Genetic betrayal
Dec. 20th, 2005 06:02 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
dreaminghopeMy mother is a breast cancer survivor. She was diagnosed at the age of 49, had surgery, then had both chemo and radiation, plus Tamoxifen after. She has been in remission for years now. I have also had one great-aunt on each side of the family get diagnosed with breast cancer. My sister and I, however, have an only slightly elevated risk for breast cancer. It is unlikely to be genetic, though my doctor always reminds me to do my self-exams and tells me that I should start having mammograms at the age of 40, which is earlier then usually recommended, just as a precaution. My mother has not bothered with genetic testing*, and I don't want her to.
I remember the day of my mother's surgery more clearly then anything else about the early days of her diagnosis. My dad was out of town on business; my mother insisted that he go, that he not miss work for this. My sister and I stayed at home; my mother wouldn't let us take her to the hospital. She went in only knowing that the biopsy came back "cancer". The doctor didn't know whether it had spread or whether they would be doing a lumpectomy or something more.
My sister and I didn't talk much that day. We pretty much sat and watched TV all morning, waiting for the phone call about the results. I answered the phone when the doctor called. My mother's breast had been removed. Some of the lymph nodes had been taken too; they thought they'd gotten it all now, but there would be some further treatments, just in case. We could visit that evening. We did; I don't remember what we talked about, only that it looked like Mom had been crying.
Russ stayed over that night; the first time his parents gave him permission to sleep over that wasn't crashing after a party. I don't remember if we talked at all. I remember that he held me for a long time. When we cuddle, we always end up in the same position: on our sides, Russ behind me with his top arm snuggled across my body, cupping my breast in his hand. That night, I lay in his arms, taking comfort in his presence, and wondered what it would be like to not have that breast anymore.
This has all come up for me again because of some recent developments in Russ' family. This past summer, Russ' grandmother on his mother's side was diagnosed with breast cancer. It was caught early. There was surgery and she is going to have radiation treatments. This month, Russ' aunt, his mother's sister, was diagnosed. Her cancer was moving fast, and she had surgery immediately. There will probably be chemo and radiation. This is in addition to a great-aunt with breast cancer in their family's history as well.
That's a lot of women with the same kind of cancer in two generations. There just aren't that many women in that family. Russ' mother only has the one sister, and then there's the two "kids": Russ' sister and their female cousin. Everyone is scared for their grandmother, for their aunt, for themselves. Russ' sister is convinced that she's going to get breast cancer.
They are probably good candidates for the genetic testing, but would knowing be better then wondering? The testing isn't good enough to tell the women that they are going to get cancer, only whether or not they have a genetic risk. But if the results say that they are genetically predisposed to breast cancer, then what choices do those women face? They can get tested more frequently, change their lifestyles, and consider prophylactic surgery. None of these things are guaranteed to prevent breast cancer. But testing positive for altered genes does not predict cancer with 100% accuracy either, so extreme measures (removing breasts as a preventative measure seems pretty extreme, but may be necessary in some cases) may be taken for no reason or benefit.
How do you decide whether or not you get the genetic testing? The results don't just impact you, but also impact your family members, who may not have consented to the test. How much would you want to know about the future? Would you want to know what, barring accident or violence, was most likely to try to kill you one day?
*If you want more information about the genetic testing for breast cancer, including what it can and cannot actually tell someone, the National Cancer Institute's article seems like a good basic resource.
I remember the day of my mother's surgery more clearly then anything else about the early days of her diagnosis. My dad was out of town on business; my mother insisted that he go, that he not miss work for this. My sister and I stayed at home; my mother wouldn't let us take her to the hospital. She went in only knowing that the biopsy came back "cancer". The doctor didn't know whether it had spread or whether they would be doing a lumpectomy or something more.
My sister and I didn't talk much that day. We pretty much sat and watched TV all morning, waiting for the phone call about the results. I answered the phone when the doctor called. My mother's breast had been removed. Some of the lymph nodes had been taken too; they thought they'd gotten it all now, but there would be some further treatments, just in case. We could visit that evening. We did; I don't remember what we talked about, only that it looked like Mom had been crying.
