In the space between cancer and not-cancer
August 10, 2016 1:30 PM   Subscribe

I had a test today in which the end result may or may not be ovarian cancer. But I won't know for a few weeks. How do I keep calm and carry on until then? My maternal grandmother died of ovarian cancer, and she was initially diagnosed when she was about my age, so that doesn't help. Somewhat ironically, I just got a referral for BRCA testing last week, but don't have an appointment yet.
posted by anonymous to Health & Fitness (15 answers total) 5 users marked this as a favorite
(My best friend is 3.5 years into stage IV ovarian cancer, BRCA positive.)

You're going to take a lot of deep breaths. You're going to acknowledge that this exists. You're going to tell the most important people in your life, the ones who can truly offer you sympathy and emotional help. This may mean you exclude some people from this knowledge now, because they aren't helpful, or they're an emotional drain on you. You're going to journal, if that feels like it helps. You're going to shove it down and ignore it, if that helps. You're going to acknowledge that there's no one right way to deal with this.

You're going to acknowledge that ovarian cancer is not 100% fatal -- and because some people are survivors, you're going to imagine yourself in that group, if indeed you do have it. You're going to remind yourself that cancer treatment options are growing every single day. You're going to remind yourself that the opposite of sickness isn't just good health, it's living your life to the fullest. So you're going to continue to (fill in the blank with whatever's important to you: cook, work, drive, parent, sing, exercise, read, drink wine, travel, etc.).

Things my friend has done since being diagnosed: gotten married; parented; worked; traveled; cooked; gone river rafting for the first time. (The list goes on but I'll stop there.)
posted by BlahLaLa at 1:43 PM on August 10, 2016 [27 favorites]

i also need this advice anon, but wasn't brave enough to post.
posted by lescour at 1:54 PM on August 10, 2016 [19 favorites]

BlahLaLa's advice is wonderful. I would add "Don't ask Dr. Google to diagnose you," and I urge you against drawing a connection with your grandmother's diagnosis. It's certain that medical science has improved dramatically since then, and if you do indeed have cancer, your options are much broader. I totally understand that feeling of agonizing limbo and wanting to make sense of the situation, but try not to go there if you can.

(I'm speaking as a woman who was in your exact situation 15 years ago; I got my results after about a week, and found out I had a burst ovarian cyst and severe endometriosis. I'm still dealing with the endo.)

Would your doctor be willing or able to expedite the process and get your results to you any faster? I'm sure they don't want you to worry about this longer than you need to. If you're not feeling you can ask them, hopefully there's a friend or family member who can deal with the bureaucracy and make some phone calls.
posted by vickyverky at 2:06 PM on August 10, 2016 [2 favorites]

It's helpful to have things to do that have nothing to do with cancer and that keep you from thinking. Any movies you want to see? (In a similar situation, I decided to see the stupidest movie that was playing in my town.) Friends are great, but sometimes what you really need is to just be distracted. Take care of yourself in whatever form that takes for you.

One of the greatest lessons that I'm still learning is that worrying does not affect outcome - even though it kind of feels like you're doing something. Do you have a therapist? It can be really helpful to have a neutral third party to talk to.

Also, you are not your grandmother. If she was your age, that had to have been many years ago. Cancer treatment has much improved since then. What happened to her is not predictive of what will happen with you.
posted by FencingGal at 2:32 PM on August 10, 2016 [2 favorites]

I had surgery that required biopsies before and after, almost exactly a year ago. I wanted to let you know that if you do, feeling "lonely" on the medical end of things is totally normal. What I found weird and unexpected was how little anyone tells you about your condition while you are going through tests and waiting for results. Something is noticed, then they start ordering tests, and nobody really says much of substance until you get an official sit-down with someone who is the expert. It's understandable, as nobody wants to guess or not be sure of what they are telling patients, but the radio silence can be hard and an unexpectedly lonely time.

All this to say, two things helped: 1) talking with people who cared about what I was feeling, including my honest fears; and 2) trying to do things to distract myself and not become obsessive with overthinking (like looking up every possible outcome on google). Regarding the first one, when I was able to connect with people who were able to show me that they cared, it changed the way I think back on that time. I know I was really anxious about the results (I cried at times thinking about it), but my memories now are almost predominantly about being cared for. It's like personal connections with people have power to comfort us in ways that we don't expect. In my mind, it's almost like grieving, where the intensity of the feeling isn't always fully understood by others. But people being there to care can be a big thing.

I hope that you find people in person or online who can be that kind of a support to you. Good luck to you.
posted by SpacemanStix at 2:47 PM on August 10, 2016 [3 favorites]

Commonly known as "scanxiety."

