As a survivor of five breast cancers, I’ve been asked by family and friends who know my history to offer help and/or guidance and/or advice to women who’ve been recently diagnosed with breast cancer and who, most often, are freaking out.
Naturally, I always do what I can, but one fact has become crystal clear: every woman responds differently to hearing she has breast cancer. Some want to know just enough to get by, some just want the doctor to “fix it”, and others are voracious in their need for information. This is important to know if you’re going to try to help others on their breast cancer journey.
A quick summary of my approach to my own breast cancers
I’ve had to know everything about each of my breast cancers (all five have been different). I researched, studied, got second (and sometimes third) opinions, and based my treatment decisions on what I’d learned. I assumed the role of “Medical Team Captain” and (honest) I interviewed the practitioners I was referred to and decided whether or not I wanted them on my team. In short: my doctors worked for me, not the other way around. That might seem arrogant or blind-sided, but it was what brought me peace as I made my way through the difficult decisions that needed to be made. The more I knew, the more comfortable I was with my choices.
My first breast cancer “mentoring”
Shortly after my second breast cancer, a young woman was referred to me by a friend. The woman had already seen a surgeon and a chemotherapist and she was afraid of the surgery as well as the recommended follow-up chemo. I suggested she get a copy of Dr. Susan Love’s Breast Book — my first guidebook for making my way through the jungle of breast cancer care. But it turned out she didn’t want to read it: she just wanted to tell me how she felt and wondered aloud about what to expect.
Without having the specifics (particularly the stage at time of diagnosis), I wasn’t able to tell her much. I urged her to get a copy of the lab report from her recent biopsy and to visit with me again when she had that information. I didn’t hear from her for well over two months.
Eventually, she did get back to me: after she’d had a lumpectomy. Now she had a new problem: the incision wasn’t healing and it had been two months since her surgery. Her surgeon had told her to keep a compress on her breast and to wait it out. I was appalled.
I suggested she get a second opinion from another surgeon but she was afraid it would upset the surgeon she was already seeing. Two months later she contacted me again: the incision was still not healed and she was still resistant to seeing another doctor. I reluctantly wound up telling her she’d be fine, even though I didn’t have a clue if that was true. But it’s my belief that our thoughts affect our physical well-being, so positive support made sense. Besides, what else could I do?
Although I didn’t tell her this, I was shocked by her lack of concern for herself, and her reliance on the surgeon. This was my first venture into helping another with their breast cancer, and I felt I’d failed miserably.
After giving this a lot of thought, I realized she’d come to me three times and — all three times — what she’d wanted was someone to talk with; or, more accurately, someone to listen. I’d made the mistake of thinking she wanted more.
This was a painful lesson to learn, but an important one. When another is dealing with breast cancer, they’ve got their own gut response (however nutty I might think it is) and the least I can do is respect that. Since then, I’ve learned to customize my input to the genuine needs of the woman who’s asking.
How to Know What to Say or Do
When one of my family members was diagnosed with breast cancer, I reached out to her. She responded that she just wanted the doctor to “get rid of it”. I desperately wanted her to understand her treatment options, and that there are no guarantees that a doctor can “get rid of it”. I asked her if she knew the results of the biopsy she’d had. She didn’t and, what’s more, she didn’t want to know. Her lack of interest in digging deeper was my guide to knowing what to tell her. She was most comfortable not knowing the nitty gritty of breast cancer, so I told her the odds of her living a long and happy life were good. This has the advantage of being true: one in three women die of breast cancer, so without knowing more than that, I knew she had at least a 66% chance of surviving breast cancer. Because she wasn’t talking about it, I’m not sure what she went through, but I believe she had a lumpectomy and chemotherapy, and possibly radiation. To this day I don’t know what stage she was at when she was diagnosed, or any other characteristics of her tumor. It’s behind her now and that’s all she wanted. In short, knowing what to say or do is fairly easy: just pay attention to what the woman is saying or not saying and let that be your guide.
