to play golf and wanting to learn tennis as well expanding my walking program to include some hikes in the wonderful place I live. Now a year a later, with the full course of treatment under my belt, surgery, chemo, radiation and now tamoxifen – I am reminded of my illness daily with various side effects – some the same, some different from the ones listed. I try to keep my head up and my eyes forward, eating well, exercising gently and spending time with family, grandkids in particular, waiting for the day when the sense of well-being returns. That above all is what I miss!
Hey there. This really resonates. I’m in the throws of a 2+year aggressive battle with stage IV colon cancer. Friday, I start the last approved drug and it’s going to be a weekly protocol. I used to be active and have lost energy to keep up with my friends. I continue to work full-time and try to have space to live life with those I love. I get in walks here and there, but when the choice is rest and painstakingly exercising, it’s easy to choose rest. I also ruminate the strategies for tackling the disease. When to go aggressive, when to lighten up, when to go with the flow. I’m just now coming off a 4 month break and had the time of my life…finding normalcy again, took some trips and upended my entire nutrition regimen. In that time the disease grew by 40%. That’s pretty hefty. Friday i’ll be tethered to the drip once again, and keeping faith that it will work, but I gotta tell ya, that 4 month break was so worth it. Blessings, love and light to you all.
Heather Millar, you are one in million. I recently found your blog and am fortunate I did, you are someone breast cancer patients can look up to, and the knowledge you impart can give them a head start, should they wish to go down that path. Some do. Some don’t. I had breast cancer 30 years ago, refused treatment except surgery; oddly, I refused removal of all my lymph nodes, I allowed removal of several. I had another breast cancer on the other side diagnosed in early 2011. This time, after sentinel node biopsy, I again refused to allow removal of more than a few. The doctor took two, both were positive. My cancer is similar to yours, HER2neu+, PR-, ER+. Mine is stage IIb; I had two tumors, so lumpectomy was not an option. Again, I refused radiation. I also refused cytotoxic chemo. I opted for a clinical trial I found, herceptin only for women over 60. I was 62 when I entered the trial; my last herceptin only infusion was mid-2012. Two weeks ago, about 8 months post infusion, I was told I am clinically cancer free, all tests clear. Again, a lucky woman. I am hopeful that it stays that way and that the clinical trial, which takes out the cytotoxic chemo element, will demonstrate that sometimes “Less is More.” Time will tell. I was very healthy throughout all of it. No heart problems (I am not overweight, which is a big contributor to heart problems) and no other problems with a year of herceptin. I started with an aromatase inhibitor that unfortunately threw a curve ball at my good health – I now have developed tenosynovitis in my hands, which can be crippling. I am hoping that it will get better. When these symptoms appear, the patient should be taken off the drug and put on another, but my doctor did not do so. My new doctor is putting me on tamoxifen (post menopausal women can now take it) and after six months I’ll go on another aromatase inhibitor. Our stories are somewhat similar. Who knows how “Less is More” will turn out historically? I took some risks and hope that it will help others. In the meantime, cytotoxic chemo can certainly cause quality of life issues and every day, I am thankful that I didn’t have to go through it. Maybe at some point. I found a vaccine clinical trial for HER2+ patients, but I missed their eligibility requirements by 1.5 months – I guess that means: 1-6 months post treatment or die! I say that lightly, but it is another topic for another day – the rules regarding treatment very rarely include any leniency. One day, with personalized treatment, that will go away. Again, Heather, you are an inspiration, your thoughtful, well-written and insightful blogs are like watching a rose bloom in timed lapse photography. I wish that many years will be bestowed upon you.
My opinion of “less is more” is complicated…I first had a lumpectomy and 6 weeks of radiation to treat my breast cancer. Then I went on Tamoxifen, which I’ve been taking for 3.5 years so far. After my initial treatment I found out more about my odds for a 2nd breast cancer and came to the conclusion that it would have been better had I gotten a mastectomy and avoided the radiation altogether. I cannot reverse the radiation but I did make a difficult decision: to have a prophylactic double mastectomy this past January. In two weeks, I will be done with the reconstruction process.Some people would say I used a sledgehammer when a small, less invasive response would have been sufficient. But my biopsy results from the mastectomy showed irregular cells in my “healthy” breast. My surgeon said I made a wise decision to have the mastectomy. I am already feeling the “greater peace of mind” that I was hoping to gain from this.
There are so many myths about breast cancer, until you are diagnosed you really do not have a clue how complex all the subtypes, how widely treatment recommendations can be between providers and resources, or even just how very common breast cancer is. When you are in the health care field as I am it is even more disconcerting for you always remember certain patients who had partial mastectomy and had recurrence, or who did this or that and had this or that problem. It is no wonder most people say that getting the diagnosis can actually be less stressful than the treatment decisions and then of course dealing every day with the results of your decisions. I am not convinced that biopsy itself does not lead to mets given the bleeding afterwards. I am not convinced that lumpectomy that removes tissue but “doesn’t get it all with clean margins” does not aid in cancer spread. Having been diagnosed just over a week ago, I would love to sell the house, move to Florence or something, and pretend I just don’t have breast cancer, for the treatment decisions are so difficult. With guns blazing, I too want to get rid of any cells even thinking about cancer. But I agree there is a line somewhere between winning the battle and losing the war…. thanks for sharing your thoughts on this blog.
Meant to say, “how widely treatment recommendations can VARY…. (too early and since I gave up caffeine let’s blame that:)
Heather, you seem to have struck a nerve with many people with your post on WebMD “Why We Don’t Have a Cure for Cancer Yet”. Why do you think there is so much skepticism and cynicism regarding the mamouth money empire that cancer has built and supports? Can there be any question that a cure would bring this industry to its knees? Do you think that there is any way to convince people otherwise? I am just so thankful that generations ago when other deadly diseases were being battled, such as polio, that profit was not the primary objective, or every home might have an iron lung, and millions would be dying from that insidious disease. I have Stage IV prostate cancer and a story of survival that does not include the possibility of a cure.
It’s really too bad that these blogs about survival fade so quickly.
Sue, I just didn’t want cancer to be the center of my life any longer. I do cover cancer as a journalist, but as a survivor, the story isn’t really that interesting. I just wait for my regular scans, and hope that my new normalcy continues.