Reliability of risk assessment tools, living with stress

Options
cymom
cymom Member Posts: 54

I have a family history of breast cancer and certain other cancers (not ovarian, and no triple-negative breast cancers).  My mom was post-menopausal, but just under 50 when she was dx with breast cancer.  We have not yet had BRCA testing (but will).

I just had the scare of my life.  I went in for a mammogram and ultrasound, and was immediately sent for a core needle biopsy because they found something on my that was a Bi-RADS 5.  I was fully expecting to hear it was cancer, but amazingly, it was a rare, benign "nothing".  The radiologist something like this in the breast is 1/100,000.

I was referred to a surgeon to have this removed and for high-risk management. I learned that my lifetime risk of BC is 30%.  I am under 40, thin, I exercise, I had 2 kids before 30, I breastfed for 2 years.   My sister, who has multiple modifiable risk factors that I don't have was given a lifetime risk of closer to 20%-25% by her doctor.  Apparently, the fact that I have had a biopsy drives up my risk according to the model, even though the thing they discovered has zero correlation with breast cancer.  My dense breast tissue is also a risk factor, even though it is completely typical for woman of my age and weight.  Does anyone ever ask about the margin of error for these models and their predictive value?  Do doctors ever discuss this?

All of my relatives who have had breast cancer have been postmenopausal and/or overweight.  10% of breast cancers are hereditary, and 40% of post-menopausal breast cancers can be attributable to modifiable risk factors. 

I have a healthy respect (and deep fear) of breast cancer.  I am meeting with a genetic counselor and will probably send my mom for testing, and I will have a PBMX and oophorectomy if recommended.  But if my test is negative, I still feel like these risk numbers still put me in the shadow of cancer.  I will still have an elevated screening protocol.  They are more likely to pick up things that are nothing because they will be doing routine MRIs on me.

I want to be careful and do what the doctors recommend, but the last several months of my life, between tests and appointments, have been nothing but anxiety.  And all they have turned up is a tiny lump that I could ignore if I chose to.  With this heightened screening protocol, I probably have many call backs and biopsies in my future.  Not a day goes by that I don't worry about breast cancer.  Stress also kills people.  I want to do what the doctors recommend, but I worry about the physiological impact of this chronic anxiety.  I never sleep before doctors appointments or tests.  I lost 15 lbs over 4 days waiting for my biopsy results.  I am at the point where I am almost wishing for a BRCA+ result so that I can just get the surgery and be done with the anxiety, but then I stop and think: wait, that's nuts!  Surgery is not a treatment for anxiety.  

I recognize that this system is designed to locate high risk individuals, screen them, catch cancers early and/or prevent them with surgery, but these models have flaws, and all this scrutiny, and the often unnecessary procedures that result, take a psychological and medical toll too. Overtreatment has a "cost" too http://www.cnn.com/2013/07/30/health/cancer-overdiagnosis-overtreatment

It sure seems like there is a lot of work going into locating the 10% of people who will get hereditary breast cancers, not nearly enough work on getting people to change their lifestyle so that they can reduce their risk from preventable causes, and not nearly enough concern about the medical and psychological toll of overtreatment.  

Can anyone relate?  My doctor says I am a "soft" case, so he is giving me options with respect to screening and surgery on my "little nothing" lump.  I feel the tug to do as much as possible in terms of screening and prevention, but I do wonder if I'm doing more harm than good.

Comments

  • Annette47
    Annette47 Member Posts: 957
    edited September 2013

    Having already diagnosed, I am in a different position than you, of course, but I did want to say not to put TOO much faith in statistics, especially if you turn out to be BRCA negative.    According to stats and risk factors, I had an approximately 1.4% chance of being diagnosed when I was.   The stats can tell you a lot about what is likely to happen in a population, but not much about a given individual, so it's not worth worrying THAT much about unless and until it actually happens.   ((((HUGS))))

  • momoschki
    momoschki Member Posts: 682
    edited September 2013

    Yes, I can totally relate! My doctors gave put my risk at between 20-25%, but this still lands me in the high risk category and all the 6 month screenings that come with it. I was first dx'ed with DCIS, was mentally preparing for BMX, but had pathology reanalyzed at 2 other hospitals and was downgraded to ADH. While this was certainly very good news for which I was extremely grateful, I often feel that I am just waiting for the other shoe to drop. I have been on this merry-go-round for about 2.5 years now, and each time, about a month before a scheduled screening, I also get so anxious I cannot sleep or eat.



    Other people don't really understand, since there is nothing currently wrong with me. But still, I have to deal with seeing both my BS and onc twice a year. Sometimes I just cannot believe that I am someone who even has an oncogist!



    So, while I have no solutions for you, I just wanted to let you know that you are not alone. I find it ironic and infuriating that all my doctors tell me that avoiding stress is important when it is seeing all of them that actually stresses me out the most.

