well, hell
October 22, 2013 4:18 AM   Subscribe

I have been dating a guy for a couple of months. He told me recently that he's got a genetic mutation that makes it much more likely that he'll get cancer, and that is making me really sad.

He's the most amazing guy. I am usually an intensely private, prickly person, and he makes me feel so safe that I have felt comfortable being open and vulnerable with him from the very beginning. He told me last week that he has a genetic mutation, and that both his mom and his grandfather had it and they both died of cancer. I think his grandpa died pretty young, but his mom made it to her early 60s. This also means that there's a big chance (like 50%?) that he'll pass that genetic mutation on to any kids he has.

We've talked about it a little, and I thought I was sort of okay with it. But I woke up this morning feeling really sad. We haven't even made it past the 6 month mark yet, so I know it's silly to already be thinking about a long-term future with him. But it also feels so good and so easy being with him that I can't help thinking that I want to spend as much time with him as possible for as long as possible. And while I know that accidents and illness can happen to anyone at any time, so there are never any guarantees about how long anyone will live, the idea that he has a higher chance of dying young just makes me sad. And I know it is getting way into cart-before-the-horse territory, but if things really do go well with him, how do you approach having kids when there's such a high probability of passing down such a dangerous gene?

Anyway, I am feeling sad and muddled about the whole thing. Do you have any advice about how to not borrow worry way in advance, so that I can just enjoy my time with him and see where this relationship goes? And if you do have any experience with something like this, do you have any words of advice, or resources I should look into? Thanks for your help.
posted by swamp rocket to Human Relations (22 answers total) 3 users marked this as a favorite
Best answer: We are none of us promised tomorrow,

That being said, I personally try to enjoy each day, day by day. Bad things happen, and will happen, and we lose people along the way. But we are capable of moving on.

This guy has now touched your heart and he'll likely hold real estate in your heart forever, regardless of how you play it. If he makes you happy, I'd say: embrace that.

Would I breed with him? No, I wouldn't. Maybe the option of not having kids with a life partner doesn't work for you. (Sorry for double negatives: Maybe it is very important to you to have bio kids. I don't understand such feelings but some people obviously feel that way. If that's the case you may want to consider choosing a different partner. Or, not.)

How not to borrow worry? This problem gets easier. The worry will forever live inside you, but the worry will be obscured by joy and also by mundane day-to-day stuff. Of this I speak from personal experience. You only just heard some sad news. You are grieving. Grief lessens over time.

This relationship takes on a holy glow. It sounds beautiful. Some folks can't handle so much beauty and they run in fear, but you can make it one of the most meaningful things in your life.

It is early on, though, and down the road you might find that the two of you just aren't compatible-- So, then you thank each other and go separate ways.
posted by little_dog_laughing at 4:47 AM on October 22, 2013 [6 favorites]

Best answer: Forget his genetic mutation. Do you want to be with him? Then be with him. Lots of people are in wonderful relationships and lose their partner at some point. And I don't think anyone regrets being with someone they truly loved. If you really want kids together, you could look into adopting, or fostering, even a sperm donation. Stay the course. It's still early, but feeling loved and loving someone is relatively rare.
posted by roomthreeseventeen at 4:51 AM on October 22, 2013 [5 favorites]

Best answer: how do you approach having kids when there's such a high probability of passing down such a dangerous gene?
Consider going for genetic counselling, which is intended for exactly this set of problems. They will help you to properly understand the risks to your partner, and to potential kids. When you understand the risks, they might not provide therapy themselves but should be able to introduce you to therapists familiar with the subject.

(My link is to a British site because that's what I'm familiar with, but I'm sure that there must be American equivalents)
posted by metaBugs at 4:55 AM on October 22, 2013 [7 favorites]

Beyond all the issues of thinking too long term early on - if you get to that point this would be a prime situation to talk to a genetic councilor and for him to get tested so that you know a lot more about the likelihood of him passing this on if he does actually carry it.
posted by leslies at 4:57 AM on October 22, 2013 [1 favorite]

Best answer: Hi. I'm very similar to your boyfriend. I have an extremely high risk of cancer. My mother had it twice, my dad had it, my maternal grandmother died from it, my paternal aunt had it, etc. And my mother carries a variant of the BRCA gene (the Angelina Jolie one), which I likely carry (I haven't been genetically tested for it yet), and if I do it drastically increases my risk of cancer on top of everything else.

