I feel like a ticking time bomb. Every month I think about breast cancer. Every month I do my breast exams and wonder if this is the month I find a lump.
My grandmother had breast cancer but didn't die of it, she caught it in time. My mother had breast cancer, but she didn't die of it either. My aunt had it fifteen years ago, she's still around and kicking. My sister however, has been battling breast cancer for six years and it's now traveled to her liver. She went through the battery of chemo and radiation last summer and the tumors are now being held at bay by hormone therapy. She's doing well despite the prognosis, and we can only wait and see and help her live her life as normally as possible.
I, however, am waiting for the shoe to drop. I'm wondering if going for this drastic preventitive surgery is a good idea. Would I regret not having it - or would I regret doing it? I'm honestly torn. And you know what's holding me back the most? Is worrying that it's a Munchausin Syndrome thing. Am I creating this situation? The last thing I want to do is draw attention to myself. (A personal problem) But I also want to live long enough to see my kids grow up - which my sister may not have the luxury of doing.
What would you do? Have you or some one you know gone through it? How did they or you come to a conclusion?
I do want to add that I am noted by my doctor as a high risk and I have mammograms every other year and an MRI the other years. I'm vigilant about monthly exams.
Thank you very much for your help.
Did you have the genetic test? I have a family friend who lost her mom and sister to breast cancer. She had an elective mastectomy and I don't think she has ever looked back. I would personally rather be alive without breasts.
Have you had the test for the breast cancer gene?
I have a friend who was diagnosed with breast cancer at 35 a few months after having her first (and only) baby. She had the genetic test done (he mother had died of breast cancer) and since her test was positive, she went with the most aggressive cancer treatment which included a a double mastectomy.
I'm 40. I have a mammogram every year (have a lot of BC in my family as well).
Hi J.. I've already had breast cancer, 10 years ago at 35. I had a single mastectomy with tram flap reconstruction.
Have you had BRCA testing? If you have not, this is your next step, not an elective mastectomy. Your insurance may not pay for your surgery unless you've had the testing, and tested positive. With that many first degree relatives, you should have this test and your insurance should cover the expense. If you test postiive for the BRCA 1 or 2 gene, then you might consider an elective mastectomy. Have the women in your family been diagnosed young, before menopause? If so, your doctor should have recommended BRCA testing by now. It's the results of this test that determine your risk. If there's no genetic component, then your risk is really not increased. Mammo's, MRI's and self exams don't prevent breast cancer, they detect it. If you have one of the BRCA genes, you have a high risk for breast and ovarian cancers, and mastectomies and oopharectomies can prevent you from getting the cancer.
Good luck!
Good luck.
I am sorry you are going through this. But you need to stop living in fear. fear is crippling and debilitating. You are allowing fear to ruin your life.
I have a theroy about most medical practioners. Women's bodies are a mystery to them. MEN do not understand our body parts are just as important to us as their body parts are to them. For years doctors recommended hysterectomies for women who really didn't need them but just get rid of that pesky uterus. No more periods, no more unexpected pregnancies ect. Men do not understand our breasts and uterus are important to us as women. Part of the old boys club --- get rid of it --- your are done using it and then husbands can have sex with their wives as often as they want with no fear of pregnancy.
If there was a high frequency of testicular cancer in your husbands family would his doctor tell him to have his testicles removed because he MIGHT GET CANCER. UUUMMMMM probably not.
Before you decide to have any surgery ---- get into counseling. Learn to overcome your fear and live a life of joy.
If this comes offf as flaming I don't mean it to but the medical community really makes me angry when it comes to women's bodies.
A mastectomy is major surgery with plenty of potential for complications. Personally, I would not undergo major surgery in order to prevent a disease that I might never get anyway.
Aww J., heavy duty stuff here. I'm so sorry for your family and especially your sister.
Have you had counseling with people who do this type of counseling? I think that this is the first thing you should ask your doctors to get for you. You and your husband need to go together and work on this.
You are hardly the only woman who has considered this, given your family history. You wouldn't be the only one to do it, either. The good thing is that you have TIME to decide too. Women who have been diagnosed have to do these things really quickly.
Please look into getting specialized counseling for this so you can weigh your options with support and understanding.
Thinking of you,
Dawn
the fear sounds crippling.
but big decisions made from a place of fear are never good ones.
you could have your breasts removed and then get a different sort of cancer.
i myself would never dream of having prophylactic surgery.
this degree of anxiety is not healthy or normal, and is far more damaging to your overall state of health than most real health issues. please get some help, hon.
khairete
S.
