re: Anyone Have Experience with Ovarian Cancer - UPDATE - 3/13

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31...and give it to me..im already stressed out

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In general, I understand younger is better. If the staging is good and the tumor hasn't spread (I am scientifically stupid and can't even pretend to be a physician) beyond the ovaries, I think the survival rate at her age is very high. The issue with ovarian, as I was told over and over, is that screening just doesn't happen in a systematic way, so finding the tumors early is a challenge.

Our friend was in her early 30s. She was diagnosed in fall 2015 and began chemo, which unfortunately (supposedly) did not stop the spread of the cancer. A couple months later, after her first round of chemo was completed, she was diagnosed as stage IV. We lost her about 2 weeks after that. FWIW, some of our friends are doctors and think there is a reasonable chance they misdiagnosed her at the outset. Either way, several of her doctors told us they had not seen anything like this, with chemo and radiation seemingly entirely ineffective.

I can't pretend to put myself in your position. The girl I'm talking about was a close friend and we we saw most of this up close and personal at the hospital, but obviously you have to make decisions best for you and your wife. But again with the caveat that I largely don't know what I'm talking about, I'll give you my biggest takeways:

1) Get the best care you can reasonable afford and get it from the outset. I'll get to why this was made difficult in a second, but we were at a major Atlanta hospital, and I don't think anyone who witnessed what happened feels good about the treatment received. One of our friends, who is a radiologist, told me during her first chemo run that he didn't feel great about what was going on and that if it were his wife, she'd already be in Houston (MD Anderson) or NY (Sloan Kettering). I don't know that it would have helped our friend, but I certainly wish it had been tried.

2) Fight immediately and continuously. When our friend was diagnosed, none of us imagined she would be rediagnosed at stage IV 8 weeks later. She postponed getting scan results because of family trips and obligations. Again, I don't know that it would have made a difference, but where I used to sort of scoff at the concept of time being of the absolute essence, it may truly be.

3) Put a decision making and information sharing structure in place. Our experience was chaos. I was talking directly to doctors (no idea how this works with HIPAA), her parents would have one of us talk to a physician and then talk to the other parent, only to find out another attending had told the other parent something radically different. Things felt like they were changing daily (and probably were to some extent), but I think a lot of it was miscommunication. Our friend didn't really want to know terrible news, and I get that, but someone needed to be the point person. She was unmarried (bf), so at that age you're in an awkward period where arguably you, your BF, your parents and your close friends are all leading the effort. It just didn't work. As her husband, you and her should be the tip of the spear, and hopefully you won't experience anything like that. Be relentless.