I think it's fair to say that there are different ways of dealing with the feeling of powerlessness and uncertainty, and which is most helpful for you will depend on your personality and situation. In an analogous situation, I personally did a lot of research, which ended up being very helpful when I had to make treatment decisions where the correct course was not at all clear. But I am a researcher at heart and, while not a medical professional, have a reasonable ability to evaluate the reliability and significance of papers. It felt right to bring those tools to bear on my situation. For many people (probably most), research just becomes an endless spiral of anxiety and focusing on the worst possible outcomes regardless of their likelihood. So, be careful with that; I only want to point out that a blanket Dr. Google ban is not always the best.

I would recommend staying away initially from whatever Internet forums there are for ovarian-cancer patients. My friend looked at the forum most commonly used by people with my potential problem and said, "Dear God, don't go there, it's a charnel house." There tends to be, understandably, an emotional fever pitch in such places. While you will probably find them helpful should you get undesirable results, before you even know if you are ill, visiting is likely to be very upsetting, and unhelpfully so.

Good luck to you.
posted by praemunire at 2:58 PM on August 10, 2016 [1 favorite]

To summarise: Step away from the Internet. Step towards what makes you feel good, relaxed, true, joyful, balanced, aware and alert without being fearful and anxious.
posted by mmw at 3:46 PM on August 10, 2016 [1 favorite]

I know this is weird, but I found that is helps to think of it as Schrodinger's Cancer. At any given moment, you may or may not have cancer. The only thing that makes today different than yesterday is that you are now waiting to find out if you do or do not have a specific kind of cancer.
posted by DarlingBri at 5:09 PM on August 10, 2016 [6 favorites]

I went though this, quite horribly, last year. The waiting part. Oh god. All I could do was tell my friends I was processing difficult stuff that I didn't want to talk about but to bear with my moods and to please love me when I needed hugs and booze and chocolate. They did this and I only discussed it with my partner because although I live my life quite publicly, I don't live my existential fears publicly. I couldn't tell my friends because I didn't want to fall apart. I found having that my beloved knowing exactly what I was processing (but not always how and when) was really helpful.

For me, faking it till I made it or had confirmation either way was what helped. I tried to keep busy too. And booze and chocolate. Hugs for you possum. It was a harrowing time for me. I hope it's a great outcome for you.

Also- My bonus at the end was the empathy I felt renewed for other people facing this in a way I hadn't had when I got a dodgey mammogram. It was a good reminder that the worst thing to happen to a person is the worst thing that's happened to them. If that makes sense.
posted by taff at 6:12 PM on August 10, 2016 [2 favorites]

I give you permission to lose your shit right now. It's a big scary thing. Try to work and do your hobbies and be present, but if you find yourself drifting off and freaking out, of course you are. You are human. Best of luck in getting your clean results sooner than expected.
posted by Kalmya at 7:45 PM on August 10, 2016 [1 favorite]

I took the "complete denial" option. We get told all the time that denial is unhelpful, but honestly, when you really don't know, and you're not going to know until some sort of follow-up thing, denial is totally fine (as long as you do actually go to the follow-up). Obviously, whether or not you can do this is another matter and I agree with Kalmya - you do have permission to totally lose your shit. But you also have permission to go "tralala, test? what test? nothing unusual happening here". Whatever works for you.
posted by Vortisaur at 11:10 PM on August 10, 2016 [1 favorite]

Don't assume that the waiting will be horrible. I got some testing done and thought I would be anxious until the results came in, but it ended up being something I was able to accept that I didn't know yet and I didn't experience much anxiety at all.

A month ago, you also didn't know whether you had cancer or not, just like you do today.
posted by yohko at 11:36 PM on August 10, 2016 [1 favorite]

I binge watched Tribal Wives.

Man, it is a sucky place. But it won't last - this too shall pass. Focus on the day after - "on Saturday I'll know and the waiting will be over".

Not knowing is awful. Once you know, it can be dealt with (either way).
posted by jrobin276 at 1:33 AM on August 11, 2016

While I was in the testing-wait for results-next round of testing part of diagnosis, I was surprised to find myself with a sudden case of social anxiety, so trying to do enjoyable and absorbing things like going to see bands play and such turned out to be a big bust. However, I accidentally had the cleanest house ever. I kept thinking of cleaning/tidying things I could do that fit nicely into small, achievable tasks that made me feel better and more in control.

Helping people with their troubles also was therapeutic; it was easy for me to be extraordinarily patient with other people.
posted by desuetude at 8:30 AM on August 11, 2016

What helped me was reminding myself that the tests weren't creating reality, they were just revealing the truth that was already there. It doesn't sound all that comforting typed out, but keeping the notion in my head that nothing was going to change when I got the results made the waiting easier.
posted by donnagirl at 2:02 PM on August 11, 2016 [1 favorite]

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