I have pretty much come to terms with the fact that I will get cancer.

Very early on in my relationship with my now-husband I told him all this. I told him that dating me and being with me long term almost guaranteed that he would have the stress and upset of watching his partner go through cancer treatments, and that there was a chance it could take my life. His mother too had cancer and had to go through treatments, so he knows personally how terrible that can be and how hard it is on a family. If your boyfriend is anything like me he told you this because he is seeing long term potential with you and he wants you to go in to this fully informed and honest and open. I give him full props. It is a hard conversation to have, having done it myself.

My then-boyfriend-now-husband's response was that EVERYONE has risks, everyone has dangers and predispositions and scary possibilities. Just because I have all those risk factors doesn't mean it will happen, and there are people with none of the risk factors I have that do get cancer. He said he loved me, and if I did get cancer then he is ready to be beside me through that battle. Plus, he wasn't going to throw away the best relationship he had ever had over a possible risk that may or may not come to pass.

I could live until I was 100 never having gotten cancer, or I could get hit by a bus tomorrow and die. Same goes for you. Same goes for your boyfriend. Same goes for the Queen of England and the homeless guy in the alley. There are no guarantees for anyone, good or bad. Every relationship is a risk. You just have to decide whether it is too much of a risk for you. (I think you should continue to date him, you guys sound lovely together.)
posted by PuppetMcSockerson at 5:05 AM on October 22, 2013 [32 favorites]

Best answer: It bares stating that knowledge is power. I know I am massively high risk so I am on my doctor's high screening priority list. I'm only 31 but I am getting yearly mammograms now, and I have to have yearly paps (instead of every two years that I have been going). I also have to get yearly colonoscopies because my dad's cancer, one of my mom's cancer's, and one of my grandmother's cancers was colon cancer. On top of that, I am doing everything I can to reduce my risk of cancer in other controllable ways. I am losing weight, I don't smoke, I exercise regularly, I barely drink, I eat healthily, I wear sunblock aggressively, I don't go tanning, etc. I am reducing my controllable risks, and I am addressing and accounting for the risks I cannot control by aggressive screening.

if you know you're high risk you can use that knowledge to help stay ahead of it. Is your boyfriend doing things to help reduce the risk he can control? Is his doctor screening him regularly? That would maybe affect my decision. If he was seeing it as a death sentence and took on an attitude of "Well, I can do anything I want because I'm going to die anyway" attitude and because of that smokes and engages in behaviours known to contribute to cancer then I would have very major second thoughts.
posted by PuppetMcSockerson at 5:25 AM on October 22, 2013

Best answer: Oh, in regards to kids, I decided a long time ago (well before all the cancer risks came to light) that I didn't want bio-kids. I just do not want to give birth. My husband has a son from his first marriage and I love that kid to death. He is my son, the end. I totally scored a win with that one. HOWEVER, if I had wanted to have bio-kids, I actually would probably decide not to and go about getting a kid another way (surrogate, adoption, etc). I have other family medical dispositions (severe depression, early onset parkinsons, diabetes) that also disuade me. It feels irresponsible to pass on these genes, and I don't want to saddle another person with this.

It seems to me that it would be easier in your situation, easier when the risky person is the guy. You could get a sperm donor and still carry a child and raise it with your boyfriend. For me, had I wanted bio-kids, it would be a lot more complicated. I have a cousin who is in her early 40s who has stage 4 breast cancer, and the hormones from her pregnancy with her youngest child caused the tumor to grow way faster than it would have otherwise. She probably would have a much better prognosis had she not gotten pregnant. So there's that too.
posted by PuppetMcSockerson at 5:40 AM on October 22, 2013

After my first wife died of cancer, I explicitly decided not to pursue a woman who had a history of skin cancer and another who was about 8 years older than me, specifically because I did not want to live through the cancer thing again, and the odds were against me in both cases.

Not that I am some sort of sage or quant, but man, when the odds speak against something, it's wise to pay attention. Investing in lottery tickets is not generally as wise as say, Procter and Gamble or AT&T, you know?

There aren't any guarantees, of course. And on the plus side, if you married him today, odds are he's history in 10 years anyway, just because ...relationships. Those odds are considerably more relevant. Hell, the odds you'll even marry him are slim.

If he looks like he's got 10 in him, might be a good gamble. And if he does die, 10 years of good is a lot better than 20 of crap.

