Asking Questions and Challenging the Status Quo

Friday, June 27, 2014

In General, Younger People Get More Aggressive Cancer

I'm not surprised that many people don't know this. It's second nature to me, since I've lived it and every doctor I've ever encountered has always said these words before recommending the most aggressive treatment all down the line. (Harsher treatment--dose dense chemo, radiation with additional boosts-- is what has me wondering about my real risks for complications, something that I'd say hasn't been adequately studied to tell us anything definitive about percentages or time horizons.)

For those who don't know, here it is from YSC. Or if you don't want to click, here's the takeaway: In general, younger women face more aggressive cancers and have a lower survival rate than older women.

Quite frankly, that ups the suckage factor, which is very high anyway when you get cancer young. It includes raising very young children during treatment, trying to get, keep or find a job that you really, really need for many more years, a very high likelihood that you can't have any or any more children and that your hormonal levels will always be whacked or immediately halted because of other surgery that's deemed necessary, and etc.

Cancer is not kind to anyone, but the young face some especially harsh hurdles, which is why there are groups like YSC. It is a different beast for us.

Thursday, June 5, 2014

Dawning on Me

I'm beginning to realize something pretty important, I think. It's that I got a lot of heavy duty treatment for my cancer, mostly because I was young and the cancer was therefore aggressive. There's no doubt I was hit with much more toxicity than the average, older cancer patient.

Which leads me to ask, do doctors even know what all those drugs in stronger concentrations can do to someone?

Add to that the fact that my time horizon after cancer will likely be much longer because I got the disease in my 30s rather than in my 60s as is typical, and I would have to decide that no, they do not know what all could come up for me because of my treatment.

And that's a scary, scary thought. Mainly because anything could happen, and there's a strong chance I would be ignored or simply not believed.

Currently, I feel like crap pretty much all the time. I told my oncologist this at my six month appointment and he ran a couple blood tests, which actually didn't come back perfect but don't concern him.

I suppose I could have something causing me a bunch of really crappy, intense symptoms that just popped up out of the blue and is in no way related to the cancer I had or the treatment for that cancer.

But my gut tells me those are really good places to start looking and ruling things out. For example, many of my symptoms could be signs of heart trouble. The leading and likely only reason I'd have heart trouble is because I took aridymiacin and Herceptin, both very strong drugs that could kick up heart trouble anytime for the rest of my life.

I figure since an oncologist gave me those drugs, an oncologist should be the one to check this out. The fact that I have to press the issue is frustrating. It's also eye-opening and makes me realize I might be on my own for a lot of this going forward.

And I don't like it.

Tuesday, June 3, 2014

Night at the Ballpark

So, this past Sunday was National Cancer Survivors Day; I'm sure you heard. It's an idea that has a few problems, mainly ignoring those who have died of the disease. Also, it doesn't really cover those living with metastatic cancer, and they should definitely get attention and funding directed to their status. After all, once you've survived cancer treatment and are declared NED (no evidence of disease), it isn't long until you realize your next battle might be Stage IV.

That said, the cancer center I go to has planned a VIP day at the ballpark for cancer survivors. With free parking, free tickets and a buffet picnic, plus a free hat, it sounds to be one of the better celebrations I've been invited to in my eight years as a cancer survivor.

I've contacted our local paper to see if they'd like me to cover the event and write it up for freelance. I'm waiting to hear back from an editor. The woman answering the phone wasn't sure who handled freelance. My guess is they don't do a lot of it, and instead rely on people submitting things for them to use for free.

I'm not offering that. I can just go and enjoy the evening for free anyway; I'm not offering to do their work for nothing.

I wouldn't trust a doctor or medical professional or ballplayer or anyone really who showed up to work with no pay. I'm not playing it any differently.

Thursday, May 29, 2014

What Exactly Are They Looking for in Follow Up?

Those of us lucky enough to get past cancer treatment and to be declared NED (No Evidence of Disease) are put on a course of follow up from our oncologists. This can start out as every three months, then over time, progress to every six months, then yearly.

As far as I know, once you've had cancer, you'll always check in with an oncologist at some interval for the rest of your life. So, my question is: just what are they looking for?

