Genetic testing, “previvors” and me
October 9, 2007
(Pretentious Bastard, you may want to skip this one, I certainly don’t want to trigger anything.)
This month is National Breast Cancer Awareness month. Summary: My great-grandmother had breast cancer at 35. She had a double mastectomy and survived. My grandmother battled both breast and lung cancer–but I suspect that the lung cancer has more to do with her smoking. My aunt had breast cancer a few years ago. My mother had breast cancer at 60. She had a single mastectomy and a year of radiation treatment. I am happy to say that they all survived.
There is a genetic test that determines if you have a gene that’s been linked to breast cancer. It is being pushed on women, especially on women with family histories of breast cancer. There’s even a television ad to try and get women to take it. I feel that taking the genetic test is somewhat pointless. My odds for getting breast cancer are told in my family history. I don’t think that the genetic test is going to tell me anything I don’t already know–that I have a high risk of developing breast cancer? I already know that, thanks. One look at my family history tells me that. What it will do is force me into a group describing themselves as “previvors”. These women have already decided that they will get breast cancer and survive. Good for them. However, I choose to be myself, and not define myself by a disease that I have not yet developed.
This is why I am ignoring the articles being sent my way about preventative masectomies. I will not mutilate my body from fear over what might happen. Regular check-ups are happening, and will continue to happen until I die (given the preventative attention and family history, it probably won’t be from this). Once I actually develop breast cancer, it will be treated in the most effective way possible. (After all, I don’t see any men at risk for testicular cancer being told, “Maybe it’d be for the best if you just had them removed.”)
The finger below is for people who decide that their way of dealing with illness is the only way, and try to use fear and emotional bullying to make everyone deal with it the same way. Respect that it is my body, and my decision. It’s also for cancer itself, from my great-grandmother, my grandmother, my mother, my aunt, my sister, and myself.
What a hilarious website. And it’s great to see women stress surveillance, high risk or not. I hope not to further offend, (yikes), but I’m concerned when you say, “My odds for getting breast cancer are told in my family history. I don’t think that the genetic test is going to tell me anything I don’t already know–that I have a high risk of developing breast cancer? I already know that, thanks. One look at my family history tells me that.”
Actually, you truly only have a 50/50 chance if one of your parents was a carrier of the gene. It sounds like if someone strapped you down and forced you to take the test, and you got the unlucky one of the two gene straws, you would still opt for surveillance (and not for the total abdominal hysterectomy and prophylactic bilateral mastectomy that I chose at 40 after losing every woman in my family who came before me, including my sister last year.)
So why test? Surveillance is a perfectly sane choice — good for you. As far as the test being pointless, though, even if you choose not to act on a positive diagnosis, wouldn’t it be a kick to come up negative? You’d still need to do surveillance, just like any woman, but wouldn’t it be a relief to find out you’re NOT high risk after all?
If you doubt that your chances are 50/50, please seek confirmation of your opinion through a certified genetic counselor. Sometimes it seems like, if everybody before me got this, how can I not? But you’re only thinking of your direct line whence it came, and not all of the sibs who diverged off your family tree along the way, BRCA-free.
Sorry you have to deal with this at all. I wish you luck, peace, and a negative status, whether you find it out or (probably!) not.
Dear Cyradisb,
It is unfortunate that you associate the word “Pre-vivor” with being forced to do anything about your risk. Pre-vivor stands for “survivor of a predisposition to cancer” a term coined by members of the organization FORCE: Facing Our Risk of Cancer Empowered (http://www.facingourrisk.org) to give a voice to a marginalized and misunderstood community of people who are at high risk for cancer. Members of the pre-vivor community face the challenge of living with knowledge that they are high risk. They often have to make difficult choices or undergo procedures that are often employed in people with cancer, yet they don’t have a diagnosis. Yearly breast MRI plus mammogram, transvaginal ultrasounds, decisions about taking medications to lower the risk for cancer, and the agonizing decision about whether or not to have surgery to lower risk are part of agonizing issues that face the high-risk community. None of it is easy and the decisions are very individual. And FORCE as an organization supports informed decisions based on information from experts in cancer genetics.