I am such a hopeless romantic sometimes. (Take my cynicism with a grain or several pounds of salt.)
posted by FauxScot at 5:52 AM on October 22, 2013

Best answer: Seconding genetic counseling before planning a family; it is widely available in the US, and your primary care doctor can refer you to a counselor.
posted by Miko at 6:04 AM on October 22, 2013 [1 favorite]

Best answer: Seconding genetic counseling if the relationship becomes more serious, especially if biological children are important to you. It wasn't 100% clear to me if your partner has already undergone genetic counseling and/or genetic testing himself, or if he was describing just what he and his family think is true about their genetics (which is often wildly, wildly wrong).

Huntington's disease is quite different from cancer in many ways, obviously, but the fear of a much-shortened life and of passing on a dangerous gene are quite similar. I lived with the fear of Huntington's for 20 years before getting the genetic test that told me I didn't actually carry the gene. In 50% of the other universes it went the other way for me, and much of my family is still at risk. There's more and more people in this situation, and we're all struggling with how to live with this bizarre sort of science-fictional genetic foreknowledge.

As others have said, though, we all have the time we have, and it isn't always as much as we like, but it can't stand in the way of living our lives and being happy.

You should also know, with respect to having children, that pre-implantation intervention, while very expensive, can be basically miraculous for people in this situation -- it's possible now to prevent passing on many genetic diseases through in vitro fertilization, and if it's really a single-gene disorder it's possible his propensity for cancer will fall under that.

Good luck to you both.
posted by gerryblog at 6:09 AM on October 22, 2013 [2 favorites]

Best answer: I too have a genetic predisposition to cancer. The BRCA one. My grandmother and all but one of her sisters died of ovarian cancer before they turned 55. Her brothers died of colon cancer. (they're related). My OTHER grandmother had breast cancer.

Based on this, my mom had a hysterectomy at 36, I had mine at 42 as did my sister.

I have lived with this spectre for my entire life. But you know what? I did what I could, with the knowledge that I had and I've mitigated my chances. I get super-duper 3-d mammograms annually, and now, I'm down for the colonoscopy! You do what makes sense.

Thank GOD there's genetic testing and councelling. If you want kids, you can probably do some selection and IVF to insure that the mutation doesn't pass to your children.

Yes, it's a gamble, but all love leaves us vulnerable and scared. None of us knows when we'll die. So I say, if you dig this guy and want to be with him, do it! Science is making such amazing progress, who knows what will happen even in the next 10 years!
posted by Ruthless Bunny at 6:33 AM on October 22, 2013 [2 favorites]

Best answer: Definitely the genetic counseling. Genes are not necessarily destiny. And by the way, it is NOT silly to be thinking long-term at this point. Sometimes you just know, and the way you describe your relationship sounds very promising.

A bit of hard-earned advice: If your worst fears come to pass, then worrying now about what might happen is suffering twice. If you can, keep reminding yourself that more worrying won't solve the problem or prevent the illness. It's natural to feel sad about it initially -- but remind yourself that it's not a certainty, and when you reach the point where you've thunk all the thinks and felt all the feels about it, give yourself permission to set them aside and go back to enjoying your boyfriend and your life.
posted by Smells of Detroit at 6:51 AM on October 22, 2013

Best answer: BRCA1 mutant here: just chiming in to say that your feelings about this will definitely shift and evolve over time, and they are currently as bad as they're gonna BE (well, short of an actual-factual cancer diagnosis, of course). The first few months are the hardest, and then the giant dark specter of cancer gradually stops blotting out EVERYTHING good on the horizon. You may still have the occasional dark night of the soul about it (I myself have one decent "aaagh pain in my abdomen GONNA DIE HORRIBLY!" freakout every six months or so), but it won't be The Number One Concern in your life.

Also, cancer genetics is a really new field that's receiving a ton o' funding... there really is no telling what the outlook for genetic cancers will look like in, say, a decade or two.
posted by julthumbscrew at 6:52 AM on October 22, 2013 [2 favorites]

Best answer: I live with this too. I have had the same discussion with each of my partners a few months in to let them know about the 50/50 odds I have of inheriting a disease that will limit my lifespan to somewhere in my 70s. I never had any of them decide to leave because of this, but each of the relationships ended for other reasons eventually.

My mother recently tested positive for our particular disease in her late 50s. My little family unit of my dad and my sister and my mom and me - we have had a full, complicated, plenty happy amount of life together. I would never have picked this outcome for us, but what can you do? My aunt has also tested positive and her similarly structured nuclear unit lost the father years ago due to a freak seizure, so she is actually the longer living parent.

