Trying to better understand risk

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Djabi53
Djabi53 Member Posts: 184
edited November 2015 in High Risk for Breast Cancer

Hi - I'm trying to better understand and manage my "risk" and would be grateful for any thoughts and information from anyone in this community. I'm 63 and currently have bilateral faint calcifications/birads 3 - every 6 month watch and wait diagnostic mammogram for 2 years. Told it's protocol. Radiologist is not overly concerned about current findings. Mother diagnosed with bc mid 70's. Still alive at 80. Maternal aunt died from bc early 70's - refused mastectomy. Maternal first cousin died from bc premenopausal - delayed seeing doctor when symptoms arose. All my genetic testing came back negative, no inconclusives. But was told I am still at increased risk. Evista was recommended for 5 years. I'm in a high risk program. Most of the time I feel like a ticking time bomb. On the other hand, some say that first degree relative is the most important risk factor, and a mother with bc in 70's is not the same risk as mother with bc at younger age. Im confused by statistic that says most women with family history don't get breast cancer. I constantly bounce back and forth between doom and hope. Anyone else have similar feelings? Thanks very much

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  • Moderators
    Moderators Member Posts: 25,912
    edited September 2015

    Hi Djabi,

    Risk is a tricky concept to understand. We're sure others will be by shortly to offer their advice on how to estimate risk.

    In the meantime, you may be interested in reading the main Breastcancer.org site's page on Understanding Breast Cancer Risk for information about how risk is calculated with and without a family history.

    We hope this helps!

    --The Mods

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  • mkkjd60
    mkkjd60 Member Posts: 583
    edited September 2015

    Hi Djab. Boy, your post hits a nerve with me! My mom got bc at 66 and died from it at 73 two years ago. I am 55. I really had to bully my way into a high risk category but I did. When all this was going on with my mom, I decided to switch to a breast specialist. She also treated my mom so we go way back. I am on a 6 month rotation between mammos and mri. I have had my share of birads 3s and two biopsies (one because I insisted. Couldn't sleep...you know how it is). My mom has an aunt that also died of bc at age 75. I think when the familial bc is in older people, the medical establishment doesn't take our "high risk" as very high.

    All that being said, I just take things into my own hands. Squeaky wheel sort of thing. If I think I need something, I just call until I get it. But I absolutely bounce between doom and hope. When I have to get a mammo or mri, I have to take a Xanax just to go to the facility. I just believe I'm going to get bc. Convinced. No one can tell me otherwise. People like us are just the debris left behind from our relatives sad medical pasts. Everyday I think of my mom's death from bc. I cared for her for the last two years. It haunts me like my shadow. I have a mammo coming up early October and I think of it every day. It actually makes me ill to consider it. Please know you are not alone. I stand with you. Mary

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  • 614
    614 Member Posts: 851
    edited September 2015

    Dear Djabi and Mary:

    I certainly understand your stress levels. 

    I do not know how to determine risk but I know that famililial bc is a concern.  I agree with Mary that older familiy members with bc do not weigh as strongly into the formula.  I am sorry that you lost your mom -Djabi.  That is tough.

    I have had 5 excisional biopsies/lumpectomies, 6 core biopsies, and 1 cyst aspiration over the years.  My bc was detected in the summer of 2014 and I have had an MRI guided biopsy in May 2015 (included in the numbers listed above) which happened after my treatment concluded.  A second suspicious area was found in May 2015 but it could not be biopsied at the time.  I am on a 6 month wait and watch protocol.  I will find out more in November 2015 when I have my next diagnostic mammogram, sonogram, and MRI.

    Stress and anxiety are part of the picture.  However, I feel confident with my doctors.  I am very glad that I am closely monitored because that gives me peace of mind.

     

    Good luck.

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  • Djabi53
    Djabi53 Member Posts: 184
    edited October 2015

    Thanks dear friends for sharing your stories and situations about risk/family history. How are you both doing? It's good to know I'm not alone. 614 - I wish I could be more like you - that close monitoring would bring me peace of mind. I'm trying really hard to feel the way you do. Rationally I understand that close monitoring should bring me peace of mind. But Mary, my anxiety is like yours. It haunts me too like a shadow. I need xanax just to get to the facility too. Last appointment I made the mistake of making an afternoon appointment instead of early morning and I could barely get myself there. As my every 6 month monitoring for 2 years goes on, it isn't bringing me peace of mind, but ongoing anxiety. I'm also trying to look at myself/health/wellness/disease as mind, body, spirit - not just a body part that has to be constantly monitored. I study functional and integrative medicine practices, and in my mind, I'm trying to balance the benefits of closely monitoring, feeling like I am a ticking time bomb - a body just waiting for a mammogram to finally find cancer, and the affect that that messaging (of just waiting for cancer to show up) is having on my mind, body and health. I suppose both are true, but it's hard to hold onto both concepts. I do see a counselor and I'm looking into neurofeedback to help with the anxiety. I would love to find a place where women talk about balancing "high risk" monitoring with some of the functional medicine, integrative ideas - epigentics.......The idea that I am not completely defined by my genes. I hope that somehow we all find a road to peace.....