I understand your anger, and I share your anger towards cancer. However I am saddened by your anger towards a community that, (whether or not you acknowledge the connection), you are a part of. The high-risk community, those with a family history and particularly those with an inherited mutation that increases the risk for cancer shoulders an unfair burden of cancer. Nevertheless there are groups out there that vocally believe that there is too much research into cancer genetics. The term pre-vivor was coined to unite a community that is not receiving the share of research dollars or resources in proportion to the cancer burden this community carries. If we ever want better options: better preventions, better screening, and better treatment options, our community needs to advocate for it. I admire your confidence in the effectiveness of breast cancer treatment should you be unfortunate enough to be diagnosed but as someone who went through 6 cycles of chemotherapy and 33 radiation treatments in order to improve my survival odds by about 10% to live to see my son who was a toddler at the time grow up, I personally would like to see better, less toxic, more effective treatment options.
There is nothing about the term pre-vivor, about the organization FORCE or about genetic counseling and genetic testing that mandates someone to have surgery to lower their risk for cancer. Genetic counselors in general take a nondirective approach to risk management and help the patient make an informed decision for risk management that is right for them. There are other options available, beyond surgery, however, the only way to learn these options and to know the relative benefit and limitations of each is to speak with a qualified expert in cancer genetics which is typically the genetic counselors and geneticists.
As a cancer survivor and a woman who carries a BRCA 2 mutation, and as an advocate for the high-risk and BRCA community I deeply respect you decision not to have genetic testing. However, I do worry about the lack of complete information reflected by the post, which makes me concerned that you have not consulted with a genetic counselor prior to making your decision. The omission of acknowledgement of risk for ovarian cancer, for instance, is of concern. Genetic testing can help determine the risk for ovarian cancer in your family. Further, as a genetics expert would explain, you would not be the best first person to have genetic testing in your family. Genetic testing is best approached in a family by testing the person most likely to carry a mutation. Your mother or your aunt would be the most appropriate first person to have testing in your family.
I am sorry that friends and acquaintances have taken a strong-arm and likely well-intentioned but misguided approach your cancer risk. No one can tell you what to do about your cancer risk and although I’m sure that the approach comes from caring about you, I do believe that people who try to pressure loved-ones into action are misguided. My general suggestion to anyone who is concerned about a loved ones risk for cancer is to dispense with the statistics and articles (unless asked for) and to help their loved one get to a genetics expert where they can get the most credible and up-to-date information available.
I know very few other medical subjects that elicit such a strong reaction from people. I know very few people who wouldn’t run straight to a breast surgeon for a lump in their breast, most people will find a cardiologist to work up their chest pain, most people will have suspicious moles looked at by a dermatologist without question. But I have found when it comes to the topic of hereditary cancer risk, risk management, and genetic testing, many people will make medical decisions and draw conclusions without the benefit of consulting with a genetics expert to receive credible and up-to-date information on which to base their decision.
As a patient advocate for the high-risk and BRCA community, I don’t promote or discourage genetic testing or one risk management strategy over another. But I am proud to say that my mission and goal and the goal of the organization FORCE which coined the term “Pre-vivor” is to help people get the information that they need to make informed decisions. One of the most common questions that I field is how to find a genetics expert. For anyone who is seeking genetic information, you can find a genetic counselor through the National Society of Genetic Counselors at http://www.nsgc.org . You can also find genetic experts through the National Cancer Institute by calling (800)4CANCER.
