Fear that Dr. may not be taking us seriously.

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picardlx
picardlx Member Posts: 2

My sister is 22yrs old and I have heard from some people that a woman should become proactive in breast cancer exams/screenings approximately 10 years prior to her mother's diagnosis. My mother died of breast cancer at the age of 32. My sister has repeatedly asked to get a mammogram, but her family physician does not believe an exam is necessary at this point. Both my sister and I are worried that our concerns are not being taken seriously. Are we overreacting?

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  • idaho
    idaho Member Posts: 1,187
    edited June 2009

    I don't think so- get a different Dr. or DEMAND a mammo.  Good luck to you- Tami

  • swimangel72
    swimangel72 Member Posts: 1,989
    edited June 2009

    Forget the family physician - find yourself a breast specialist who works in a cancer center. It's YOUR body - and with your family history you need to be as proactive as possible. Good luck!

  • Anxiousmama
    Anxiousmama Member Posts: 92
    edited June 2009

    I was told by the radiological place that did my mammo (b/c I had left my referral paper in the car - then they realized it wasn't a screening and they did need the info from the dr) that you don't have to have a referral for a screening mammo, so you should be able to just set up an appointment and go. It is, however, unlikely that the insurance will pay for it. My insurance company does not pay for screening mammos for anyone under age 40, so I'd inquire about cost before making the appointment or going.

  • hrf
    hrf Member Posts: 3,225
    edited June 2009

    I agree - find yourself another doctor

  • Deirdre1
    Deirdre1 Member Posts: 1,461
    edited June 2009
  • dlb823
    dlb823 Member Posts: 9,430
    edited June 2009

    Definitely see if there is a large enough hospital (like a university teaching hospital) in your area.  They often offer "High Risk" programs for women with a family history of bc and/or other significant risk factors.  They will evaluate a woman's risk, and if it is higher than the normal population, will offer more frequent screenings to ensure peace of mind, and that anything out of the ordinary is caught as early as possible. 

    Here is a list of some of the hospitals (by state) that are most likely to have this sort of program:  http://cancercenters.cancer.gov/cancer_centers/map-cancer-centers.html

    If there isn't one near you, then a Comprehensive Breast Center or breast surgeon/specialist is what you want to look for.   Good luck ~  Deanna

  • j414
    j414 Member Posts: 321
    edited June 2009

    No, you are not overreacting. Your mom, a "first degree" relative, had an early onset aggressive BC. Early onset BC, ovarian or colon cancer is suggestive of a genetic mutation. Forgive me for saying this, but your doctor is an idiot.  dlb823 is absolutely right - get yourself to a teaching hospital that has a "high risk" program and get screened. Inquire about an MRI too - you're young, which means dense breast - MRI is better for dense breast. I got a mammo 4 years ago (although my doctor said I was too young and it wasn't necessary) and nothing came up. Had one again a couple of weeks ago b/c my new gyno said with my "strong family history" we had to be very "careful". Nothing came up on the mammo or sono, but a 1 cm IDC came up on MRI. Grade 1, stage 1, well differentiated, no nodal involvement - very slow growing, doctor said it was there 4 years ago too. I am lucky and I owe this gyno a lot.  Find a doctor who specializes in high risk women - he/she will take you seriously. And if you are close to NYC, I can give you the name of my doctor, she is incredible. Best, J.

  • ElaineD
    ElaineD Member Posts: 2,265
    edited June 2009

    The problem here is your sister's age. Breast tissue at this age is simply too dense for mammogrammes to be useful, so don't waste any time fighting for something which won't give clear results. An mri would be more suitable, and I think your sister would be well justified in having one. But, don't forget, even if your Mum's cancer was genetic, it's by no means certain that your sister witll have inherited the gene misprint. It may be that she-and you-would also consider genetic testing, to establish if your risk is higher than average? Good luck to you both.

  • Beesie
    Beesie Member Posts: 12,240
    edited June 2009

    No you are not overreacting.  But j414 and Elaine are right - mammograms are not the most appropriate screening tool for someone who is young, for two reasons. 

    First is that younger women tend to have dense breast tissue and mammos are not the best at "seeing through" dense breast tissues.  So mammos often are not very effective on younger women.  Ultrasounds are a preferred choice and are relatively inexpensive and easily available, so that would be my first suggestion.  Next would be an MRI, which is most effective at seeing through dense breast tissue but is expensive and harder to get approved.

    Second is that although the amount of radiation one is exposed to from a mammogram is very low, it does accumulate over a lifetime.  This is why for women who are not high risk, screening mammos are usually not recommended until the age of 40 or sometimes even 50, and why sometimes it's recommended that mammos only be given every two years.  For those who are higher risk, generally mammos are started at an earlier age and given more frequently because the risk of BC is judged to be greater than the risk from the low dose radiation, but still, starting to get annual mammos in one's early 20s is very early.

    As Deanna suggested, I think that getting into a High Risk program might be the best approach, since they will take you and your sister seriously, and they'll know which screening is best to do on someone as young as 22.