For those who want to know all about it
One of my oldest and dearest friends was diagnosed with breast cancer last year. She phoned me shortly after she’d had a biopsy and was waiting for an appointment to see a surgeon to whom she’d been referred by the mammogram screening group. Her mother had had breast cancer when she was in her 40s or 50s and had dealt with it by having a double mastectomy. When her mom was in her 80s, she had another breast cancer grow on her chest wall. Her mom spent the last two years of her life in pain from repeated chemotherapy treatments until her children finally stepped in and told the oncologist “enough is enough”. My friend’s mother died a month or two later. After she died, I told my friend that the effectiveness of chemotherapy declines as we age and that, in my opinion, the oncologist who treated her 80+-year-old mom with repeated doses of chemo had done so knowing the likelihood of success was almost nil.
The experience with her mother gave my friend an appreciation for knowing more about her own diagnosis; something I was more than happy to help her with. As with all newly diagnosed patients I’ve talked with, I first wanted to calm her down as much as possible. Since she knew the size of the tumor was relatively small, I told her the likelihood of her living a long and healthy life was very good. I also told her she’d be joining a wonderful group of women who’ve survived breast cancer. I promised her there are blessings she’ll come to appreciate which she might not have come to know about without going through breast cancer. Then I turned toward the nitty gritty and asked her to send me a copy of the lab report from her biopsy. Within a week, I got the report and saw she was at the border between Stage 1 and Stage 2, with a tumor slightly less than 2 centimeters in size. The hormone receptors were positive (more on that in a bit). From that information, I was able to tell her the treatment recommendations she’d be given would include surgery, chemotherapy, possibly radiation, and hormone-blocking supplements such as Tamoxifen or Arimidex.
A week or so later, she called to tell me she’d seen the surgeon and had been told exactly what I’d predicted. In fact, the surgeon had told her that, as breast cancer goes, she’d gotten the best of all worlds: every treatment available would benefit her. That was my cue to more fully customize my input to meet my friend’s level of interest and need. I prefaced what I told her with a statement that she MUST listen to her own body and accept or reject what I told her based on her gut instinct and not on my say so or on what any doctor (or anyone else) told her. As always, I recommended she get a copy of Dr. Susan Love’s Breast Book and read it from cover to cover. I also told her to ask her doctors for summaries of studies that would support their treatment recommendations and for her to read them well, looking up words she wasn’t familiar with so she’d honestly understand as best she could.
By the time she was through with her research, she switched surgeons twice and ended up with one who practices standard treatment of care as well as alternative treatments. She decided to have a mastectomy and reconstructive surgery and skipped all other treatments other than focusing on some changes in her diet and lifestyle, and adding some supplements to her daily routine. She knows she might get another breast cancer in the other breast, or one on the chest wall of the reconstructed breast, but she’s comfortable with her decisions. Being comfortable with the decisions made in treating ones breast cancer is key to quality of life — during and after the whole ordeal. Lastly, I urged her to make plans to do something on her “bucket list” when her treatments were complete. In my case, I’d taken a cruise of the Mediterranean. In her case, she decided to move to Colorado.
A summary of what I’ve learned that may be helpful to others
I’m not a doctor who’s been trained in treating breast cancer, so the information I have has been gathered by me through reading, talking with other patients and practitioners, and my own experience. I can’t guarantee that everything I claim to know is accurate. My purpose in sharing the following is to point you in directions I believe will be of use. You (or the woman you’re trying to help) would be wise to do your own research and consult your doctors with what you learn. You might be pleasantly surprised to find there are doctors that value patients who advocate for themselves.
- When a tumor is caught early (at under 2cm) and the cancer hasn’t reached the lymph system, the likelihood of NO recurrence (without treatment beyond having the tumor removed) is about 85%. That means there’s a 15% chance of recurrence. Under these conditions, when a patient is told that chemotherapy or radiation can cut the chance of a recurrence by 50%, the 50% refers to half of 15%. In real numbers, it’s a 7.5% benefit.
- A mastectomy doesn’t mean you’ve eliminated all possibility of having breast cancer: breast cancer can form on the chest wall.