Actually, I've never met an oncologist who explains this, which I think is odd. The follow up appointments themselves don't amount to much, in my experience. It's a quick physical along with general bloodwork. I think the idea is if there were anything really serious going on, like a cancer recurrence or new cancer, it would be very obvious to everyone. In my opinion, they aren't looking for little things, just big things.

It makes me wonder what those big things would be eight years out. I actually did a little research on this, since like I said, no oncologist tells you. I also looked into it because I have been feeling crappy lately--dead tired, constant headache, dizzy, etc.

I discovered that the risk for a blood cancer brought on by having received both chemo and radiation peaks 5-10 years past treatment. I'm 8 years out. I also discovered that there's a much greater risk for me to get MDS, a precursor to AML and/or AML.

This is because I was younger than 40 when I got treatment, which ups the risk considerably. So, too, does receiving two of the chemo agents I did--the A and the C of my ACT treatment. Getting these drugs in a dose-dense fashion also doesn't help. The usual dosing regimen is a dose every three weeks; I, like most young people getting cancer treatment, received my dose every two weeks. It also turns out that getting radiation boosts as I did, which means a few days of intensely stronger radiation, increases my risk.

I'm all about assuming I'm healthy until proven otherwise and still think this is the case, but I also believe oncologists and all doctors should be entirely up front and educational even about what they are looking for at what point so the patient can help with the monitoring.

Let's remember that I found my cancerous growths myself; if I had waited around for medical intervention to come to the rescue, I'd already be dead.

Tuesday, May 27, 2014

No Gratitude for this Idea

Here's a silly little article about "Cancer and the Case for Gratitude," where the author takes a doctor's study of cancer patients and draws some lame conclusions. Basically she says if people would face their misfortunes with a sense of gratitude, they might not get cancer. Or at least that's what she seems to be saying. She doesn't quite connect the ridiculous dots.

Like the hundreds of cancer patients the doctor studied in this article, I faced a big-deal stressor shortly before I was diagnosed with cancer. I was laid off from my job of many years. Did my lack of gratitude about this or my failure to find a bright spot in the disease--I got cancer at 37.5 years old, people!!!--make me get cancer?

Doubt it. There's a lot of research being done on women who get breast cancer within five years of giving birth. I'd be willing to throw in with that possibility for myself, since I discovered my cancer just two years after giving birth.

But this gratitude crap? Not at all. I put it up there with the popular media's all-too-energetic theories that my weight or diet somehow caused my cancer. Again, not likely since I was premenopausal when I got my cancer and this is more an issue (but not a definite or only issue by any stretch) for much older women.

This article is glib and clearly written by someone who has not faced the disease herself. I'd suggest she be grateful for that and leave those of us who didn't get off so easily alone.

Sunday, April 27, 2014

Do It Your Way

Eight years past diagnosis for breast cancer, I'd say that I probably am cured. So why am I still keeping a cancer blog?

There are still many ways that my brush with cancer affects my life. Since I was young--only 37.5 years old when I got breast cancer--these side effects or lingering effects are likely more intense. After all, cancer can't mess with your periods if you get it when you're done with all that. But if you're not, well, it can screw things up real good. So good that all this time later, I have issues for which there are no good answers. Because having hormone + cancer takes all the first-line, easy fixes off the table. And there really is no good plan B.

And that's just the most annoying way that cancer is still in my life on a regular basis. I won't go into the others because they don't rise to this level, so I dismiss them.

Wednesday, March 26, 2014

Probably Cured

Guess I was just waiting for a worthy title before returning to blogging. I used to keep a blog where I wrote mainly about dealing with all the choices and complications of reconstructive surgery.

I'd say I'm holding pat, and maybe staying put forever, with my current stage of breast reconstruction, so this blog will likely take a different focus.

Time will tell, but for now, I'll start by explaining the title of my new blog.

"You're probably cured," is what my new oncologist told me when I went in for my first appointment with him recently. Even so, he followed with orders for an MRI of the stomach and of the breast to investigate a suspicious PET scan and a suspicious mammogram and breast ultrasound.

Since I know actions speak louder than words, and I also know "probably cured" can just as easily be "maybe not" in after-cancer-treatment-land, I filed his words as perhaps the most exquisite oxymoron I've ever heard.

Words perfect to headline my second go at cancer-related blogging.