Warm regards,
Sue
Dear Cyradisb,
It is unfortunate that you associate the word “Pre-vivor” with being forced to do anything about your risk. Pre-vivor stands for “survivor of a predisposition to cancer” a term coined by members of the organization FORCE: Facing Our Risk of Cancer Empowered (http://www.facingourrisk.org) to give a voice to a marginalized and misunderstood community of people who are at high risk for cancer. Members of the pre-vivor community face the challenge of living with knowledge that they are high risk. They often have to make difficult choices or undergo procedures that are often employed in people with cancer, yet they don’t have a diagnosis. Yearly breast MRI plus mammogram, transvaginal ultrasounds, decisions about taking medications to lower the risk for cancer, and the agonizing decision about whether or not to have surgery to lower risk are part of agonizing issues that face the high-risk community. None of it is easy and the decisions are very individual. And FORCE as an organization supports informed decisions based on information from experts in cancer genetics.
I understand your anger, and I share your anger towards cancer. However I am saddened by your anger towards a community that, (whether or not you acknowledge the connection), you are a part of. The high-risk community, those with a family history and particularly those with an inherited mutation that increases the risk for cancer shoulders an unfair burden of cancer. Nevertheless there are groups out there that vocally believe that there is too much research into cancer genetics. The term pre-vivor was coined to unite a community that is not receiving the share of research dollars or resources in proportion to the cancer burden this community carries. If we ever want better options: better preventions, better screening, and better treatment options, our community needs to advocate for it. I admire your confidence in the effectiveness of breast cancer treatment should you be unfortunate enough to be diagnosed but as someone who went through 6 cycles of chemotherapy and 33 radiation treatments in order to improve my survival odds by about 10% to live to see my son who was a toddler at the time grow up, I personally would like to see better, less toxic, more effective treatment options.
I wish I could give you a hug and re-assure you that you are making the best choices and will live a long, healthy life. The problem is that we are all making the best choices we can and none of us knows for certain that they are the best ones. That is why hindsight is the only 20/20 vision.
What I do wish is that you would not be so hostile towards a group of women who would so clearly support your plans and not judge you for your choices.
FORCE is a board full of women who like you face difficult choices everyday and we support each other no matter what those choices are. We would accept your choices and support you along the way.
I find the term Pre-vivor helpful because it has come to define the struggle that we face when we have genetic risks without a cancer diagnosis. To some of us that means preventive surgeries and others surveillance.
Please accept my invitation to join FORCE if you ever find the need for some warm acceptance no matter what personal choices you make.
Christine
I agree with your premise but not so much with your anger towards previvors. They, like most Americans, are subject to marketing, fear mongering and moneymaking by Doctors and the health industry as a whole. The money that the surgeons make on prophylactic surgeries is enormous. The pain and suffering these women go through is also enormous. Most of these surgeons don’t even tell their patients that their reconsructed breasts will have no feeling. And your right, this would never happen to men who were at high risk for testicular cancer. I have a BRCA mutation and am doing surveillance because I love my breasts – they are an important part of my sex life. Also, having a prophylactic mastectomy does not guarantee you won’t get cancer. There are hundreds of kinds of cancer and you could get any of them. You could also get hit by a car tomorrow. I am glad I had the test so I can be extra vigilant and I do understand the previvors fear. But the medical profession has to come up with a solution besides mutilating a woman’s body!
Cyra – I did have testing and a PBM but I appreciate your views (had alot of them myself at one point) and am glad you are welcoming comments. Sorry about the well meaning friends, but hope you read Sue’s post and reach out for more info. It’s not really as black and white as the ads and alot of media seem to make it.
Annie — of course I respect your views but I am kind of offended by the idea that I (and others in my position) are victims of marketing, greedy doctors and poor information. I actually resent being considered a victim of anything at all. Nothing could be further from the truth. Before I saw a single commercial, article or even knew there was such as thing as a genetic mutation that increased the odds of breast and ovarian cancers, my grandmother died (I never knew her) at 37, my Aunt died at 38, and my Mom was diagnosed at 47 at died two years ago at 63 after years of illness and sadness. My only other Aunt has Stage IV BC.
