October is Breast Cancer Awareness Month: what not to say

Before we start, if you’re not interested in this topic, I won’t be upset if you skip this post. But I know that there are several regular commenters here who have gone through this and I just want to say “thank you” to them for knowing what to say. They all told me how long it had been since they kicked their thing. And that was it. That was exactly right for me.

But there are other people who gave me advice and while I understand they cared about me and were well intentioned, this advice was not as helpful. Here’s a video by Jen Rozenbaum, breast cancer survivor, who explains what this is like:

I’m a big believer in chemo. That shouldn’t be surprising considering my pharma R&D background. I have less understanding of how it works than an oncologist but probably more understanding of the biological mechanisms than the average person. So, when I was told I was going to need chemo, I could not wait to get it. The faster the better. I wanted to shrink my thing before it spread anywhere.

I got a lot of advice about how bad chemo was for my liver and what alternative medicine I could add to my regimen or replace it with altogether. But if I were to take some of these additional things, they might have actually interfered with my treatment. That’s because some natural products can actually have an effect on your body. Where do you think chemo drugs come from? Many of them are derived from natural products. They might be improved in the lab to make them more potent. But they started in a plant. My chemo consisted of paclitaxel and doxorubicin. Paclitaxel’s origins are in the Pacific yew tree. Doxorubicin’s originates from the streptomyces bacteria. It’s one of the most powerful chemo drugs ever discovered. It’s so cytotoxic that I was a walking biohazard for a few days after every treatment.

That’s what it takes to kill cancer cells. There is no kinder but gentler way to treat the kind of cells I had. There are some more targeted medications for other cancers with fewer side effects but almost everyone needs chemo of some kind and it’s going to be rough on the body. That’s just the way things are.

Some natural products that were suggested to me by relatives and friends when ingested could possibly interfere with that process. The effects of chemo are carefully monitored so adding another substance into the mix might have had unintended consequences. Wearing essential oils in a lava stone bracelet- good idea. Swallowing the oil? Not recommended at all. This isn’t because they don’t work. It’s because they do have physiological effects that could make the chemo experiment harder to manage.

I did make some changes to my lifestyle. I stopped drinking alcohol. I did this so that my body would heal better between infusions and also because some metabolites of alcohol may be carcinogenic. I also tried to eat a clean diet of mostly protein and vegetables to keep my blood sugar on an even keel. I didn’t have to do that. I’m not diabetic or prediabetic. But why feed a cancer cell? Sure there were lapses. Who can resist chocolate? But I took my coffee without sugar. Little things, who knows if they made a difference? I just added it to the discipline I felt I needed.

Anyway, my chemo was wildly successful. I followed all directions my chemo nurses told me religiously. I never missed a medication, kept every appointment. Yes, I lost my hair. I decided to shave it all off when it started falling into my food. I didn’t miss it. Wigs these days are great. I missed my eyebrows the most. But losing my hair was a minor sacrifice.

It’s not the end of the world.

The liver has an amazing power to recover itself.

Hair grows back.

Chemo, if you’re lucky and caught it early, doesn’t last forever.

It may not cure you but it has extended many lives for years and years. And my quality of life wasn’t awful. I truly was one of the lucky ones and my body coped pretty well.

The most helpful advice was …. nothing at all. The best help I got was for someone to listen to what decisions I made and to go along with them, offering support no matter what.

Go and do likewise, even if you personally don’t believe in chemo.

Your cancer fighting friends and relatives will love you for it. Well, they’ll love you regardless but especially if you let them and their doctors figure it out.

Now, I’m not going to be arrogant and say that I got through chemo and that’s why prognosis is good. That would be stupid. There are plenty of people for whom chemo doesn’t work. Some of these people were diagnosed when their cancer had already spread. That’s when cancer becomes more difficult to treat and radiation therapy, surgery and clinical trials are necessary add ons to chemo.

That’s why early detection is so important. So, if you think something doesn’t look or feel normal to you, get it checked. It could be nothing or it could be early enough to save your life.

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One last thing: as Jen mentions in the video above, there is no “cure” for cancer. There’s only effective chemotherapy, radiation, immunotherapy and surgery. That can “cure” you but there is no silver bullet that the pharma companies are withholding from us. And if you just thought for a moment about that conspiracy theory, you would realize how absurd it was. Why would any pharma want to sit on a silver bullet? Are you kidding me? They’d rush that sucker to market so fast our heads would spin. It would be the most expensive drug on earth because everyone would want it. They know this.

I think this conspiracy theory exists because we all want to desperately believe that there is an answer and maybe, when the time comes for US, pharma will release it and cure our cancer.

Maybe someday there will be cures for lots of different cancers. That’s my expectation. But I also suspect that it’s going to involve chemo and stuff you wouldn’t normally put in your body. If you were 100% certain it would cure you, wouldn’t you put up with the temporary side effects?

You know you would.