Russ stayed over that night; the first time his parents gave him permission to sleep over that wasn't crashing after a party. I don't remember if we talked at all. I remember that he held me for a long time. When we cuddle, we always end up in the same position: on our sides, Russ behind me with his top arm snuggled across my body, cupping my breast in his hand. That night, I lay in his arms, taking comfort in his presence, and wondered what it would be like to not have that breast anymore.
This has all come up for me again because of some recent developments in Russ' family. This past summer, Russ' grandmother on his mother's side was diagnosed with breast cancer. It was caught early. There was surgery and she is going to have radiation treatments. This month, Russ' aunt, his mother's sister, was diagnosed. Her cancer was moving fast, and she had surgery immediately. There will probably be chemo and radiation. This is in addition to a great-aunt with breast cancer in their family's history as well.
That's a lot of women with the same kind of cancer in two generations. There just aren't that many women in that family. Russ' mother only has the one sister, and then there's the two "kids": Russ' sister and their female cousin. Everyone is scared for their grandmother, for their aunt, for themselves. Russ' sister is convinced that she's going to get breast cancer.
They are probably good candidates for the genetic testing, but would knowing be better then wondering? The testing isn't good enough to tell the women that they are going to get cancer, only whether or not they have a genetic risk. But if the results say that they are genetically predisposed to breast cancer, then what choices do those women face? They can get tested more frequently, change their lifestyles, and consider prophylactic surgery. None of these things are guaranteed to prevent breast cancer. But testing positive for altered genes does not predict cancer with 100% accuracy either, so extreme measures (removing breasts as a preventative measure seems pretty extreme, but may be necessary in some cases) may be taken for no reason or benefit.
How do you decide whether or not you get the genetic testing? The results don't just impact you, but also impact your family members, who may not have consented to the test. How much would you want to know about the future? Would you want to know what, barring accident or violence, was most likely to try to kill you one day?
*If you want more information about the genetic testing for breast cancer, including what it can and cannot actually tell someone, the National Cancer Institute's article seems like a good basic resource.
![[identity profile]](https://www.dreamwidth.org/img/silk/identity/openid.png){kind=small}
no subject
Date: 2005-12-21 03:09 am (UTC)no subject
Date: 2005-12-23 03:15 am (UTC)no subject
Date: 2005-12-21 03:16 am (UTC)As for my answers...wow. These are terribly difficult questions of course. For ME, I think, the answer would be to go ahead and have it done. I'm already a hypomaniac so additional information is unlikely to make me any crazier than I am.
I have similar questions about the mood disorders that both R-- and I are probably passing along. I've heard that testing isn't far off. I worry about my childrens' choices. My daughter's very-serious boyfriend has schizophrenia in his immediate family and I wonder what my grandchildren might experience.
The biggest question, for me, is this: If I had known that both R-- and I were bipolar,(from long lines of bipolar people,) would I have dared to get pregnant with our son? He's very likely to be affected but he's also charming and beautiful and gifted to boot. How does one make that kind of decision?
And what would I advise my children to do if they ever asked my opinion about having children?
no subject
Date: 2005-12-23 03:08 am (UTC)It has a lot to do with the number of cases versus the number of people. Russ' mother's family is much smaller, so in 2 generations, 3 out of 4 women have developed the same cancer. My mother's family is huge. We only have 2 cases in two generations, and it is 2 out of more then a dozen women.
If my risk factors were higher, I think I would want the testing. I think I would want to know so I could work on prevention if necessary.
I don't know how knowing about this would/will affect my decision about children. Russ and I aren't planning on having kids anyway, but if we do have any, I will be very aware of my daugher's higher risk factors.
What hard decisions to have to make. The only thing I can think of is that having children is always a risk. Even with "perfect" genes, things can go wrong and a child will end up with an emotional, mental or physical disability or difference.
At least with cases where you know what they are at risk for, you can take preventative measures, watch for early warning signs and educate them about what they may face. I don't know if that's enough, though.
From my outside perspective, having children looks terrifying, regardless of family history.
no subject
Date: 2005-12-21 04:47 am (UTC)I don't know. Its one of those things that until you are sitting there with the choice in front of you, you never know how you will react.
~hugs~ if you need to talk you have my number.
no subject
Date: 2005-12-23 03:13 am (UTC)I've heard about that. In families where breast cancer is taking over, women get both breasts removed as a preventative measure. But the prevention isn't 100% - some tissue remains, and a tumor can still grow.