I don’t know about the cancer that is caught early and cured – no one in my family got that kind. We got the ones that just kept coming back over and over.
Yes. I could get hit by a car by tomorrow, but if I know that my odds of getting hit by that car were 85% if I crossed that street on Monday, then I pretty much would stay inside.
And yes – there are hundreds of kinds of cancers and in fact, I suspect I may get one of them, but without the actions I took, it’s highly likely I’d already have one. I have a GREAT life – I did what I could to have a little more of that.
It caused a bit of pain and sadness, but excellent resources like FORCE, my extremely caring physicians, other women who went through this before me made sure I knew all the risks and downsides and I went into this with eyes wide open.
I am a BRCA+ woman. I’m glad I know. I do think some of your scientific understanding of what testing means and what you can do is a little off. At the same time, I’m disgusted by the mass responses to you. I’m sorry that some of these previvors feel the need to turn your personal thoughts into a public issue. And for that, I am on your side.
I want to clarify that I’m not angry with the previvor movement, or with previvors as a whole. What I am frustrated with is the attitude that there is only one way to deal with this. A lot of women draw support from joining organizations such as FORCE, and that’s a great thing. That being said, I have had some very nasty run-ins with people about this. That is where this post comes from; it absolutely does not apply across the board.
However, it does make me extremely wary of joining a group. Therefore, I’m sorry, I have to disagree with the statement that I am already a “previvor.” I am more than a future case of cancer, and choose not to define my life around a disease. While I can see how some people draw strength from it, I am not one of those people, so please don’t tell me I am one already.
I’m not saying that there shouldn’t be more effective treatments, or that women shouldn’t be advocating for better solutions. I never said that in the original post. After watching what my mother went through, and what she is going through now with the hormonal treatments, I would never suggest such a thing.
It’s a 50/50 chance to have the gene, but even if I don’t have it, it won’t really be that much of a relief, given the family history (male and female alike). In response to one of the posts, yes, I am aware of the risks for ovarian cancer. That is more complicated and personal, and I have other factors playing into it that I am not comfortable discussing on a blog with complete strangers. Because of that, I decided to focus on breast cancer.
I am another pre-vivor. I watched my father suffer through 5 years of chemotherapy for his breast cancer. That’s right—a man who had breast cancer. It is not only women who need surveillance if there is a family history. My family history is riddled with cancer: My father, his mother, her sisters and two of my dad’s cousins who had ovarian cancer and did not survive. We all tested positive for the BRCA2 gene. We all received genetic counseling afterwards.
That being said, if there is a family history, genetic counselors are very important. Open and honest discussions are important. Informed and educated decisions are important. Moreover, no matter what, the final decision falls on the individual no matter what any well-meaning friend or family member says. Having an organization such as FORCE is there to help us all in our choices, not just pre-vivors but the BC survivor as well. The biggest issue stressed is the fact that the decision is very individualized. So much misinformation is out there. There are still health-care professionals who think the BRCA gene mutation is linked to the sex chromosome!
And also, any breast or plastic surgeon worth their salt and medical degree tells their patient all the upsides as well as the downsides. If they don’t, get another opinion.
Finally, if you didn’t want to discuss this issue in public, why post on a blog that is accessible by anyone with an Internet connection? Over 90% of the households in America have a chance of stumbling over this blog. Personal issues placed on the Internet no longer have too much privacy. I am glad to have the opportunity to know some very courageous women and men and count myself among them as part of the pre-vivor group. It is not a membership I looked for but so glad that I have the warmth, support and education I have received from FORCE. I know that anyone who comes to FORCE will get the same welcome and extended a hug and hand of friendship.
Beth
Hi Cyradisbc,
Thank you for clarifying about who your anger is directed at. I would be happy to continue this discussion (if you wish) off the net: feel free to e-mail me (or not) at:
suefriedman@facingourrisk.org
Thank you for clarifying that your anger is not directed at the population of high-risk women. And I can appreciate given time/space/complexity constraints limiting your post to one aspect of the subject. My comments about ovarian cancer were intended as much to educate the other people who may be drawing their knowledge and biases about hereditary cancer from this blog and being certain that they understand that the picture is so much more complex than just risk for one disease.