- A lumpectomy plus radiation offers the statistical equivalent of a mastectomy in terms of 5-year disease-free survival.
- Radiation to the breast can create an environment in which another breast cancer will form in that breast about 10 years later. (This is what happened with me.)
- Hormone treatments are believed to prevent further breast cancer for estrogen receptor positive (ER+) and progesterone receptive positive (PR+) tumors. Estrogen and progesterone are natural hormones which some breast cancers need in order to grow. You’ll know if a tumor is ER and/or PR positive by reading the lab reports from a biopsy or the surgery. You can simply ask for a copy.
- Her2Neu is a term you’ll likely see on lab reports. It stands for “Human Epidermal Growth Factor Receptor 2”, which is a protein that adds aggressiveness to breast cancer. Herceptin is one of the current medicines recommended to prevent recurrence or metastasis of Her2Neu positive breast cancers. The 5-year disease-free survival rate when using Herceptin is reportedly around 80-85%, depending on the stage and agressivness of the tumor. Personally, 5 years doesn’t seem that long to me.
- A “triple negative” diagnosis means the breast cancer tumor didn’t respond to estrogen or progesterone when tested in the lab, and the Her2Neu protein wasn’t present either. In this situation, the medical world doesn’t have a clear idea of how or why the cancer developed. For this reason, many practitioners feel it’s a more “dangerous” version of breast cancer. (This information about “triple negative” was given to me by an Oncologist at Moffitt Cancer Center in Tampa, FL.) Treatment recommendations often parallel those of made for patients with E/R+, P/R+ and Her2Neu+. It doesn’t make much sense, but that’s what’s been done. My first breast cancer was triple negative. I had a lumpectomy to remove the 1.2 cm tumor, followed by 33 radiation sessions. I refused chemotherapy because my gut didn’t respond well to the idea of it, and I couldn’t find studies to support the recommendation. These were treatment decisions I made based on my own research. As I write, that was over 13 years ago. I haven’t had a recurrence or metastasis of that triple negative breast cancer.
- A diagnosis of “DCIS” (Ductal Carcinoma in Situ) is Stage 0, meaning it’s pre-cancerous and it may never become an invasive cancer. It means there are cancer cells contained within a cocoon of healthy cells. Autopsies have been done on women who died of causes other than breast cancer in which DCIS was found in their breasts. These women probably had no idea they had it. As of 2013, a diagnosis of DCIS is often treated as if it were an invasive cancer. There’s a conversation going on within the medical community about whether or not this is the right thing to do. There’s even discussion to change the name of this “growth” to remove the word “carcinoma” (which means “cancer”) from the name. Some women have had a double mastectomy after a diagnosis of DCIS. If that’s what makes them most comfortable, it’s the right decision for them. But it’s not necessarily the right decision for everyone. Remember: removing the breasts doesn’t guarantee there won’t be a recurrence or new breast cancer on the chest wall. (My second breast cancer was DCIS, this time triple positive, so the cancerous cells were completely different from my first breast cancer. Since I’d already had one breast cancer 5 years prior, I opted for a lumpectomy and no further treatment because that’s what made the most sense to me, despite recommendations that I go through chemotherapy.)
- The most common form of breast cancer (not including DCIS) is Invasive Ductal Carcinoma (IDC): the cancer forms in the lining of a milk duct. A less common form is Invasive Lobular Carcinoma (ILC): the cancer forms in the milk glands (lobes), which are connected to the ducts. My third breast cancer was ILC, ER+, PR+, Her2Neu negative. Again, I opted for a lumpectomy and nothing more.
- There’s a rare form of breast cancer called Inflammatory Breast Cancer (IBC). The chances of surviving this are not good using “standard treatment of care” (which is very aggressive and is what’s offered by western medical doctors). Alternative treatments may well be the best option. (I was incorrectly diagnosed with IBC by a doctor at Moffitt Cancer Center in Tampa, FL. It wasn’t fun. In the end, it turned out I didn’t have any form of cancer. The full story is in an earlier post.)
