Treatment

Survivorship (Or, Dealing with Long-Term Side Effects)

What does survivorship mean?

It meant one thing to be pre-cancer and another thing entirely after. Before, it meant not getting cancer again. After? How to deal with the long-term side effects of cancer treatment.

I read this NYTimes Opinion piece: “It Takes a Lifetime to Survive Childhood Cancer.” No, I’m not a child. But, I am a “young breast cancer survivor.” (You hear that an effing lot, how “young” you are.) Hopefully, I have a long life ahead of me. As a “young” patient, doctors throw the book at you. They don’t often deviate. You have this type of cancer, then here’s your regimen.

Overtreatment of cancer doesn’t often come up because the result they’re looking for is no cancer. “We just want to make sure it’s gone.” And great! I’d rather hurt than be dead. But, there’s got to be a better way than overtreating. My case is a pretty good example of how it comes into play – one main type of cancer and a tiny bit of another. Cancer is gone before Treatment Part 2 comes into play, and Treatment Part 2 results in rapid body aging.

Besides bone density loss, menopause, I’ve been experiencing a lot of memory issues…which I thought would be temporary. You hear “chemo brain,” which is a side effect. Then I got (long) COVID, and I wasn’t sure if that helped. Stress makes it SO much worse. Come to find out from my oncologist, the drug I’m on causes cognitive dysfunction – not something I was told (or remember being told). She said most people don’t deal with these things all at the same time (LOL story of my life), so we have to take a stepped approach.

  • We are stopping the monthly stomach implant for two months to see if that helps.
  • She recommended occupational therapy, so I’m scheduling that.
  • And I’m seeing a specialist to tackle a diagnosis or two (outside of cancer) that might be contributing. I’m not ready to talk about it yet, but it’s not a bad thing or life threatening in any way.

I’ve been feeling really bad about forgetting – or even worse, remembering something that didn’t happen. It’s not something you can really measure – or even explain. This is where your age comes into play – how can my memory be so bad? Sounds like bullshit. I went from an excellent photographic memory to believing things that didn’t happen. Overnight. I have no strategies for dealing with it. If you know me, you know I **might** be a bit hyped up on task managers and paper planners, so you know that isn’t the issue. When isn’t tech the answer, dammit?!

I can’t tell you how big of a difference it makes to have a doctor who listens to you. For some, it’s like a scientific formula. Automation. Variation is a curiosity. “If it ain’t broke” mentality.

Pulling from the great NY Times article – highlights are mine:

But the treatment of pediatric cancer is also considered one of modern medicine’s success stories. Over 85 percent of children diagnosed with cancer survive. […]

But the progress masks tough realities. That 85 percent survival rate for cancer is measured at five years. For a 76-year-old woman diagnosed with breast cancer, five years can feel like a reprieve. But what does a five-year survival rate mean for a toddler? And what are the long-term effects of cancer treatment — which can include radiation, chemotherapy, surgery, amputation and reconstruction — on the developing body and mind?

Fending off early death is a victory. What the next four or five decades are like remains a challenge, for patients and families and for doctors.

Funny they use breast cancer as an example but at 76. And the 5-year survival rate really puts it into perspective.

I – along with my oncologist – were on a local radio show talking about breast cancer survivorship and overtreatment. She talked about breast cancer typically impacting older women, but that’s not the reality anymore. Cancer is so damn complicated, and there are often singular stories out there (I beat cancer, ran a marathon and never had to think about cancer again). There’s so much variation out there and not a lot information on what to do – or if there’s anything to do.

No one wants to keep talking about cancer, but I would have loved all this information before making some life-altering decisions. So, here I am, bitching about it. 😂😉 I mean, I did to the radio thing, and I’m hoping to volunteer and spread more awareness. Just think – you won’t have to talk about cancer if you catch it early! YAY!