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Friday, July 15, 2011

Assessing risk

If several members of your family had died from breast cancer, would you want to know if you carried the breast cancer gene or not? What if you were only 18 years old?

That is the scenario described with this British family - 18-year-old Josie is facing whether or not she wants to know, based on the fact that both her grandmother and her great-great-grandmother died of breast cancer. Her mother already had a double mastectomy as a preventative measure.

I have heard of others doing this before - even in the absence of actual cancer - and while I can't necessarily blame them, I feel that it's a bit premature. It saddens me, almost, because to me it means they're living their lives in fear. Trying to cross a bridge they haven't even come to yet, or might not, ever in their lives.

Risk is not always absolute.

Although there is some family history, it's not like it was her mother, her grandmother, and all her aunts. A great-great-grandmother, while lurking in the background, is not really considered an immediate family member. As someone pointed out on my FaceBook page, one thing can really lower that risk: breastfeeding. Did this girl's mother breastfeed her? I don't know exact breastfeeding rates for 18 years ago when she was born, but if they follow current "trends" I'd have to guess that no, she didn't. Was her mother breastfed? Based on the photograph, I'd say she's maybe in her mid-50's. Breastfeeding was on the verge of being abysmally low then, what with the introduction of milk substitutes and hospitals taking a very aggressive stance against nursing. (Although this family is from the UK - where breastfeeding rates are the lowest of all Europe.)

I have to wonder - if part of that fear instilled in her about the possibility of cancer hasn't been part of her own mother's fears transferred to her. Growing up with a mom who had a preventative mastectomy can't be easy to ignore; breasts are therefore seen as weapons of mass destruction rather than a source of nourishment, comfort or pleasure. The idea of being gripped by fear over the possible results of a blood test is like letting those results - real or perceived - rule your life. This girl has dreams and plans of doing things and yet is already acting like she's been diagnosed.

One thing Josie has on her side is technology, and studies that tell her certain things that perhaps they didn't tell her grandmother: that breastfeeding - both just doing it to begin with and for a longer period of time overall - can greatly reduce her risk of getting cancer. That just because she might have the gene, that still doesn't mean that she will get cancer. That even if she does get cancer, there are much less invasive treatment methods that can save the breast. That only a small percentage - maybe between 5-10 percent - of breast and ovarian cancers are inherited. That a portion of breast cancers are a result of hormone replacement therapy and are estrogen-fed tumors. Does that mean her mother went through a double mastectomy for nothing? Maybe.

One side note: Many breast cancer advocacy groups want to increase awareness, both of risk factors and ways to prevent it. Unfortunately, long-term breastfeeding - or nursing at all - doesn't often make the list, which is troubling.

A dear friend of mine died several years ago after a long battle with breast cancer. I don't know that she had any family history, but she originally got breast cancer at age 40, back in the early 1980s. There weren't many options available then, so her choice was a radical mastectomy of the affected breast. Over the next few decades, she fought cancer at least three more times, eventually succumbing. Why? Because they detected the original cancer from the breast - more than 20 years later - in her uterus. What does that mean? That even with a mastectomy, the breast cancer can still kill you. Then what?

I would argue that my friend crossed that bridge when she came to it - rather than systematically removing body parts to ostensibly lower her risk, she lived her life as well as she could in the midst of everything. She enjoyed her children and her grandchildren. She enjoyed an amazing support system of friends and family. But she did not live her life in fear.

One thing I have to wonder: what does a surgeon do when a woman so wracked with fear and emotion comes into his office demanding a double mastectomy? Does he educate her about her risk factors? Does he tell her no, because there is a chance she might not even get cancer? Does he do it anyway, figuring she'll just find a surgeon who will? I don't know what Josie's mom's doctor told her, because maybe some of those things weren't as fully understood as they are now. But I do know what Josie's doctor should be telling her - and saving her from the fear that has controlled her mother's life and now is about to control hers, if she lets it.

Dr. Amy Tutuer likes to argue that, as far as matters of childbirth and pregnancy, women cannot fully understand risk. She basically makes women sound helpless and stupid, as if they are incapable of coming to any conclusion on their own. I argue that while they may not all be doctors and surgeons, they can understand - if counseled properly, and adequately, by their doctors, as well as encouraged to do their own research. How can you come to a rational decision when you're thinking irrationally? When not all the facts are presented, or are falsely misrepresented, how can you make the best choice? It may be too late for her mother to change things, but it isn't too late for Josie.

More reading:
Breast cancer risk: Should I have a BRCA gene test? 
Preventative mastectomy doesn't benefit most, study finds

9 comments:

K said...

This is an issue close to home. My sil carries BRCA 1 and 2. She had a prophylactic mastectomy and found she had Stage O BC. She also had a complete hysterectomy and oophorectomy. She has 5 daughters. Her oldest is almost 15. The oldest asked her parents if she was at risk for BC and they told her no. :sigh:
I don't know when and if they plan on telling this child and her sisters the truth. Almost every.single. female blood relative of my sil had/has/ or died of breast cancer. The risk for these girls is astronomic. Whether they choose to be tested or go through with prophylactic treatment is of coure a highly debatable decision but not educating these girls, not teaching them to breast exams as soon as their breasts develop I think is unconscionable. I pray that they realize while this knowledge will be frightening and a cross to bear for their girls, it may also save their lives.

My mother has Stage IV BC, no BRCA.

The Deranged Housewife said...