- By the way, after my third breast cancer diagnosis, it made sense for me to be tested for the breast cancer (BRCA) genes: BRCA1 and BRCA2. Although breast cancer runs in my family, the test results were negative. There may be other gene “deformities” that contribute to breast cancer. They’re still working on it.
- If you’ve already had surgery on one or both breasts, then later opt for a mastectomy (or double mastectomy), there’s about a 25% chance that you’ll experience severe pain in your chest for the rest of your life.
- Chemotherapy has helped many women survive breast cancer. Based on what I’ve observed, it is most effective for younger women with E/R and P/R positive tumors. Chemotherapy doesn’t guarantee there won’t be further breast cancer, particularly if the cancer has metastasized (chemo doesn’t reach the brain, so women who’ve had chemotherapy have died of “brain cancer” … which is really breast cancer that spread to the brain: a biopsy of the brain cells affected by the cancer shows the same traits as the cells of the woman’s breast cancer).
- Tamoxifen and Arimidex have some serious and heavy duty side effects, although some women don’t feel them at all or feel them for only a short period. For those who do feel the side effects (bone and joint pain being big ones), many women switch from one drug to the other, and others stop taking the drugs entirely before the prescribed 5 or 10 years (often stopping within 1 or 2 years). There is some indication that once you’ve been through 5 years on either Tamoxifen or Arimidex, there’s an unspecified but (in my view) relatively high likelihood of a recurrence within a year or two after stopping the drug. Oncologists would argue with me about that and I admit I could be wrong.
- All treatments offered under the western “standard of care” have both short- and long-term side effects. It’s worth the effort to find out what they are. Each woman knows her body better than anyone else, so she also has the tools she needs to decide whether or not the treatment is worth the risk of the side-effects. Some women don’t trust themselves to do this. Those who do trust themselves tend to have better outcomes. Even doctors agree with this. In my case, what works for other patients usually won’t work for me. I fall outside the norm in almost every area of my medical history. I know this about me: I’m likely to awaken mid-surgery, or feel excruciating pain in post-op despite the fact that I’ve been given pain killers to ensure that won’t happen. So I go in advocating for close attention to my response to “normal” doses of pain killers. That’s just one area where my response to care will differ from those of most patients.
- To get a full understanding of how side effects could impact you, Google “patient comments on _______” (insert the treatment name or drug). You want to find a site where women who’ve gone through it are posting their experiences with it. Take care to note the site’s host. If it’s a breast cancer center, you’re not likely to get completely unbiased information.
- The lack of adequate iodine in the body may account for the development and/or recurrence of breast cancer. Iodine supplements have, in fact, reduced tumors entirely, eliminating them without surgery. For more information on this, see http://www.breastcancerchoices.org, or read Lynn Farrow’s book “The Iodine Crisis” as well as Dr. David Brownstein’s book “Iodine: Why You Need it, Why You Can’t Live Without It.”
- Some women approach their breast cancer care by completely changing their diet and lifestyle. The Gerson diet has reportedly had very good results, although I knew a woman who used that approach and she died anyway. (Once breast cancer has reached the brain, the Gerson diet, like chemotherapy, doesn’t help.) A macrobiotic diet might help (this is what Steve Jobs of Apple Computer tried), and a nutrient dense diet might do the trick. Injections of a certain type of liquidized mistletoe is used in Germany, with reportedly excellent results.
- The main thing to understand is that cancer develops because the immune system hasn’t worked well enough to stop it … so if you’re going to approach treatment (wholly or in part) with alternative methods, you’d be wise to focus on boosting your immune system. There are blood tests that identify which parts of your immune system are weak, and supplements are available that will strengthen those areas. A well-trained and experienced Naturopathic Doctor is the person to help you with this.
- If you decide to go through chemotherapy and/or radiation, acupuncture and homeopathic remedies can ease the side effects. In my case, the fatigue from radiation affected me after the second “dose”. By sheer luck, I got an acupuncture treatment that restored my energy for about a week. I had acupuncture weekly while going through radiation, which is how I managed to keep working during the treatment. A skilled acupuncturist is worth his or her weight in gold. If they also happen to be a talented Naturopathic Doctor (or if you can find specialists in each area), all the better.
