Know thyself & hire good doctors

Probably some of the weirdest and most confusing breast cancer studies of recent years are the findings that breast self-exams are not as beneficial as once believed. I have a huge emotional response to this merely as a suggestion, so I’m going to quote information directly from the Komen website:

Breast self-exam seemed promising when it was first introduced, and it has been widely promoted. However, it is not clear that it offers a benefit as a screening test [13,42]. Results of studies on its effectiveness at finding early stage tumors and improving chances for survival have been mixed through the years. Some studies supported its value and others did not [13]. 

A meta-analysis combined results from the two largest randomized controlled trials on breast self-exam to date (one in Shanghai, China and one in Russia) [43]. The Shanghai study included about 266,000 women and the Russia study included about 122,000 women. The combined analysis found no difference in breast cancer mortality after 15 years between women who did routine breast self-exam and those who did not [43]. And, the breast self-exam groups had nearly twice as many biopsies with benign (not cancer) results as the other groups [43]. This means breast self-exam caused many women to have follow-up biopsies with false positive results. These studies show that breast self-exam does not offer the benefits of other breast cancer screening tests.

This says breast self-exams do not reduce death rates from breast cancer and result in more unnecessary biopsies.

But …

I can’t tell you how many people I know who found lumps themselves, either through diligent monthly exams or even just occasional examinations of their own bodies. Although I didn’t find a lump, knowing my own body was exactly what led me into my doctor’s office with concerns for my health.

A few years before I was diagnosed with cancer, I was treated for postpartum depression. Though I saw my doctor (at the time) regularly, she missed the signs and, I feel, never properly screened me for PPD. I was clueless as to what was going on with me and when I did finally say the right words to get her attention one day, she did a poor job of explaining what was happening and allowed a suicidal me to walk out of her office without help.

Thankfully, I happened to know (and seek out) another practitioner who understood what was happening and explained it in a way I could accept. She helped me along the path to treatment.

In the intervening years, I went on something of a quest to learn about my body and to recognize the signs of any sort of problems. I wasn’t very aware of problems within my body before then. I couldn’t even tell the difference between a cold, sinus infection or allergies. I rarely needed a doctor and when I did, it was for these everyday ailments.

Fortunately, my close call made me realize I had to be a proactive patient. (We all do.) I had to be my own best advocate when it comes to my health care. This is a fact that still drives me crazy – who wants to have to demand more answers when you feel like poop? But it’s reality. So, I fired my doctor and went on a quest to find a really good one. After much searching, one name popped up several times. I went to see her and she has been my primary care doctor for about seven years now.

She listens to me and takes my concerns seriously. Even though I know she must be very busy – as all primary care doctors are – she never seems in a hurry to get out of my exam room. Anytime I visit her for any reason, probably 80 percent of the time is spent talking and 20 percent is spent on the exam. This has paid off.

In February and March 2006, I experienced a few strange pains in my breast. I had several in one day, then nothing. A few days later, I had a few more. I easily could have ignored it. I often adhere to the “if it goes away in a few days, it must be nothing” rule, which isn’t always a bad rule! These were sharp pains, though. Surprisingly sharp. I examined the breast repeatedly and felt nothing – I couldn’t even make the pains happen when probing around. I dismissed it the first day.

The next time it happened a few days later, I decided to sit with my body and just feel. I lay down on my bed in a quiet house and did my best to settle my mind. I could feel my heartbeat. I took a few breaths to slow things down and I just “listened.” It was then that I felt an immense heaviness emanating from an area of my breast that wasn’t actually close to where the pains were. From that point forward, even walking around minding my own business, I could feel the heaviness. I didn’t have many more of those pains, but when I did, it was as if I could “see” in my mind’s eye the lightning bolt of pain shoot from that spot out my nipple.

Of course, I was fairly certain I had lost my flipping mind.

I made an appointment so my doctor could tell me I was losing it. The appointment was several days away and as time passed, I nearly canceled – I was about to chicken out because the pains had all but disappeared (but not that heaviness) and I knew my symptoms were borderline crazy. But it wasn’t the first time I’d seen her with a crazy set of symptoms and she had never made me feel crazy, so I went.

I explained my symptoms and she did a thorough exam. She found nothing. The whole situation was made difficult because my 4-year-old daughter was in the room with me. I think the doctor and I both had the feeling of, “this is probably nothing, so let’s just make sure it’s nothing and get out of here.” She stepped back after she was done and I said, “I guess the heaviness is just what is so weird to me.” She looked at me and said, “where exactly do you feel that?” I pointed to the spot. She told me to lie back again, pressed the entire weight of her teeny little self into her fingertips on the area and said, “Oh, there it is.”

There it is.

I couldn’t feel it. When she forced (shoved, really) my fingers deep into the spot, I only felt it for a split-second. I couldn’t find it again when I got home.

But there it was.

We – my doctor and I – found it because I knew my body and I had a good doctor “on staff” to take care of me. I had a doctor who listened and who knew her patient.

She told me later she was so glad I had paid attention to those pains and had come to her. She felt the pain was from the tumor breaking through the milk ducts and irritating surrounding nerves and that it would have faded within a short time. It would have been six months or (or maybe longer) before the lump would have been found. At the time of my diagnosis, I had blood vessel invasion, which is quick hop to lymph node invasion and a higher stage disease.

I know that one person’s story doesn’t have any medical significance in whether a procedure or process is important. Even the 100 or more women I have met who found their own lumps isn’t statistically significant (and doesn’t address the, probably, 1000s of people I’ve met with false alarms). I also know that only time will tell whether finding my cancer then saved my life. (Time – as in, when I die at 120 years of age of something else.) But I do know that knowing my body and having a good primary care doctor got me on the road to earlier treatment.

All of the major cancer organizations say that all women should know the “benefits and limitations” of breast self-exam. This is true. I also feel it’s their way of saying “we don’t have the studies to back this up and actually, studies are leaning the other way, but it just feels crazy to tell you not to know your body.”

And do you know what would solve this issue once and for all? Better diagnostic tests. Right now, the only way to definitively diagnose cancer is through a biopsy. If you find something scary, there are a few tests you might get in an attempt to avoid a biopsy. But in the end, if those tests are the slightest bit questionable, you’ll have a biopsy. These are not without danger. They are invasive and can be painful. (I won’t go on about that because, in the end, biopsies are a cakewalk compared to the alternative.) But it’s all we have to get a definite answer.

So, know yourself. Know your body. All of it. Pay attention to changes and tell your doctor. Make sure you are getting an annual breast exam by a medical practitioner. Discuss breast self-exams with her (or him). Have a really good primary care doctor on your medical team. Make sure you trust her and that she listens. See her regularly so she gets to know the difference between the “healthy” you and the “sick” you. I really think for many ailments, it makes all of the difference in the world.

Author: rosie

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