I used to worry about breast cancer. Mother had it over thirty years ago. She is going to be eighty one. A great aunt had it, and I am sure the list goes on. So I groped myself for years and voila! I would up with UTERINE cancer. The point is, tell yourself to stop it right now. Do whatever you are supposed to do to be healthy. Allow yourself ten minutes a day to be all worried about it. Draw pictures of breasts, write your worries, write the consequences and then just well, stop. We all have the potential to get any form of cancer. In the meantime you are not living. And you are not your sister. I had a sister who had a stroke and another one who had her bunion removed. Do I have a bunion? Yes.
Will I have a stroke-who knows?
I will use the proverbial we could all walk outside and get hit by a car today. And then all the worry didn't accomplish much anyway. Use your energy for good or happy things. I realize how scared you must feel, so I am just telling you shorten your time you do that and go help someone or clean closets or dance, dance. Let those things shake your life up instead of deciding on changing their destiny.
I fully agree with Suz T. that getting some professional help is vital at this time. Someone that can support you in questioning all of those scary thoughts running rampant through your mind.
Some websites that might help are:
Bernie Siegel MD: http://berniesiegelmd.com/
Lissa Rankin, MD: http://lissarankin.com/
Byron Katie: www.thework.com
I had a friend who did this in her mid-thirties due to being high risk. Her mother battled cancer for 25 years and ultimately did die from it. My friend had several non-cancerous tumors during a 4 month period and ultimately decided to proceed with a masectomy. Her recovery was more difficult than anticipated, as they had to take some muscle from her back to use in reconstruction. Her reconstruction had several difficulties which left her with two different sized breasts for a period of time (one B and one D). She required several surgeries for her reconstruction to be satisfacdtory to her, and she's satisfield with the result but not thrilled. However, from the perspective of others' noticing, no one would ever look at her know. For the first 1-2 years after the masectomy, she was pretty depressed about the recovery, reconstruction and down on herself in general. However, she's never regretted removing her risk of breast cancer. Once past the recovery and reconstruction, she's been much happier overall.
Have you been tested for any of the gene variations that are associated with a high risk of breast cancer? I'm assuming that when you say your Aunt, that it IS your mother's sister?
What age was everyone when they were diagnosed with breast cancer?
I totally understand your concern..... my mother was diagnosed with breast cancer about 3 years ago (but she was 86 at the time)... she just had a lumpectomy, and has done very well since then. My sister, however, was just diagnosed with breast cancer in November, at the age of 60. The surgeon first said that a lumpectomy would probably be all she needed, however, an MRI showed additional areas of concern on both sides, so she ultimately decided on a bi-lateral mastectomy. She just had that done last week. Initial exam of the sentinel lymph nodes on each side showed no signs of spread, but they are waiting on the final pathology report to be sure.
I am 55 now, and it is getting scary for me......
As I said, I totally understand your concern, and there are a lot of people that have undergone prophylactic mastectomies due to a strong family history..... if I were in your shoes, I would first look into the genetic possibility... and if you did carry one of the more common breast cancer gene variations, I would probably look into it even farther...
Good luck!
J.:
I am sorry!! If I had this kind of fear running through my brain and body every month, I think I would be insane. Get the test done to see if you have the marker for breast cancer. The BRCA1 and BRCA2 markers...
http://www.breastcancer.org/symptoms/testing/types/blood_...
Can you talk to a therapist about this? I would not let this consume my life. You are being vigilant. And your doctor is on top of it. I don't think you have Munchhausen by proxy or even Munchhausen...you have a legitimate concern, many in your family have or have had breast cancer.
What is the benefit of the mastectomy to you? Does the mastectomy totally take away the chance for breast cancer? Just because you have all the markers - family, etc. does NOT mean you will GET breast cancer. From what I understand, even IF you have a mastectomy - the lymph nodes will STILL be there and you can still get breast cancer.
What would I do? i would have the blood tests done to see the markers. Then I would talk with a professional who has dealt with this..not just my doctor, but a professional to help me put it all together....and then go from there...my husband would play a role in this decision as well - yes, it's my body and my choice, however, this affects him too.
Good luck!!! This is not going to be an easy choice for you!! I am sending thoughts and prayers your way!
I would never undergo major surgery for a problem that didn't exist. Many people get breast cancer and don't die from it. More women die from heart disease, by far.
My genetic history makes me at risk for diabetes and heart disease. I exercise every day, watch my diet, and keep my weight right at the correct level. These habits have been shown to assist in preventing cancers and many other health conditions. And yet, we can only do what we can do. We have to let go of anxiety about the unknown and live life now.
Are you getting any type of counseling to deal with your anxiety about this? It doesn't sound like this worrying leaves you free to enjoy the life you are living.
I think it's a really personal decision and if it's something you feel better about doing then you should talk to your dr. about having it done. My friend just had it done. She just had her 2nd surgery last week. She had it done because she lost her grandma, her 2 aunts AND her mom from breast cancer. She was not able to have her mom at her wedding because she died about a year before. My friend was tested and came up positive for the gene. She decided to have it done so she can live to see her daughter get married someday and live to see her grandchildren. I can't imagine it being easy to go through, but she is a strong woman and she is amazing for doing it so she can live longer.