- In my opinion, the best way to decide which treatments to go through is to listen to what your body is telling you. If you’re told you need chemotherapy and your body (gut) reacts negatively to that news, note the reaction then gather all the information you can find. Compare the traits of your breast cancer with studies that support the doctor’s recommendation. Make sure the outcome for women similarly situated to you is beneficial. (I was given a summary of a study by the head of the Dana Farber Breast Cancer Center during my first breast cancer. He was adamant that I needed to go through chemotherapy. In fact, he was visibly upset that I’d question his knowledge and experience. When I read the summary of the studies he gave me, I noted the results indicated that women with similar breast cancer traits to mine — who weren’t treated with chemotherapy — did better than those who got chemo. When I pointed this out to the doctor, he told me he’d run out of time to talk with me.)
- Never let a doctor (or loved one) bully you into a treatment that doesn’t feel right or doesn’t make sense to you.
- The medical community in the United States isn’t as organized as one would hope: chemotherapists, radiation oncologists, surgeons, researchers (and other “specialists”) don’t tend to mingle or share information with one another. As the patient, you might find yourself being the communication vehicle between the various departments of a breast cancer center. It’s insane, but as of now it’s true. For more information on this, there’s a fascinating and well-written book called “The Emperor of All Maladies, A Biography of Cancer” by Siddhartha Mukherjee. It’s a big book, but it’s worth reading if this subject interests you.
- There are many books about cancer, including books on listening to your body and following your instincts (“Your Medical Mind” is a good one). There are also surgeons who will support you even if they disagree with your decisions. These doctors are also worth their weight in gold. (I’ve followed my breast cancer surgeon around since my first diagnosis in October of 2000. She’s been the ballast I’ve needed during very difficult times.)
For me, the overriding guide to my treatment choices has been quality, rather than quantity, of life. I’ve seen too many women suffer the effects of chemotherapy and radiation at an age when it won’t really help them. The treatments might give them hope, but invariably (if it’s a terminal diagnosis) they die right about when the doctor originally told them they would. Instead of enjoying their last months or years, they spend their time in doctors offices, or in bed, losing their taste and sense of smell, losing control of their body’s functions, and the like. Death isn’t easy when it’s protracted, but it doesn’t need to be stretched out into a painful existence by treatments that do more harm than good. This is far more true for older patients than young women with breast cancer, but it’s important to understand none-the-less because there are doctors who financially benefit from patients who undergo chemotherapy, even if the likelihood of any benefit is close to zero. It’s true they’re doctors, but giving chemotherapy is how they make their living.
Regardless of my own encouragement to women I meet who’ve been newly diagnosed with breast cancer, one in three women die of it and that statistic hasn’t significantly changed in over 50 years. No matter how many “Walks for the Cure”, no matter how many “improved” drugs and/or treatment protocols, no matter how many “breakthroughs”, one in three women diagnosed with breast cancer will die of it. And the number of breast cancer patients is increasing. When I was younger, one in ten women were projected to be diagnosed with it; in 2013, according to the American Cancer Society, it was one in eight. With the increase in treatment of DCIS, the number of patients who survive has gone up, so it might now be 1 in 12 … but that number is padded because DCIS patients didn’t have active cancer to begin with. I stopped walking to raise funds for breast cancer when I learned these numbers. The only research group I currently support is Dr. Love’s Army of Women (http://www.armyofwomen.org/drlovefoundation).
The sad truth is that the medical community has less know-how to assure survival than one would hope. The cause of breast cancer is still unknown. The good news: if caught early, the chances of a normal and healthy life are better than most women know when they first hear the words “you’ve got breast cancer”. If you can keep a newly diagnosed woman from panicking, and encourage her to learn more about her condition and the treatments available to her, you’ll have achieved all you can. The rest is up to her. I wish you, and those you mentor, a world of success.