Every relationship (friendship, career, experience) has an end, of course. You have more knowledge about how this relationship could end if you survive a gauntlet of other life events all the way until he reaches his natural death. Making it that far together would be beating the odds in a zillion other ways, you know? Take your time feeling this out. You will figure out what the right decision is for you. Best of luck.
posted by skrozidile at 7:18 AM on October 22, 2013 [1 favorite]

As Frank Drebbin once said " You take a chance getting up in the morning, crossing the street, or sticking your face in a fan. " As many have mentioned above no one gets any guarantees. You have to decide if you are a risk taker, but he also has to decide if he will want you to take that risk. The fact that he told you could be taken two ways. Either he wants you to know what you may be in for because he wants you to make a decision, or he wants you to know what you may be in for because he can't make that decision himself.
posted by Gungho at 8:18 AM on October 22, 2013 [1 favorite]

Best answer: Anyway, I am feeling sad and muddled about the whole thing. Do you have any advice about how to not borrow worry way in advance

Note that you're currently processing this, and the way you feel about it today is likely very different from how you'll feel in a week or a year. It's entirely possible you will make peace with it and what your options might be if this progresses. Or you will decide you can't do it. But you'll probably not continue to feel as unsettled about it as you do today.
posted by Lyn Never at 9:01 AM on October 22, 2013 [1 favorite]

Best answer: Every one of us could die tomorrow, no matter what precautions we take or how genetically predisposed to a long life we are. If you choose to spend the rest of your life with someone, you take the risk of losing them the day after you make that decision. Such is life. It's okay to feel sad about it, but please don't let it stop you from enjoying every day that you do have together.

On his sharing: we walk around ignoring the fact that we could all die tomorrow, so having a reminder of it makes your sad, and that's totally normal. You don't need to decide right now if you're going to have children or not, with or without him, so just be sad and explore your feelings, and later if you elect to get more serious with him, then you wil have explored your feelings and can decide (when you're not in-the-moment sad like you are now) whether you're okay having kids.

Of course, the next guy you meet may have the same condition and just not know it. Life is a crapshoot. That's why we focus on enjoying it, because it's what we get.
posted by davejay at 10:27 AM on October 22, 2013

Best answer: This is for the kid thing. There are ways to deal with this. You'd probably need to see a genetic counselor. It's possible that if you did ivf they could test the embryos. It's also possible they could do the test in utero (which of course opens its own emotional Pandora's box) And of course if there wasn't any effective screening method you could use a sperm donor. If he's been living with this and wants children I'm sure he has thought about it and he may even have a plan for how he wants to handle it.
posted by bananafish at 12:09 PM on October 22, 2013

Best answer: Its okay to feel sad about it. Its a problem when your concern over this starts spilling into your behavior (for example, you forget to have fun together and are always focused on this one issue, trying to troubleshoot whats not even real yet etc). Its perfectly fine to feel sad and disappointed. You may not feel this way, this strongly, a week from now. We don't have to feel happy, comfortable and good all the time and not everything needs to be "solved". Enjoy your time together. It seems like you are happy otherwise.
posted by xm at 4:13 PM on October 22, 2013

Best answer: This has happened to be in the past 2 relationships I've had, in terms of being told a piece of information that made me sad/worried/upset etc.

For that specific part of your question I suggest time. The feelings will lessen in time as you process it and think it all thorugh.

I know it seems as though it's all you can think about now, but that will pass.
posted by Youremyworld at 5:48 PM on October 22, 2013

Response by poster: Thank you all SO SO much for your thoughts. I really can't express properly how grateful I am to all of you for your answers. And to those of you who have some personal experience with this: thank you so much for sharing.
posted by swamp rocket at 8:48 AM on October 23, 2013

Best answer: Oooooh, something else that will either help OR make you laugh, maybe both: about a year after I found out about my mutation, my boyfriend developed a MASSIVE cancerous tumor on his thyroid. The very first thing he did was taunt me, "Nyah-nyah nyah-nyah-nyah, I beat you to it!" ("it" being cancer). Which goes to show that there's NO telling what life will fling at you, so you kinda just have to take things as they come, and with as much black humor as possible. (We're both cancer-free for the time being, and it is awesome.)
posted by julthumbscrew at 9:45 AM on October 23, 2013

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