You said one other thing that concerns me and I’d like to address it and then I will leave you alone at this site and let you e-mail me if you wish. I still am concerned about where you are getting your information about cancer risk and encourage you to consult with a board-certified genetic counselor (if you haven’t already) to assure that your decision is an informed one. Why wouldn’t you want at least the most up-to-date information on which to base a decision? A genetic counselor is trained not to pressure people into genetic testing, surgery, or anything else. They will not draw your blood, and genetic testing is not the definitive outcome of genetic counseling. The outcome of a genetic counseling session is knowledge. You are clearly very articulate, and from reading your other postings, well-read and educated. Why would you shy from education in this realm prior to making a decision?
The comment about testing negative, although partly true is not the entire story. An expert in cancer genetics would explain at a genetic counseling session the appropriate first person to have genetic testing in your family would be a cancer survivor. If they test positive for the gene, then at that point if you test negative your risk for cancer goes down to populational risk, which is accompanied by different set of standard-of-care guidelines.
FORCE, and the education and services we provide is not about people identifying with a disease. It is about educating people so that they can make informed decisions. It is alarming how much misinformation surrounds hereditary cancer, genetic counseling, genetic testing, and cancer risk management. It is fortunate that there are experts in cancer genetics but it is unfortunate how few doctors refer people to these experts and how many people choose to make decisions with incomplete information.
Whether you join FORCE or not (and actually we have no formal membership process so it’s sort of semantics) is not my focus or concern, neither is how you choose to identify yourself. What is my concern is that given your potentially high risk for cancer are you being presented with standard-of-care options for risk management by healthcare providers with expertise in cancer genetics.
If you have any question as to what would be standard-of-care in your situation you can review them at the website for the National Comprehensive Cancer Network at http://www.nccn.org. Their set of guidelines can be reviewed at:
http://www.nccn.org/professionals/physician_gls/license_agreement.asp
Warm regards,
Sue
A note on the comments:
If you leave multiple comments on this post, before they are moderated, they will be tagged as spam. We, as a blog, have yet to come to a policy regarding comments. I may have over stepped my bounds in approving all of them (except the spam), and if I have, I apologize.
Finally,
Breast cancer is not an issue I can discuss rationally, therefore, I am not participating in this thread beyond moderating comments.
Beth, as far as making this public–if you’ll note, this topic was about breast cancer, not ovarian. That’s why I made it public. I have no issues with discussing my risks for breast cancer in public. I have issues with discussing ovarian cancer risks. It was brought up. When it was, I said, “I don’t want to discuss this in detail on the internet,” then didn’t talk about it. I’m not sure what the problem is here, as I didn’t bring it up and I haven’t talked about it. Therefore, I’m not sure why I’m defending myself for not talking about something in public that I didn’t want to talk about.
I followed back the links people found this through to the facingourrisk bulletin boards. I just want to apologize to anyone I may have offended. The theme of the blog makes it useful for talking about issues that are bothering you, but it may come across a little strong sometimes. (This may not have been a good venue for it.) As someone on the board put it very eloquently, “However, I feel like this thread just took the concept and let us all explore and discuss (publicly) our own thoughts and feelings on this topic. Most of what is on this thread is about us and the topic, not so much about the original blogger.
The threads with topics that spark significant numbers of responders just reflect the value of the discussion. These kinds of discussions are constructive – helping each of us to work through our own feelings and to receive feedback and – perhaps – validation.” That is exactly my purpose in posting my rationale about testing, and it has been helpful to me and I hope to others.
No one reading my post should mistake it for the opinion of a doctor or medical professional. Sue has kindly provided information that you can pursue if that’s what you’re looking for.