  • Ridley
    Ridley Member Posts: 634
    edited September 2013

    I'm in a bit of a different situation, but can relate as well. I have been doing routine mammos for 5 years (started at 40), and up until this past May, had been going annually, with a few call backs for ultrasounds, and a biopsy that turned out benign. In May, I had some spontaneous discharge, and this journey began - ultrasound, biopsy that found cancer, MRI which turned two suspicious areas, more mammos and ultraounds, MRI biopsies ( one benign, one cancer), more mammos. 10 days ago I had surgery (lumpectomy and sentinel node biopsy). Currently waiting for final pathology and next steps re treatment.



    I chose a lumpectomy to get things moving, as it was becoming complicated to see a plastic surgeon and decide on reconstruction in short period of time.



    So now I have to decide on whether to do a mastectomy. I have, as a couple of radiologists have put it, busy breasts. Lots of cysts, calcifications, etc. So unless I choose to have a double mastectomy, I will have to be "watched like a hawk". So MRIs and mammos every six months. I have a very strong family history, with lots of breast cancer, ovarian cancer and other cancers, although my BRCA testing came back negative (like you, I almost wish it was positive, as at least then, I would know what to do).



    The stress of that testing vs the stress of more surgery and reconstruction after whatever other treatment I now need, is a lot to carry either way. Since May, I'm not sure I've done a full days worth of work. I'm lucky in that summer in my industry is slow, but that period is over. I'm debating whether to ask my gp for an anti-anxiety med as this stress level and lack of focus is not sustainable!



    So, no real answers or words of wisdom, but certainly an empathetic soul.



    I'm glad that after all you went through this year so far, that the results are B9.

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited September 2013

    The problem with the predictors is that they are good for large populations but really crappy for individuals. Depending on which one I use I am as low as 25% and as high as 70%. Oddly enough, my rare ovarian cancer is not considered much of a risk. I will tell you that from someone who was diagnosed with LCIS less than six months after major surgery for ovarian cancer, get your genetic counseling done, then take a break. Give it a year and have a couple of six month follow ups. I can almost promise you that you will feel a lot calmer if you have had some clear f/u. When I was diagnosed I thought immediately that I would just have to get them cut off and be done with it. Now I have made peace with six month surveillance and many women go for years & years and have no further problems & no more biopsies. I have had genetic testing & have been offered Aromasin. I'm still considering it. If I get into a cycle of frequent biopsies I may change my mind, but for now, after several clear followups I'm good.

  • Ozgirl
    Ozgirl Member Posts: 11
    edited September 2013

    Hi there :-)

    I could have written your post. I am just over 40, family tested negative to BRCA genes but I have been given a personal risk at about 1 in 4 (so 25%).

    I too worry about breast cancer constantly. The way I have dealt with it is to be proactive as well. I have yearly MRIs and mammos, limit alcohol intake, keep fit and keep my weight in a healthy range. I also have just started Tamoxifen for prevention.

    The way I see it, with all of the measures I am taking, hopefully I am reducing my risk as much as possible, but if I do get cancer, the odds are that it will be caught as early as possible. This all reduces my anxiety levels about it.

    Take care and happy to chat.

    Rachel

  • cymom
    cymom Member Posts: 54
    edited September 2013

    Thank you everyone for your comments. I am glad to know I am not alone. I guess I am just frustrated. I wonder if it really has to be this way.  I wonder if all this screening and testing is really in my best interest.

    Someone on this board posted a link to an article about the risk-assessment models used by doctors and how poorly they perform as predictors of who will get breast cancer at the individual level.  http://jnci.oxfordjournals.org/content/98/23/1673.full.pdf

    The answer: better than the flip of a coin, but not by much.  For this, I had my life upended for months?  And its still not over, because I havent had my MRI yet, and the high false positive rate is so high with MRI that I feel like I'm bound to end up with followup from that test too.  I understand that BRCA is a different ballgame entirely.  But if that is negative, does any of this testing really make sense?  I am not sure.  My mother had BC that was "caught early" and she still ended up with mets.  If all this is in the name of early detection, does early detection really have enough of an impact to warrant all this screening and unneccessary procedures?  

    The thing on my breast is a granular cell tumor.  Its benign, but because it shows up as a BI-Rads 5, the doctors are "more comfortable" removing it.  I am sure, given my risk, they are going to recommend Tamoxifen at some point.  Something about all this just makes my head spin -- I'm not treating my condition in the first case, I'm treating my mammogram.  In the second case, I'm not treating my condition, I'm treating the results of my risk model.  I worry that none of this is in my best interest individually.  It fear that what's really going on is that people like me are, as a group, a liability risk for doctors, and so that's why I've been put on this roller coaster.

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited September 2013

    I feel exactly the same way, and complicating mine is the fact that, when it comes down to it, they really don't know much about LCIS. When I consider that 12% of women with no risk factors get breast cancer & they THINK that maybe 20% of women with LCIS MIGHT get it, sometimes I wonder if turning my life upside down for an 8% additional risk is just nuts. I'm leaning towards not taking Aromasin. I had severe insomnia & depression going through menopause & I just don't think I can plunge myself back into that. Also, it causes bone loss. I very happily live alone & have no kids. While the drug MIGHT lower my risk, I know for a fact that a hip fracture has a good chance of ending my autonomy & landing me living with my sister.

Categories