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited October 2015

    Seeing a geneticist would be my suggestion. They are the true experts in this and can put things in true perspective

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  • Ddw79
    Ddw79 Member Posts: 533
    edited October 2015

    I know how you feel djab

    This recent dx leaves me anxious too. The mornings are especially bad and I always feel that I'm a sitting duck


    My risks are not due to genetics . I've ruled that out with extensive genetic testing. Nevertheless first mammogram next week and I feel just like you. Biofeedback sounds like a good idea. I've thought about that to

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  • Djabi53
    Djabi53 Member Posts: 184
    edited October 2015

    I, too, have had genetic testing. At my genetic counseling appointment, I was told that the probability was low that my tests would come back positive, but I still met the requirements for testing. Was tested for BRCA 1 and 2 and a few panels. They did not think my family history or personal health history warranted other panels. Everything came back negative - no inconclusives. It was kind of a confusing appointment when I got the results. My oncologist and genetic counselor sincerely and with great joy told me that all my genetic testing came back completely negative - and they both enthusiastically congratulated me. But then they immediately said that because of family history, I remain at increased risk - basically twice that of the average woman for the rest of my life. I'm not sure but I think that anyone who has a first degree relative who has breast cancer is twice the risk, regardless of genetic testing results. I'm glad that I had the testing done, but it didn't ease anxiety. it sort of increased the unknowns. I'm in a high risk breast cancer program. My genetic testing was all negative, I don't have cancer, but I have an oncologist. I was offered Evista, but I haven't made a decision about taking it yet. Ddw79 - good luck with your mammogram next month and let us know how it comes out and how we can support you along the way.

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  • Ddw79
    Ddw79 Member Posts: 533
    edited October 2015

    In the same boat. I too am still unsure about my risk with all negative genetic testing. It's confusing to me. Like you still mulling over Evista.


    Thanks so much for you kind words of interest and support djab53. It means a lot to me. I have the feeling that we are also very similar in age. I am 63

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  • leaf
    leaf Member Posts: 8,188
    edited November 2015

    Well, except perhaps if you have a BRCA mutation, this article sure turned my head around about evaluating my risk for breast cancer.

    I have classic LCIS, which is an unusual condition. (This paper says that <2% of core needle breast biopsies show LCIS or ALH and nothing worse. https://pathology.ucsf.edu/uploads/207/100_lobular...) I got a variety of different numbers from various people. From the local NCI-certified center, I got 'your lifetime risk of breast cancer is somewhere between 10% and 60%, but probably closer to 10% than 60%." One non-peer reviewed calculator gave my risk (without tamoxifen) as 90%, which I had never heard before. My oncologist said about 30%.

    So this editorial from an academic journal says, with the possible exception of a BRCA mutation, essentially that the science of prediction of breast cancer for individuals is in its infancy. We know quite well the risk of breast cancer in the general population (at least in the USA.) This is the percentage of women in the USA who will get breast cancer. So, if your population size is 100, we know that about 13 of these 100 women will get breast cancer some time in their lifetime. Obviously, this number is a lot more specific than any numbers I was getting. (13% is a lot more specific than a range between 10% and 90%.)

    An entirely separate evaluation is needed to evaluate how well a model predicts YOUR (you, an individual's) risk of breast cancer. The modified Gail model is the most commonly used breast cancer risk model. It may not work quite as well if you are looking at a population that has a BRCA mutation. This paper says that this modified Gail model, or another model that also includes more risk factors like breast density, predicts whether or not you will get breast cancer 'better than the toss of a coin, but not by much.' What does this mean? This means that about 60% of the time, the modified Gail model will predict your risk of breast cancer correctly, and about 40% of the time it will predict it wrong. Note that an honest coin toss will come up heads 50% of the time and tails 50% of the time. So a coin toss is the worst possible prediction model. An absolutely perfect model would predict correctly 100% of the time, and predict wrong 0% of the time. Since 60 and 40 are a lot closer to 50 than 100 or 0, I knew these models were not working well. So the modified Gail model, even when other breast cancer risk factors like breast density were added, predicted better than pure chance, but not very well.

    http://jnci.oxfordjournals.org/content/98/23/1673....

    So we know quite well that 13 out of 100 women in the USA will get breast cancer, we just don't know which 13 women that will be.

    I knew that since they know very little about LCIS, that if they did this poorly about predicting breast cancer for the 'average' woman in the USA, they don't know a hill of beans about MY risk of breast cancer.

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  • 614
    614 Member Posts: 851
    edited November 2015

    Dear Leaf:

    Thanks for all of the information in your post. I too, was diagnosed with LCIS but mine is pleomorphic.  I also was diagnosed with pleomorphic ILC and invasive tubular carcinoma.  Most of what I was diagnosed is very rare.  I also have a Variable of Unknown Significance (VUS) from my genetic testing.  It is stressful. However, I feel extremely lucky that I was diagnosed  because lobular carcinoma is so hard to detect.  I am glad that I am being monitored so closely. It gives me peace of mind.  Also, I am so lucky to have wonderful doctors that I trust. 

    I just had my MRI, Mammogram, and Sonogram on Monday.  I also had a biopsy for the suspicious area that was seen in May that could not be biopsied at that time.  I am so relieved that the area could be biopsied now.  My RO really put my mind at ease.  I feel so much  better.  I am waiting for the results of the biopsy but I believe that it will be benign.  I am not worried about it.  I will find out the results next week.

    I am sorry that the rest of the people on this thread have so much anxiety.  It is difficult to say the least, to go through this experience.  I wish everyone good luck and good news.

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