Breast Cancer, Again

In September of 2011, I had my third breast cancer removed. In November of 2014, I learned I have a fourth breast cancer. As with all the others, this one is different in character from the previous breast cancers I’ve had. That means it’s known as a “primary” breast cancer, rather than a “recurrence” or a “metastasis”. For reasons I don’t understand, my body makes different kinds of breast cancers. Over the years, I’ve come to learn about each one … not as well as a medical student, but enough to be reasonably educated about my treatment options and decisions.

My initial response to this news (which I got late yesterday afternoon) could be characterized as “numbness”, or maybe I’m just used to it by now. I’m not frightened by it. I’m not worried or concerned about it. Based on what the breast cancer surgeon told me, the tumor size is less than 1 cm (Stage 1), and it’s not aggressive. As breast cancer tumors go, it’s on the whimpy side. In a very real sense, it’s hardly worth getting worked up about.

But here’s the thing: this breast has now had three breast cancers, and with this latest one, it will have had three surgeries (lumpectomies) to remove the tumors. It’s also been through radiation (first breast cancer), which means:

1. Radiation doesn’t prevent further breast cancer in the breast that’s been treated (I really wish I’d known that back in 2001);

2. Skin that’s been irradiated doesn’t heal as well as “normal” skin, so my post-surgical recovery is going to be less than predictable. I’m hoping for the best, of course. I always do.

The above is so matter-of-fact, I’d have skipped it, but in case you happen to be reading this at a time when you’re trying to decide whether to go through breast radiation, I decided to give it a mention. My best advice: learn all you can about it, and (most importantly) listen to your body. My experience with radiation didn’t work out all that well for me, but that doesn’t mean it won’t work for you. Do your homework, then give a healthy dose of credence to your gut instinct.

My homework now is to try to figure out what to do about my body’s inclination to make breast cancer. Since my last “bout” in 2011, I’ve been on supplements designed to keep breast cancer away. So this news will be upsetting to my very fine naturopathic doctor, who has been my guide on supplements and inspiration for alternative treatments. I can’t say I’ve been the idyllic patient (I drink too much wine), but I haven’t been entirely irresponsible either. In truth, it doesn’t matter: the approach didn’t work. So now what? I’m sure she’ll be wondering the same thing. It’s a set-back, but I already know there’s no sure cure. How can I blame anyone for doing their best to help and it didn’t work? I can’t.

Other than the decision to go through radiation in 2001 (a decision I regret), I’ve refused all other “standard care”. That means I’ve turned down chemo, Tamoxifen, Arimidex, and the like. Why? The side-effects can seriously impact quality of life, even after you stop taking the drugs. I know this because I’ve searched the web and found far too many women posting their stories about the experiences they’ve had with these drugs, including lingering and painful side effects for years after they’ve stopped taking them. Without consulting their doctor, many have taken themselves off the drugs. All too often, I’ve read “A life like this isn’t worth living”.

A rational reader would understandably wonder why I’d assume I’d have these negative side-effects, since not all patients do. I have only one answer for that: when it comes to my health, if something rare can happen it’s going to happen to me. If you were to put me on a bell curve with other breast cancer patients, I am — in all respects — at the far edge of the curve: no where NEAR the middle. Thus, even a small chance of life-long joint pain, or debilitating fatigue, isn’t worth the risk to me.

So here I go again. I’ll research what I can find and then listen to my body. One problem right off the bat: the medical community doesn’t follow women who refuse post-surgical care. Standard western medicine doesn’t know how many breast cancer patients have survived or died as a result of refusing chemo, radiation, drugs, and/or surgery. They have little information about, or interest in, what patients are doing for themselves. That means they don’t have all the relevant information when they present findings of their clinical trials. Since they don’t track, or include, information about those of us who don’t buy their wares, their information is incomplete. Or, put another way: their science is incomplete.

At best, I can do Google searches on terms for patients like me, which goes something like this: “65 year old with history of 4 primary breast cancers”. There are many variations for this kind of search (I tried all I could think of when I was at 3; researching for 4 won’t be easier). With luck, I might find a chat room where there’ll be a woman or two with a history similar to mine. But for the most part, this is a road I’ll need to pave for myself. So far, I’m okay with that.

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2 Comments

  1. Hi Robin… I’m sorry you’ve had to go through this again for the 4th time, when you wrote this in Nov 2014 I was having my second surgery to remove the margins. 22mm Triple Negative Breast cancer left undiagnosed for 4 months (no lymph node involved), operated on first time 6 months after finding the lump. Like yourself, I want to know what causes breast cancer and how to stop a reoccurrence. Mainstream medicine want to find a cure? sure they do, think of all the oncologists, pharmaceutical companies, doctors, nurses who would be out of a job. I was angry that I listened to my body and begged to be seen by a specialist here in the UK, (you have to go through your GP’s referral to a hospital, then the breast surgeon determines how quickly you are seen). Because mine started as a pain and then a swelling, then a lump, both GP and Surgeon assumed it couldn’t possibly be cancer and I waited 13 weeks to be seen in hospital, where I was told there and then ‘you’ve got cancer’. ‘You’ll need to have chemotherapy and radiation. I had already decided before diagnosis that I would not be undertaking chemo, as the side effects, chance of a spread and the fact that everyone I spoke to said they wouldn’t go through it again or their loved one died whilst undertaking chemo. I listened to my body from the start and will continue to do so. Started Radiotherapy and got a sore throat, told the radiologist, its nothing to do with Radiotherapy… googled it and many women have sore throats because of radiotherapy. Then got an infection in my breast half way through treatment… again was passed off my specialist, I wanted to stop the treatment there and then but was persuaded to finish the 23 sessions, which I now regret as I had since I finished 6th March terrible fatigue, body aches and pains and was told this had nothing to do with the radiotherapy. I just don’t trust Doctors anymore, when they say this and many women have the same symptoms as I have had. If I too had a reoccurrence I would not go through any “treatment” given by the “experts”. Facing your own mortality at 41 (when diagnosed) has changed my life completely and I am still sat in the rubble of my lightening struck tower nearly a year after diagnosis wondering if I have a future due to the grim prognosis of TNBC.

    Reply

    1. Hi Kerry,

      Thanks so much for sharing your experience, which is heart-breaking, but (silver lining) despite it, you’ve come through it with a strong sense of what your body needs and that’s a powerful thing to know as you move forward.

      From what you’ve written, you were knocked over in a spiritual sense (or psychological, or however you perceive your sense of self), and it’s important for you to handle those negatives because your body picks up on them (thoughts affect cellular behavior so the happier/healthier your thoughts, the better).

      Changes in lifestyle and diet are the two most frequent approaches I’ve seen for breast cancer survivors who’ve “gone rogue”. But to get you started, you might want to “reset” the bacteria in your body (your gut) to help handle the effects of radiation and the anaesthesia / pain killer and/or antibiotics you may have been given before and after surgery. There are other steps you can take to help with radiation exposure as well: http://www.globalhealingcenter.com/natural-health/natural-remedies-for-radiation-exposure.

      The above link mentions iodine supplementation, which is something many women have turned to (see http://www.breastcancerchoices.org). For diet, the Mediterranean diet is strongly recommended, and a good book on that is “The Gut Balance Revolution” by Gerard Mullin, MD. If that’s not available yet in the UK, let me know.

      You have an excellent chance of living to a ripe old age, and having had breast cancer can serve as a silver lining to tending to the priorities that really matter to you, as well as your physical well-being. Do your best to overcome the dis-ease you’ve had to experience. And feel free to contact me anytime, either through this blog or at my email address: robinstamm.nh@gmail.com. My very best to you.

      Reply

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