  • picardlx
    picardlx Member Posts: 2
    edited June 2009

    Thank you all for your comments and suggestions. We will pursue second opinions and also look into the university cancer centers in Chicago since she lives there. I'm also going to check the Blue Cross/Blue Shield Coverage contract to see if there are any age restrictions, but if I have to I'll pay cash.

    This may be an dumb question and excuse me if it is: Am I (as a male) at any increased risk of cancer given my mother's early and aggressive form of breast cancer?

  • AnnNYC
    AnnNYC Member Posts: 4,484
    edited June 2009

    picardlx, that's not a dumb question at all.  Although breast cancer in men is rare, the men who do get it are more likely to have had a family history of breast cancer than is the case with women.  The BRCA2 gene is especially related to breast cancer in men (the BRCA1 gene less so).  These genes may also increase risk for testicular or pancreatic cancer. 

    Here's a link to some info: http://www.sciencedaily.com/releases/2007/11/071127171305.htm

    You are a great brother to be so proactive about your sister's health -- if you find a High Risk program in Chicago, I would think they would be a good resource for you as well, for advice about screening and testing.  I'm so sorry you lost your mother at such a young age -- and sorry that  you have to have these health concerns -- I hope you and your sister can both find doctors who will take your concerns seriously and give you care that can TRULY ease your minds (rather than blowing you off by not taking you seriously, which only increases anxiety, in my experience).

    Hugs,

    Ann

  • j414
    j414 Member Posts: 321
    edited June 2009

    picardlx -

     If a doctor from a university/reputable hospital (e.g., hopkins, sloan, Mt. Sinai) believes you are high risk, they will argue the point with your insurance company.  And the insurance company will gladly pay for the annual mri/genetic test, because early detection of cancer or genetic cancer risk will save them thousands of dollars.  Deborah Lindner is a a gynecologist in Chicago )(at Northwestern) and she is a high risk expert.  She also sits on the board of Bright Pink and an article of her own high risk status was the subject of a New York Times article.  Best, J.

    http://www.womenobgyn.net/doctors.php

    http://www.bebrightpink.org/bio8.html

    http://www.nytimes.com/2007/09/16/health/16gene.html

  • Deirdre1
    Deirdre1 Member Posts: 1,461
    edited June 2009

    Picardlx:  Your question about your possibly being at higher risk caught my eye.. all of the information above is great but I did want you to know that you could also be at risk.  My father had breast cancer and although he never had the BRCA test when I was dxed with bc I did have it and had to fight with the insurance company to pay for it.  All of the doc's expected it (BRCA) to come back positive since it was my father that was the first generation breast cancer connection but I was negative.  The genetic counselor explained that although there is a very small percentage of men with bc it is often common to see a very HIGH amount of other cancers in the family, and that was so in my case.  My genetic map (something they produce for you when you give them all the family history) showed many many cancers in his family.  It is very possible for the prior generations not to have a "lump" checked out and so something that may have been identified as a breast cancer could have potentially moved on as mets to another organs and only then been identified as liver cancer, bone cancer etc..  So it is very important that you also be tested!  I have a family of 5 other siblings and they were all told to be tested (3 of them male) and watched for breast cancer (as well as all the other cancers).  I don't know if this helps and I certainly am not wanting you to panic but please keep this in mind as your sister goes through her process..  Good luck and I think you two are doing a very wise thing especially since you seem to be doing it on your own and not getting much help for the medical community.  My MRI was approved after I had the genetic map in hand so the genetic counseling seems to be an appropriate place to start.  Your sister could do that and then the map aplies to you as well.  Here's hoping you guys have nothing to worry about!  Best!

  • HeatherF
    HeatherF Member Posts: 2
    edited June 2009

    Dear Pic,

    In my unprofessional opinion your sister should connect with a Certified Genetic Counselor who has an expertise in BRCA mutations. The NorthShore University Hospital (formerly Evanston) has an EXCELLENT genetics group focused on BRCA led by Dr. Wendy Rubenstein. Scott Weissman is a fantastic CGC that who your sister could talk with very easily. Your sister should be treated High Risk given your mother's pre-menopausal BC. This means your sister should be under the care of a Surgeon who specializes in Breast Cancer. Someone like Dr. DJ Winchester also at NorthShore has an amazing reputation...in Chicago there a number of good options. Right now most Breast doctors are suggesting young high risk women to have a mammogram every year alternating with a MRI every year along with monthly self breast exams plus an exam by the Surgeon every year. Your sister may also want to visit the FORCE website www.facingourrisk.org. In Chicago there is a local chapter that meets quarterly. I am actually one of the coordinators for this peer to peer support effort for people dealing with hereditary cancer issues. We hold quarterly meetings and our next meeting is July 25th at Gilda's Club 1pm-3pm.

    I can tell you firsthand taking your own healthcare into your hands is CRITICAL these days. My mother had been 30+ year BC survivor and learned at the age of 58 she had Stage IV Ovarian Cancer. This is also when we learned that she carried the BRCA1 mutation. I then learned that I also shared this same genetic mutation. My mother lost her 15 month battle with Ovarian Cancer but I argue it was not in vain. If she had not been dx we would not have learned about the mutation and I would not have had the chance to do something to take care of my own health preventatively. I am a 30 something mother of 2 lovely little boys who I have every intention of living a long life for...

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