In your situation, I do think there's clearly a very strong familial link and perhaps testing might solve something. But the younger generation has so much more access to treatment, screening and other options for prevention that probably didn't exist for many of them.

And teaching them how important it can be to lower your risk by breastfeeding is important, too. Not too many campaigns talk about that, unfortunately.

One problem, though - even if you remove the ovaries, uterus and breast - you still produce hormones from the pituitary as well.

K said...

It's not just about removing the hormone producing glands, it's about removing the tissue with the defective code to develop cancer.
If you have no uterus, breasts or ovaries you can't develop uterine, breast or ovarian cancer.

I don't know why anyone would remove their breasts or have a hysterectomy without having genetic testing. If you are not BRCA positive, while you can still get cancer your risk is siginificantly lower. I have no intention of having a mastectomy just because my mom has had BC. The only thing I will do though is have a bilateral mastectomy vs. a unilateral if I ever do develop BC.
I've breastfed for 10 years cumulatively (research shows you need at least 24 months to reap any risk reduction benefit), I do not take hormonal BC, I avoid phytoestrogens, I do not smoke...I've done quite a bit to decrease my risk but it will never be zero....unless I remove my breasts which in a risk vs. benefit scenario does not make sense.

The Deranged Housewife said...

Well, there is still the possibility that you won't get it even if you do have the gene. But that might not be enough for some, i guess.

K said...

For some women who carry the BRCA genes the risk of developing BC is as high as 80%. That's pretty high. Women have ERCS on the less than 1% chance they will have a UR. Do you think anyone would VBAC if there was an 80% chance that their uterus would rupture? I don't think most women would even get pregnant.

80% chance of developing breast cancer, probably before you are 50 and probably not hormone receptor positive, iow, more aggressive?
And most of these women watched their mother, aunts and/or grandmothers fight and often die after surgery, radiation and chemo, sometimes years and years of it? I can see how a couple surgeries and some reconstruction to prevent that scenario can be mighty attractive.

When faced with dying with breasts or living without them the decision for these ultra high risk women is pretty simple in most cases.

The Deranged Housewife said...

I can understand that. But technology, prevention methods, surgical methods, drug therapies - all kinds of stuff - has changed so much just from one generation to another that it can make a world of difference for many, even with risk factors that high. If you do fall into that high risk category, early detection is key, I would think, before automatically getting into the mindset of someone who is already diagnosed. The girl in this article doesn't even have the strong family history that yours does, and is already behaving as if it's a death sentence. But what does she really know about early detection? Treatment methods, etc. and how they've changed even since her mother underwent a preventative mastectomy?

And there always is the breastfeeding factor - one article I read stated that there could be as many as 25,000 cancers prevented if more women breastfed long-term. That obviously doesn't mean you don't still stand a chance of getting it, but it's an easy way to lower your risk.

Anonymous said...

I've been reading your blog with interest. I appreciate the time and thought you put into your posts.

Gotta disagree with you on the dr Amy comment, though. Dr Amy doesn't think women are stupid. Dr Amy thinks some people are deliberately deceiving others fir their own personal gain. The deception is couched in language of motherhood and vegan-organic-apple pie. Most people I know have gotten confused by at least one of these things.

To bring it back to practical examples: VBAC should be planned for many women. (according to dr amy's post from today, and I trust her numbers) The uterine rupture rate is about 0.8% for each vbac attempt.

Only 6% of babies die in a rupture, so that's 0.048% chance of loss. Sounds scary, but compared to down syndrome, mental ilness, physical disability that can occur in any birth....those odds are not so bad. But I never see the actual numbers presented in pro-vbac essays.

It's not that women are stupid, it's that women don't want to say out the calculations they are making when they excersize their choices.

For example, I recently installed window guards on the fire escape windows in our apartment. I purposefully chose difficult to menouver locks, despite the added danger in the case of a fire. I added the gates to protect from the small chance someone wants to break in that way. My feeling is that the most imminent danger lies in my young children purposefully opening window and climbing out. That is less intrinsically dangerous than either a break-in or a fire, but much more likely.

If a mother decides that she wants to decline a cs, she should have the choice. I just don't think it's fair for the internet to tell he that her doctor must be wrong/lying about her situation and the risks she is assuming.

Hope this wasn't too long to read!

The Deranged Housewife said...

Yeah, about Dr. Amy. Part of that might be true; I don't know. I also think Dr. Amy is deceiving women, belittling them for their choices and doing so because of her own huge ego. Nothing she's said that I've ever read has come across without her egotistical, superior approach that "she's right because *she's* the doctor." Also, depending on the source you use, the rate of U/R could vary. A doctor who is not so supportive of it is very likely to give you a higher rate of U/R; I know mine definitely did.

I know they also curse the "internet" because it's a free source of support, and in many cases, knowledge. However, that knowledge is shared from many people - patients, people who have been there, and even doctors. What would be the difference if someone, say, read her blog and then decided not to attempt a VBAC? You need to read between the lines a little. Her tone is usually very harsh and condescending. Either way, it should be up to the mother. One person might totally be willing to accept a level of risk - successfully - that another person wouldn't even attempt.

The Deranged Housewife said...

I also know, from personal experience, that my doctor tried to sway me away from a VBAC attempt and told me how dangerous they were; he also presented a repeat, unnecessary cesarean as a totally safe option and never mentioned either short- or long-term repercussions of doing so. Until I brought it up with him. :)