Take Charge

What better time to take charge of your own health than RIGHT NOW? We’re dedicating December to that very topic, starting with this blog on what to expect with surgery, well really just what to expect with everything.

It’s a broad topic for sure – and it’s clearly different for everyone, so I’ll try to keep it as open ended as possible while still sharing some of my personal experience.

Let’s say you’ve just found out you have Ovarian Cancer. You might assume the first step is surgery to remove as much as possible. And that’s true for many patients, but not for all. It wasn’t for me. My ovarian cancer presented more as a spread of cancer cells throughout my peritoneum, so I went through front-line chemo (Taxol and Carboplatin) FIRST. And as I neared the end of that treatment cycle, we set a date for surgery – my scans were showing some progress and my CA125 had dropped a LOT (from 1386 to 12). I don’t know how other doctors do this, but at my practice, my doctor set the following expectation:

The GOAL is robotic, minimally-invasive surgery, but it all depends on what I see in there.

OK, that makes sense. But guess what? You don’t know what happened until you wake up from surgery. My first piece of advice – be prepared for anything. Always, always hope for the best, but also prepare your mind for something less than that.

For me? I didn’t do that. I mean I was prepared for maybe having the more in-depth surgery, but I wasn’t prepared for what came. I woke up and found out that my “field” wasn’t clean enough yet so they closed up my little robotic surgery spots and decided to do another round of front-line chemo. WHAT??? Wow, it was tough. Really disappointing to wake to that news. And some people wake to the news of having to be cut open, and maybe they had to resection a bowel, or that the cancer has spread more than they thought. And listen, this is major surgery, no matter what happens, so be prepared for pain and recovery time. Give your body the time it needs. And be prepared.

The best way to really prepare is to ask as many questions as you can, throughout the entire process – starting with your medical team.

There are plenty of resources on the internet for asking the right questions – about your treatment, side effects, choices, trials, surgery, and more.

I found the following to be most useful:

http://www.cancer.net/cancer-types/ovarian-fallopian-tube-and-peritoneal-cancer/questions-ask-doctor

http://www.cancer.org/cancer/ovariancancer/index

Also find a support group, either formal or informal. I’ve got my team of 3 – we’re in different places with our treatments and responses and we are really there for each other. You need people who get what you’re going through on a very personal level. It will make a huge difference along the way in answering all kinds of questions.

And my final piece of advice on this. Be careful about how much you read on the internet. I had to avoid it altogether for the first year really because I just didn’t want to see the statistics and read the bad stories. I needed to keep a positive outlook and that just wasn’t going to help. So I’d ask a friend to do some research for me and just send me what I needed to know without getting into the statistics. Or I’d turn to my own support network for those questions. So it’s a fine line – get the data you need but try not to become consumed by the negative. It ain’t pretty for ovarian cancer – that’s just a fact. But guess what? Even if the survival rate were 1%, somebody’s got to be in that number. Why not me? Why not you? Dr. Benigno told me in the very beginning – it doesn’t matter what all those statistics say because your chances are either 0% or 100%. Let’s choose 100%. It’s true.

Definitely take charge of your own health. Ask questions. Be prepared. Do some research or ask someone to help you with that. And try to avoid the things that bring you down – the statistics, the stories all around you (and that will happen – I’m shocked how many people I know who have been touched by ovarian cancer) – it can be overwhelming. Even so, cancer research is progressing so fast now – it’s exciting and hopeful. The work here at OCI is part of that – they are LITERALLY focused on saving lives with the new diagnostic test and more specific, targeted treatments for patients. We’re all going to be part of a time period where the statistics become so much better for this cancer and others because of organizations like this. I’m so proud to be a part of that.

Take care this holiday season. Do what you need to do for you!

– Ann