Good luck with your decision!
A good friend of mine and two of her sisters had the surgery you are talking about. Their mother died of breast cancer when they were young. My friend is very glad she had the surgery and is happy with the results. By having all the breast tissue and lymph nodes removed she has reduced her chance of getting breast cancer to less than 1%. I know it is a big decision to make, good luck!
I had a cousin die of breast cancer (as did her mother). When her sister got diagnosed, they did a double mastectomy and her cancer has been in remission for 10 years. The cousin that was alive didn't blink with the mastectomy. Her sister didn't get it, and she just knew it was her only choice.
I'm with Dawn. I think you have time to decide, and it might be helpful to find someone to talk with to help you figure out your decision.
Wow. Very hard.
I think you need to discuss this very seriously with your doctor.
In life vs. death, life always wins.
Dawn is right about having the luxury of time for a decision.
Time for facts, time for researching, time for discussion.
Knowledge is power!
I agree with the other posts -- Also, check with the American Cancer Society and see if there are local support groups that deal just with breast cancer patients and families of those patients. There, you might find other women who faced exactly the choice you are facing. Only someone who has been there can truly identify with your dilemma. The cancer society or breast cancer groups might have online forums where you can connect with women who have done this, or women who have decided against it.
What does your doctor advise? Have you seen a breast cancer specialist who knows all the details about preventive mastectomies? Seeing someone who actually deals with these surgeries and their outcomes might be a good idea. Genetically it sounds as if you are very high risk, and you definitely are on top of your own early-detection routines (I am glad to hear you get regular breast MRIs -- good idea, and they also give you a good "healthy" baseline so the doctors can compare from year to year. Smart.) Now you just need to find help from those who have actually been there and those who do these procedures. Please update us if you have time. You are in our thoughts!
It really sounds like you are keeping on top of this with your doctor. What does your doctor advise? It would seem that you would have enough time if you were to be diagnosed to have this surgery immediately. I am not sure that I would have it pre-emptively unless it was something that the doctor strongly recommended.
Here is the information on the BRAC testing from Wed MD. Have you had that done? That would be my first step. Good luck!
A breast cancer (BRCA) gene test is a blood test to check for specific changes (mutations) in genes that help control normal cell growth. Finding changes in these genes, called BRCA1 and BRCA2, can help determine your chance of developing breast cancer and ovarian cancer. A BRCA gene test does not test for cancer itself. This test is only done for people with a strong family history of breast cancer or ovarian cancer, and sometimes for those who already have one of these diseases. Genetic counseling before and after a BRCA test is very important to help you understand the benefits, risks, and possible outcomes of the test.
A woman's risk of breast and ovarian cancer is higher if she has BRCA1 or BRCA2 gene changes. Men with these gene changes have an increased risk of breast cancer. And both men and women with these changes may be at an increased risk for other cancers.1 The gene changes can be inherited from either your mother's or father's side of the family.
Certain people have a higher chance of inheriting BRCA1 or BRCA2 gene changes.
Ashkenazi Jewish women (whose ancestors came from Eastern Europe) are more likely to be BRCA gene carriers. Some experts recommend gene tests for women who are of Ashkenazi Jewish descent if they have one or both of the following:
Any first-degree relative with breast or ovarian cancer at age 50 or younger. First-degree relatives are parents, sisters and brothers, and children.
Two second-degree relatives on the same side of the family with breast or ovarian cancer. Second-degree relatives are aunts and uncles, nieces and nephews, and grandparents.
If you are not of Ashkenazi Jewish descent, some experts recommend a gene test if you have one or more of the following:
Two first-degree relatives with breast cancer, one of whom was diagnosed before age 50
Three or more first- or second-degree relatives with breast cancer, diagnosed at any age
Both breast and ovarian cancer among your first- and second-degree relatives
A first-degree relative with cancer in both breasts
Two or more relatives with ovarian cancer
One relative with both breast and ovarian cancer
A male relative with breast cancer
If you don't meet any of these criteria, you are not likely to have a BRCA1 or BRCA2 gene change. Only about 2 out of 100 adult women have an increased risk of having a BRCA gene change.2
Read this blog: http://www.girl-ectomy.blogspot.com/
I have always thought that if I was in a precarious situation with my breasts, I would have no internal conflict about whether to do a double mastectomy. No problem for me. But I developed very young, was teased very harshly, and have never felt comfortable in my own body. Genetics has given me disproportionately large breasts, not related to my weight, and other than breastfeeding, which I gladly did, I have always wished my body to be different. I hope never to face this situation, and it's impossible to know how I would be in reality, but from the distance where I stand, I would go forward with it if the threat was real.