It is scary that you could do something so radical, and still get sick. I don't know if I would do it, but you are right that I don't know what I'd be willing to do if I was actually in the situation. I hope Russ' sister and cousin don't have to choose.
Thank you for the support; I appreciate it.
no subject
Date: 2005-12-21 05:29 am (UTC)My mother decided not to get the genetic testing done. if it was me, however i would have. ( there is some big long explination that my doctor gave me as to why me and my sister should not bother with test untill we are older, but as i said, it's long and complicated.)
to me, knowing you are more likely to be afflicted with something in the future means you are able to take more steps to prevent it. For example, the self exams and eailier/more oftan mamogram tests don't constitute a life altering prcaution. but the decition to remove a breast is. ultametly the decition can only be made through the assesment of the risks you face. Also, by being awar of the risks for yourself and your children, you are better able to prepare them for any eventality that could occure. I'm not saying they should live in fear of develping the condition, only that they deserve to be aware of what may be facing them down the road. One of the things about my family that has always bothered me was that we do not talk about physical failings, be it illness, desease, disabilities, or emotional probloms. there are so many inherent probloms in both sides of my family that i remained largly unaware of, untill i did something that was potentially harmful. i don't belive that keeping a child in ignorance about possible inherent probloms is protecting them. in fact i found that it acually limited the choises i could make. Becuse i didn't make decitions with the support of ALL the important knowlage, i am still paying for them now *points to sholder*.
*hugs* my thoughts are with you and Russ.
no subject
Date: 2005-12-21 02:45 pm (UTC)2) I would want to know, and thus would want to be tested. I think that the more information I have, the better I can "improve the odds" of living a healthy life, even if the tests are not 100% accurate (If it is 80% accurate, that would give me the same odds as my flu shot has of working, for example, and I think that is a healthy thing to do).
3) Another thing to think about...are you planning on having kids? If so, is adoption an option?
no subject
Date: 2005-12-23 03:35 am (UTC)Thank you. I appreciate that.
I guess I wonder why all of us don't work towards a healthy life any way? If the genetic test came back that you didn't have whatever distorted gene you were worried about, that doesn't mean you can be careless with your health. You can still develop the disease; you have the same risk as the rest of the population.
I don't know how much this would influence my decision about children. Even if it turns out that breast cancer runs in Russ' family, it isn't necessarily a death sentence. If I really wanted kids, I don't think I would let the chance that my girl might develop cancer at 50 change my mind. And that's assuming I don't believe that no better prevention or cure would exist by then.
Also, having children is always risky. If Russ and I's genes don't predispose our hypothetical children to breast cancer, it doesn't mean they won't be born with a birth defect or develop leukemia.
no subject
Date: 2005-12-23 03:25 am (UTC)I appreciate your support. ~hugs~
no subject
Date: 2005-12-21 07:39 pm (UTC)My mom passed away from a type of cancer that often has a very strong genetic link (colon cancer.) It's fairly rare for people to get that type of cancer so young unless they are from a family with a strong genetic disposition to it. However, no one in her biological family that I know of has had it. This may mean that she was a one in a million case, or it may mean that she was just the first person to develope it out of her family.
I know there is some genetic testing they can do for colon cancer, but I don't know if I'd be able to get it done. I'm going to look in to it in the new year. I'd rather have more information than less. If there's a strong chance that I will get cancer one day, then I'd rather know so that I can watch for it and hopefully catch it really early if it does happen. Usually with cancer the earlier you catch it the better your survival odds are, and the less aggressively you need to treat it. So that's where I sit with the whole thing.
The other thing that's helped me is the knowledge that genes aren't destiny. Even if you do have a gene that says you have a predisposition to get a certain type of cancer, it doesn't mean for sure that you will get it.
(Hugs) again.
no subject
Date: 2005-12-23 03:42 am (UTC)That's what I'm scared about with Russ' sister, especially if they have the genetic test and it comes back with bad results. I'm afraid she won't understand that it only represents an increased risk, not a death sentence. I don't know if she's prepared for what the test results might mean to her, her mother and her cousin.
Thank you for the offer of someone to talk to. I'm generally doing OK, but we'll see how Christmas goes, when we are with that side of the family. I'll call you if I need to - thank you.